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.)

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.

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.