Getting through the winter with cfs/me

[HeyMacWey]

Since the clocks changed I've been really struggling with the basics.

I've been signed off work since July and is coming up to a year since I first got ill so this is the first proper winter that I'll have lived through with cfs.

Does anyone notice a change in capacity each year. The summer was manageable for me - but now I feel that I don't have any quality of life. Everything is a bloody struggle.

My kids are sick of me being ill and whilst dh is understanding is bloody hard work for him to pick up the slack all the time with his demanding job.

I'm on nortryptaline for the pain but wondered if I should increase the dose for winter.

I've also got a bit of a cough /cold so this could also be having an impact. I haven't been ill since I first got cfs. I'm also feeling really down about the thought of the next 4 months feeling like this.

Has anyone got through the winter without needing antidepressants? I'm reluctant to take them as I generally have a positive outlook. Also the nortryptaline and cfs itself make me feel so out of it that I'm reluctant to add anything else into the mix.

Would be interested to hear others' experiences.

I'm in a very similar position to you. I was diagnosed with CFS/ME back in the summer, after struggling, with what I thought were recurrent infections, for over a year.

Over the summer I would have bad patches, but generally I could do a lot more than I can now. I have spent the last 6 weeks pretty much on the sofa. I feel awful most days & it is really starting to get me down now, as I feel like I will never get better.

My doctor did advise that I take a vitamin D supplement (in addition to my usual vitamins), over the winter period, to help stave off the infections that are prevalent this time of year.

I'm sorry, I'm not really helping you, but just wanted you to know that you're not alone!

Thanks for your post - sorry you're in the same situation.

I've done some googling and it seems v common to have a relapse over the winter.

The sun is shining this morning so feeling a bit brighter today.

Yes - it feels like there's no end in sight. I can't imagine getting to a point where I'm going to be able to get back to work if I carry on like this.

I'm being seen by my local cfs clinic and seeing an oh and doing graded activity therapy but think winter is going to say me back for a good few months. One of the things that my work oh said to me was that the only you could be certain of with cfs was the unpredictability of the illness. V true and I do try to remember this when I'm having a low moment.

Oh well it is reassuring to know that it's probably only a temporary set back, rather than the condition getting much worse. I suppose the fluctuating nature of the illness is one of the things that makes it so difficult to deal with. It's hard not to overdue things on the good days. I am working very hard on my pacing which my doctor has been helping with.

I have, more or less, had to stop working and employed someone to replace me (DH and I run our own company), which is very frustrating, as I love what we do. I do realise, however, that we're really lucky that we don't rely on my wage.

You are right though, the sunny days do make things feel a bit better!

Sorry to hear you had to give up work. The good thing about having your own business is that hopefully one day you'll be able to return. My work are being brilliant but there is only so long I feel that I can go on being signed off for and I'll have to make a decision about leaving which is gutting.
Glad to hear your pacing is helping but yes it's hard to not overdo it. I found that allocating a point value to activities had helped me with my pacing. I have 10 points a day and is amazing how quickly you use them up. I was using a high/med/low system but found I was doing too many medium things which meant overdoing it over the course of a few days.

That's a good idea, I hadn't thought about using a points system. I'll give it a go.

It definitely helps me. The aim is that over time I'll have a greater points allowance.

Example points are as follows:

Shower & hair wash 1.5 points
TV /Internet 1pt
Light lunch /dinner 2pts
15 mins pilates 2pts
school run 3pts
20mins driving 3pts
shopping 3pts
big dinner - ie Sunday roast 3pts
friend round for an hour 3pts
20min phone call 2pts
Hospital/gp appt 3pts

Hope that helps?

I like the points idea too Hey. Did you just work it out for yourself? I'm pretty good at balancing my days, mainly because I can't do a great deal though. It would be a good way of seeing how I'm progressing I think, and perhaps of stopping myself spending too much time surfing the net.

I'm heading into my 3rd winter after a virus kicked off my ME in December 2012, and have been off work since June last year after going back too soon and really doing myself in.

