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.