ME/CFS Clinic – I got there!

Yesterday was my appointment at the ME/CFS Clinic. The news is. . .

  1. I really do have ME/CFS. I have been diagnosed twice, so there’s no arguing with it.
  2. There’s no miracle treatment but they think there are things I could try that might help.
  3. I have to wait for a phone call to make an appointment to go back.
  4. I am to start thinking about my future

So I have fallen from one wait to another, and likely there will be another wait after that, and another after that. . .!

Immediate advice I was given was to try using something called ‘First Defence’, which is a thing meant to help prevent you getting colds, and the other thing was to get zinc lozenges, which does the same thing. Anyone heard of those, or tried them?

I’m also to start thinking about what I want to do with my life (I think I might be slightly insulted) which feels like the ‘what do you want to be when you grow up’ question all over again. Being a bit before themselves aren’t they? I mean, there’s positive thinking and then there’s arrogance: just because I’ve been dealing with this without medical supervision doesn’t mean as soon as they get involved I’m going to improve. Maybe I will, but I’m not going to go sky-high with plans just yet.

Think I should tell them something outrageous just to see what they say?!

The other things that I have to go back to learn are ‘tools to help me manage my condition’. From my previous phone call I would guess it’s going to be Graded Exercise Therapy and mindfulness.

  • Graded Exercise Therapy (GET) is when you gradually increases the amount of exercise you can do over a period time. The NHS supports the use of GET as a treatment for ME/CFS. The ME Association does not.
  • Mindfulness is a technique used to reduce stress, anxiety and depression by increasing awareness and ‘living in the moment’.

I’ll probably do a post on of these in the near future – there seems to be a bit of controversy over both methods and it’ll be research for what I might be in for!

I guess this first consultation was mostly just to confirm I have ME/CFS, because I wasn’t really asked anything much about how I cope or the emotional side of things. Which makes sense. The consultant/doctor diagnoses then the occupational therapist takes it from there. I’ll probably have to do another round of questions when I go again. . .

That’s where I’m at at the moment then. Which is pretty much where I was before as far as I can see, except I have appointments and talking and whatnot to (ahem) look forward to. Oh, and when my Gran found out I’d been to see someone she asked, “did they say when you’d be over it?”

By the way, if you haven’t been inundated with the mindfulness craze please let me know. I want to know where you’ve been living so I can go there – it will reduce my stress levels! (No insult intended to those who practice mindfulness, I understand it is a legitimate technique that has had a positive influence on many people.)

Telephone Interview: check!

For those keeping up with these things, I have recently made foray’s into finding out about my condition, the most recent development being a referral to an ME/CFS clinic requiring: a) a phone interview, b) pages of questionnaires filling out, c) the appointment.

a) took place yesterday. A half hour phone call with a nice lady whose name I can’t remember and who called me ‘luvie’ while saying how well I was doing, reassuring me I ‘wasn’t the only one’, that she’s heard much worse/heard it all before, and that this wasn’t a judgement phone-call.

Needless to say, I started wondering if I was being judged. Then I realised that of course I was. Or not judged specifically, but evaluated – that was the point of the call, to evaluate my situation. Anyway, I thought I handled it pretty well. Until she said I sounded very positive, and I realised I’d been doing my public ‘everything’s fine and dandy’ act. It got worse. When I put the receiver down I discovered I was shaking, dizzy from either not breathing enough or breathing too much, my fingers refused to let go of the handset, and my arm ached when I straightened it. Oy.

Lucky me, I get to go through the same thing again when I go for my appointment next week.

And it’s the same stuff again on the questionnaire I need to get around to filling in before I go.

How many times do they want to hear the same thing?

Also, how does it help them asking “if I could wave a magic wand and do anything, what would you want to get from this?”

People should be given a warning on their referral, something along the lines of: if you continue you will be asked the same questions many times by incredibly disturbing upbeat people. They will want to induct introduce you to their cult group and brainwash you teach you their ways.

I have high hopes for this, I’m not pessimistic at all.

Note: the questionnaire doesn’t fit for me at all. I’ve had to photocopy the lot and fill it in twice, write notes instead of ticking boxes on a scale, and have probably ruined the whole system. Oops. They will rue the day they heard my name. . .

