Tag Archives: ME

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.

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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.

Trusting the children to get on with it – even when I can’t.

I have the flu. It has floored me and all my careful end of term planning to help me plan the beginning of next term has just hit the wall. This is where I get a bit frustrated. So, I am trying to re-adjust the planning and get the children working with me feeling non-functional.

After the problems over the summer I thought I should plan ahead for ‘eventualities’ but I think I may have planned myself into a corner. I am slightly more functional today so I’m going to get them working and hope we can adjust the plans as we go.

Yesterday the children just did reading. That’s still learning, so I’m not worried. I think the key to keeping the whole thing moving along is to have the children in the habit of learning no matter what’s going on. I am trying to write out plans so the children can get on, and if someone else needs to step in with them, they will see what is happening too.

crappy peopleI don’t know any other chronically ill home educators at the moment, so I really am making it up as I go along. Thankfully I don’t feel pressured to “Perform” from anywhere but myself at this point.  The only person getting bored and irritated with chronic debilitating illness is me.  I’ve been reading the wonderful blog Living with Bob on and off  and I noticed, that like so very many other FMS/ME/Cfs/POTS/dysautonomic folks she has lost friends and family over how sick she is.  (scroll down to sorting wheat from the chaff). I think the fact that many/most of us have seen friends and family vanish (run screaming) into the sunset, we learn to be more self-reliant.

If you look at this article and comments that says a lot of us are labelled as slothful  you will see heartrending statements of people left destitute when too ill to earn money. These are people who have families comfortably off.

Frankly, after ten years, I really couldn’t care less what people think of me. God is my judge; and thankfully a merciful one.  I am very, very blessed to have friends that have been sensible about how sick I am. and I have always had exactly what I needed to get through each day – even in a full on crash.

I do think us sickies need to be cautious when it comes to “wheat and chaff” that we don’t turn into the very chaff we are blowing off. Just about all people who have vanished from my life or are at more than arms length are those who want everyone to be looking at them. It’s all about Me/myself.I people. Well, the danger is we start having the same attitude because we are ill. Having children is a great balancer. It’s about them and their needs and that helps keep the “ME” stuff at bay.

research into ME/cfs at Newcastle University

Via the POTS Uk facebook page I’ve learned that a group at Newcastle University here in the UK, have received £1.6 million to do research into the bio-medical side of ME.  Specifically they are trying to discover what causes the autonomic dysfunction in patients with ME.  Prof. Julia Newton is involved and from what I’ve gathered on forums she has a very good reputation.

I can’t work out exactly what’s happening here but from a discussion on Pheonix it looks as though this new research is a continuation of a sleep study done some time ago.

What’s interesting about this study is it seems to see ME and dysautonomia as linked. Prof. Newton is known for her work with POTsies. According to one comment on the Newcastle University page Ramsey in 1981 included orthostatic tachycardia as part of the ME diagnosis.

There’s a couple of aspects of this research that I am uncertain about – and therefore being cautious about. First of all there doesn’t seem to be a definite answer, that I can find, on the ME criteria they will use. One poster suggests separating out patients who fit the International Consensus dx and those who don’t.

Proper well targeted research into ME in the UK has been very thin on the ground. The bizarre insistence that patients have either made the disease up, brought it on ourselves or are depressed (and nothing else) has helped block funding and proper care for patients, especially in the UK, but elsewhere as well.

I am not an optimist. But I’m not a pessimist either. I do wonder, even hope, that as the “old school” people retire and die off, their egos in tact, that new research, that genuinely tries to find a suitable treatment, management and, hope of hope, a cure, could happen.

Dysautonomia POTS ME/cfs Fibromyalgia – Body thermastat is bust.

Here is a really good overview of some of the strange body temperature and other problems we face I note that a few people who suffer with the heat have bought cooling vests.

Living in the UK, it’s not often that heat is a real problem. But when it is – it is very difficult to stay cool. Having said that, for me (and others) being hot is never the issue. We sit in the bright warm sun of a Summers day, wrapped in a shawl and shivering like crazy. To say our body’s thermostat is bust, is an understatement!

However, beware! Sometimes you feel shivery and cold when in fact you are hot and wrapping up to get warm without checking your temp can lead to heat stroke, even if you are still shivering. I only learned this recently. It’s a good tip because I have been in the habit of wrapping up if I’m shivering.

But in the Winter my temp drops signficantly. This is not uncommon with this illness. Like most dysautonomia/FMS people my basic temp hovers around 96.6 to 97.1 F which is about 35.8 to 36 cel. So pretty low. I get very cold, very quickly and along with the lovely Reynaud’s phenomenon I get real problems with increased pain and confusion.

Here’s a tip I’ve found helpful. First of all invest in a good pair of arthritis thermal fingerless gloves. You can wear them under a normal pair of gloves for extra warmth. They are great at joint pain control and I have found they reduce the Reynaud’s which is great. The very ends of my fingers are more or less dead now, especially my right hand, and the Reynaud’s just makes things worse. But these gloves genuinely reduce the pain and white wrinkled fingers that Raynaud’s can produce.

The other thing I’ve found helps me a lot is having some nice shawls. Not good advice for the men I’m afraid.  But shawls are great. They go on easy, and when that heat wave hits, they come off, and go back on again as your temp drops so fast. I love my shawls. They also double as Montessori work rugs when required 🙂

You don’t need me to tell you to buy thermals. And ladies, those high waisted firm control panties – they help the nausea and the pooling as well as adding extra warmth.

Thick socks for warmer feet of course, and those ridiculous thick woolly animal slippers that come half way up your leg. I have overcome the children’s tendency to laugh at this by providing them with their own pairs.

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