Tag Archives: fibromyalgia and myalgic enceph.

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 designallare 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.

The stigma of ME/cfs. It’s a mystery.

I have read this well presented view of the horrible stigma that comes with a diagnoses of ME/cfs. If you know someone with ME this is the article to read. It’s long but worth the effort.

photo-from-we-campaign-for-meThere should be no stigma attached to being ill, but we live in weird times where one illness, which might get media attention, means compassion and another which gets negative media attention is treated with contempt and of course that means those who have the illness are treated with contempt.

Schmid gives a list of possible reasons for the stigma attached to ME. The first one she notes is “symptoms come and go.” There are plenty of other diseases in which symptoms fluctuate so people who use this excuse to hang their meanness on are on thin ice. Even cancer patients going through chemo have good days and bad days.

There are so many symptoms; this is simply because the disease is system wide. The sad fact is that the way modern medicine has moved means that a patient needs to have one or two very obvious symptoms that show up, preferably, on a simple blood test or at most an x-ray and can be treated by one of the astonishingly narrow specialists.

A patient with a system wide disease that it attacking just about every part of his or her body is just too difficult for these doctors to cope with.  The huge emphasis on holistic care and multidisciplinary working that I was trained in back in the 1980s was ditched almost before I qualified in favour of some kind of bizarre market model where the cheaper the disease the better.

Some of the symptoms are bizarre (writes Schmid) and this is certainly true. Some of my most bizarre symptoms I have never even mentioned to a doctor.  As Schmid points out most of the bizarre end of things come from disruption of the nervous system, but neurologists don’t seem to have a clue about them.  She writes about Floyd Skoot’s “Xerox machine” default word. Most of us have this. In my case it’s “dishwasher” or more recently “wishdosher”.

Despite the noted deaths from heart attacks due to heart failure and the shocking number of suicides, those with the disease are still treated quite simply rudely and even cruelly by most doctors.

She goes on to speak on how medics need educating about the nature and seriousness of the disease. All that is true. But I still want to know WHY this disease, more than any other, gets such appalling treatment.

I read Osler’s Web and although Ms Johnson gave a solid and well researched testimony about the politics and shenanegans that began with the Tahoe  Incline Village in America outbreak in 184-5 but when we know that it wasn’t just Cheney and Peterson who were asking the CDC to come and investigate. Dr David Bell says he did and they refused and then he discovered another doctor with a similar cluster outbreak who couldn’t get the CDC to respond either.

WHY wouldn’t they? Something made them determined not to investigate right at the beginning, before anyone from the CDC had met any patients at all.

The debacle soon spread over here and the comedy duo Wessley and White labelled it with a fake psychiatric label.  While this has certainly feathered their nests and got them in with the elite crowd, I still can’t see why this has been enabled?

There are quite a few diseases out there that have a stigma attached. Ask anyone with Schizophrenia how the world and it’s dog treat them. But I have never before come across such a serious disease, where the stigma is rooted in so much  spite.

And of course lies.

Doctors have always been willing to shove the truth under the carpet, but to tell a bare faced lie; I think  that seems to be a speciality wih ME patients. I think the very worst lie I was told, was by the neuro who saw me at the beginning of all this who categorically insisted I would get better within a few months.

When I began to go into a remission for the first time I really believed that this was it and I would be well and back to normal soon. When I crashed again I was confused and when it happened another couple of times I was devastated. Yet no neuro went back on that lie. They just repeated it.

Now that I have done the research and I know what fibro, ME and dysautonomia can and does do I am much stronger and able to cope with what it does do.  No one deserves to be lied to about how their chronic illness is going to go.

It’s okay to be angry and frustrated.

H/T Living With Bob blogspot

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.Hydra

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

Dr Julia Newton’s research in the UK!

In Newcastle Dr Julia Newton has been doing some proper research into ME/cfs. Her findings are interesting and show that autonomic disorder seems to be pretty universal with this disease. She is hoping that her work on dysautonomia in ME may provide us with a straightforward biomarker for accurate dx. But she is sensible enough to note that ME is a very complicated disease with a range of disorders co-morbid within it.

Dr Julia Newton’s lecture with slides is available here. This is the same lecture given at and Action For ME meeting. She entitles it Standing Up for Fatigue after the brief intro she starts talking at 2 mins 6 secs in.

A Phoenix member has worked hard to provide a pdf transcript.

I would like to see this genuine researcher get an award, but that is highly unlikely. It’s still a massive fight to get the funding for the research!

Perhaps she should suggest workhouses for really annoyingly sick people. Then she’d get an honour or two.

Dr Newton is taking muscle cells and testing them in her lab. From this hopefully some more proof of Post Exertional Malaise can be found, and perhaps a treatment. (I am living in hope). PEM is one of the most debilitating aspects of this disease. It’s what a lot of us call the “crash”. It’s not just feeling tired – whatever some eejits might say, it’s brain fogging, body lead like utter yukkiness.