Questions for A Doctor – Part 3

A couple of months ago I went to see my GP (Questions for a Doctor) and was referred to an ME/CFS clinic. I phoned to set that up and was told I would then need to wait for them to contact me – the consultant had to review my case. Fair enough. While waiting to hear back I received three letters saying I hadn’t taken up my referral and could I please do so. I also had my GP asking if I had done anything about it. I phoned the clinic again and was told I had to wait. Apparently not only is there a long waiting list but their system doesn’t mesh with the NHS system, which is why I kept being sent letters I had to ignore.

I waited some more.

Yesterday I received the letter:

“We would like to welcome you. . .”

Yes! Even better the phone interview is the end of this month, and my appointment at the clinic next month. Very impressive considering I was told the waiting time to get an appointment, which you only got after the phone interview, would be several months. It’s nice when things work out like that isn’t it? Unless the consultant took a look at my file or whatever and decided I was a sad case indeed – get this person in as soon as possible!

Anyway, I now have that to look forward to: a half-hour phone interview talking about my condition when I have a phone phobia, followed by a visit to a clinic I’ve never been to before where I’ll have to talk about it some more. (Am I nervous? No, I’m not nervous. Of course not. Why would I be nervous? Or anxious. Or worrying. Or starting to think about what they might ask and how I might answer and what if I don’t explain it very well because it can get quite complicated and sometimes I forget things and–)

Ok. It’s all good. Because this is a good thing. Right? Yes. So, phone, appointment, oh, and I have to fill in a nine page questionnaire plus two pages for ‘describe a typical weekday’, ‘describe a typical weekend day’. Wonderful. All those strongly agree/strongly disagree type questions on something that can range right from one end of the spectrum to the other depending on if it’s a good day or bad.

One other slight problem: what’s a typical day? Typical day when I’m well, when I’m ill, typical day at the moment. . .? Typical day in summer? A rainy day? And who has ‘typical’ days anyway?

Enough of the rant – apologies for that! – The point is I’ve got the letter, the appointment, and I’m hopefully on my way to getting some answers/advice. Since they have to re-diagnose me before they go any further, I don’t know whether to hope for the ME/CFS diagnosis or not. Either way will mean a string of appointments with no guarantee of any treatment or improvement. Still, even if I just get told I’m doing an okay job and to carry on, at least it’ll be some reassurance that I might be doing the best I can.

Book-view: ‘Living with M.E.’

Title: Living with M.E.: the chronic/post-viral fatigue syndromeProduct Details

Author: Dr Charles Shepherd

(Image from Amazon. Click here to view)

 

‘Living with ME’, as you might guess from the title, is all about ME/CFS. There are four parts to this book:

  1. What is ME/CFS (definition, history, causes, symptoms, quality of life and recovery, current research)
  2. Practical steps toward coping (dealing with doctors, drug treatments, self-help, mind and body, alternative and complementary approaches)
  3. Learning to live with ME (3 case histories, relationships, jobs, your home, increasing mobility, help and benefits available in Britain)
  4. Appendices (useful names and addresses, further sources of information)

In the blurb on Amazon it is described as ‘A well-researched, comprehensive guide, LIVING WITH M.E. is THE book to buy for any M.E. sufferer who wants information not speculation‘. Certainly as I read it I was going – that is so true. I have that! I never realised that might be connected to having ME/CFS. I wish I’d read this years ago. . . There were also bits that I skimmed or missed out entirely either because they weren’t so relevant to me or I wanted to read other bits more.

What’s almost as interesting as what’s inside the book is the divided opinions it seems to stir up. (Check out the reviews on Amazon!)

