Sunday, May 31, 2009

Prompted by questions

ME/CFS is a difficult beast to describe, not only are the symptoms varied - both in type, frequency and intensity, they can differ from person to person.

On top of that, there are things to take into account depending upon what 'stage' of the illness you are at - and I don't mean 'beginning, middle or end' because for a person with ME/CFS there is no end and the beginning and middle are just an ongoing cycle of good and bad periods.

No by 'stage' I mean one of the cycles that exist in my mind regarding my own personal experience of it:

By denial I mean, you and everyone else disbelieving it's something other than stress/ over work, thinking that you can just push through it and then wondering why you feel worse every time you do something.

Boom and bust
You have good and bad days, on the bad days you stay in bed - on the good days you try to make up for the bad days and over do it.

You finally get a diagnosis but they can't treat or cure you, no one knows or understands what is wrong with you and you try every 'cure' you hear about following extensive research online

Fear (masquerading as pace)
You've tried CBT and GET and you got worse, you cut out caffeine, dairy, sugar, fast food - anything that might be a trigger, you stop going out, you barely do anything around the house, you just spend 90% of your time 'resting' - all because the thought of triggering a relapse that makes you worse than you are now scares the shit out of you.
Getting past that is the hardest part of this illness.

You realise that it isn't going away and that living in fear of a relapse is what is crippling your ability to enjoy life, you start to do more and just succumb to the 'crash' when it happens.

Boom, bust and pace
You start to do more again but keep another exercise diary so you can try and judge the level of activity you can take before you crash, after a few weeks of this you sort out a routine, get depressed when it doesn't seem to help - at this point you either go back to the fear cycle or move properly onto pacing

You start with one activity a week - mental or physical (its how I did it) and cut it down into individual tasks that you spread out over the week. a couple of weeks later you up it to two activities - again split into tasks. The basic rule that worked for me was 20mins work followed by 20mins rest (and rest was sitting down and concentrating on my breathing - try hard to think of nothing else)

It took me around 2 years but I was finally up to the stage of doing a 10wk course (4hrs a week) on using Photoshop and dreamweaver - I was knackerd but being with other people and using my brain again made me feel better than I had in a long time!

Some people find it harder to cope than others for various reasons as it's really hard to come to terms with losing your life by degrees and its bloody hard work clawing it back - especially when you don't feel as though any progress is being made

This is where the exercise diaries are golden, I look back at my blog in the early days and look at the medical file/ benefit claim file and other documentation and can't believe how much I've improved.

I put it down to three things:
  1. Diet; I've cut out alcohol, most caffeine (we don't count chocolate do we folks) processed foods and carbonated drinks (well, naturally sparkling water like badoit is still on the allowed list, dandelion and burdock is not)
  2. The love of a good man; Stef has not only been the person to carry me to and from the bathroom during the bad times, he's seen me through the intermediate stuff as well, he took on the housework and cooking so I could study and build up my self confidence again, he's pushed me to try harder and been there to pick up the slack when doing so has made me crash, making me feel that it's ok to try and crash - so long as I try. He's always telling me how proud he is of me and how great I am.. Without him I'd still be stuck in the fear cycle and that is truly no way to live.
  3. Sheer determination combined with a positive attitude; easier said than done, this illness will beat the positivity out of you without somebody like Stef cheering your corner. You need help and support all the way - ESPECIALLY when you hit a bad crash following a really good spell.
I'm not cured, no way - but I have a pretty fantastic life despite it, my daughter is proof of that:


francisthefearless said...

Hi Vics
I was first diagnosed back in early 1990s, tried some of the things you say, but think I was to stubbon to give in apart from when body took over completely, the turning point for me was treatment from Raymond Perrin which truly made a differance within 12 months, I know all the things you remind me I should do but choose to have some sort of life, also found that other health problems blamed ME for were actually creating greater problems for my body, eg extensive arthritis


Vics said...

Hey Jeff,
I think you've pretty much nailed the worst danger with this illness; once you get an me/cfs diagnoses most other symptoms will be lumped in as part of it - and not just by the dr's.

When I found out I had rotator cuff strain I was shocked because it just felt like a bad ME/CFS ache flare up (just in a new place)and when I developed Menieres disease I just thought it was a new 'delight' foisted upon me by it.

i reckon rule of thumb for all of us is if something 'new' shows up get it checked asap - none of us want to end up like Lynn Gilderdale yet too many of us do :0(