Dr. Snell who has a background in sports medicine has done some fascinating research on this area.

There are members of Phoenix Rising who have volunteered for follow up studies on PEM. Knowing what it feels like I have to say I applaud their immense courage.

Sorry to do two MEcfs FM Dysautonomia posts on the trot, but it’s good to see real research happening even while the British Government reward those who block it’s application.

I saw the Cardio on Oct 29th and had a 24 hr ECG 13/4th Dec and finally managed to get through to the hospital today where I received a promise that the  Professor’s sec would phone me tomorrow. I’ll be amazed if she does.

I am awake during this afternoon’s crash which is better than it has been!

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.

dys 12So 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.comTidbits

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.

FMS/ME/POTS/Dysautonomia – remission.

I’ve been feeling better the last five days or so, and I have been enjoying the little oasis of having much much fewer symptoms, including much less pain. Lovely.

My BP is still unstable but my pulse and sats are so much better. In most chronic illnesses there is a pattern of remission and relapse. But in the system wide ones it’s a difficult thing to measure. I’ve noticed that many people get that few days of remission that is so welcome to us all; but others can go into almost or actually complete remission for months on end, and occasionally years.

As far as I know, there is no research on what causes remissions. We don’t know what causes them, why some people get good ones and others get little ones. We don’t know why some people only get partial remission and why some never get a remission.

Today, five days into my little oasis, the pain is back and my BP is shooting upwards again. Nevertheless my POTS is still in abeyance. I can stand up without blacking out or feeling sick, and my pulse is staying below 12o. Lovely stuff.

Back at the beginning of this disease (10 years) doctors told me quite clearly that it would all just go away. I believed them. They lied with the sure knowledge that they could do so. I am still astonished by the number of outright lies doctors feel able to tell patients.

This lie was a particularly mean one. After a while I began to feel better. I could manage a little more and the foggyness in my head was better. I thought I was getting better.  More and more symptoms began to lift and I was so happy because I thought I was about to get my old life back. I made plans about getting rid of the crutches and wheelchair. I couldn’t wait. So I pushed myself. Walk a little more, do a little more, keep it going. And of course I crashed.

Doctors shrugged it off or said I needed to try harder.

It took a while for me to learn that doctors should be ignored and never trusted. But I learned. Doctors should not get away with such lies, but as they do, it’s best to treat the things they say with extreme caution.

I now know the little remissions I get are not a sign I am getting better. But I am not made unhappy by this. Now that I know what I am fighting I can fight it realistically. The truth really does set you free. I can enjoy the oasis of remissions when I have them and they do mean I can get more done around the house.

Now I know some of you will be shouting at the computer at that sentence. I admit I do bring on a kind of boom and bust cycle because I use the remissions whether mini ones or pretty good ones like this has been, to do more. I know lots of advice saying pace carefully and keep remissions going, but I don’t know how long a good patch will last and in the bad patches which have been very bad indeed recently I don’t get nearly as much stuff done as I need. It has to be done sometimes – so remission moments are when I catch up. Does this shorten remissions? I don’t know – possibly. But there’s a balance to be had between trying to be less sick and trying to be a wife and mother.

I’ve read a lot of people’s stories over the years, especially more recently since I decided to get hold of the research and see what is happening out there. Lots of people have talked about losing friends and family because of how sick they were/are. For as long as I am able I will do the things that are part of being a wife and mother, especially a home educating mother. It’s important not to let the disease decide who I am.

(crashed this morning. Well it was good while it lasted :) )

Pace trials Pt 2: GET/CBT does more harm than good.

No sooner had I posted THIS with the great explanation vids when vid four was put up. So here it is. Take a five min break and watch this.

The explanations are so clear even I get it now. I have to say that since I’ve been more serious about reading research on ME/cfs FMS dysautonomia/POTS one thing has become very evident. That standard of a lot of stuff that gets published in peer reviewed journals is really pretty awful. Basic mistakes such as making assertions without any back up evidence, where only one or two authors are used as references and no mention of authors who came to different conclusions.  Imprecise language and over use of jargon. The list goes on. I have wondered sometimes if this is the standard of research and study that does get published, what on earth does the unpublished stuff look like?

Is this shambles over GET/CBT genuine incompetence or is it corruption?  Sadly, and very worryingly, it looks more and more like corruption.

(I think I may had muddled the vids in my foggy brain. However if you go to Youtube you can watch them all in the correct order. Sorry)

The Pace Trials; GET and CBT doesn’t work. Never did. Never will.

The PACE trial has been going on for a long time. I am fairly newly dx with ME so it’s all a bit new to me. But some personal background might help.

I became ill 10 years ago. It was November 2003 when I was admitted to hospital because I could no longer walk and was in immense pain, confusion and general severe yukkiness. I assumed it was linked with my pregnancy but my Obstretitian  begged to differ. He asked the Neuros to give me an MRI and have a good look at me.

They refused.

And thus began my bizarre Kafkesque adventure with neurology.

