Chronically ill mother’s homeschool approach.

I’ve noticed that sometimes the question of homeschooling while chronically ill is lumped in with pregnancy as if they are the same or very similar. They aren’t. Even if (like me) you have the joy of nine whole months of throwing up left right and centre with some “mummy brain” thrown in – pregnancy is different in one very vital way. No one is pregnant for years on end, and many of the more yukky sides of pregnancy are both treatable and manageable. It is also silly to try and lump pregnancy as an “illness”. It is’t, even if the culture of medical elitism tries to tell us it is.

Chronic illness can be neither treatable nor, at times, manageable – and is way more unpredictable. When you plan home ed through a pregnancy you know there’s a point in which you can pick up again. When you plan through chronic illness it’s a whole different set of challenges.

So, what are the things that you can do if the Boss has called you to homeschool and He’s called you to carry the chronic-cross too? You can tell Him what you think of His plan 🙂 – and then you have to get on with it.

First things first. You see that big pile of guilt you’ve got building up over there. Deal with it. Sort out the fake from the real. Bin the fake and get yourself to Confession for the real stuff. If you are too sick for Confession (and there’s nothing mortal lurking about) you can pray a lot. He’s merciful like that. (even when you’ve told Him how you really feel).

Once that’s done (and yes I know it keeps rebuilding, but keep kicking it down) then you can move on to priorities. Prayer first. You’ll get nothing done without help from Upstairs. He has a lot of friends and relations who can be relied on to keep praying for you too. (Where would I be without St. Bridget of Sweden?) One of the wonderful things about the saints in heaven is that they can still pray, even when you, in fog, confusion and befuddlement can’t. Also we are fortunate that God, who is all wise gets a prayer of “Dear Lord, urdle, flurble mup.”

This little conversation is a good illustration of chronics homeshooling.

An article here asks a mum considering home education when she has chronic illness to think of a few things. It essentially says, pray, have a good husband and get some good fellow home ed mums on board to help out. It’s a good plan.

Yesterday a fellow home ed family came over. I’m still pretty crashed from the mini-stroke last week (TIA) but the mum of this family is completely relaxed around me no matter how wrecked I seem. She makes no fuss and simply does her bit around me. She takes the mic and allows me the space to do stuff when I think I can give it a go. Friendships like this are rare and to be treasured (so thanks Jo!)

This is another excellent article looking at a number of seriously chronically ill mothers coping with home ed

Then you must trust. While riding the trust you can plan for what curriculum you need to buy because you aren’t well enough to make it, teach it or organise it. All I can say on this is God Bless America! The UK has a shorter history of home ed (although it’s been around over 25 years) and has almost nothing of quality home ed resources sadly, (I think the awful national curriculum bares a lot of the blame – thanks Maggie Thatcher!). So, look at the American stuff. There’s a lot out there and yes it’s expensive (compared to making your own) and yes, most of it needs shipping and therefore costs are even higher and add the recent sneaky tax on educational materials in the UK and you’ll be in debt – but God never said debt was a sin; whereas not providing the best education you can for your children can be. You do need to plan your debt so you can pay it off, but I haven’t found a way of importing stuff without needing time to pay it off. It’s still a good option done with prayer, discernment and care.

Find ways to make resources do more than one job. Find ways to make cheaper resources when you’re well enough.  One of the things with most chronic illnesses and even acute ones like cancer, is there are good moments when you are more capable. Use them as best you can. I use those times to make and plan stuff that when I’m too sick I just can’t do.

But wouldn’t it be easier to sent them to school?

Not necessarily. First of all you would need to have a school that meets your children’s needs so you don’t have to undo the damage and do the home ed after school because not much ed has taken place in school. (Been there, done that; don’t fancy a repeat) Then  you’d need the energy to take and collect the children every day and cope with whatever fall-out the day has in store for you. That was hard enough when I was well!

Giving your children the best education you can give them is worth a lot and not having to undo stuff from school is a blessing.

Finally, all you can do is plan, pray, trust and take it one day at a time. I know more than one chronically ill mum who home educates children with some serious educational needs such as severe autism. Let them be an inspiration- not a moment of “Yikes! Why can’t I be that good?”

Dysautonomia – what did you say that was?

Here’s quite a good explanation of the basics of dysautonomia. I notice she includes CFS (chronic fatigue syndrome) in the list. There is good science behind the idea that fibromyalgia is dysautonomic as it looks to be a form of hyperadrenergicPOTS. But I wasn’t aware that CFS has been included. It’s not that surprising though as some doctors (one in Australia that I can never remember the name of in particular) insist that up to 96% of patients with a dx of ME/CFS have some form of dysautonomia. But as Ramsay felt that a dx of dysautonomia meant a patient couldn’t have ME it’s a bit confusing.

Symptoms are very varied to the point where it has been said that each patient is different and certainly my Cardiologist agrees with that.

Death rates have not been measured although it seems to have a similar rate of suicide to other poorly treated chronic illnesses and there are a number of reports of sudden death similar to those associated with ME/cfs. As many of us have serious lung and Blood pressure problems it doesn’t seem that surprising that deaths happen. Studies in ME/Cfs show that heart failure is the number one cause of death with suicide coming in joint second with cancer – some more unusual cancers being oddly common among ME patients.

Talking anecdotaly I have come across a few people with a single diagnoses usually POTS or IST without blood pressure problems or anything else. The symptoms of POTS and IST can be pretty horrible on their own but there’s definitely a difference in degree compared to those of us with ME/Cfs and/or fibromyalgia to go with it.

Most people I know with ME have some kind of orthostatic intolerance. Mine is pretty bad these days. Can’t stay upright for very long without becoming nauseous, light headed breathless and blacking out (pre-synocope).

I don’t know what the end result of any research will be. There are tentative (poorly funded) moves to separate out the various forms of ME to get more accurate dx and hopefully treatment. It will very likely show that dysautonomia is either a form of ME or caused by ME or isn’t ME, but is dysautonomia.

One day we hope there will be suitable treatments that can put us into remission. But so far, that just isn’t the case.

Saw a GP today and hit the “they don’t know what to do” wall. Back on steroids but feeling pretty fed up. She did say she’d talk to my usual doc but she really wanted to refer me to another (insert very rude word here) neurologist. I refused.  Presently sofa’d – hope the steroids help.

It’s not the anger, it’s the guilt.

Someone I was in a short email correspondence with said that if it should happen that he became seriously ill, he would be very angry. I have to say, I doubt it. I don’t claim to know the inner emotional workings of the man who wrote this, but I do know how chronic illness works, and believe me, anger is a very tiring emotion and therefore not one that is tenable, for long periods of time. I’m not saying I’ve never felt angry or seen anger expressed by fellow Chronics – I have. Those of us who have rubbish or even abusive meetings with doctors will express justifiable anger; and sadly that happens far too often. But that’s just for those times.

The feeling or sense that bugs me much more of the time is guilt. I don’t know how ubiquitous this feeling is among us chronics, but it’s fairly constant with me, and as I think I’m pretty common, I am guessing there are others out there who struggle with it. I am not going to go into all the reasons I feel guilty, nor will I explain those awful moments when it comes to a head and I become a gibbering wreck. You don’t need to read about that.

This is not Catholic guilt. Wish it was – ‘cuz Confession cures that 😆

No, this guilt is about all the things I used to do that I can’t do. Some of it isn’t just guilt it’s a kind of jealousy of others which in turn leads to guilt; not just about what they can do I can’t, but guilt over the jealousy as well as guilt over not being able to do stuff. Quite a complicated mess for a brain-fogger to handle. Tiring mess at times too, leaving little left for something like anger.

So, how to deal with it.

First – a reality check. Sometimes things are bloomin’orrid and that’s life. So, accept reality. Don’t paint it worse than it is, and don’t run and hide from it. Get down with Fr Fran Fortuna’s Everybody Gotta Suffer and accept. This is easy to write and difficult to do, but it is, honestly, worth the effort.

Second; don’t assume that other people are cross that you can’t do what you used to do. Projection is a bad coping mechanism and is more likely to make the picker-upperer (there’s a word that just needs to exist) of your lost ability more cross with you than the business of picking up where you left off.

I know that many people are not projecting – that their friends and even family do tell them they are lazy, need to try harder, pull themselves together. The most difficult thing here to to stick with reality and accept that they are the one with the bad attitude and it isn’t your fault.

Third: Don’t give up because of the silly guilt. There is some mechanism in false-guilt that leads to fear. So, the temptation is, to throw up your hands (or just one if the other one won’t coordinate) and cry “Forget it! I give up!”

Take the good days and enjoy them. I’ve had odd days when I can play the piano again and even cook a meal once in a while without burning something, leaving something raw, filling the kitchen with smoke or killing any of the kids.

Lastly but most importantly of all be grateful.

If you just threw something at the computer screen, take it back and think a minute. There are still good things in life, even with chronic illness. I’m not saying pretend things are better than they are – but just be glad for the things that are good.

If you have reached that awful point where you just can’t see anything good then look for something small – a flower in bloom, a slice of cake or even the smell of rain. Anything that holds something good in it.

Finally it’s worth remembering that for people with ME/cfs and some forms of Dysautonomia that emotions can get a bit weird. Mood is heavily influenced by things like how our adrenals work, serotonin uptake, how malnourished we have become because of a busted metabolism and the generally busted HPO axis. This, coupled with mood changing drugs such as steroids can have quite an effect on our coping skills.

