Overdoing Things

Why?

Why do I do too much when I know it’s a bad idea? That I’ll suffer for it – sooner rather than later and for longer than expected. There are all sorts of reasons. Last week I did too much for two three main reasons: in support of family, because the weather was pretty good, and because I was feeling better than I had for a while. Now of course, I’m feeling worse than I have for a while.

All weekend, in fact since Friday afternoon, I’ve been feeling pretty lousy. Now this could all be self inflicted, but it could also be weather related – it went very changeable, and from warm in shorts to shivering in trousers and jumper – or it could be alternate health-related in that I was fighting off a cold – I was tired, sneezy, queasy, and grumpy. Which are not Snow White’s dwarfs, but which could be hay-fever instead of illness.

Does it matter which it was? Maybe not, because I felt (and feel) awful either way. Maybe I just needed a place to ramble/rant and this is it. Then again, maybe it does matter, because maybe this is the reason I keep falling foul of my CFS/ME: if when I get to feeling better I push a bit harder, don’t keep as close a watch on how I’m feeling, make myself vulnerable. . . boom and bust. Classic CFS/ME.

You’d think I’d know better after nearly 20 years, but apparently not always. That’s going to change though. I hope? I’ll try?

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.

Stages of Life – Rearranged, not Missing

Here’s the mainstream theory: as you grow up, everyone goes through the same stages of life. Terrible twos, angsty teens, adventurous twenties. . . There are plenty more in there but you get the point.

New theory: everyone goes through the same stages, just not necessarily in the same order or at the same age. This means you could display ‘the terrible twos’ when you’re thirty-six, angsty teen years may appear in your twenties, carefree child years in your fifties. . .

It makes sense I guess – we’re all human, but we’re all unique. And some of us are plain contrary! So why not?

This came up because I was feeling a bit down having watched a film (can’t remember what but it wasn’t anything serious) where they were saying how brilliant your twenties are. It reminded me of something/someone else going on about how the teenage years were best. Both films described these years as fun, exciting, crazy, the time for finding yourself and experimenting and travelling. . . I did none of that. These years weren’t necessarily bad for me but they certainly slipped by quietly, without any fanfare or huge events.

Had I missed out? Again?

According to this theory, maybe not. I still have a chance, those ‘best years’ may still be ahead of me! I did my terrible twos and angsty teens between the ages of one and— well, people disagree on when exactly I got over it, but by ten or so I was being a reasonable human being. My teen years were unremarkable, filled with trying to get through school with some reasonable grades at the end. My twenties (which, for those interested, I’m still in although nearing the end of) have been. . . well, I’m not entirely sure what happened to them. They started with university, then were marked by episodes of health and illness. Never leaving me well long enough to do more than start applying for jobs, which in a way was good I guess because it left me free to help out my gran. (When I was well, obviously)

The point being, I’ve done the terribles, the angsty, the responsible. Maybe the fun, exciting, experimental whatevers are still to come. I’m not looking for anything too extreme or crazy, just maybe something of note. Something not necessarily good but hopefully not bad, that I can look back on and say, ‘ah, those were the years!’

Here’s hoping!

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The Hangover

While writing the post on symptoms involving the nervous system, I nearly compared them to that of having a hangover. I decided against it but as I continued writing, this idea must have been bumbling at the back of my brain, because I decided it was more accurate than I’d first realised. Now, I’ve never had a hangover, so anyone feel free to correct me, but from what I’ve heard the symptoms can be surprisingly similar.

The difference is you inflict the hangover on yourself and it lasts a day. I have no choice and it’s much longer.

So anyway, description of a hangover:

You become conscious – sort of. No, you know you are because you feel terrible. Prising open an eye is a major battle, and when you manage it you wish you hadn’t. Light too bright, and it’s such an effort to keep that eye open. You feel like you’ve been gone over by a steam-roller – you’re plastered into the mattress so that trying to move is the worst idea in the world. You try it anyway. Your head hates you for it. It’s being stabbed from the inside, spun on a spinny kids ride, and is stuffed full of something that’s too unhelpful to be a brain and much too big for the space occupied anyway.

If you eventually make it downstairs – congratulations on that by the way – the torture just keeps coming. There’s more light and noise and people. Too loud, too happy, too bright, too alive. Slumping into a chair you prod your brain into thinking of food because you know you should. But it’s too much thinking of it, never mind actually making anything. Even if someone put a plate in front of you, you’re too tired to eat. Besides, you’re not hungry. You’re cold, shaky, feeling like you’re in the wrong body because your co-ordination’s shot and things don’t feel quite right. Food would probably taste weird too.

Everyone around you is going about their day.

Someone asks a questions which, by the time you’ve worked out what they said, what they want, and what you could say in reply, they’ve gone. Finally you’re alone. It’s blessedly quiet and still. But now you have to move again because you’re going unconscious in the chair. You stand up– nearly fall. Getting your balance, you start trudging forward– bounce off the door frame because you missed the hole. Another bruise. Keep trudging.

Upstairs is too far. You make it to the couch and collapse. You’re still strangely cold, achy, impossibly tired. Damn, you need the loo. But you fall asleep before you can make up your mind how desperate you are. You know because someone’s waking you up and now you really do have to go.

You’re meant to be eating something again. It’s evening. Apparently when you were awake before it was a bit after midday.

You want to crawl into a dark pit and die, except even that sounds like too much effort. You’re no less tired than before, still not hungry, you have a killer headache (and don’t you wish it would get on and finish you!) and now you ache all over too. Needless to say your mood is not the best. Despite this you’re so tired you also don’t feel much of anything else. Until someone asks you another question and suddenly you hate them. After a bit the feeling goes again though. You’re almost numb, uncaring – you’ve switched off the world. And why not? You can’t take part in it, you only make everyone else miserable or uncomfortable, and you don’t feel any better than when you woke.

Will the day ever end?

Someone offers comfort – ‘you’ll feel better soon, everyone has a bad time now and again’. In your head, which has decided to function minimally (yippee), you know they’re right. At the same time you wonder how that helps. So you get better sometime. This’ll happen again, and then what?

Time to drag yourself upstairs. You can’t face a wash, you can barely hold the toothbrush. You bumble into your room, crawl into bed. Will tomorrow–?

(Return to start and repeat)

Symptom: Affects on the Nervous System

Basically the nervous system is the thing that transmits signals around the body, and if something interferes with it, all sorts of things can be affected. Some symptoms people with ME/CFS may suffer from in relation to the nervous system are:

  • Difficulty with temperature control, and night sweats
  • Tachycardia (rapid heart beat) & palpitations
  • Narrowing of blood vessels can cause facial pallor, cold hands and feet
  • Sudden changes in blood pressure can cause a feeling of faintness or fainting
  • Difficulty with balance
  • Disruption to sensory nerves can affect how you feel pain, pressure, temperature. It can also cause numbness, pins and needles, or an increased awareness of sensation

Usually none of these symptoms are life-threatening in themselves, but they can cause more serious issues. They can also be scary, debilitating, frustrating, or at the very least an additional problem to struggle with.

Apart from people constantly saying how pale you look, or the possibility of falling and injuring yourself, there are other considerations. If you feel you can’t trust your senses, it’s another reason to shut yourself away from the world. Ditto for feeling faint or having uncertain balance – even if you don’t fall you’ll probably be worrying that you might. Feeling cold is another thing that encourages you to stay curled up somewhere, and just putting on more layers really doesn’t help. Take it from one who has tried it!