Category Archives: Fibromyalgia

Hospital Appointment – larynx/throat speech specialist

I’m sorry to write two medical posts one after the other but I had my hospital appt yesterday and thought I’d tell y’all about it.

I saw a speech cum throat- especially larynx specialist. I had been referred to her by my Respiratory Consultant who suspected that some of the asthma and other breathing problems may be Vocal Cord Dysfunction.

She took a very thorough history – I was in there for an hour – on NHS time!  We went through the different breathing problems; some obviously asthma, some orthostatic, some being something else. She was interested in the problems I’m having with swallowing and eating – without immediately jumping to daft conclusions.

Then she stuck a camera up my nose and down my throat. This is just the sort of thing a good Catholic girlie can “offer up” :)

From this delightful experience she told me straight away that my throat was “cherry red” and otherwise a bit of a mess. So I now have a dx of Vocal Cord Dysfunction (VCD) and EERD (a form of reflux)

In her talk about how VCD works she spoke of it as a spectrum disorder. On the mild end are those who have what I suppose sounds like voice strain; teachers, soldiers and opera singers being the most common patients. (As my Resp Con is a Colonal in the army I wonder if that’s how he guessed so quickly what was happening to me).

On the rough end come those of us with severe asthma and autonomic nervous system problems. She hadn’t heard of dysautonomia as hyperadrenergic POTS or IST but she really quickly grasped the ANS dysfunction side of things for me and how that kicks in with VCD.

I’m to start therapy which will be around breathing exercises and voice control. There’s no cure as it’s obviously ANS related but it can be better managed – which I’m all for.

THIS PAPER IS A VERY GOOD OVERVIEW

Since the TIA last week I’ve had some problems with being upright and breathing. Needing to lie down more often and the bloomin’ stairs are a killer. I’ve set something off that I can’t get on top of right now. What a shambles.

Chronically ill mother’s homeschool approach.

dys mumI’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?

Global Dysautonomia Awareness Month copyHere’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 diagnosesstanding 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).

dys5I 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.

Dysautonomia Awareness month

autonomic systemIn the slightly strange world I inhabit I know quite a few people around the net who either have some form of dysautonomia or have one of the many co-mobidities that we have and so know about dysautonomia, even if they don’t have it. This can give me the false impression that everyone has heard of it and at least, has a general idea of what it is.

Dysautonomia isn’t well known and part of the reason is that it is supposed to be rare. The most common form is POTS with NMH; that is postural orthostatic tachycardia syndrome with neurally mediated hypotension. The people with this get tachy when upright and their BP can drop like a stone. A lot of people with this have low blood volume.

fight flightHyperadrenergic POTS is even rarer. We get tachy when upright and our BP will shoot upwards and for those of us on the “combo” end of things it will nose dive and shoot up again. It’s because the normal fight or flight responses are stuck on “ON” mode. This comes with the added complication that while we seem to be pumping out the adrenaline (ephinephrine) which is changed into noradreneline (norepinephrine) it might never really make it to dopamine, or if it does, not much dopamine is made. If it is made the uptake is poor and if the uptake can cope even a little, the re-uptake is bust. This is probably the root of my tremor and possibly the myoclonus too.

The depressed immune system means we have fun with infections.

Then in a small corner of rarity is IST – inappropriate sinus tachycardia. We have tachycardia all the time. In my case it’s around 100 (without meds) when I’m sitting still and can get down to the high 80s if I lie still – but often can’t do that. Upright it can get up in the 150s which is mild compared to some folk.

IST is thought to be a form of POTS but the medical jury is still out on that one. As there is very little research on IST – less than other POTS forms, it seems unlikely we’ll get many answers any time soon.

Other symptoms are brain fog – I hate it – confusion, memory loss, visual changes and auditory sensitivities.

We also get seizures. POTs related seizures are common and horrible. I had a one off the other night – thank God it was a one off. Seemed to be because I was particularly shattered. Not infection related this time. And that’s another problem – we don’t get seizures for one reason, we get them for a load and doctors like to call them “idiopathic” meaning they don’t know what causes them. They don’t respond to anticonvulsants unfortunately, so we are left with no treatment.

Dysautonomia ranges from mild through to severe where people are mostly stuck in bed with NG tube for feeding and sometimes oxygen. On the nasty end dysauto can be fatal; respiratory failure, heart attack, stroke seem to be the lead CoD.

This is a reasonably good article on IST as part of Dysautonomia.

So what does getting aware mean? Well first of all – if you have someone in your life with this disease, say a prayer for them. Be patient with them when they are acting spaced, foggy, tired or just off. Don’t assume that someone who is trying their best to be as normal as possible can keep that up every day. Crash days, weeks and even months happen. Be kind.

If you have money and know a good charity or research thingy then please do donate. We need research if we are ever to get good treatment, let alone a cure.