All we can do is keep at it. One day at a time – and on bad days one hour at time.

PS. I think I mentioned in a post where I’d seen the Cardiologist that I had decided not to have the tests for hyperadrenergic POTS done because they are very complicated and need lots of time and very skilled people.  Jackie’s very informative post here gives you the info on the tests.

ENDNOTE: I may also have mentioned that I am now on 10 mg twice a day of Ivabradine and as the max dose is 7.5 mg twice a day I spent a long time in the hospital pharmacy with my son.  Well, first repeat prescription request has hit the wall as the pharmacist is having the heeby-jeebies over handing the stuff over. I had written clearly on the the request that this was the Consultant Cardio’s decision and had been okayed by the hospital pharmacy and I assume the letter is in my notes by now – but it looks like there’s still some sorting out to do. I only hope this isn’t going to be an issue every time I need a repeat.  No anger or guilt – just frustration!

Thinking and speaking and the major obstacle of the phone.

I lose my voice on a regular basis- in fact I have no voice right now – and my husband rather likes it. Cheeky divil! (as m’gran would say). Then there’s the entertaining aphasia in which dishwashers become fish-dishes and disappearing boxes as my dd so eloquently relates. Along with this are the times when the words are there and I can’t get them in the right order to make sense, or when someone is speaking to me and they sound like the parents in Humpf “blah blah blah”. I know they are saying real words but I just can’t make my head work out the meaning. This happens more often  and is much worse when I’m tired or when I’m on the phone.

I slur my words like a drunk and mix them up so I can speak like Yoda.

And what is it with the phone? I think it must be that the only clues my brain is getting is spoken language, and because I can’t see the person speaking, it’s much harder to understand them. There are plenty of times when this isn’t a problem at all, but at other times I have to really concentrate hard to understand what someone is saying to me and sometimes I say something banal in reply because I just don’t really get it.

I am not sure why, but for long periods of time I can behave like a sane person (my children may disagree). I can enunciate and use the appropriate vocabulary for the occasion. I sometimes have the skills I had when I worked, taking messages, handing out complicated information (in two languages) and generally looking and sounding efficient. Then out of the blue – it’s all gone. Worse still, I can’t always tell beforehand that it has gone , so I’ll answer the phone and be struggling to make sense or understand the other person.  The fish-man can phone and I am struggling to remember what a fish is, let alone whether I want to order any.

My children are remarkably patient. My husband has a wicked sense of humour over it but that keeps it from getting too scary. I still tease him about the night he came home to find no dinner cooked and me unable to string a coherent word together, let alone a sentence. He looked at me with that face he does and said, “I’d better get a takeaway.”

I’ve got an appointment with a speech therapist in October. She’s supposed to be assessing me for some kind of larynx dysfunction. We’ll see what happens there.

THIS SITE on Dysautonomia has just been shown me. It’s pretty good, clear info on the joys of having this silly illness. All I would say is the advice about salt should be taken with extreme caution; salt is for people with neurally mediated hypotension and low blood volume which usually manifests with narrow pulse pressure. Those of us on the other end of the dysauto scale with hyperadrenergic stuff going on; hypertension; or like me rapidly fluctuating blood pressure, and wide pulse pressure (had one of 80 recently YIKES!) should not be taking salt. unless a doc has noticed sodium issues and that needs proper treatment anyway.

I do get salt cravings- I know this happens with other dysauto folks too. It is more likely due to electrolyte imbalance than a genuine need to grab the Marmite. Try Diaoralyte instead m’dears. (Marmite tastes better…)

Hospital Appt; interesting discussion on research and treatment.

There are times when having your nose into a fine piece of well controlled research can raise your hopes that answers are really out there. Reading something “famous” from the Lancet can soon remind us that much that gets published is so badly done, it beggars belief.

I’ve been reading and listening to lectures on the HPA axis for some time. It’s all very fascinating and the findings of people with dysautonomia and Fibromyalgia having problems with dopamine production, uptake and re-uptake all looks promising. But promising and having the promise fulfilled are two different things.

I saw the Prof today – a rare Cardiologist who can both dx and treat some of the heart related aspects of dysautonomia. The first very good thing I’ll say about him is he reads up what’s been happening so he knew what things were like before I went into the room. He knew I was on even more steroids and antibiotics (2 infections this time – lovely). He knew about the Respiratory Consultant and the tests I’ve just had. So, lots of time saved without me – in slurry, blurry mode having to try and explain things.

He looked at my BP/HR/Pulse pressure chart. I’m on the highest dose of Candasarten and Ivabradine already. But thanks to the complications that come with this, my HR is still over 100 a lot of the time and spiking up to 150 now and then. Not terrible and not as bad as it was, but still not right. So he’s decided to up the Ivabradine to 10mg BD. This is going well above the max and so we had a long wait in Pharmacy while they questioned him over it. I don’t think that’s a bad thing; having double checks especially for situations like this is a good safety measure.

We talked about the tests for dopamine because my tremor is really bad. But he agreed there was no treatment, and so the tests weren’t going to help me whatever they showed. I can live with this. If I know there’s no help for something, I can get my head around it and put up with it. The hyperadrenergic side of things is being indirectly treated anyway. He doesn’t mind that I read the research- which I appreciate.

I asked him about my weight as well. I eat twice a day (breakfast and dinner or lunch and dinner) and still my weight is creeping up. I’m also getting worse edema in my hands, feet, ankles and back of my legs. On bad days my knees swell up as well. He thinks a lot of the problem is the massive amount of steroids I’m having to take and until we can get around that, I’m in trouble.

So, I haven’t exactly come away with good news, but I do feel that I know where I stand with this shambles of a disease. I refused hospital admission last week because I knew there was nothing they could do extra in the hospital right now. My poor GP…but he agreed with me in the end.

The bottom line is this; I know what this disease is doing to me and I know that I have three good docs; my GP, Cardio and Respiratory docs and they are doing what can be done. After that I have to accept this. Sometimes it is overwhelming and I get a bit fed up – but having a doctor who accepts how bad it is and doesn’t try and play silly games can make all the difference.

It was lovely that Alex could take me as well. We could do some catching up. He’s a very happily married man 🙂

 

Hospital Appointments +++

It feels like the holiday happened an age ago. I have had, and still have, quite a few hospital appointments to jump through.

The poor Cardiologist was off sick when we turned up the day after we got back. Thankfully he’s ok now and I’ve been rebooked for early September. The following week I was back for lung tests.

I had forty minutes of breathing to do. It was hard work!

First of all I had to do some resistance tests with the machine shown here. It’s the same machine I was on last time for more basic tests. This time the tests were to see how my respiratory muscles were working.

Then there was the “sniff test” which was to see how my diaphragm is working. (scoring 19 and 21 mostly. No idea what that means).

Then he went off and wheeled in a machine that looked like something from a 1950s scifi movie. Unlike the one in this photo it was beige not as new looking.

I think it was measuring lung volume and other stuff. Anyway, first tests were sitting up and then the really difficult ones were lying flat. I don’t have the skill for lying flat and breathing at the same time! I sit up at night now. If I end up flattened out my lungs wake me up demanding I sit back up.

So it was a case of do a breath – then sit up to catch a breath. The chair was like a dentist chair so it went up and down!

Glad when that was over.

Results to be sent to the Respiratory Consultant. We’ll see what he says.

Meanwhile he had referred me to a throat/voice person at a different hospital. I have a lump that I can feel in my throat, around the area of my voice box. It’s not painful or anything like that, but it is annoying. It effect my swallowing and I wonder if it’s the reason I lose my voice so much and the back of my tongue goes numb. (One of my weirder symptoms. Whoever heard of a numb tongue!) Also could be causing the ear pain/ irritation. Who knows?

He warned me the waiting list was long so I was surprised to get an appt for the end of September. Pretty good I thought. Then they phoned a couple of days ago and have brought my appointment forward to Tuesday.

Meanwhile today I saw the Rheumi about the possibility of Lupus. He was a bit odd. He doesn’t think I have Lupus but he had an armful of bloods done which was pretty good of him. He seemed to think a lot of it might be the Fibro. I told him I was contesting the ME dx and he said he doesn’t use the dx of ME but says CFS or PVF but doesn’t think either of those dx are helpful as fatigue is rarely the root problem.

Well I agree that CFS is rarely a useful dx as it was a politically made up one. I think there’s evidence of Post Viral Fatigue from serious viral  disease.

I disagree with him on ME. I think it’s very clear that such a horrible disease does exist. I just don’t think I have it (or I certainly hope I don’t. It’s bloomin’ orrible!)

He then went on to say he didn’t think I should be on so many steroids. He didn’t come up with what I should do instead. I had already told him my GP tries to not keep prescribing them but you know breathing isn’t an optional function. Anyway I am very fortunate to have found a good lung doc at last.

My heart rate and BP are looking better though which is good.

So far I only have one appt in September which is really good as I usually need a month to get the home ed rolling neatly.

The poverty diet; charity and neighbours part II

In all traditional cultures food is at the centre of sharing with family and friends. People sit around a table and talk together while food is laid out and passed around. The whole notion of food and sharing so much part of Sikh culture that the Gujarati Temples have huge kitchens were everyone gets together and make curry and rise and roll out chippati’s together.