I remember lying in my hospital bed, feeling pretty rough and just a little concerned about my unborn son, while two registrars stood on either side of the foot of my bed arguing. On the left was the OB Reg and on the right was the Neuro Reg. The arguement was over whether I was going to get an MRI or not

The Ob Reg won. I don’t know how or what happened in the office later, but a couple of days later I was wheeled over to the other hospital and got the MRI.

It went missing.

Long story short. I didn’t get a dx and once my son was born I was told to exercise, pushing a little harder each day until I got better. The Neuro promised me I would get better.

So I did the exercise, every day.

I went from being able to walk with crutches or the pram to keep me upright, just about around the block, to not being able to walk a few paces from my own house. I can’t even walk around my house without walls and furniture to assist me. GET not only failed me. It made me a lot worse.

And I have discovered I am no the only one. It’s a common result.

The deterioration rates for GET and CBT are not only not published, but a Freedom of Information request has had to be put in to get them. The FOI was granted and an appeal against revealing the info has now gone in. YOU COULDN’T MAKE THIS STUFF UP

As it happens other countries where studies into GET/CBT have been done have shown it doesn’t help

In case you (like me) haven’t quite understood what is going on, these three short,clear and funny videos should help. I believe the talented author is making a 4th installment with further details.

The 10 activities of sf-36 are: 1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports. 2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf. 3.Lifting or carrying groceries. 4.Climbing several flights of stairs. 5.Climbing one flight of stairs. 6.Bending, kneeling or stooping. 7.Walking more than a mile. 8.Walking several blocks. 9.Walking one block. 10.Bathing or dressing yourself.

Average scores for healthy adults approx 95+ (various studies)
Class 1 chronic heart failure 79
Rheumatoid arthritis 62
Dialysis patient 50

Cardiologist POTS Spec appointment.

I went off for my appointment at the hospital this morning. I am more than aware of how all this works so I had no hopes raised and accepted I would be given the brush off in some way.

There are words I never expected to have come from my mouth or keyboard, but here they are; The Professor was lovely! He was respectful, honest and straight forward. He made no assumptions but actually asked me questions about my wheelchair use and lifestyle. He did a short poor man’s POTS test and said that he tries to avoid sending people for Tilt Table Tests (for which I was so grateful!).

He says it doesn’t look like classical POTS as my BP goes rocketing up with my pulse. Pure ANS dysfunction or failure would cause Hypotension. I’ve read this so I knew what he was on about. I assume I have that narrow band of POTS where hypertension is part of it and that would be adrenal. I don’t know yet.

Next step is a 24hr  ECG. I should get wired up in 4 to 6 weeks for that.

He noted the complicating factors for my tachy being how bad the asthma is and the very strong meds I’m on for that.

And of course he noticed the Amitriptyline.  He’s not going to rush into taking me off that. He seems to know a few patients who need it for pain.

I asked him the question I am now going to ask every doc I see. Which camp are you in over FMS and ME – the “real disease” camp or the “all in yer’ead” camp. The man accepts that both FMS and ME are diseases we still don’t know much about. He pointed out that the same can be said for POTS. He would accept the limits to our knowledge rather than assume the patient is making it up or has a mental health problem.

With the complications I have he couldn’t promise I wouldn’t have to have a TTT in the end, but he’s going to work hard to find some answers and a treatment that can get my heart rate down.

As we were leaving the nurse who works with him said, “He doesn’t give up easily you know.”

WHoohoo! He even agreed with her!

I know there won’t be any easy answers. But at least I think I may have found a doc who actually wants to find some answers.

Dysautonomia Awareness Month: As I learn more the jigsaw looks clearer.

Having been ill for ten years, you’d think I would have a grip on the research about what my body is doing to me. But to be honest I was too cautious in reading it. Nearly all doctors

, (with the exception of my GP thankfully) are extremely precious about medical knowledge and the last thing they want to see is patients who have read the research and, worse still, understood it.

Even in my nursing days I heard doctors grumbling about patients who had “Been on the internet,” and were asking questions. So I thought I might be better off keeping anything I knew to myself and not doing much research.

This has been a colossal failure as a method to ensure good medical care. So I have changed tack completely and I’m reading and listening to as much research as my foggy brain can deal with.

Having recently learned of the research that shows Fibromyalgia is likely to be dysautonomic I have made lots of little discoveries that fit a lot of the other symptoms into the ANS disorder.  I would never have worked out I had POTS if I hadn’t read the research. I would never have known there was a good poor man’s tilt table test if I hadn’t read the research and I would never have discovered why my heart can gallop to 148 on  a bad day and my legs swell and mottle. All of these pieces of the jigsaw are now neatly in place.

You could say, but there’s still no cure, and not much treatment. And you would be right. But the fact that I decided to take charge of my own health and fight for it has made a big difference to me. I am still getting gradually sicker and sicker. I’ve crashed out this week completely and been useless to be around. It’s not good, but at least I now know WHY this is happening, even if no doctor ever reads the research, I have, and now I know.