A lot of the condemnation levelled seems to relate to 4 points:

  1. Information is out of date. The publication date may be 1999, but the book can be found on the MEA website so presumably has their approval. If that’s not good enough for you then (to put it bluntly) don’t buy it. Also, from what I’ve read, although lots of studies are ongoing there hasn’t been any great change between the majority of what’s in this book and current provable information. Admittedly I did only skim-read some chapters.
  2. Conflicting/confusing advice. Consider: no-one knows what causes this condition, there are a huge range of symptoms, and there are no definite cures or treatments for ME/CFS precisely because what works for some people doesn’t work for others. Is it surprising then that Dr Shepherd doesn’t say ‘do this and you’ll improve’? He gives you information and lets you make up your own mind.
  3. Information is wrong. A serious statement if true and since this book matches information I’ve seen from other sources. . .
  4. It’s discouraging and depressing. I’d say realistic and honest personally. The book does not dispute that people get better. It encourages you to have hope, keep trying, and have a positive attitude toward getting well. What it doesn’t do is give false hope and declare that because one person (even several people) got better this way it means that everyone can.

I got a second hand copy of this book and must admit I was somewhat daunted when I saw the size of it. (512 pages) But, because the information is so clearly divided into sections as well as chapters, and there’s a decent index at the back, you can find what you’re looking for quickly and easily, and you don’t have to read the bits you’re not interested in. If you want to go straight to treatments then do so. If the science of the condition hurts your head (it does go a bit technical in places) skim it, or skip it altogether. Simple.

Because no definite ‘this is so, do this’ advice is given, this may be more of a challenging read than other books on the topic. But surely that proves the information given is thorough, reasonably balanced and genuine? For example, when dealing with alternative and complementary therapies (a large section I feel I should point out) both what the therapy is to treat and potential side-affects are given, then sometimes the author’s opinion on whether this treatment is worth trying.

The book makes you think – here’s the positive, here’s the negative, and have you thought about this?

It’s true, if you want inspirational stories then this probably isn’t the book for you, but if you want facts and useful advice, then this is a decent place to look.

Note: Dr Shepherd is medical adviser to the ME Association, and suffers from ME/CFS himself.

 

Questions for a Doctor – Part 2

I went in for my blood test results and, surprise surprise, everything is fine. Which is only what the doctor suspected of course and these blood tests are only being done because the ME/CFS clinic she referred me to wants them done. . .

In fact I did have two borderline results. One was vitamin D (Uh, it’s the end of winter and we’re in the UK, most of the population probably has slightly low levels right now) and the other was iron. What was done? I was told to “get out more, you have to get out!” and given a prescription for iron tablets because “someone as young as you shouldn’t have levels that low.” The woman is obsessed with my age!

And she wasn’t done with me yet. “What changes have you made to your lifestyle since I saw you last?

To put it politely, I was flabbergasted. (An excellent word don’t you think?) What changes was I supposed to be making exactly? As far as I could remember, she hadn’t told me to do anything except go for the blood tests. And get a job. Was I supposed to have done that within the last few weeks, while I’m only just recovering from the effects of a Christmas cold that lasted over a month? As it happened I’d also had an infection under a tooth which was leading to an abscess and had been in agony and taking painkillers by the dozen the last week or so, along with antibiotics prescribed by my dentist.

You’ll be amazed to hear I hadn’t felt up to doing much. Not that I knew I was meant to be doing anything in particular anyway.

When I explained about the toothache (such a poor description!) she nodded understandingly and asked if something like that set me back. Set me back. I had barely eaten for days and nearly called emergency services (not that she knew because she didn’t ask) and she wonders if that sort of thing sets me back.

I’ll admit I was a touch annoyed by this point, and my temper wasn’t improved by her conclusion that the next step was to have the ME/CFS clinic re-diagnose me so that they could sort me out.

I could almost hear the suggestion of, ‘therapy for a start, to correct your wrong-thinking and get you up and out into the world, because you’re too young to be malingering and wasting your life like this.’ For clarification, this wasn’t said aloud, but it’s certainly the impression I got.

Oh, and after I’ve been to the clinic I’m supposed to make another appointment to see my doctor to ‘give her feedback’. Does anyone else think this would be a waste of resources? I’m sent to the clinic because they know (hopefully) what they’re talking about and how best to help me. Why then do I need to report back to my doctor? Aren’t doctors able to contact the clinic directly anyway? If that sort of thing is happening a lot, it’s no wonder the NHS is struggling.

I can only hope I have a better time at the clinic, because this doctor really isn’t doing much for my faith in the medical profession.