The agape meal isn’t so much part of everyday Christian practice these days but many churches do have bring and share meals and Lentern soup gatherings.

Eating together as a family is so important and I am sure I read studies in the past that said families who eat together (without the TV) tend to eat better food.

The difficulty of overcoming the poverty diet, it seems to me, isn’t just about lack of money to buy good quality food, it’s about lack of culture. It’ is much easier and actually cheaper for a lot of people to pool resources and eat good food than for a lot of individual people to buy enough for one. We need to build communities again.

I love the idea of Guerilla Gardening where people get together and plant fruit and veg that anyone can use. This was highlighted by Hugh Fernley Whittingstall of River Cottage and he also managed to bring a community together to run a small garden and homestead which included pigs.

There’s a lot of vacant land around cities which just attracted trash and rats. Helping people get together to grow good food has got to be a better use for the land. Getting communities and families to work together could mean the old lady who doesn’t eat any more can get visited and fed. It could mean the single mum stuck in her horrible flat all day with her little ones, can get out and do something with her children and be supported.

Shared gardens could help some of this too. It could mean that the able bodied people grow the food while the old lady and the local cripple (that’ll be me) can shell peas and wash veg and someone a little more capable can cook and maybe can the food.

People on benefits can quickly loose their sense of self respect and dignity. This is helped by a hostile media and just the general nastiness of other people. I am sure many people who can’t find work right now, or who have been too sick to work (especially with mental health problems) should be encouraged to grow food, and keep animals in a community setting without there being any threat to their benefits. In fact it could be a good way to help people feel they are earning a wage rather than merely picking up dole.

All this needs to be done at local level, through parishes or local community centres. Religious orders would be ideal for setting up this kind of work. Subsidiarity works well if only it was tried.

The poverty diet, charity and neighbours.

This article on how chronically sick people (specifically those with ME in this case) find themselves poor and therefore relying on cheap or free food, making them sicker for longer, opens a can of questions.

First of all, we know from other studies and just knowing people, that the poverty diet is part of the everyday life of a lot of people regardless of their health when they became poor. The rise in rickets, malnutrition and even the return of scurvy to Britain is surely a sign that we are getting it badly wrong. The exponential rise in people having type 2 diabetes is surely linked with the poverty diet.

Now food must be handed out to the poor from Government distribution systems such as food banks, so that people don’t starve. We have a food bank opening up just up the road where my oldest daughter will volunteer.  There is no famine, no war, no massive shift in the population and yet many people can’t or don’t eat healthy well balanced food, and food prices are getting very high indeed.

It’s not just because people are poor. A lot of the problem is that food quality is so bad, and cheap food is often barely food at all.  We have poisoned the soil and our fruit an veg have sucked up pesticides for so long that rinsing them under the tap or peeling them is pointless. We’ve known for years that industrially farmed meat is bad for animals and for those who eat them, but it’s still more expensive and more difficult to find free range meat and organic meat is out of most people’s regular price range.

Being fat is not the biggest problem we face. Being sick because we can’t get the right minerals and vitamins to keep us from being very ill is the problem. The poverty diet becomes a vicious circle. You can’t eat healthy food, so you either stay sick, get worse or become sick; then you are too sick to earn more money, or to keep your job, so you stay on the poverty diet. Worse still, being ill can prevent a person being able to cook properly and so getting easy food becomes a habit.

Poor diet has been implicated in the massive rise in depression. The quick fix approach to this serious disease is to hand out prescriptions of antidepressants all of which have the side effect of weight gain. In women poor diet leads to hormonal imbalances which are always treated with the sledgehammer of chemical contraception, with the side effect of weight gain.

Then there are those of us on loads of steroids and yes, you guessed it, weight gain is a major side effect.

We’ve known for years that starvation diets and starvation in “real” situations has a negative effect on metabolism and we know that poor quality food effects both physical and mental health but still starvation diets are advertised as a good idea, and it’s only recently that any move to improve the quality of hospital food has happened.

It has also been well known for a long time that starvation effects metabolism and so people who have been starved often end up heavier once they can eat a normal amount because their metabolism is used to conserving energy. Couple this with the rise in diseases like Dysautonomia and ME which effect metabolism and the problem is made worse. The question remains unanswered (unresearched thanks to the way food is distributed by very big and powerful business) on whether diet is at the root of the exponential rise in autoimmune diseases. It has been noted that in Asian and African countries autoimmune disease is rare, but in Asian and African populations living in the West it’s on the rise at a shocking rate.

The BBC are repeating the interesting mini series documentary “The Men Who Made us Fat” alongside a new doc “The Men Who Made us Thin”. Obviously it’s the BBC so treat with caution but the questions raised are valid.

Now that the cause for dear ol’G.K.C. is finally moving ahead perhaps we can get ourselves a patron saint of fat people. There is a story that a lady approached him rather crossly during the war and demanded to know why he wasn’t out at the front.

“Madam,” responded GK, “If you walk to the side you will see that I am.”

On the buses. Adventures in Disability.

Whenever we go out, especially somewhere new my dh calls it “an adventure in disability” because we have to find the most accessible route. Back home I don’t use public transport much. I haven’t been on a bus even with crutches because my balance is seriously off and in a wheelchair – I just can’t face it. Even using the local train service can be difficult. Officially I am supposed to give the train service 48  hrs notice if I want the ramp. I don’t know why.

But here in Edinburgh it isn’t at all wise to try and take a car into town. So we use the buses. But it’s not a nightmare at all.

The buses have a ramp that slides out and then there’s a place I can park on the bus. Easy.

I think I would still need someone pretty strong to help though as getting in and out of the space requires a lift and turn as it’s 180° in a small space. But the drivers are all sensible and don’t hurtle at bus stops, which makes it easier for the children and me.

Thanks to the buses being very regular they tend not to be over  crowded even now, at the height of the season, and that makes it all the safer and easier.

I seriously recommend taking a bus up the Mound if you are wanting to get to the high end of the town. It’s bloomin’ steep and quite frankly even if you can get to the top, coming down is downright scary. The bus avoids all that and it also means you can avoid the torture of cobbled streets under your wheels. No cobbles is bliss!

The National Museum of Scotland has very good toilets for crips. The doors aren’t too heavy and there’s plenty of space to maneuver the wheelchair. The bars are sturdy and don’t rock as you try to grasp them.

The crip toilet is also the baby changing area and I know some disabled people disapprove of that but it doesn’t usually bother me. In the museum the room was big enough to cope with the changing table and me in the chair without me bashing on the folded table.

So, good adventure in disability.

Back to the steroids, or not?

I was given a script for Prednisolone to keep by for those sudden onset emergencies. The idea was to help prevent my rather inconvenient (to me, the kids and the doc) sudden requirement to turn up at the GP for the nebuliser and   the inevitable script for yet more Prednisolone. The heat hasn’t helped my breathing. My lungs are having a hissy fit and while my dear ol heart and BP seem fairly stable (whoo-hoo) (for now – I am nothing if not a realist) my lungs are squeaking wheezing and waking me up at night demanding air. They are showing signs (again) of being too idle to bother to breathe unless I’m awake to help them. Honestly, you can’t get the organs these days!

The Big Pillow is back on the bed. This works a bit like calling in dad – the Big Gun- when teenage boys got a bit too big for their already over-sized boots and dad needs a word. So the Big Pillow keeps me more-or-less upright at night so I can breathe and then if I slip my lungs are quick enough to wake me up demanding better posture and more air.

Originally the pillow was a breastfeeding and baby nest thing so it’s big, and firmish. I recommend them for you fellow lung-lubbers.

Now, I hate taking steroids and up until recently I have also loved the little things. You see, while I am acutely aware of the nasty side effects and the long term nasties in particular thanks to a looooong history of taking steroids orally, intramuscular and IV I also am aware that they work like a minor miracle; not just on my breathing but on pain and that bone grinding feeling that goes with it.

As most of the side effects are part of my “normal” illness anyway I haven’t noticed much other than the weight gain and the moon face. I can spot a fellow steroidy by that face.

So, back to the question at hand. I have the Pred in my drug box. I am struggling to breathe and I have two reasons to take them. First – it might help avoid a doctors appt or an emergency doc appt. and second, we’re off on holidays soon and I don’t want to spend the hols doing a magical mystery tour of Scotland’s NHS provision. It won’t be good for the family.

My dh says everyone will take it in their stride if I need to sample the NHS up north. And I’m sure he’s right. But we are off with 5 of the children and a girlfriend. I would rather steer clear of stethoscopes and hissing masks.

Is that a good reason to take the Prednisolone? Because I’m a bit (ok, quite a bit) worried about wrecking the hols for everyone?

Who knew that taking drugs could be a moral or ethical question?

Having written all that my lungs have made the decision for me – back on the Pred.

On a side note, the Respiratory Doc has spotted that some of my breathing problems are not just asthma. He is a bit concerned that I’ve been on almost daily high doses of steroids for months and months and wants to separate out the asthma – that needs steroids and the other stuff that might need something else.

While there’s definitely the Lump in my throat around my voice box thing at the moment I am pretty sure it’s asthma.

Lung Specialist appt.