Knowing what’s happening, even when you can’t stop it, is much better than not knowing. It’s better to know for sure there is no cure and treatment is difficult, than to be left with the nagging sense that if only some medic could really pay attention there might be a cure.

Sadly 21st century medicine is nowhere near as advanced as fiction on tele might suggest. Too much medicine is strangled by the weeds of ego and self-serving along with political interests and of course money grabbing. Nothing new under the sun there.

Epilepsy Clinic

Saw the doc at the clinic yesterday. He spent a lot of time telling me how it wasn’t epilepsy, even after I said I never thought it was. He didn’t know what to do next as the report from my hospital admission wasn’t clear. He asked me a couple of times what I wanted him to do. The EEG was clear of course.
I’ve noticed this question comes up a lot with doctors these days. Is it part of a new protocol where patients must be so well versed in their sickness and must be so well that they are able to clearly request what they need from the medic?
If so, I might be bold and tell them what the research actually says. …. or not.

I was tempted to ask him to wave a magic wand over me and make it all stop. LOL! Well, he did ask what I wanted.

I did ask quite firmly whether he believed FMS was a “real” disease or if he was in the “All in yer’ead” camp. The question made him quite literally squirm and he wouldn’t answer. So, that was my answer.

The next step is to await the next seizure and get whoever might be there to film it.
Yes, you read that right. It’s like some kind of Shame Attack Exercise! I remember those from my psychi days.
My coping strategy had been to tell the kids that if I should have more seizures they were to leave the room and let me get on with them, and I’d call them back when it’s over.
Not any more! It’s grab the camera and film me!!

It’s a great shame that no doctors are capable of taking detailed histories any longer.

Cardiologist POTS specialist next week. And no, I am not raising my hopes.

Dysatonomia Awareness Month; Getting diagnosed and some survival tips.

I am one of the lucky ones. I have a GP who listens and is able to make sensible dx.  One of the difficulties in making a dx of POTs and other Dysautonomic issues is that the symptoms are unstable. We can have a good day and then we can have awful days.

I am also one of the lucky ones in that I don’t get the sense of anxiety, I just get shaky, dizzy, nauseous and black outs. I wonder if some POTsies get that and it feels like anxiety, and so the doc decides that’s what it is.

Most GPs have never heard of POTs, and it takes a very good one indeed to be bothered to look it up. Thank God mine is one of those good ones.

A dx of POTS can be a nasty shock for some patients, but I think for most of us it’s a relief “So THAT’S it!” kind of moment. Knowing there is a sensible explanation for what our bodies are getting up to is a relief.

Over the ten years of my illness I’ve gone through the “Dunno, but it will go away” dx to “I told you it would go away, as it hasn’t you are doing something to prevent getting better…” to “Would you like to see a psychiatrist.”

After nearly 8 years I was finally sent to a rheumatologist who spent 5 minutes poking me and said “Fibromyalgia” handed me the laughable info booklet and told me, “it does go away,” as she shoved me out the door.

Survival tip no. 1; DO NOT BELIEVE what doctors say unless they can tell you the research that backs them up.

Survival tip no. 2: Ignorance is not bliss. The only way you are likely to get a dx or treatment is if you do the reading and leg work yourself.  Get aware of the bizarre politics around these diseases and how that affects the care you will be offered or refused.

survival tip no 3: Try not to think too far ahead. Just pray for today, tomorrow will have enough worries of it’s own (as a Wise Man once said). With serious chronic illness, looking ahead can be scary and overwhelming.  “Lord, for tomorrow and it’s needs I do not pray, keep me, My Lord from stain of sin (and a crash) just for today…”

Survival tip no 4: Keep a record.  Your foggy brain, word problems, memory lapses and general fuzziness will make telling doctors what’s going on more difficult if you don’t. This is a complicated business, so having some clear notes and even photos can help.

Info for ME/Cfs Fibromyalgia, POTS, Dysautonomia.

October is International Dysautonima Awareness Month.

On 13th Sept (2012) the Federal Drug Administration (FDA of America) held a web conference with ME/Cfs patient groups. The outcomes look very promising (at last) READ an article from someone who was there.

The FDA have said;

CFS is a serious life-threatening condition- As they have finally acknowledged this drug trials can now go through the AcceleratedApproval Process!

Ampligen will be considered for approval  on Dec 20th 2012.

Got fog?  Perhaps the grey and white matter changes in your brain explains that.

UK Potsies provide to excellent Youtube videos to help raise awareness and help those of us with the symtoms whether awaiting dx or already dx get to grips with some of the questions we have.

POTS UK – has some good resources including a simple handout for good GPs.

STOP POTS and Dysautonomia

Dysautonomia Prison is an excellent resource for all sorts of aspects of Dysautomic illness. THESE INFO SLIDES are quick ways to get an overview of what it entails- and there’s a still version here. There is also this enormous list of research articles covering Dysautonmia, POTS, FM and ME among other stuff.

