Be kind to yourself and don’t be afraid of making this your Mantra:
“I WILL, BUT JUST NOT TODAY”
I always cringe when I set out the following advice as I am not medically qualified but I do have far too much experience with this illness not to know what I’m talking about.
I hope this helps and doesn’t sound like I’m preaching…
I do so hate to read that a Member is in such a bad way at the moment. It brings back all those sad and frustrated emotions which I know only too well.
Just as important as your supplement, in my opinion, is Pacing.
Lying in a dark room, at your worst, presents no problem to Pacing – you can’t do anything so you’re not tempted to!!
We (my daughter and I) started off, right at the beginning when we were learning what it was all about, and later, when we needed to go back to basics, by giving every little “activity” a score out of 20. The higher the score, the more tiring. (Talking on the phone = 8, showering = 7, eating downstairs at the table = 12, reading for 10 minutes = 10). It’s different for each person.
After a few weeks we realised that doing more than 20 per day lead to a relapse which could last for days or even weeks when she was so very bad.
We soon worked out that using eg. 15 a day kept my daughter on an even keel, no great highs or lows but stable and even able to lead some sort of minimalist life whilst not getting worse or suffering with too much pain, exhaustion, brain fog, etc.
After a couple of months, the scores had to be reduced for each activity as they weren’t as onerous as before, and we could introduce welcome new ones to throw into the pot.
All this was painstakingly slow, depressingly introspective and isolating but it did get us there in the end.
Think of Pacing like a bank account – never use more energy than you have in the bank or you’ll go into the red and suffer from it.
Only spend a max of 80% of what you have in the bank so you have some left over for the next day, or better still, the day after next.
Remember that (one of the tell tale symptoms) with the illness, exertion on Day A. isn’t usually “paid for” until Day C. (post-exertional malaise).
That way you’ll always have a reserve and be able to build up a bit more reserve (on your rest day/s) than the minimum required of 20% .
Also, only set yourself realistic goals so you’re neither disappointed at “failing” nor trying to burn the candle at both ends.
This isn’t a defeatist attitude, quite the opposite!
Cheat and therefore win against ME – trick ME into thinking it’s winning but all the while you’re playing the long game and will win in the end.
Rest is Best!
Dear “Worried”,
I’ve absolutely no way of knowing how severe your illness is or how long you’ve been suffering. I don’t know your age or your circumstances…
What I read though is that your job may be in the balance unless you can achieve some very tangible improvement in your health.
Losing your job may not be the horror you envisage – a wrench yes but not necessarily a bad thing for you. If it were to come to it, and you can no longer work, I would tell you that it may be a blessing in disguise, as far as your health is concerned.
We all cling, with desperation, to what is and has been our normal life but with your illness, “normal” goes out the window. The illness is no respecter of dates, red letter days, Monday mornings, birthdays, Christmas, etc. It will rob you of many of these for a long time.
Life will change considerably, maybe it has already. The thing is, you don’t like where you are at the moment, it’s really scary and very possibly lonely, but you’ve got to do all you can to get to a better place, where your health is no longer a hindrance to what you want to achieve, no longer a source of constant negativity and disappointment.
Being forced, or better still, choosing to give up your job will allow you the time and the environment everyday with which to nurture yourself, physically and emotionally, which will go a long way towards your recovery.
Work, stress, travel, timekeeping, running a home, having a social life, family commitments, etc. etc. are all preventing your body from healing itself, which is what it desperately needs. It’s crying out to you that something’s very wrong and it’s begging you, with all too frequent, painful reminders, that you’ve got to take care of yourself in a positive way.
Forcing yourself to keep to work timetables and weekdays, doing far too much at the weekends just because it is the weekend, is a pattern which will simply make your illness worse and/or endure for longer.
It’s a desperately sad truth to accept but when you finally recognise that you’ve got to take on the responsibility of helping yourself recover in the best possible way, and that that may mean no longer working, then you’ll be on the road to eventually getting back your life, or to starting an exciting new one.
Of course, stopping work brings with it the stress of not having the income any longer but there are benefits out there to help you and, if you really take pacing and rest seriously, your expenditure will be cut greatly. The MEA is a good source of information about Benefits http://www.meassociation.org.uk/.
You WILL recover, but only if you look after yourself, nourish yourself, pace yourself, and be kind to yourself.