It’s not the anger, it’s the guilt.

DownloadSomeone 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 :lol:

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.

vintage-hollywood-LUCY-on-phoneAnd 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.

Lung_function_test-SPLI 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).

lungdif_s-300x241Then 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

box-sceme-001-940x705In 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.

u8_thin-girl-fat-girlFirst 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.

gkc1The 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.”

Severe ME awareness today.

Severe ME dayA special day has been put aside to raise awareness, understanding and Remembrance for the 25% of ME sufferers who are very severely affected.

This article tells how the date of August 8th was chosen because it was the birthday of Sophia Mirza who died of ME after being abused by the hospital system and social workers who insisted she needed mental health treatment for what is well known to be a serious, life threatening disease. Sophia had an autopsy done thanks to the solid thinking of her mother and the medical examiner found from spinal fluid and other evidence just how desperately ill Sophia had been. As far as I am aware Sophia’s mother has not received so much as an apology for the shocking treatment her daughter was subjected to.

In the UK the 25% ME group work hard on behalf of those far too sick to campaign for themselves. On more than one occasion I have seen crass stupidity from those who should know better, saying that patients with ME need to stand up for themselves more – showing a complete ignorance of just how sick a large proportion of ME patients are.

Say a prayer for all those in the 25% group and for those who have been there or are heading there.  ME is no respecter of persons so add a little prayer of gratitude if you don’t have it.

(My situation: I don’t know if I really have ME or not. I was dx by a doctor who was more interested in spouting off the mantra of “GET/CBT” than in listening to why I had actually been referred to him – which was for worsening Fibromyalgia (more recent research is showing FMS is a form of hyperadrenergic pots, ie dysautonomia). I received the dx without my knowledge until my GP mentioned it in passing.

As Ramsay was the most well respected researcher into ME outbreaks across the work I tend to think he should be listened to. He insisted that those of us with a dx of dysautonomia should be excluded from a dx of ME. This was probably because he saw the symptom overlap as too great.

I was recently told that a doctor specializing in ME/CFS has suggested that as many as 96% of his ME patients have a form of dysautonomia. Perhaps if we were shifted to the Dys umbrella the seriously ill ME patients would get better research and care).

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.

P1030056But 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.

images (1)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 – 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 000-3d-model-1rheology 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).

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

procoralanI’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.

545749_454380617911565_1095774106_nA 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

Positivity is Not a Cure

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.

Autoimmune diseases on the rise rapidly. No one seems to know why and CFSAC meetings…

Reports have been bandied around for some time now showing that autoimmune diseases such as type 1 diabetes, Lupus,  and celiac are on the increase across the globe. Type 1 diabetes has increaed by 23% between 2001 and 2009.

Asthma is another disease that has not only increased rapidly over the last 30 years but according to Dr Gailen D. Marshall of CFSAC the complications of asthma are increasing. I am now one of those patients with steroid resistant asthma.  Those of us with this form of asthma are supposed to be rare, but “rare” is becoming common it seems. I have IST which is supposed to be “rare” but there’s a lot of us out there.

The usual “blame the patient” stuff is rolled out as “high salt diet” and “junk food” and “alcohol abuse” etc. gets bandied about, but this falls flat when you realise the increase is global and so that includes areas where such diets and lifestyles either aren’t there or aren’t even available. Not to mention the fact that most of us don’t tick those boxes anyway. It is a cause of irritation for me that when a history is taken and I don’t smoke, eat junk or abuse alcohol the view is that I can’t be ill then.

This goes along with the number of research outcomes that show an autoimmune aspect to ME. Whether ME is purely autoimmune or a nasty mix of stuff isn’t clear. It won’t be made clear in the foreseeable future thanks to the shameful lack of research funding but the clues are there.

I’ve been watching last years Youtube vids of the CFSAC meeting 2012 with a growing sense of despondency.  I am awaiting this years meeting vids to go up but going by some of the reports from those who attended, it may be better if I never watch them.

I am saddened by the same stories from patients told over and over which seem to be words aimed at walls not people. But the news that Dr Unger believes that the Canadian Definition of ME is too complicated for poor doctors who are “frightened by it’s complexity!” Seriously!!!

The call for the Canadian and International criteria to be made the criteria for the disease goes on.  It needs to happen. Thankfully the biomedical research is showing promise. It shows that excellent results can come even where there is so little funding.

The Drug Juggler (part 1)

The person who takes medicine must recover twice: once from the disease and once from the medicine.”

Dr William Osler

Drug smugglers might think life is hard on them, but drug jugglers are walking a high wire with no net.  When you have an illness that likes to open the door to all it’s friends and relations, you can soon find yourself on a shocking amount of medication. Chronic illness has a really nasty habit of inviting a whole sack load of pathogens to have a rave in your body. This means we need a ridiculous amount of medication as more co-morbidities set up residence and then the drugs we are given can have their own nasty side effects and open invitation to even more infection.  So drug juggling becomes a way of life.