List of UK Specialists for POTS

National Dysautonomia Research Foundation

Invest in ME has an excellent library of documents and gives a good overview of the medical research and the appalling politics that strangles so much of it.

The Hummingbird Foundation for ME

The CFIDS/ME Patient Memorial List. This is a place to remember all those who have died as a result of this truly hideous disease. It was compiled, not just to remember the dead and show them the respect they so often hadn’t received in life, but as a type of proof to the ignorant and unethical “powers that be” that this is a disease that needs research, treatment and care for those who suffer. It is to my mind, deeply shameful, that we need a list of the dead before this debilitating illness can be treated properly.

National Cfids Foundation; Cfids stands for Chronic Fatigue Immune Deficiency Syndrome. It’s a more accurate ‘label’ than chronic fatigue syndrome.

Phoenix Rising - a hub for research and advocacy for ME/cfs Fibromyalgia and Dysautonimic syndromes such as POTS – with a great forum.

Cardiac Insufficiancy Hypothesis from ME Soc of America.

Research paper on ME with OI  and cardio probs (pubmed)

Research paper on how Fibromyalgia is probably a form of Dystautonomia! WOW! And THIS PAPER continues on the same theme (pdf)

As dysautonomia effects so much, including immunity and autoimune systems it’s not surprising there is a link with diabetes. This is a short paper on dysautonomia and peripheral neuropathy in type 1 diabetes. I haven’t found anything specific yet on genetics and autonomic disorder but I bet there will be some at some point.

Awaiting the Cardiologist POTS specialist. My personal PoTS approach.

http://www.dysautonomiaprison.com with thanks to Jane for her

hard work.

I have recieved a tentive dx of POTS from my GP after I showed him the results of two Poor Man’s PoTS tests and two days of BP and pulse. It does seem pretty clear that’s what’s going on. I discovered that not only does my pulse dip nicely to around 88 when I’m lying down, but that if I sit still just reading with the kids for more than an hour I can get it to around 88 to 91.Usually my seated pulse is 100.From lying down to standing up my pulse went from 88 to 120 on the second test which is over the 30 bpm threshold so that indicates Postural Orthostatic Tachycardia Syndrome. PoTS is a posh medical way of saying my heart objects strenuously to me standing up.

While I await my appointment with a cardiologist who knows about PoTS I have a system for trying to keep on top of it.

I have a little pulse oxymetre which shows my pulse and oxygen saturation. Once my pulse goes beyond 125 I will sit down until it’s dropped back to 100. I’ll also stop working upright if my SATS drop to under 93. Once my pulse goes over 125 the nausea is harder to ignore, my balance is much worse, and I tend to black out. Not everyone with PoTS faints. In fact most don’t. Those who do tend to have NMH as well. That is Neurally Mediated Hypotension – so their blood pressure drops dramatically.

I seem to have the opposide problem. I have hypertension but not consistently. My BP is shambolic frankly. At times the pulse pressure is very narrow.

I get the pooling in my legs, especially at the back of my legs for some reason, and have a rather unlovely POTS rash. Marvellous.  It is wise to keep your legs elevated when sitting, and I know I need to get into the habit of doing this.

So, standing up for any length of time is very difficult. Being stood up for half an hour for the “test” was pretty horrible, but I did it in the name of science – and getting a proper dx.

Research paper Hyeradrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders which may link in nicely with this piece of research.

October; Dysautonimia awareness. Never heard of it? Get aware :P

October is the Month of the Rosary, so get out your beads and Bibles and pray for all those with autonomic disorders as October is also the month of International Dysautonomia Awareness.

You may be groaning and thinking “not another awareness day/week/month!” And I suppose I don’t blame you, but the lack of awareness over autonomic nervous system disorders is almost total.  Sadly, this lack of awareness can lead many people with ANS disorders getting short shrift from doctors and shockingly uncharitable treatment from family and friends.

It’s a sad reflection on families it seems to me, when I see so many stories of people being labeled as “lazy”,  “negative” and “attention seeking” or whatever.

While the scientific and medical understanding of dysautonomic disorders is still pretty sparse, there is a growing consensus that Fibromyalgia is either part of an autonomic disorder or is one. There is also growing evidence for ME/cfs is linked with autonomic dysfunction. I can’t find studies on diagnostic trends for FMS and ME but we do know that the number of children with autism is rising at a rapid rate and that their autism is serious enough that “better awareness” in no way adequately explains the increase. Something must be triggering all these autonomic failures. I think we have quite a wait to find out what it is.

I will be posting on this over October. As I’ve recently been diagnosed with PoTS, which is very, very common in Fibromyalgia, I’m particularly interested in the research that is beginning to show Fibro and ME are either co-morbid with or are in themselves dysautonomias.

In Loving Memory and future hope.

I’d like to thank Jody Smith for giving me permission to re-produce her lovely article about her friend Lynda who died recently having struggled with CFS/ME and other autoimmune diseases.