Off we went to the Three Toilet Seats on the Hill, otherwise, more properly known as the QE. I saw The Respiratory Consultant who is a Colonel in Her Majesty’s Forces. I must admit to giving myself the “talk” before we went. The “talk” consists of quiet practicing in being able to stand up for myself and cope with rude, ignorant doctors who give a very good impression of having either never been to med school or to have slept through it, while contracting a serious case of Narcissistic Personality Disorder. So, I was ready.

He was very nice, polite, sensible, knowledgeable and respectful! It’s not just the Prof who is good at his job!

The Colonel allowed me to explain what had been happening and because he was listening he was able to spot some of the things I thought might be happening. He accepted my claim that some of the breathing problems are orthostatic, in that I am more breathless when upright – but not wheezing. He wasn’t fazed by IST and Dysautonomia.

I tried to explain the difference between the “obviously it’s asthma” stuff and the “what is that?” stuff. He picked up on it straight away and talked about the sounds made when the voice box isn’t allowing air through! He described the sounds and problem and that was spot on.

I’m to go back for more tests. At the QE I’ll have tests to look at chest muscle function. That’s interesting as it would touch on ME. I still want to ditch the dx of ME because of the politics around it, but if it is shown that my muscles are part of my breathing problems that plays into the biomedical evidence for ME. We’ll see what happens. He also wants to see what my diaphragm is up to. If it isn’t working properly that too ticks a bloomin’ ME box.

Meanwhile I am to be referred to a voice and speech specialist at East.  Let’s see what she makes of my voice, swallowing and talking problems. The Colonel obviously thinks she’s a good’un so I think I might allow myself some hope there.

My previous tests showed asthma and something else, not yet definable. But today my SATS were 99! I’ve NEVER had them that good before! It’s interesting to see that when I feel better that the easily testable things like SATS, BP and HR also look reasonable or even good. It should mean I can measure fairly easily when it’s going badly and when it’s going better. Whether this will make life easier with doctors I don’t know – but, God in His mercy seems to be allowing me to see some real doctors at last.

So, more tests, awaiting voice and speech appt and I’m to see the Prof and Lupus Rheumi next month. I do hope all this is leading to some answers. I feel like I moved forward knowing I have a form of Dysautonomia. I want to remind the Prof about the hyperadrenergic tests and then we’ll see.

I know there’s no cure, but I can’t help a little hope that I could function better than this.

Ramsay’s Disease – the efficacy of Evening Primrose Oil and the Exercise idol (pt2)

Ramsay’s Disease is authored by Dr Simpson who has done years of research and Nancy Blake who has ME.

(Ramsay’s Disease blog entry 1)

Dr. Simpson points out the various studies that show the efficacy of fairly high doses of Evening Primrose Oil in enhancing the fluidity of blood flow.  Fish oils had also had some success, he says.  There have been studies showing that high doses of EPO can assist women with premenstrual tension. It has also been shown to improve luteal phase defect probably because of it’s action on prostaglandin. I already knew about the latter studies and this is why EPO made it into the BNF a few years ago – don’t know if it’s still there. Simpson doesn’t mention luteal phase defect, but then he isn’t writing about fertility problems, he’s interested in blood flow and capillary size in people with ME.

He proposes that “people who develop ME have the anatomical feature of smaller-than-usual capillaries in those parts of the body which become dysfunctional and manifest symptoms…” which seems fair enough,and might go some way to explain why more women than men are dx with ME, (and that’s before you take the different hormone balances into consideration) and then he continues with “after exposure to an agent which initiates changes in the shape populations of red blood cells.” And that leaves us with the mighty question what agent?

I don’t remember being ill before I became ill (if you get me) I didn’t have the classic “flu that never went away”. I didn’t even have the equally common “virus that went away and came back and then never went away” either. I was fine. Then I couldn’t walk and was in terrible pain and other weirdness; but nothing obviously viral.

If Simpson is right and small capillaries are part of the problem then that makes me wonder how many of us were harbouring the problem until something (I suppose the “agent”) triggered it. I’ve always had what adults around me called “poor circulation”. It means I tended to have colder extremities. But that was it. Nothing like the Raynaud’s I now have or the POTs rash and blood pooling or the purple feet and knees, as adverts of my dysautonomia. That’s new. But if I always had circulation problems then that would tick a Simpson box about overly small capillaries.

All of this would lead to poor profusion and explain the muscle fatigue – moving from aerobic to anaerobic at the least provocation; raising lactic acid and of course leading to a crash (PEM/PENE)

Simpson does not claim that taking Evening Primrose Oil could or will cure ME. He’s aware of the complex and just plain nasty side of the disease, but EPO could help blood flow and this should lead to some alleviation of some symptoms.

The lack of acknowledgement of much of the research and complete lack of follow up is frustrating.

At the end there is a discussion of some of the deliberate hurdles and obfuscation that has been put in the way of a proper diagnostic criteria and treatment plan.

As the author notes, if those people who came forward to take part in the much discredited PACE trials were excluded if they suffered Post Exertional Malaise (PEM) sometimes called Post Exertional Neuro Exhaustion (PENE) were excluded from the study then not one participant actually had ME! (cf loc 5185 90% Kindle edition)

The book ends with a very good commentary by Nancy Blake whose professional background is in psychiatry. She points out that a tick box approach to diagnosis is not a good way for medics to decide what is happening or how to help a patient. She also, rightly, points out that labelling people with ME as having a psychiatric disorder without any history of precipitating factors is not going to be accurate.

Misdiagnosing people with ME as having a completely made up dx of Somatoform disorder is deeply unethical. Ms Blake doesn’t challenge the existence of Somatoform disorder in her criticism of it’s use to label people with ME, but frankly as there is no evidence the disorder exists at all, you have to question the motives of the doctor who uses it.

She goes on to note how research is heavily hampered by the downright silly mess of diagnostic criterias available some of which, such as the most ridiculous one, the Oxford Criteria do mention PEM but don’t  have it as required.  This means lots of non-ME are misdiagnosed with ME/cfs as well.

She writes:

Fighting against this illness in the way that medicine and convention expect us to will ensure that we lose not only the battle it also the war – in the short term, we will get worse. In the long term, we may end up among the 25% who are completely disabled.”

I have to agree. I did what I was told at the beginning of all this and now I am much sicker, and more disabled than I think I would have been had I listened to what my body was telling me. There are so many other patients who tell the same story.

Further reading

A story in the Telegraph about a woman who died from complications of  ME

Ramsay’s Disease – ME as it was before the CDC’s politically motivated CFS dragnet was thrown.

I have a dx of ME, but I don’t really know if I have ME. The doctor who dx me did so by accident when I went to see him about the worsening symptoms of my already dx Fibromyalgia. I was getting sicker and sicker and wanted to know how to stop it. He was a truly nasty piece of work. and I came away, not only with no answers, but no hope. Thankfully I’m a tough ol’cow and I bounced back. But I am still left with the question; do I have ME? And this is coupled with the question, “What is ME anyway?” Ramsay’s Disease – Myalgic Encephelomyelitis and the Unfortunate Creation of CFS by Simpson and Blake is a good insight into the research Dr Melvin Ramsay  and Dr Simpson had carried out in England up to and beyond the Royal Free ME cluster outbreak of 1950. His work of blood rheology showed very clear signs of a good biomarker test for ME even back then. His work, however, was sidelined as the psychiatric lobby, linked to the American Insurance Industry and British Government’s welfare cuts took over. A brief but accurate timeline of events shows some of the bizarre and unprofessional behaviours from members of the CDC in the 1980s but also notes a strange attack on people with ME by a couple of pyschs in 1970 (McEvedy and Beard) who tried to insist the Royal Free Hospital cluster and other cluster outbreaks of ME was “mass hysteria.”

♠ ♠ ♠

Nancy: Appropriate treatmet for ME should include a prescription for rest immediately upon becoming ill…” (Kindle loc. 3454 60%)

The understanding that patients with ME did(do) better with enforced rest at the beginning of the illness has been repeated over the years, most notably by Dr Nancy Kilimas (an HIV/AIDS specialist who has done lots of work on ME, especially when she noted that her patients with ME were as sick from the start as her end stage Aids patients). Even anecdotally I can see people with ME who have gone into remission after having gone to bed when they became ill. Research into patients who have gone into remission is sadly lacking; but then research into people with ME is sadly lacking altogether.

Studies suggest that those who get ME younger have a better chance of getting good remissions. Sadly this simply isn’t the case for many children and teens with ME and some of the deaths from ME are in those young ones.

The central theme of this book seems to be the blood rheology results showing that people with Ramsey’s criteria for ME have misformed erythrocytes (red cells) which in turn leads to poor profusion, especially in the brain. The problems with blood flow offered a good explanation for a lot of the memory, language and other neurological symptoms of Ramsey’s ME. Strangely (or not) Simpson a researcher in this area had problems getting his blood rheology papers published despite the slides showing the cup shaped cells. He found that editors of medical publications couldn’t accept red cells could change shape (leaving me wondering what they made of Sickle Cell and Thalassaemia).There have been some papers published on this subject not related to ME Considering the appalling quality of much of the so-called research into CFS and/or ME that is published, it’s a bit odd that Simpson’s papers weren’t published.

More recent findings back up Ramsay and Simpson’s blood findings and this coupled with studies showing small capillary problems points right back to their work again.