I think, from what you describe doing, that I'm at a stage where winter affects me less - I'm mostly housebound so apart from the cold, and trying not to get soaked on my v short daily GET plod it doesn't make much difference to me. I'm not trying to get out and about and do things in the cold and dark. I remember from the dim distant past before i was ill that life generally seemed harder in winter. I don't miss cycling to work in the dark and pouring rain, I guess there has to view a silver lining somewhere!

I found a bad cold in January last year set me back a bit, although there's not that much you can do to avoid those apart from boosting your immune system as much as possible I guess. The main problem I've had in winter is chilblains on my toes, that I've never had before despite always having pretty cold extremities. I've invested in lots of heat holders socks as they're the only things that really work for me.

In already on antidepressants (and never ever want to give then back, 2 months after starting) so can't help you there I'm afraid.

Thanks Hey, that is helpful.

Having a shower is one of the things that really brings home how much this illness has affected my life. I only wash my hair every other day & I always have a little smile to myself on the days I don't need to wash my hair, as it means I have a bit more energy after my shower. Holding my aching arms up to wash my hair is a killer!

I have recently realised that I was spending hours on my ipad, mainly searching & reading about all things related to CFS ME, and that it was as exhausting as working, so I now seriously limit my time on the ipad. I think the point system is a good way to keep activites in check & also to try and mix up mental & physical activities

Hi Sargeant, sorry to hear you are struggling too. I think it would be a good idea for me to take a short walk every day, even if I have to force myself and it's just around the garden, as I think being cooped up inside really affects my moods.

It's interesting that you find the antidepressants helpful. My GP suggested them initially,as he thought I was depressed and not ill with ME, and I was quite annoyed by the suggestion - not because I think there's anything wrong with antidepressants, but because I knew that I was ill with something that wasn't depression. However, the longer I am ill, the more I realise that the illness is having an affect on my moods (I'm usually a very positive person, but finding it hard to remain positive at the moment), and have been wondering whether I should consider them.

I am feeling a bit better today though, so I will attempt a walk and maybe even a short car trip to drop DS into town. Living the high life!

Hi Citrasun

I think that can be a big problem, people feel the need to justify so hard that their illness is physical that they fiercely reject any mental help even though getting an illness like this is a huge life change and could cause anyone to get depressed.

I had an explosion of crippling severe ocd back in August, triggered by the stress of illness and claiming benefits and assessments etc and ended up with an urgent mental health referral. I'm still waiting for cbt for the ocd, but the difference the pills have made is incredible - I have no more physical energy than I had before, I'm still in bed now finding the energy to get up for the day, but they've given me a little bit of my spark back, given me my appetite back, made the world seem a bit less overwhelming and easier to cope with. I perhaps have a bit more mental energy because the underlying constant anxiety has been lowered, but that's the only effect on my actual ME. I hadn't realised how depressed I had become until I suddenly want sitting crying in the evening.

The walking is great. Vvv slow progress in my case, but it has been progress and even just poking my head out of the door or getting 1 lamppost down the road if I really can't do any more one day helps me feel I'm achieving something, and gets me some fresh air.

I also spend too long online. Time to get some breakfast and face the day

That sounds horrendous Sargeant. I'm glad you're feeling more positive now. I will bear it in mind, if I start feeling low again.

I have been out for short walks, yesterday and today, and feel so much better for having done so.

Thanks. Sorry, i forgot to reply to you before. Yes, i could barely believe my mind could turn on me that much! I've just found out that my pip assessment is next week. Going back to my parents' a couple of days before to try and lessen the stress as I know that being on my own before that could be enough to trigger the OCD demons even with the pills.

It makes a massive difference getting out, doesn't it! My walk from my flat now takes me just far enough to where 9/10 there are squirrels running about. 30 seconds watching them is enough to make me smile for quite a while (I know grey squirrels are vermin but they're still lovely to watch!)

Hope you're having a good week