Please pray for the soul of Lynda and all the other people who have died of this disease. May I especially ask for prayers for a lady in her 40s who was found dead at home a couple of months ago. The daft newspaper report said medics were baffled by her sudden death as she was healthy, though she had a dx of Cfs! Please also pray for the families and friends who will miss them.

Please take the few minutes it will take to read this. I think it’s a story that needs to be heard.

Chronic Fatigue Syndrome: The Thief Steals Another Friend
By Jody Smith Created 09/13/2012 – 17:44

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My friend just died. Lynda suffered from a number of autoimmune conditions, not the least of which was Chronic Fatigue Syndrome. CFS descended upon her two decades ago, after she was exposed to someone with a bad virus. They got better, and their life went on. Lynda didn’t recover, and her life did not. She lived with her two cats Oliver and Lilly.

She was fortunate to have some assistance in her home from personal support workers — many who are chronically ill don’t have any help — and Meals on Wheels. She was unfortunate in that all her old friendships had fallen away over the years and, unlike many of us chronics, she had no virtual life online. Lynda had a computer and used to know how to use it, but the cognitive thief CFS had stolen her ability to use a computer years ago.

She had a doctor who did not “believe in” Chronic Fatigue Syndrome. This despite the fact that he stood by and watched her deteriorate over many years. He reinforced her fear that it was all in her head. Though he would not treat her condition, he also would not refer her to specialists who might have done her some good.

Other general practitioners would not take her on as a patient because she had so much wrong with her. Something wrong with this picture? Lynda was a prisoner of her frail body and her faltering mental capacities, trapped within her home. One of her personal support workers had contacted me through my website Ncubator.ca, where I talked about my experience with Chronic Fatigue Syndrome. When she told me that Lynda couldn’t use her computer, I knew from my own past isolation that this is a brutal loneliness. For that reason, I did something that I never do. I phoned Lynda. Phone conversations tend to exhaust me but I needed to do it, remembering what it’s like to be so helpless and needing someone to respond. We never actually met but we spoke often on the phone over the last year and a half. It was a blessing for me to get to know her. It was a heartbreak to know that there was so little I could do for. We talked about our lives, our thoughts, our feelings. We told each other stupid jokes, and laughed like loons. I had thought Lynda was getting just a bit healthier in the last few months. We talked about having her come to visit. She was only a four hour drive away from me, but it might as well have been the other side of the world. I can’t travel that far, and certainly neither could she. But talking about that future visit was something to put some hope into. And we did. And then she disappeared. She had talked several times about believing she didn’t have much time left, and really she didn’t want to be around much longer. Life was full of grief for Lynda. I could only hope that it was just her supreme discouragement talking. But a few weeks ago, I called her number and nobody answered. I called often, and the sense of foreboding grew with each unanswered call. I emailed someone who might know what was happening — I hoped maybe it was yet another hospital stay, or perhaps she was feeling better and was just out when I phoned. I received an email that confirmed the worst. Lynda had passed away.

We would never talk on the phone again, never have her over for a backyard barbecue. She would never rest in my spare room. Lynda was afraid that she would die and nobody would notice. I’m doing what I can to make sure that doesn’t happen. I know that life was a heavy burden for her, and had been for years without let-up. I know that she had been wishing to die and now the pain and isolation was over for her. I’m trying to accept that. But mostly I feel bad for me. Because my friend is gone. Visit Jody’s website and blog at http://www.ncubator.caand http://ncubator.ca/blogger

(originally published here) I have bolded the bold parts.

There are so many more stories like this one about Lynda. A young man aged 21 died in the same month. It’s well past time for a genuine response from medics on this. Thank God for the number of researchers and medics who are willing to do the work, often at risk to their careers, to find an answer for us.

At last the FDA are recognising the seriousness of this disease and even recognising that it is life-threatening.

My health – trying to make a plan, but facing a wall.

It would be fair to say that the first week of term was really, really hard.

I crashed on Monday because I found myself doing loads extra to make up for what I hadn’t done after the holiday because I was ill again.

Then I found some safe=pace in the mid-week but yesterday I was struggling with everything, shivering uncontrollable and feeling horrible.

So. I need to do something.

I’ve come across a lot of people on the forums of Phoenix who have managed to arrest the downward trend of their illness. Some people have even manage to improve and I have been offered stories of those who have gone into remission.

So far I’ve hit a wall every time my lovely GP has referred me to some kind of “specialist”. While my heart problems are getting worse the results of my tests have vanished. There is no record I even had the ultrasound. I knew this would happen.

The cardio dx costochondritis even though I have no symptoms of it. I have chest pain that radiates into my arms, back, neck and jaw, not localised. Worse still the bloomin’eejit dx it by pressing on the fibro trigger points and asking if it hurt. Of course it hurt!