P1020587Let’s take some of the symptoms that go with the Shambles dx of ME/Cfs + fibromyalgia + asthma + hypertension + dysautonomia IST. Which is what I have been stamped with so far. One of the major, and irritating symptoms is brain fog, and memory loss. That means juggling meds as to when and how to take them can be a bit challenging at times. Coupled with varying  vision there is a danger of accidents.

So organise the meds. Make sure you know what you are taking, how much and when.  You can buy those plastic boxes but they are sooo ugly and just scream “you’re a sickie!”  My oldest daughter bought my a glittery makeup bag some time ago but I’m on so much more stuff these days it wasn’t able to hold it all.

So I have bought a makeup box. Don’t laugh – this is something you can carry around without

P1020589

it being obvious you are taking a truck load of drugs. It holds everything including the arthritis gloves and bandages for bad pain days. It’s kind of “drugs in style”.

Knowing you can just take what you need even with the worst possible brain fog is good.

Something like this box is ideal. The bottom layer will hold boxes of drugs you aren’t using right now, and things like arthritis gloves and bandages. The middle layer will hold inhalers, and/or morning and afternoon meds  and the little top boxes will hold (in this case) six nights worth of meds.

The other thing I am going to do is have a list of meds on a sheet with a list of dx and you should add sensitivities and allergies too.  This will make things a lot easier if you get shipped off to hospital.  The last time I was in an ambulance I found it really difficult going through it all with the paramedic as I just wasn’t very with it at the time. If you have it all written down that will cover all eventualities.

Side Effects

Another quote from the redoubtable Dr. Osler

One of the first duties of the physician is to educate the masses not to take medicine.”

We live in a strange culture that sees any kind of suffering or illness as something to be medicated to death. Every winter, certain over the counter meds get advertised on TV in such a way that is laughably inaccurate (how it’s allowed I don’t know). Got flu? Take this magic snake oil and return to work the next day!  This patently false advertising gives the impression that if you feel ill, there’s an immediate cure out there. Well, folks, there isn’t.

Taking medication should be done only when you really have to. All meds have side effects. For those of us with a nice complicated set of chronic illness there seems to be a bent towards drug sensitivity. This means you need a patient doctor who will do some trial and error.

Take hypertension; there’s a number of drugs I’m on or have to take on a regular basis that actually increase BP. However I’m also on drugs that are supposed to lower it. The wild fluctuations I have in BP are more likely ANS related than drug related but there’s still some chance the drugs are up to no good. That’s one of the challenges; working out what is making the symptoms, the diseases or the drugs?

Steroids can cause hypertension and batter your immune system leaving you open to all sorts of opportunistic infection. The fact that so many of us who need steroids already have poorly functioning immune systems doesn’t help.

You really do need a good, trustworthy, sensible doctor to help you tiptoe through this minefield. Be aware of what your meds do and what they might do that you don’t want them to do. I am on antibiotics more often because I’m on steroids so often. I will discuss ways of coping without steroids for periods of time so I don’t have to have quite so many infections.

Oral steroids are the worst offenders (Prednisolone is my poison) but I am on inhaled steroids too. Don’t forget that they too have side effects. I frequently loose my voice for example. Some of that is the disease and some of it is inhaled steroids. If you inhale Seretide or one of the other steroids make sure you gargle and rinse afterwards. It might to help, but it might avoid some voice problems.

Recent research suggests that Vit D could help even steroid resistant asthmatics. However, the media is always grossly simplistic in it’s reporting. First of all Vit D supplements vary humungously. Also you need Vit A to process Vit D and you need exactly the right amount of Vit A to process Vit D. What isn’t clear as yet, is whether we are lacking Vit D or unable to properly process it. Vit D deficiency is found in ME patients too; still lots of unanswered questions, but interesting progress.

That’ll do for now.

In gratitude for family and friends.

Psalm 88 comes up often at Compline in which the psalmist faces his ill health and gives God a bit of telling off. One line stands out as, because of how sick he is he says, “You have taken my friends away from me, and made me repulsive in their sight. I am confined and cannot escape.” (Ps 88:8).

Go to any place on the internet where people speak of their experiences of serious chronic illness – especially not so well understood ones like fibromyalgia, ME (cfs) or dysautonomic disease like PoTs, IST and all the rest that goes with them, and you’ll see the same stories over and over. So many people tell of how friends and family not only abandoned them, but actually humiliated them over how sick they were.

The most common idiot thing to say is “But you don’t look sick.” WHAT does sick have to look like? I mean, most of us exhibit all sorts of weird “sick” signs. Perhaps the fact that I twitch and jerk randomly, have colour changing body parts; have lost the skill to both move and breathe at the same time, and of course there’s the in-yer-eejit-face wheelchair, has prevented most daft comments (Doctors are another species so I don’t count the bizarre and inhuman things they say).