Having reached the part in the book where patients climbing three flights of stairs to reach the doctors office and then having very cold hands and blurred vision, I am reminded that all ME patients are not the same. There’s no way I could make it up three flights of stairs!  He goes on to say

Although much was written about “autonomic manifestations”, in the terms of Ramsay’s criteria dysautonomia would have excluded a diagnosis of ME – but if there were a systemic problem of blood flow it could anticipated that capillary blood flow in the nerves of the autonomic nervous system would be impaired.”

I am not sure whether the author is saying that those of us who have a dysautonomic dx can’t have ME or whether the blood flow problems found in Ramsay criteria dx ME patients lead to ANS problems anyway so ME and dysautonomia go hand in hand. There’s a lot of us with dual diagnosis – and getting diagnosed with any dysatonomia is difficult because most doctors haven’t a clue it exists or what it is.

Recent findings in research into women with fibromyalgia seem to back up the blood flow findings of Simpson et al (this report in Medical Daily on the research is clear – you can mute the annoying advert in the sidebar. You might also want to skip the ridiculous cliche “patients aren’t lying after all-shock” introduction.)

I’ll write more later. It’s time for a cuppa.

Further reading:

Erythrocyte Rheology article in BMJ (opens Pdf)

The Fish-Dish (my daughter’s observations of my aphasic moments) (Nb. Please go to the toilet before reading this).

Misuse of antibiotics – again.

The angst over the misuse of antibiotics has tended to be focused on poor old GPs while the shocking misuse in farming gets ignored.

Now we discover that some bright spark put antibiotics into ship paint presumably to reduce the need for drydock so that more money can be made faster.

The fact that there are more antibiotic resistant infections has been well known and well documented for many, many years. We’ve seen new strains of TB and of course the famous MRSA among others. So many patients are finding repetitive infections are no longer responding to antibiotics and the choices they have to fight infection are getting narrower.

Usually the media concentrates on the mythical patient who demands antibiotics when they don’t need them.  My personal experience is that people try NOT to take antibiotics unless they just can’t avoid it.  Frequently doctors refuse antibiotics to people who need them, leaving them to get so sick even a doctor can’t miss it and then they are given a stupidly short course of a broad spectrum antibiotic which, unsurprisingly, leads the patient to need to return to the doctor for a second course a couple of weeks later.  Despite the fact that we all know this happens, the policy remains in place. As far as I can see, this policy is simply a way to help infections become more resistant.  Making sure the infection is completely killed off, has to be a more sensible approach.

For those of us with compromised immunity it’s a recipe for disaster. As we suffer repetitive infection, helping strengthen bacteria with silly approaches to antibiotic use.

I don’t know how dangerous antibiotic paint really is. I do think the massive over-use in farming which allows for poor animal welfare is a genuine problem both for animal welfare and human health. But I do think the way antibiotics are prescribed by doctors is silly. They seem to have their hands tied – if they prescribe properly some daft MP will shout they’re over prescribing, but if they don’t prescribe when it’s needed, then people like me are left sicker for longer and sicker than we need be.

If there really are patients out there demanding antibiotics when they don’t need them; well, doctors can refuse. They could also take blood and sputum for testing; and then fewer mistakes would be made surely.

I wonder if those who demand a script are fearful of taking time off work. Perhaps a more realistic approach to sickness might help. One in which sick people keep their germs to themselves by staying home a few days. The love of money is the root of spread infection.

Ivabradine for Inappropriate Sinus Tachycardia 7.5mg BD: 1 month on.

I’ve been on Ivabradine (aka Porcolaran) for three months now, but only on the full dose of 7.5mg twice a day for a month. So, what’s happening?

Most of the time my standing heart rate is below 115. Sometimes I get spiky days when it’s up to 120 but I haven’t seen anything more than about 120/122 even on bad days.

Resting HR hasn’t been as good. It’s still often around 95-100 but I have had some lovely 75-80 days.

Unfotunately, for some reason, my OI symptoms are worse. I am blacking out more often and simply can’t stay upright for much more than ten minutes at a time without presyncope, severe breathlessness, blood pooling and other nasties. I have no idea why this is so when my HR is coming down to more sensible levels.

My tremor is much worse when I’m upright too making me wonder about those standing dopamine levels I wish they’d check on. Gravity and I don’t get on very well.

My mid-afternoon crash is getting worse too, where I have to half lie down on the sofa because it’s hard to keep my head up. Not every afternoon, but more often than I used to.

I don’t know whether this is the Dysautonomia side of things or the ME side. My BP is still generally high. It’s a bit annoying that the one side effect of Ivabradine  I could do with -lowers BP – I am not getting!

It’s still early days and there’s more the Prof is going to do with me. Although the OI is worse I still think that as my HR is lower this is a good thing. Perhaps if I get the BP sorted out some of the OI will be sorted too.

If getting the drug cocktail right can at least halt the downward slide, I’ll be happy. I can’t take beta blockers so Ivabradine is it for the IST. The only other thing I can think of for OI might be L-dopa, but we’ll see.

Overall I think, so far so goodish.

READING: NB although many people with POTS or IST can take Ivabradine, it is not safe for patients who also have NMH (Neurally mediated hypotension)

Ivabradine; A Ray of Hope for IST

Ivabradine; Clinical Efficacy in IST

Ivabrdine in the treatment of OI – oh the irony when my OI is worse!

Radiofrequency Cath. Mod Ablation for IST. So far the studies I’ve read on ablation or IST show mixed results with more not working or making things worse than working. In my case I don’t expect to be offered ablation as my lungs are shot. anaesthetics don’t suit me. If your doc offers ablation think and read long and hard before accepting or refusing.

Drug Juggler (pt II) and CfSAC testimonies for May 2013.

A lot of people get to the point when they just wish they could ditch all the meds. I’ve seen people insist that their body will be able to deal with whatever is happening and self-fix. I wish that was true!

Too many people have bought into the superstition that “science knows all,” and “science will solve all.” This, much like the Cottingley Fairies doesn’t bare too close scrutiny. There are few doctors (my GP is a golden exception) who like patients reading the research. Many people think it’s because doctors like the mystique of looking like they know something we don’t. This may be so, but the more research and peer reviewed published papers I read, the more I think doctors don’t want us to read the stuff because so much of it is shockingly badly done! The standards for publication are so bad it makes me wonder if these papers are actually read by the “peers” who reveiw.

On top of that, diseases like ME and FMS are sucked into shoddy political situations meaning there is little to no research funding and then what is done is deliberately skewed to suit political ends. Science done honestly might have some answers, but vested interests, power grabs and pure corruption mitigate against this.

I do think you should read the research on the drugs the docs are telling you to take even if the research on your disease is difficult to wade through or judge.

inhalers; things you should think about. Even adults do better with a spacer or volumatic. If your doc hasn’t given you one, ask. I have a small one that fits in the bottom of my drug box. You sh

ould also have a peak flow metre and I recommend a pulse ox meter. I’ve had O2 Sats at 73 without really noticing the drop. I’ve mentioned before that steroid inhalers can have side effects, such as voice loss so drink water and gargle after use. If you are treatment resistant like me, most docs advise using Salbutamol inhaler regularly before the steroid. This is because it is supposed to relax the airways so that the next inhaler is better absorbed. (Montelukast can cause voice loss too apparently.)

Amitriptyline: Low doses of drugs like Amitrip or Nortrip have pr

oved very useful for the management of neuropathic pain. The side effects can be pretty yuk even at low doses. I’m on 50mg which is on the high side of low. To quote Dr, Patrick Woods whose research into FMS has shown the dysautonomic and hyperadrenal side of it (he sees FMS as a form of hyperadrenergic POTS) “wake up a fat zombie.” Yup, that’s about right I’m afraid. Add in steroids and you wake up a very fat zombie.  I have been fortunate in the zombie side hasn’t been too bad once I got used to the drug. Opiates on the other hand were horrible

and didn’t really help the pain that much either.

One of the other side effects of Amitrip is hypertension. At antidepressant doses (over 75mg) hypotension is more common, (at least it was among the depressed patients I nursed who were on antidepressant doses back then. Now Amtrip is rarely used for depression). It is likely that part of my hypert is drug induced because of Ami and the steroids.

One of the noted side effects of Ivabradine is hypotension which is why it isn’t prescribed for people with POTS and NMH (neurally mediated hypotension). Unfortunately for me the Ivabradine hasn’t produced this side effect. Typical!

The other commonly used drug is Gabapentin which, as the name implies, regulates gaba in the system. The drug has the added advantage of being an anticonvulsant. I haven’t changed to it as yet because so much else is going on and I haven’t had a seizure since last summer.

The other reason I haven’t changed is the Amitrip is working for me and it took a very long time for me to get pain levels to manageable.

Over the Counter stuff: I take CoQ10 and Magnesium.  A lot of studies have shown ME patients have low levels of both, hence the high number of heart failure deaths and poor immunity. It’s even hit the MSM

Maybe one day we will have access to drugs like Ampligen and Rituxin and actually get our lives back. Until then, we must mix our cocktails and get by.

Some reading: This excellent article Some Inconvenient Truths that shines and uncomfortable spotlight on the “Wessley School”.

THIS is a great overview of the Spring 2013 CFSAC meeting You can read Jenny Spotilla’s excellent and rather heart breaking testimony HERE as she shows a severe drop in funding for ME/cfs which is beyond shameful as more info is coming through showing how sick many people are, and how many are dying of this horrible disease.