Meanwhile I was referred to a lung specialist. I waited well over 7 months and then had 3 minutes with him. He didn’t bother to ask much. I had a test and guess what? He wrote over a month after the test saying “you have asthma and you’re overweight.” REALLY? Perhaps if I could walk and wasn’t up to the eyeballs in steroids…and as for the asthma I’ve known about that since I was knee-high!

I had to cancel the next appointment for tests because I was back on antibiotics and steroids. I haven’t even had an acknowledgement,  let alone a rebooking.

I can’t even have the correct bloods done on the NHS.

So, basically I am on my own.

I have been warned by fellow sufferers who know first hand what can happen, that if I don’t find a way to ditch a lot of activities I could end up bed bound. Scary prospect.

There is a POTS/dysautonomia specialist locally but I can’t face asking for a referral. Anyway, so far it’s all gone to the wall.

I have an appt at the epilepsy clinic in October and I can easily predict (no crystal ball required) that there will be no help there either. It’s really frustrating and made worse by the fact that there could be treatment if the doctors could just be bothered (or able) to spend more than a couple of minutes with the patient!

Bottom line then? I have NO IDEA what to do, and my circumstances mean I don’t know what to stop doing either.

I know there are people out there, sicker by far than I am, and who receive no medical care at all as they are too sick to go in search of it.  I know I should be grateful for  GP who at least has tried to help, but honestly, there is no excuse for the shoddy care the NHS offers. There was even an all party parliamentary document issued around 2009 demanding better care – and nothing has changed.

Loads to offer up though :))

PHANU in Australia there is a real hope for ME/CFS and even FM sufferers.

ME/CFS research around the world is pretty spotty. The US and the UK are long-time hubs, with Canada coming on in the last few years.  Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe.  South of the equator, the picture is bleak until you get to Australia: things are definitely happening “Down Under”.

The full articles are HERE and HERE – talking about Rituximab and bio-markers

I was particularly interested to see that there will be some research into how pregnancy works in ME/Cfs.

I think Dr.Marshall-Gradisnuk was not as concrete about the hope for another Rituximab trial but at least the question is on the table. Thankfully there are other Rituximab trials continuing in America and the Netherlands. I am beginning to think that Rituximab may be our first port of call, rather than Ampilgen, if for no other reason than it’s a bit cheaper.

Even if Ampligen is approved by the FDA in America I can’t see NICE accepting it here. Stamping on the egos of the Wessley school to allow such a treatment would probably preclude it, and anyway, the NHS would never agree to pay for it.

But at least wealthier patients may have the hope of a full remission if they can pay for these drugs. In Canada the Ampligen trial has to be paid for by the patient. (How that works for the placebo I don’t know – if they survive the trial do they get their money back?)

It’s good to see some hope at any rate.

If you are interested in watching the progress of a patient taking part in a Rituximab trial THIS BLOG gives her experience as it is happening.

Fibromyalgia/ME/POTs and OI with hypertension, seizures etc. and things that help coping.

Before term starts I just wanted to write a couple of how-to-cope posts with these diseases.

Living in the UK, my chances of any in depth tests and medical help are so low as to be vanishing. After facing lots of misinformation, dishonesty and bold face lies from medics the first coping strategy I recommend is READ THE RESEARCH.

Ignorance is not bliss and even though most doctors can’t stand patients who know anything about their own illness, you need to know because they don’t. Be warned; you must use your information with caution. First of all, there’s some astonishingly shoddy pieces of research out there, so be careful what you follow. I’m sorry to say, it’s a minefield out there. A lot of research is not aimed at trying to find answers that will help sick people, it’s …well, frankly it’s difficult to tell what some of it’s for at all.

I have found Phoenix Rising a useful place to get not only the research but some good analysis of it too. It’s not the only place for good research articles but it’s easy to find a lot on one place.

Let’s take a look at some of the symptoms and handling them.

PAIN.

For many, if not most of us with fibromyalgia and/or ME this is one of the worst symptoms and the most difficult to manage. For me at least it’s been worse than the fatigue and a massive contributing factor to fatigue. There are some good meds out there, but each person is different and there is a certain amount of trial and error. Many people with ME in particular have sensitivities to drugs so read the more unusual

I am using Amitriptyline. There’s now some evidence that this works better for those of us with Fibro based pain as it has a good effect on mast cell disorders and there’s some evidence that FM might be a mast cell disorder.

I also recommend gloves and splints used for arthritis. Even an elastic bandage has been useful for me.

Things like those microwave lavender bags can help with mild pain – but to be honest I don’t think many of us with FM/ME based pain get the mild sort.

Often the pain will dictate what you can do. I have a sort of routine for getting out of bed where I wait until I can get my feet on the floor and then slowly put weight on them, then push up through knees and so on. There’s no point me saying “take your time” as your body wont allow you to anything else.

Pain can be a terribly difficult thing to get on top of. Many of us have used a chiropractor and/or an osteopath. Sadly the NHS doesn’t offer good pain management.

A lot of people have dark glasses for eye pain – mine are transission lenses which while more expensive has saved me money on drugs!