Story after story in which the person struggling with the disease that has stripped so much of their life away, has to face being rejected, taunted and ridiculed by their own family and friends. What on earth is going on?

Many people lay the blame at the feet of doctors who have been rude and dismissive; which should be a matter of deep shame to medics, but isn’t. Family members still stuck in the idea that “doctor knows best” then feel permission has been given to behave in the same way and so the nastiness spreads. Then there’s the ability to wiggle off the hook of having to love and care for another person. I am sure not wanting to feel responsible makes a lot of people cruel.

Having a chronic disease is a bloomin’difficult business. It’s bad enough when support isn’t there when it’s needed, but to be actively abused for being ill has got to be the worst possible experience.  THIS BLOG POST sums up what it’s been like for way too many people. Research from a couple of years ago shows that one in ten suicides are because of chronic illness – but read any post by someone feeling suicidal with chronic illness and almost always it’s nothing to do with how sick they are, but how others are treating them.

I am so grateful that I haven’t been through the level of rejection and stupid behaviour that so many others out there speak of. I’ve lost a couple of fair weather friends and family, but most people have been fine with me and very supportive.

I am quite sure plenty of people in my life have no idea, or only a vague notion, what chronic illness does to me, but I don’t mind that. Why should they have to understand it? But no one has been cruel or unkind to me, thank God.

Like nearly all FMS/ME/Dysautonomia patients I’ve faced a barrage of rude, arrogant and downright nasty medics. That’s more than enough to cope with thank you very much. I don’t need more. I don’t get why people feel the need to dismiss the suffering of others. What’s that about exactly? 

Ten years into this hideous set of illnesses I’d be very tempted to use rude words in response to someone who tried to pour salt on my wounds.

My oldest children have been brilliant right from the beginning of this. They’ve had to contend with a lot from me and deal with their younger sister being extremely ill for the first three years of her life too.

I am very grateful that I have good Christian people around me who have a good Christian attitude to life.

b213-thank-you-cheery-lynn-doily-die-4674-pSo to all you friends and family who have never said “But you don’t look sick” or “You should try and get out more,” or “Have you heard of so-n-so the brave cripple..” or “have you tried this miracle cure?” or  whatever other useless, unhelpful thing,  I just want to say THANK YOU.

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

62608_351128568321966_500473882_nMay 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.

 

The Ascension of Our Lord and a side note about St. Dismas

It’s the Solemnity of the Ascension of Our Lord today although locally here it won’t be celebrated until Sunday. In this piece in which Pope Francis speaks about the Ascension he notes how joyful the apostles were when Jesus ascended into heaven. He points out that the  disciples knew Jesus hadn’t been taken away from them, but that He remained with them forever.  He had promised “I am with you, even to the end of the age.” And they knew He always spoke the truth.

I was going to try and write something meaningful about the Ascension but my brain is on a go slow.

So can I, instead, mention poor old St. Dismas. (Yes, I do have a soft spot for him).

It seems to be a popular question these days to ask if St. Dismas, the good thief, crucified with Jesus, did anything to be saved and whether he passed through purgatory.

If people think that Purgatory is a “place” you go to after death and Jesus said “This day you will be with me in Paradise” I do understand there might be some confusion. But if, as I suspect, many questioners are saying Dismas didn’t suffer purgatory (and in a weird extension that I don’t understand they then say therefore there is no purgatory) then it makes me think of “invisible illnesses”.

First; Purgatory is a process in which a soul is cleansed of attachment to sin and makes the required reparation for those sins as nothing unclean can live with God.  St. Paul describes it as being saved “as if through fire” where only the “gold and silver” are left.  It was certainly part of popular thought that Purgatory was a place with a time linked to earth where people would be purged over days, years or even centuries but this has been clarified by the Church and we are reminded that Purgatory is a process first and  foremost. We can do a whole lot of it this side of death; so as Blessed Pope John Paul II said “Don’t waste your suffering!”

St Dismas was crucified for his sins. He accepted this astonishingly cruel way to die and even had the courage to speak up first for Jesus and then to beg for His mercy, “Remember me when you come into your kingdom.”

To suggest that Dismas didn’t do anything and that he got off lightly is a bit like saying to a person with severe chronic illness “But you don’t look ill.” Perhaps St. Dismas could be made patron saint of “invisible illnesses”.

I am sure this questioning of what St Dismas went through is a very modern thing. Our culture of individualism has slid into blind selfishness and reached the point where even those who are supposed to be Christian can fail to see the suffering of another to such an extent they actually deny it. They deny his courage as well.

It seems to me a short (and dangerous to the soul) step between shrugging off what St. Dismas did in his last hours to shrugging off what his cross mate Jesus did for all of us.

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.