Enforced rest

Do any of you recognise the twilight stage between being really unwell and being well, where you are feeling well enough to be bored by resting but know that if you don’t rest, you’ll become more unwell again? That’s where I am. Don’t get me wrong, I’m really thankful that I’m starting to feel better. However, I’m also feeling rather frustrated. My mother orders me to go back to bed if she sees me up and about. l am thirty-three years old.

I must admit, I’ve found it difficult to adjust to the dependence on help from my mother that being ill has made necessary. It has lead to me feeling stuck in a rut of regression to being a teenager from which I’m not sure how to escape.

Do any of you identify with this situation? How have your family relationships been affected by your illness?

Not so much working outside the envelope as in the recycling bin

I returned to work yesterday. I half-explained to my colleagues that I have a ‘chronic health condition’ that has flared up and so I need to reduce my hours, and it turns out they don’t need me after January anyway (whether this is to do with my general decrepitude or not I don’t know. Probably). So everyone’s a winner.

Just these last two days have taken a huge amount of willpower and positive self-talk (including the nutty-sounding ‘come on, legs’ as I go up the stairs at work. I’m past caring if anyone hears me). But I’ve done it. And I feel as though I’ve been beaten up.

Only two more days in work this week to go! Come on, brain! Come on, body!

Are you struggling with work? Or are you winning? Do you know what you should be doing to pace yourself but feel that you ‘have to do more’, or that you ‘have no choice’? Get in touch.

Spoonies wanted!

Being optimistic, I should have recovered from this crash by January if I’m sensible…so I’m planning to start recording for the podcast some time in the New Year. It would be great if any of you spoonies would be prepared to chat with me or record something and send it to me. Topics include everyday life and how you manage with day-to-day chores, work or study (if you do), relationships with family and friends, socialising, dating, following your own interests, how you manage to stay positive, what you’ve had to change in your life – all personal stuff, I appreciate, but I’d love to hear from you.

Now I must sleep.

Need another week off sick to recover from my week off sick

It’s Sunday, the traditional day of sinking anticipation of the return to work. To be quite honest, l could do with another week or two off, in bed, sleeping. I’ve been a little foolish, or at least I’ve tried to be like a normal person and clean the house a bit. This has made me realise that if l lived alone all the time (mum’s on holiday this week), I would either live in squalor but maintain an acceptable degree of stamina, live in an acceptably clean house but spend my whole life cleaning/recovering from cleaning, or I’d have to get a cleaner.

Perhaps I’ll bite the bullet and get a cleaner. l already feel an arse for having this option. I’m lucky. For many of those affected, chronic illness hits the pocket hard. So do you manage to prevent your place from descending into Withnail-like squalor? And how?

Emergency Stop

Three days after my gardening escapades, the post-exertional crash has hit. l realised when my legs couldn’t cope with the stairs and l started to have word-finding difficulties that I’d have to go home from work.

I’m writing about this to illustrate two points. Firstly, learning to manage chronic fatigue is hard and there will be setbacks. Secondly, as a doctor, I’m terrible at taking my own advice.

Feeling a bit overheated now, so off to recover.

The podcast will be more fun than this, don’t worry…

Boom And Bust

I didn’t go for a little walk today after all. Instead, I raked up the dead leaves in the garden and loaded them into binbags. My garden is massive. I haven’t finished the job yet but I had to stop after about two hours as my muscles couldn’t take much more. I have now taken to the sofa with my blanket and I’m settling down for a nap before Strictly and X Factor.

This is a lesson in how not to do things when you have ME/CFS. If you start to feel fatigued, if your muscles feel heavy, if you feel clammy or your throat starts to get sore, STOP AND REST. I’m just hoping my nap provides some damage limitation. I am an idiot.

And I could walk 500 yards, and I could (possibly) walk 500 more

I’m relatively well at the moment, compared with the states of decrepitude I’ve been in previously, thanks to ME/CFS. Nevertheless, my physical fitness and exercise tolerance is pretty low. Think aching muscles and profuse sweating after a few minutes, unless I take it easy. Having looked into local gym memberships (rip-off) and buying home exercise equipment off eBay (other second-hand tat sites are available), I’ve decided that the best and most cost-effective thing for me to do is go for a little walk every day. I did this before, when I was going through a bit of a rough patch last spring. My walk then was the five minute on-foot journey to the local shop and back. It was better than nothing.

This time, I think I can manage to go a bit further. Maybe even walk for twenty minutes! So I’ll be getting out of the surgery in my lunch breaks to get some fresh air and have a fairly brisk walk into one or other of the two Herefordshire/Powys market towns where I work. Accounts of these walks probably won’t make for fascinating blog posts but I’ll post a picture if I happen to pass an interesting sheep or tractor.

I read somewhere that when doing graded exercise, a rest to exercise ratio of 3:1 is recommended. So if you exercise for 5 minutes, you should rest for 15 minutes. I know, a reference would be useful, but I can’t remember where I found this tip. It seems sensible to me, anyway.

Let me know what physical activity you can manage and whether or not you find it helpful.

Welcome to Spooncast

Hello and welcome to Spooncast, a new blog for anyone who has, or is interested to find out more about what it’s like to have, a chronic energy-limiting condition.

I’m Sophie, I’m 33 and I’ve had ME, otherwise known as chronic fatigue syndrome (CFS), since I was 17. (For the sake of simplicity, in all future posts I’ll refer to it as ME/CFS). I’m also a GP, although this blog will be light on medical jargon and is aimed at non-medics and medics alike. In fact, it’s for anyone who wants to create, have fun and live life to the full despite significantly restricted energy levels making it very hard to do so!

Over the coming months, I’ll be collaborating with other people who have chronic, energy-limiting conditions to talk about how we can make the best of life when we have to constantly monitor and ration our activity. It’s a game, a tough one, and I’m still learning how to play it. Hopefully, we can have some fun sharing our experiences in as positive a way as possible.

So the name, Spooncast…well, some of you may already be familiar with the term ‘spoonie’. If not, it’s definitely worth reading Christine Miserandino’s brilliant ‘Spoon Theory’ post on her blog, But You Don’t Look Sick? I think it really hits the nail on the head.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

That’s the Spoon bit explained, anyway. The rest refers to the eventual podcast, which is coming in early 2014. I’ll be chatting with fellow spoonies about various aspects of life on low battery power. There may be cooking, dating tips and terrible songs. You have been warned.

Follow me on Twitter @sophabed or email me soph688@gmail.com

Oh, and in case it’s not already painfully obvious, this is the first time I’ve made a blog.  Please be kind to me.

Save your spoons for the stuff that matters.

Sophie

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