Questions for a Doctor

In the interests of rediscovering all I can about ME/CFS, I made an appointment to see my GP. Although there’s tons of information online, I wanted to get a medical professional’s take on my personal syndrome and how I’ve been coping, current treatments, alternative therapies, and the possibility of starting a family. In ten minutes. It’s possible right?

Here’s something you might not know: just because doctors believe/accept this condition, it doesn’t mean they’re any more sympathetic or know more about it than you do. But I’ll let you decide for yourself.

Highlights of the consultation:

  • I was informed that attitudes towards ME/CFS have progressed since I was diagnosed, and there are therapies to help.
  • I was told I’m lucky not to suffer extreme pain.
  • I was referred to a clinic that specialises in ME/CFS, which means a new round of blood tests to be done first. (The two separate appointments will have their own waiting times of course, ones for the clinic looked to be over a month, so nothing unusual there!)

Bad/worrying points:

  • There was no record of my diagnosis in the system, no mention in my notes of me having ME/CFS. When the GP realised how long it had been since I’d seen a medical professional she was shocked and looked at me like I was crazy. Explaining I was told there was no need for me to see someone unless something changed significantly for the worse (and her admitting they probably couldn’t have done anything anyway) didn’t seem to help.
  • I had it pointed out (several times) that I’ve changed a lot since I was twelve.
  • I was never asked how severe my symptoms were or which ones I had specifically.
  • The advice she gave was to pace myself. Good advice if I hadn’t received it when I was diagnosed and acted on it then.
  • When she heard I lived at home with my parents and had no job she looked more shocked than before and recommended I get a part time job. It would be easy because I have a degree.
  • When I mentioned I’d put off starting a family because I thought it would be too much for me and make my condition worse, she (again) looked at me like I was crazy. There’s no need for that, she said, that’s what a partner’s for, and finding one of those is what a job’s for. (?????)

The result? I have a referral, learnt that ‘acceptance’ doesn’t necessarily make things better, that I was incredibly lucky when I first went to see doctors about my illness, and I’ve had the value of the understanding, curious, ordinary people I’ve met during my life reinforced.

Today there were questions I didn’t ask because I felt my GP hadn’t troubled to understand my condition and my situation, instead making assumptions and judgements. Maybe she’s right and these blood tests will show I have some other condition that can be treated with a pill or an injection or whatever – it has been many years with many changes since I was twelve after all. Maybe I should do what she says: get a job and start living my life because I’m so young and missing out on so much by isolating myself. . .

Uh, wait a minute. What was that about the progression of attitudes toward ME/CFS?

A Slice of History

I was diagnosed with ME/CFS as a child. I was in the last year of middle school (aged 10/11) and both the school and my parents said it was essential to find out why I was ill so much before I moved up to senior school. I was taken to the doctor, who asked questions and ran tests and sent me to the hospital, who asked questions and ran tests, and assigned me a consultant who- you get the idea.

With everything else ruled out, and since I’d had the symptoms for over a year (never mind the mandatory three months) she diagnosed me. She suggested that the trigger in my case – or at least a significant contributing factor – could be environmental: sick building syndrome. Between my first and second years (aged 8/9) the school moved to a brand new building. Right after that lots of people – students and staff – suffered with severe headaches and were going to the doctor with all sorts of medical complaints.

After being told I had this condition, my consultant said it was really unusual to get it so young (lucky me) and it was most likely I would have it for x years (I can’t remember the exact number) and then it would go into remission, hopefully for good but possibly flaring up if I had a period of excessive emotional or physical stress. If it persisted past that number, I would probably suffer from it to some degree for the rest of my life.

As for treatment. . . There is no cure, no single treatment. It was suggested I could keep a diary to help me cope (no thanks) see a therapist/have counselling (but you don’t really need to since you have a good relationship with your mother) and apart from that. . . try and learn to live with it.

I learned. It persisted.

But I’m sill here.

I know some people see my life as wasted and me as a layabout, because I don’t have a job, because I’m ill so much of the time, because my life isn’t conventional. (A ‘normal’ life, what’s that?) But most days I feel I’ve done the best I could, and I do do what I can when I can.

And I am still here.