Amy Squires Testimony

Jeanette Bermeister’s Testimony where she refused to use the term CFS (good for her) and speaks of how well she got thanks to Ampligen which the FDA have refused to licence for ME even in the light of recoveries (Bob Miller springs to mind)

Mary Dimmock’s testimony

Also READ THIS especially the quite frankly weird remarks by Dr Unger who thinks doctors are too dim to understand the CCC. WHAT? Even I understand it!

While a lot of what happens at CFSAC meetings are obviously American centric, it would be a mistake to think that those of us in other countries are not effected by what happens, and doesn’t happen, as a result of these meetings. Interestingly it was raised at the 2011 Nov meeting that Wessley, White et al were working for the Medical Insurance companies when they began their harmful campaign to label ME as some kind of somatosatation disorder, thus reanimating the corpse of Freud with all the nasties involved.

ME/cfs awareness month ends tomorrow. But the disease goes on.

Finally here is an amazingly good and easy to understand lecture on dysautonomia POTS, NMH etc from a biochemist who has hyperPOTS and NMS It’s nearly 2hrs long so I recommend watching it in bits. But you will learn a lot!

The vid maker and a discussion of the vid is found HERE at DINET

I am still awaiting tests for hyperPOTS to go with the IST.  As I’m already on Ivabradine I guess there’s no rush.

ME/cfs, Voices from the Shadows.

Today is the last day of ME/cfs Awareness month. I’m posting the introduction video for the documentary “Voices from the Shadows” that tries to give a voice and raise awareness for those with Severe ME. Please pray for those at this end of the disease and for all of us who are heading that way with some serious trepidation.  The Intro is less than 5 minutes. Watch and pray.

If you know someone with ME please take the time to watch this. Don’t listen to the MSM. They have no idea.

Later I’ll post part two of drug juggler.

ME/Cfs, Fibromyalgia, Multiple Chemical Sensitivies, Gulf War Syndrome AWARENESS DAY

May is the month for raising awareness of all sorts of so-called “invisible illnesses.” I’ve said before what I think of people who can’t see another persons’s cross. Not seeing it, doesn’t make it invisible.  The fact that these awareness campaigns are needed irritates me. But hey ce la vie. It’s what Douglas Adams referred to as “Somebody Else’s Problem” the SEP field that made someone invisable.

The one disease that I’ve been thinking about recently is Gulf War Syndrome. The name is a silly label covering the diseases presented, originally, by solders coming back from the Gulf War. I don’t know as much about this illness as I would like to. Like ME it is riddled with controvesy and obvious vested interests. The needs of the sick veterons got kicked way down the priority list.

But one of the good things about injustice, is that it always bites the handler in the end. Meanwhile people with a mixture of serious illnessnes are getting together, supporting one another and pooling resources so that even if there isn’t much research, what there is, can be worth while. These days there is quite a bit of research and a good deal of it is of high quality. (There’s still an astonishing amount of shoddy work being published but the good stuff shines).

Today an International effort is being made by the sick who are well enough and by carers and even some researchers to get some answers. Protests are being organised from Australia and around the world demanding better funding. I’ll never forget reading that in the UK more money is spent researching hayfever than ME.

But groups are getting together and thanks to the massive number of comoribidies that we all seem to have; dysautonomic disorders, gut disorders, bizarre cancers, heart failure… and so on, the more research can be pooled to help us the better.

A number of different paths are being trodden in research and they are proving interesting and hopeful. Anti viral meds are still being tested but for a subset of ME patients in particular they are showing great promise. Sadly, gettingt the FDA to move quickly on this has been impossible. More people are dying while paper is being pushed around with unforgivable slowness.

Cardiomyopathy and cardiac insufficiency theories are looking good for another subset of patients who (if they can get tested) often show mitochondrial dysfunction. When the heart at mito level can’t contain oxygen properly this affects the whole body. It’s a form of heart failure that’s difficult to diagnose (unfortunately) but as heart failure is the leading cause of death in ME, it’s a side of the disease that needs urgent attention.

Research from many chronic diseases including Multiple sclerosis has overlapped with some ME and fibro research showing the ubiquitous Epstein Barr Virus may be the door opener for the diseases. Patients are tested positive for reactivation antibodies and so many of us have a history of more than one serious case of Glandular Fever that this virus is looking good for the root of a lot of our problems. It’s also implicated in Lupus.

Theres good research into methylation and some into endrochronological aspects of our disease.

A lot of time and money has been lost (stolen even) but we can work together  and make up for all of that.  It is my personal opinion that the reason diseases such as HIV/Aids have received the funding and research needed was that those who became HIV+ in the ’80s were actually well enough to fight the astonishingly bad reaction from the CDC. It also helped – sadly- that some famous people died of AIDS.

People with ME and other similar diseases are very sick right from the start. Even those on the less severe end of the scale suffer serious brain fog, confusion and of course the hideous PEM (post exceptional malaise). The people who die of ME tend to be “ordinary” and therefore not high profile enough to galvanise those in power.

Perhaps there won’t be answers in my life time. But I pray to God, they will be answers. Join me in that prayer.

 

Against the “who sinned” approach to ME/cfs and fibromyalgia.(or any disease for that matter)

I heard a doctor of some description on the radio say that the reason so many people have diseases like Fibromyalgia and ME/cfs is because we are angry and unforgiving people. He didn’t back his extraordinary claim with any research, but he put it out there as if it went without saying. When asked if something like scholiosis could be caused in the same way, he didn’t think so; but didn’t explain why.

What I will call neofreudianism is causing a great deal of damage in the care of people with all kinds of chronic illness. it’s psychobabble with no empirical scientific value at all; but much loved in political circles. It is simply unethical and has caused terrible damage to the proper funding of research and the proper care of patients with these diseases. Patients are being denied tests and treatment as well as facing shockingly poor behaviour from medics and it all seems to be hooked on the politically motivated approach to trying to undermine the seriousness and reality of the diseases. It’s only relatively recently that the CDC have admitted that ME is a serious life threatening, life shortening disease.

There is, thank God, a growing body of research that shows the biological roots of FMS and ME and some excellent work on comorbidities. We are seeing FMS more tightly linked with autonomic dysfunction and adrenal dysfunction. Most of us have at least one dysautonomic dx such as some form of POTS and/or IST with other orthostatic disorders.

ME patients are shown to have all sorts of nasty viruses as well as MAST Cell, EDS and Mitochondrial disorders.

There is a growing number of us being dx with Lupus, Lymes and other serious disorders to go along with the already hideous  problems we face.

Despite all this, most of the people I know with FMS/ME/POTS/etc etc. are happy, well balanced and forgiving people. The fact is many many of us have faced the need to forgive (mainly neurologists) since becoming ill. The anger, resentment and sadness I’ve seen expressed as come as a RESULT of being so ill and the horrible behaviour of others towards us just because we’re ill. I don’t know anyone who became ill because they were angry with someone.

I do know someone who carries a lot of anger and isolation who has scholiosis. I don’t for a minute assume her illness was caused by her anger. There is no evidence to support such an idea.

It is bad enough being chronically ill, coupled with a shocking lack of well funded honest research, without having someone who patently knows nothing about the illnesses spouting misinformation on the radio.

How could FMS or ME be a result of anger and unforgiveness when it occurs in clusters. More nurses get it on average – are we a more angry bunch? It’s ridiculous to try and tar us with this brush. 

I have emailed Catholic Answers and asked for a retraction on air. I hope they do this. I do love Catholic Answers; it’s a well put together and usually very honest and accurate program. This is a one off hopefully and one that I pray wont be repeated.

It is not because we are a bunch of angry unforgiving grudge bearers that we are so ill. We just have a disease, like other sick people. We should be treated with the same respect.

It’s time to stop annoying my children.

A few things have happened this last week or so that have conspired to make me stand back and realise that it is time I stopped annoying my children. (Well, perhaps not completely…but…)

The first two things that happened were my oldest daughter went to stay with a friend for a couple of days and a friend of mine was writing an essay on the subject of “Loss” as part of her NCT training.

Iona, going away for a couple of days in no way bothered me at all. As a mother, knowing where my daughter is/was I was relaxed. It didn’t occur to me that the same wasn’t true of her.  Meanwhile my friend’s battle with her personal fears about losing a child, or anyone she loves, particularly if it was sudden, as she wrote her essay had also surprised me. I hadn’t known she struggled with this fear. I don’t think this is an irrational fear, a lot of people go through it and often, as in my friend’s case, it is rooted in a soul wrenching event from the past. Taking the opportunity to face it through the essay showed real courage. Most people – especially British people I think- prefer to duck these issues.

So, why did these two things conspire to make me think about my own behaviour?

Well, Iona came home with her friend and I was sitting there unable to breathe. I’d had the day to myself as Heleyna’s godmother had taken the children shopping and brought them home with lots of new clothes. I had decided to use the quiet to have a shower, only I couldn’t make it upstairs, so I gave up.

I had already been to the doc as an emergency a few days before and had been booked in forrenal and cardio bloods in another three days so I got it into my head that I could hold out to then and see a doc when I went for bloods. Yes, I was being utterly irrational. I had allowed my hatred of going to the doctors to over-ride any good sense I might have.

