I am swallowing my pride and asking for your help. Anyone who has any level of interaction with me, I really need your help to survive the next few weeks.
Let me explain… I finally saw a clinical psychologist yesterday who works alongside a physiotherapist in rehabilitating people with CFS/ME. The relief in talking with someone who not only actually understood what I was talking about but was sympathetic and positive about me making a full recovery (with time) was immense but what she has asked of me feels nigh on impossible.
The main cycle I have been stuck in is a rollercoaster of doing too much one day (because my energy, in comparison to my ‘normal’ is good) followed by feeling much worse as a result and having to spend a few days in bed recovering. Even on my good days, I struggle with a ¼ of what ‘normal’ people can manage. If you’ve ever travelled – three hours to the airport, several hours check in, a twelve hour flight where you can’t sleep, getting through passport control, jet lag of a few hours, several more hours travelling from the airport to your hotel where it’s only nine in the morning and you aren’t allowed to sleep until the night – well, imagine that feeling of exhaustion and you get some sort of idea what CFS feels like constantly. And no matter how much you rest, you still feel that exhaustion. It feels like you are dragging chains around behind you, Marley-style.
Apparently, though, the very rest I have been feeling is vital to survival has actually been sapping me.
Our bodies need 8-9 hours sleep a day and any more than that and it starts having an adverse effect – any less than 7 and you also start doing damage. So despite my body saying it was exhausted, giving in to that and sleeping actually prolonged it and made it worse. You see the vicious cycle?
Last autumn I saw a rheumatologist who suggested I regularly went swimming and I have been faithfully doing that. It hasn’t had the breakthrough I was hoping for though and now I’m discovering why.
According to my psychologist (it’s NOT all in my head but they have to treat it under mental health because blood tests/scans all come back fine!), I have two ways of approaching the next few months:
- Slowly cut back on the time I spend sleeping; or
- Go ‘cold turkey’ and set a schedule for my day which I rigorously stick to.
And being me, I’m going ‘cold turkey’. This means I have to crawl out of bed at 6.30am each morning and am not allowed to get back into it until the evening, with a set ‘lights out’ at 10.30pm (although I may push that back to 9.30pm!). I am allowed one 20 minute nap if I absolutely have to.
It’s sheer agony.
And I’m not overdramatising.
You are talking to someone who has previously been surviving the exhaustion and pain by sleeping at least 15 hours each 24 hour period – I’m cutting down to between 8-9 hours.
Whilst I am awake I need to do a 7 minute walk in the morning and a 7 minute walk in the evening (which will slowly be built up). I am allowed to do 20 minutes of activity followed by 5 minutes of rest (which literally means sitting still and doing nothing – but not falling asleep either). I have to spend more of my 20 minute slots doing relaxing ‘me’ things. I have had the order from the doctor to be selfish and devote time to caring for myself.
It is really really really hard!
I am surrounded by a house that needs unpacking, cleaning and decorating and I am only allowed to do small chunks of it whilst I have to do largish chunks of reading, crafts, music, etc. Yes, it may sound like bliss but when you have limited energy, trust me, you want to do ‘important’ things (like cleaning the kitchen!). Plus I have spent my whole life wanting to help others and do ‘useful’ things. I am having to completely change my character here!
Day 1 of the regime and by 9 o’clock I was so ready to crawl back into bed. I feel like crying now at 11.30am knowing I am not allowed the nap after lunch which I am craving. My pain levels are ridiculously high (advantage of sleep – if you sleep deep enough, you can’t feel it!). And I have another…9 hours before I can even start getting ready for bed!
So if you see me/speak to me/pray for me – please bear with me over the next few weeks. Apparently it *should* eventually start easing a little but for now, I am in pain, exhausted and not allowed to crawl into bed. If I look exhausted – it’s because I am. Even more exhausted than I used to be previously which is quite impressive! If I look bewildered – it’s because I am. This new lifestyle is counter-character for me and I can’t fully get my head around it. If I look lazy – it’s not because I am. It’s because I am having to retrain my body and mind to relax and rest. Trust me, there is no (bad) thing you could say about me that I haven’t already beaten myself with repeatedly.
So please guys, please help. I’d appreciate it if you could pray I have the willpower to stick this out and not give up. I’d appreciate hugs and encouragement. I’d appreciate it if you’d also support Joel as he supports me through this because he’s the one having to cope with it day in, day out and this is going to be just as hard for him. I’d appreciate you not saying how much you wish your doctor would tell you to do this and have all that restful relaxing time (unless you also would like to take on the pain, fatigue, brain fog and nausea?). I really would still appreciate visitors as long as you don’t mind the house looking a tip. And I’d appreciate it if you just stick with me on this.