Ear plugs help for sound sensitivity.

POTS/OI

This affects us in different ways. Most people with POTS and OI will have tachycardia and hypotension. But there’s a significant number of us whose blood pressure pumps the other way; hypertension.

My system for coping with this is I sit for a lot of activities. Now, it would be better tachycardia wise if I lay down – but it’s not so good for my breathing or practical with the children. If you can lie down to get your pulse to something nearer normal, then do it.

For standing stuff. I take my pulse as I feel it getting higher. Once it’s over 130 I sit down. If I leave it to reach 140-145 I get too nauseous and pre-synocope and that’s just unpleasant. I can usually sit for a few minutes and my pulse will drop to 120 and then I can carry on. Cooking takes longer and I have to do it earlier in the day – mid afternoon for me, to make sure I can actually do it.

You will probably find a best time of day too. For some it’s the morning and some even manage to cook at a normal evening time.

I cook less fussy to prepare food these days – oven baked or slow cooker.

Shower – choose a time of day you can cope. I think a chair or seat in shower is a good idea if you can get one. We haven’t reached that point yet. I do make sure I have been sat down a while first. So far this has worked.

SEIZURES

These are a fairly new symptom for me so I’m not up on all the coping strategies. However I am learning. First, listen to your body. I get an aura and other warning signs. When I had the first ones and had a paramedic called she warned me not to fight them as it makes them worse. I discovered yesterday that this is very true.

Mine are apparently caused by low grade fever and infection. (Hence I’m back on antibios and steroids). I haven’t quite worked out what to do yet, but I think the fact that I have good idea what causes them means I need to get all infections treated asap. In the past I would wait until the infection was really obvious. Can’t be doing that now.

I have another appt with the GP on Thursday and we’re going to discuss stuff. She doesn’t think Gaberpentin or Pregabalin would help as it’s not “epilepsy” it’s a seizure disorder caused by infection and fever. However a couple of folks from Phoenix have recommended an on hand dose of Klonopin. I will ask about it and let you know.

My daughter is complaining that the house is cold as I keep opening doors and windows so that I can’t get too hot! LOL.

This piece of research is all I’ve found on bactierial infection and seizures

Frankly if I’m going to have these diseases and a blog I may as well try and write something of some use. Hope it is of some use to someone sometime.

Wrestling with angels

When we pray for all those people whose names are on the sick list at church, what are we asking for? Usually, I guess, we are asking God to heal them. Sometimes we ask God to give them the grace to bear the load patiently and even less often we might ask God to help them make a good death. But what we really want is for them all to be well again.

I go through what feels like a wrestling match over my health on far too regular a basis. Going on holiday usually triggers a major wrestling in prayer event. For some reason it wasn’t as intense this year – not so much guilt – but there was still plenty of wrestling with angels (who are all black belts in prayer).

Going on holiday is usually the worst time because it brings back so many memories of when I was well. All that walking and running around on the beach with the children. I remember being able to really pack a lot into a day and not having to face a crash a couple of days later. Then, instead of being grateful that I am on holiday, I get worried about what I can’t do any more, and start being irritating by apologising for what I can’t do.

Then I nag God for a cure again. I know the answer is “no” so I hedge a bit and ask for a full remission, just for the holiday. Then I just say I’ll go with it and offer it up and then I feel guilty for being ill and not praying hard enough to be cured and the cycle begins again. It can be exhausting…for eveyone.

My husband who is way more sensible about all this, has simply asked that as God is allowing me to get worse, that He helps us all adjust and cope with each stage. Simple. He explained this to me as he cheefully shoved my wheelchair up hill.

During my wrestle with angels this holiday, it occurred to me that I was being a bit hypocritical. I spend a lot of time writing about family life and how Christian families in particular should  be taking care of one another and so on. I sing the praises of those families who do take care of one another and make sacrifices for the sick, elderly or very young in their midst. I read saints stories and see how for many of them (Catherine Laboure springs to mind) caring for sick family members was part of the process to their sainthood.

But you see whenever I wrote or read about this sort of thing I had it in mind that I would be the one doing the caring. I would cook, clean, visit and tick the works of mercy boxes. But instead I have to do something way harder than that – I have to allow others to care for me.  Ouch! As this disease progresses I face needing more help, and having to accept this patiently.

Another thought came to me while I was wrestling with the angel on this. When I look at how the disease progresses I am usually horrified and frankly, scared silly. And yet as it does process I cope with each new event fine. I never for a moment thought I would be able to handle having seizures. I sure as heck hated having them, but I’m no longer terrified at the thought that this will probably happen again.

So God is listening to my husband! :)

Of course, when I really look, I see that the saints weren’t just caring people, they were able to be cared for graciously when they were ill. They put up with being bed bound, with hospital admissions and often with hideous forms of disease, which thankfully, we see a lot less of these days. They were always grateful somehow, even in the midst of sickness and hopeless medical interventions. They are  our role models. So it’s time I stopped wrestling with angels and said thank you.