My daughter was cross. She put her foot down and organised me another emergency appt. She called the taxi and asked her friend to stay with the children.

Off we went. Then she had to arrange for my son and daughter-in-law to take over from her friend while she stayed with me at the docs as I was on the nebuliser. To be honest, I felt so ill, but I was squirming with embarrassment that Alex and Anna had to come over for the children. Why? I have no idea. It’s not like they would resent having to help out.

But this is one of the reasons I try and avoid doctors. I have to struggle with a taxi and alarmed drivers who prefer their fares to be breathing properly it seems, and someone has to be there to take care of the younger ones. It might not seem like much; but when you are very ill and have brain=fog to boot, it feels like a massive legistical nightmare.

Iona then said something, that right then, I didn’t really appreciate. She said she knew she would face a problem when she got home because I was just finishing the steroids before she left and they weren’t helping. A while later I realised, that instead of having a great, relaxed time with her friend, she was thinking about what she would face from her recalcitrant sicko mother when she got home.

And then it occured to me that the reason it hits the fan so often is because I keep thinking I don’t need to go to the doctor. And the reason I keep thinking that is because I HATE going, not because I genuinely think I don’t need to go.

There are many and varied reasons why I try to avoid doctors, but this is still no excuse for putting my children through it, just because I can be a stubborn cuss. So my Spring resolution is that I will attend medical appointments when I need to rather than wait so long I have to be shipped in as an emergency. I will do this. Honestly…no, honestly I will.

Where did my spoons go?

I had a few spoons and now I don’t seem to be able to find them. Perhaps they are under the bed. I told my chiropractor that I was tough, and honestly I think I must be, cuz right now I feel like I am getting through a day clutching a single teaspoon. I think it should count as a proof for the existence of God; the fact that I am spoonless and coping. It’s one of those missing verses from Scripture “Amen, I say to you, though you have only a rusty teaspoon, I will give you spoons,” And He does.

If I sit still I can breathe and feel pretty ok – but it’s not a particularly useful way to be. As soon as I start moving around I become breathless, and cough like an old woman who just gave up smoking. My voice comes and goes rather randomly. I am sprouting a rather picturesque butterfly rash across by already puffy face, and my legs are doing their own Dulux advert in shades of white then blue then purple.

I have terry’s nails and mild beau lines. I find this a fascinating “sign” as it must be how doctors could dx patients before the massive over-reliance on machines began. I can’t help wondering sometimes if those medieval monks had a better understanding of sickness and sick people than our modern machine-obsessed medics.

My pain levels are pretty good.; thanks to Amitriptyline (50mg) and the chiropractor. Amitriptyline is prescribed “off label” for all sorts of chronic pain including migraine and back pain. It is prescribed at less than the therapeutic dose for depression (it’s on label use; although hardly any newly dx people with depression would get this as there are new antidepressants to choose from). The max dose for pain is 75mg usually.  It doesn’t kill the pain completely but the side effects are nasty so you don’t want to be on a higher dose unless the amount of pain outstrips the side effects. 50 mg for me keeps a reasonable balance. I have confessed on here before that I also take pink migreleve. This is only in times of definite necessity as Migreleve and Amipriptyline are contra-indicated. I never take them at the same time; and always leave a few hours from one to the other. As I already have had seizures I’m not in the business of inviting more.

I do believe that if you can get pain under control, it’s much easier to cope with eveything else. If you are facing a wall of symptoms and don’t know where to start – I suggest you start with pain management and control.

Since the meds adjustment (candesarten) my blood pressure is under better control.  My heart rate is better as well. So all those drugs I swallow each day are doing something. I’m taking CoQ10 and Magnesium to help boost it all.

The Cardiac Insuffiency theory of ME/Cfs suggests that lack of CoQ10 could be at the root of the heart failure problems in so many patients. Bloods taken from those lucky few to test this come back with low CoQ10 and show mitochondrial dysfunction as well

I am needing to sit up at night so I am using a V shaped pillow. These are great to support you (got it for breastfeeding originally) and help prevent sliding down the bed too often with the waking up gasping for air bit.

Bloods taken to check for renal and heart failure.  I intend to ask for ANAs to be done soon.

Meanwhile I shall clutch my teaspoon and carry on. I have a spoon (sometimes) and I’m not afraid to use it.

It’s okay to be angry and frustrated.

H/T Living With Bob blogspot

I am angry and frustrated. So, I guess I would say it is okay to be angry and frustrated. I am not beaten…yet. But sometimes getting a grip of what’s really happening and not hoping for something that can never and will never happen is so darn difficult. But I am supposed to be the “brave cripple” the “doing okay chronic” the …I dunno what I’m supposed to be to be honest.

I saw the new Cardiologist at the end of October last year. He was nice to me – which was a new experience all by itself. He said he would help me. I waited nearly two months and then had a 24 hour ECG. That was five weeks ago. After a couple of days trying to phone the hospital – and remember peeps, that takes up some of my precious spoons leaving me with less for the children and home.  Finally got them to take a message and to my utter astonishment the Prof’s secretary did actually phone me back the next day.

She said the ECG would be on his desk by today. (yep 5 weeks after the event where I was told results would be 10 days to 2 weeks). He will look it over in the next few weeks and I might get an appointment sometime the end of April, more likely the middle of May.

I know very well that for a full dx I need further tests; epinephrine and norepinephrine levels and possibly (though I doubt I’ll get this) standing dopamine levels. Cortisol and other adrenal function needs testing and going bt the massive yoyoing of my BP, I should be tested for baraflex failure.

So, chances of getting help in the next year or even 2 years looks unlikely; if it ever happens.

This is made a little worse by the fact I am watching someone with ME (although I suppose only have ME makes things simpler) who under private care is getting better.  I don’t begrudge him this – I am really pleased for him. But it’s a bit wallflowerish watching the progress of someone else (who hasn’t been ill as long as me) while I am still slowly, but surely, getting worse. It’s just much harder to get through each day.

I have to accept that I can’t function in the afternoons, or much in the evenings unless I sleep in the afternoon, which was happening because I couldn’t prevent it – but now is back to just unbelievable fog and slowness and just can’t-do-itness.

Self pity is ugly, I know that, and I know, after this small surrender, I will grab back at the weapons and go back to fighting this multi-headed monstrosity of a disease set. It hasnn’t beaten me yet.

But I don’t think I should have to fight every day. Sometimes I need to be angry, fed up, frustrated and even be allowed a quiet cry in a quiet corner. If you are going through this too, then I know you will understand and be grateful you are not alone; honestly, you are not alone.

If you aren’t and you don’t – then please don’t judge and keep it to yourself will you?

PS Dysautonomia Prison has changed sites so this is the new site place

The Lucy Pevensie effect. ME patients are not lying.

Lucy Pevensie is a character of the C.S,Lewis Narnia books. In the first book, The Lion, The Witch and the Wardrobe, Lucy has returned from Narnia and tells her siblings about it. They disbelieve her. Then Edmund visits Narnia too but denies it while Lucy is faced by a wall of disbelief and runs away crying.

The old Professor of the house asks the older two Peter and Susan, who is most likely to tell the truth, Lucy or Edmund. He then suggests that even if her story seems unlikely at first they should believe her.

ME/CFS and fibromyalgia are like a dark Narnia where the witch of a hideous disease has control. We explain what we are experiencing and like Lucy we are disbelieved. Many doctors behave like Edmund. They must see how sick their patients are but they want the Turkish Delight offered by bad bone idle medicine and so deny there is anything wrong.

I have been listening to lectures about more recent research into fibro and ME/CFS and something that has come up (again) is that patients not only lose their abilities, jobs and receive little care, but that they lose family and friends. People can’t be bothered to stick around someone who just doesn’t get over it. Many of us have faced the sense that doctors think we are making it up.

Dr. Stuart Drescher PhD, himself an ME/CFS patient talks of the conversation over secondary gains. Back in my nursing days we spoke of secondary gains, mainly with what my friend called “the worried well” who did not wish to get well in case they lost something of the attention and care from family members. In real life, we rarely came across patients like this, though I did personally have a patient who insisted she couldn’t get well or her son would go off and have a life. Ouch. Most patients, whether in the “worried well” camp or in the seriously mentally ill camp wanted to get better. In fact most patients lost so much that if there were any secondary gains (and there rarely were) they were drowned out by the sheer number of losses in life, not to mention the guilt they carried for the impact their illness was having on others.

The same goes for any serious long term illness. We lose so much. We lose our jobs, we lose our basic abilities. Many of us find standing up bloomin’difficult. We can’t do so many of the things we used to do any more. We lose a lot of dignity as we struggle to keep going. Some of us have the indignity and gross inconvenience of having to use a wheelchair. (I am grateful for my wheelchair because it means I’m not housebound, but the world is not designed for wheelchairs – ask any mother with a buggy).

I wonder if doctors really are as innocent as Peter and Susan when they refuse to believe patients or whether (as I’m afraid I suspect) they are really a bunch of Edmunds who know very well how very ill people with ME and Fibro are but they just don’t want to be bothered to deal with the shambolic and complicated disease, particularly when it might not be politically expedient. When those who have been the most obstructionist in allowing research and care for people with ME/Cfs, veterans with what has been called Gulf War Syndrome and for some reason dragging those with fibro into the dark, get knighthoods, it’s hardly surprising that medics feel the pull of politics over “do no harm” in medicine. (Coupled with something like and OBE for a medic who performs abortions, we can see how those who push the’ life unworthy of life or care are politically lauded).

