After struggling through three days at work this week, l couldn’t manage to haul my ass in again this morning, so I called in sick. I hate calling in sick. I always sound like I’m faking it and end up apologising profusely.
‘Er, hi, J___. I, er, I’m not going to make it in today… l’m really not well. It feels like the flu. I’m really sorry to let you down. l just, uh, don’t think I’m safe to make clinical decisions while I’m feeling like this.’
I’ve already had ‘the flu’ this winter so they must be wondering how, as a doctor, l believe that I’ve caught it again. But I’m not lying; l do feel like I’ve got the flu. I’ve just been too scared to tell colleagues that I’ve got ME/CFS.
Well, it can’t go on. I’m going to come out. We’ll see what happens.
I make the same sort of new year’s resolutions every year – get more organised, try to get fit, start doing the things I enjoy again. It’s the last one that I care about most, although it needs the others to happen in order to make it possible. Being a (now only wannabe) creative type, I feel that something is missing when I’m not producing something of my own making just for fun. Unfortunately, when you have a chronic illness and all your energy goes on just doing the necessary things, hobbies come pretty far down the list of priorities. But we need more than just fulfilling the basics of everyday survival to make our lives whole. When I was a kid, I would take a sketchpad everywhere I went. I loved drawing and painting just for the sake of it. I hardly do it any more and when I do, the pain I get makes it quite difficult. I also used to love playing music but for a long time have been unable to hold my violin due to shoulder and back pain and muscle fatigue.
I hope that I will get well enough to enjoy my hobbies again. I aim to make a start this year on doing at least a few minutes a day or every few days of something I really enjoy. Get in touch and let me know if there’s anything you’ve been forced to give up through being ill. It would also be great to hear from those of you who have managed to get back into your hobbies again, or if there is something new that you’ve taken up since becoming unwell.
Two days after helping Mum with a difficult Christmas tree installation (it fell over three times while we were trying to wedge it into the bucket) and a day after the effort of chopping up a few vegetables, I’m feeling rather weak and achey. Time for another emergency stop before return to work next Monday.
I hope your Christmases were as restful as possible and that the New Year brings better health. I’m hoping to get started on the podcast in early 2014 with Pete, a fantastic artist and fellow spoonie I’ve made friends with over Twitter (see, it has its uses). You can find him @petehindle
Will keep you posted. In the meantime, if anyone feels up to chatting for the podcast, get in touch here, or @sophabed or email@example.com
Seasonal spoons to you all x
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?
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.
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.
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?
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…
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.
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.