How many family members who have walked away do so because they believe the person with the chronic illness is making it up, or because they just don’t want to bother with it?

A friend of mine was talking about how she thinks she is “hard” and that people won’t ask her for help, even when she would be willing to support them. In fact, as I pointed out to her, she is one of the most supportive friends I have.(I have other very supportive friends too) She sees me very regularly, so if anyone was going to get sick to death of my illness it might be her, but she doesn’t. She doesn’t over dramatise it, and whisper behind her hands about it, but nor is she dismissive. I don’t have to think like a performing seal when she’s around. She just accepts that I’m a bit bust and even jokes with me about my weird and less than wonderful symptoms. I love that.

We aren’t lying. We aren’t making it out to be worse than it is. We aren’t nearly as stupid as we look. And we don’t balance balls on our noses – not even in a Rombergs.  😛

Humility verses indispensability.

Pride is an ugly sin and is at the root of all sins from the moment Satan said “Non serviam” that is “I will not serve,” pride has been causing bad things in God’s good creation.

Now back in the good ol’days of the Church, before life got soft sometime in the fourth or fifth century, there were no confessional boxes with nice anonymous grills. Oh no, none of that. People confessed their sins before the priest and anyone else who happened to be there. There was often some pretty public penances given as well, especially for public sins. Even kings were told to wear sackcloth and ashes and walk a pilgrimage or two.

If you’ve read Sigrid Undset’s Kristin Lavransdatter (a wonderful trilogy which I highly recommend) you will have seen that Kristin walks a very public pilgrimage in penance for her sin against God and her father. (See how careful I am not to put a spoiler in for those of you who haven’t read it yet 🙂 )

So I will make a confession here. I have caught myself with a very subtle type of pride and its about being indispensable. My terrible fear of not being useful. God is curing me of the disease of indispensability by having me be really ill. So, good things do come from being ill.

I noticed this pride as Christmas came and I just hadn’t done all the things that I usually do in preparing, cooking, wrapping, getting good presents for people. I like Christmas to be just so, and very special so in the past I’ve spent hours, staying up half the night wrapping, arranging and God knows what else.  It all sounds very generous and kind doesn’t it? But in fact I got a lot out of it. People saying how wonderful I was at all this.

So this year has come as a hard lesson. I can’t do it all. In fact a lot simply hasn’t happened. Christmas cards didn’t happen until the last minute and then only some cards. I didn’t cook enough so there are people without the usual chocolates, chutney’s cakes and sauces. Iona has made a lot of really lovely things, but usually we did it together so a lot could be done quickly.

Wrapping presents defeated me in the end and I just had to cave and go to bed (pulse hit the high 130s as I tried to get the washing done as well). Iona and Josh stayed up and finished the work.

Alex and Anna have been over to help with the final preps and making the Christmas dinner. There are other people who can take up the slack in the rope. I am grateful, but also it upset me. See? It wasn’t just about getting it done – it was about me getting it all done. I have to be useful.

I wanted to be doing it all. I wanted to be the queen of Christmas, making it lovely for everyone and basking in pride. Oh dear me. Now that I can’t I am learning a new humility.

I suspect this particular form of pride is mostly a woman’s problem.  Many of the saints were hidden little people who spent a lot of time being very ill. I think I need to remember that next time I am getting frustrated over what I can’t do.

I came across a fellow ME patient a couple of days ago who said she was lucky in that her family took care of her and made sure she could both cope with and enjoy Christmas. They accept she is very ill and don’t try and force her to perform. A little ruefully she said she wished she could offer something in return. Looking at her, I thought, well you are offering something. You are offering your family the opportunity to take care of you. All those people at the last judgement standing on Christ’s right hand had been feeding the hungry, giving drink to the thirsty caring for and visiting the sick and those in prison and so on. If there were no sick, housebound, imprisoned, hungry thirsty and naked people- how could they have done all that?

DysautonomiaPrison.com
Tidbits

I think when it comes to us sickies and cripples when we stand (before by then we will be able to!) before God, He won’t ask us so much about all the stuff we couldn’t do, He will say, “Did you accept the people I sent to help you? Were you kind and polite and patient with them?” And of course, “All those people who wouldn’t help, left you to struggle and made life even more difficult; did you forgive them?”

So, fellow mothers out there watch for this sin of pride. Don’t learn with the holy 2×4 as I have done this Christmas. Learn from me. I like the saying that any fool can learn by his own mistakes; the wise man learn’s from other people’s.

POTS, ME/cfs, Dysautonomia. FMS: My 24 hour ECG – did it show POTS? PS FDA meeting over Ampligen

On Thursday I went to the hospital to be wired for a 24 hour Echo Cardio Gram. The first thing they did was a short 12 lead ECG with me lying on the bed. This showed that I was tacky already – but I had just wheeled myself into the room. The reason I can’t use my shove-it wheelchair myself properly these days is how horribly tacky I get when i do.

Then they put a three wire ECG monitor on me. This was stuck on in three places and I was to wear it until the same time Friday. Then I had to return to the hospital to have it removed.

The kindly Prof, has promised (bless his cotton socks) that he will do all he can to help me avoid the hideousness of a tilt table test.

I’ve come across more than one unfortunate POTsie who has been through the torture that no terrorist has been given, four times before getting a definitive dx.

So, to avoid this nauseating, black out and fainting inducing NHS-theme ride, I was to make sure I made myself as tacky as a brass

pineapple for the ECG. Thus the Prof instructed me. Thus I obeyed.

So I spent Thursday doing washing, cleaning the house, cooking and making things and being up and down as much as possible. I hit well over the 125s and even registered a 132 on my finger pulseometer. So I hope that was enough.

The dx of POTS is basically this. You must have had problems for more than 6 months. From a lying down to standing your pulse must go up by more than 30 beats per minute or be over 120 within ten minutes of being upright. Easy.

For those of us looking at a dx of either hyperadrenergic or combo POTS we will have a rise in blood pressure to go with it- like badly matching socks. More commonly in POTsies is hypotension, but some of us like to be different. In my case I get massive spikes in BP with the occasional sudden drop to just below normal. This means I never need to spend money on a theme park ride. My body provides the Apocalypse experience without me needing to stand in a queue or spend any money.

Anyway, I hope my pushing my limits to crash means I will quickly get a dx and some treatment. I am realistic and know there is no cure, but at least for POTs in most of it’s lurid flavours there is some kind of treatment.

If having crashed out so badly I STILL can’t get dx pleased be warned the “brave cripple” will turn into a raging ranting maniac. My patience with the medical profession ran out a very long time ago.

THIS ARTICLE explains quite a bit.

Get the low down on Hyper POTs here. There’s an amazingly foggy-brain blowing thorough overview HERE

So presuming the tacky is clear enough that I get the dx of POTs then what kind of POTs do I have? Going by a number of symptoms; hypertension, out of control asthma and breathlessness, tremour, shakes and twitching and jerking.

Overview of my BP, Pulse (blue) and pulse pressure(purple). You can see how sometimes things are better than others. Another typical POTs thing,

I am hoping that as the Prof mentioned testing my “flight and fight” responses that the NHS do at least allow for epinephrine and norepinephrine tests. I doubt very much I’ll get standing dopamine tested or Mast Cell tests. Neither do I expect to be tested for the rarer forms of EDS even though there’s a chance that is playing some role here. Chances are his F&F response test might be slamming a book shut near me. That seems to be the level the NHS is at these days.

As more recent research shows Fibromyalgia overlaps so precisely with Hyper PoTs I assume I have hyper or combo (because of the sudden drops in BP and the occasional very low pulse pressure around 1o).  Like DysGirl I have fluctuating pulse presure. Sometimes normal, Sometimes too high (above 50) and sometimes too low (below 30).

And now all I have to do is wait. And very probably chase up the results and remind the NHS machine that I exist.

Please add an extra prayer or two for patients with CFS/ME as tomorrow there”s a hearing with the FDA (Federal Drug Administration in America) over  whether the drug Ampligen should be approved for the treatment of CFS. It’s looking like a rocky road ahead, which is nothing new for patients with this disease. The initial negative approach caused the shares of the drug to suddenly drop by 45% which only reminds us that patient need and care is not the priority ever.

However this conclusion from the FDA prelim review has also been released.

CONCLUSION from FDA prelim review
“In summary, CFS is a serious, life threatening and unmet medical need. There are currently no FDA approved products specifically for the treatment of CFS. Ampligen has the potential to be a positive therapeutic option for patients with CFS who do not have an alternative to directly treat the condition. Given the overwhelming physical and cognitive health issues; the decrease in activities of daily living and overall lack of quality of life associated with CFS, Ampligen clearly represents a clinically meaningful advance for a significant unmet medical need, and the weight of evidence supports FDA goals to advance treatment for chronically ill patients with severe debilitating, life threatening, conditions such as severe CFS.
It can be stated that the burden of the symptoms associated with CFS is greater than any risks associated with Ampligen, since a CFS sufferer’s life may be at risk for years of debilitation often followed by premature death.”

Please do pray. As things are there is very little treatment for this. Many people are bedbound, very debilitated and desperate.