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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.


Spoon Theory here

belleshell Mon 25-Feb-13 21:31:44

hope everyone s ok??

ArbitraryUsername Mon 25-Feb-13 21:45:10

That's crap about the DLA. The whole culture around benefits at the moment exposes national insurance as little more than a scam really.

I have to go and see the therapist tomorrow. Apparently he needs to see me alone first before seeing DH and I together (so as to hear both sides independently). I'm a bit nervous about it. I'm sure it'll be fine, but I'm not eager to go.

I dragged myself to my yoga class tonight and discovered that it was going to be mostly backbends. Gah. It is actually important for my spine (doing yoga for the past 2 years has done wonders for my mobility) but backbends are so hard. That is, of course, why i should practise them. It's particularly disheartening when I look round at women 30 years older than me who are considerably more flexible than me. The teacher's very good though, and specialises in back issues so she is very careful to ensure none of us do anything silly.

Grockle Mon 25-Feb-13 22:25:23

Best of luck tomorrow, Arb. I hope it's helpful.

icepole Tue 26-Feb-13 07:14:36

I wouldn't work either. Work just triggers me feeling crap.

I had no classes yesterday but still felt bad by lunch time. I have no idea how I will cope with actual classes and I feel quite low today. Low because I think I am going to go backwards an because no one really believes me.

Grockle that's horrible, the benifit system is a disgrace just now.

fuzzpig Tue 26-Feb-13 08:20:37

Oh no that's really crap about the DLA sad I haven't got round to applying yet and not sure if it's worth the effort. You can appeal though - I've heard that while they tend to refuse the vast majority on application, appeals are much more successful? And how was work yesterday?

Sorry your first day was so hard icepole, it's an awful shock to the system isn't it. I think that's one reason I decided not to be off long term (a decision I now regret!) - I was scared about how hard it would be going back after a really long time - not just physically but emotionally. I hope your transition is made as easy as possible.

Best of luck with the therapist Arb, I hope it's helpful. And well done for the yoga!

I am about to start work now but just wanted to share some news. Or lack of it. I think I said that I had met with my manager a few weeks ago and she was going to refer me to occ health and ask about reducing my hours. So I've been struggling on with FT in the knowledge that soon I'd get a new timetable. So yesterday I asked if my manager had heard anything yet. She said she hadn't referred me yet! sad

I get that she has lots to do but this is my LIFE here, I'm not just asking for less hours for the hell of it, my health is on the line.

It is done now but I am really hurt, and annoyed with myself that I didn't complain. But I've been thinking about why - at the group when I was talking about the abuse we were discussing the way my parents' lack of reaction made me feel - like I'm not worth saving or worrying about. I realised how deeply this has affected me throughout life, because I can't stand up for myself.

I hate being so vulnerable.

ArbitraryUsername Tue 26-Feb-13 08:22:59

I'm really sorry that no one believes you icepole. That makes everything so much harder.

I'm lucky that my colleagues are generally pretty (to extremely) enlightened about disability and other issues of social justice/equality. The actual university is less so, but the people responsible for managing me are supportive and understanding. In contrast, the university has you fill in forms to get a reduction on your REF submission (for things like maternity leave and being part time as well as disability and other issues) that demand that you explain why you haven't been able to fulfil your 'contractual requirements'. Cheers guys. All the women who had maternity leave or those who've been ill at any point since 2008 are such cretins, aren't they? hmm

I'm going to go and get the GP to sign me as probably fit for for work from tomorrow. I think I'm about as well as I'm going to be so I should just get on with it. I should be able to work from home for the rest of this week and the whole occupational health referral process will add some time before anyone expects me to do very much. It's getting close to the end of term now, so there isn't too much teaching left to do this year (the nice thing about universities is that teaching generally happens in no more than 20-22 weeks of the year!) Plenty of admin and marking to fill the rest of the time though.

ArbitraryUsername Tue 26-Feb-13 08:30:32

That's awful fuzzpig. Really dreadful. Can you self refer to occ health? I can, but it's much quicker and more effective if my manager does (and even better if the GP has said I need it). Hence trekking to the GP today.

I hate visiting the GP. When I didn't have to go all the time, I didn't mind it but I hate it now. I almost feel embarrassed for having to keep going back, which is stupid.

magso Tue 26-Feb-13 08:57:16

Hi, so sorry about the DLA Grockle. It might be worth appealing. There are so many of us not well enough to work FT but not considered ill enough (?!) to get support.
As you know I was not able to return to my former hours after becoming ill 4 years ago, and resigned from all but one day. Now I am usually able to manage that one day a week and would consider an extra day (if available) if childcare for ds (sn) was less costly and difficult. I enjoy working most of the time although it does wear me out (and I still dread the heaviness it causes). It keeps me sane. I do occasionally fill in an extra session but then always struggle and go backwards. So I guess I have made that one change. And I am a lot more well now (although much less well financially!). I wish you could all do the same. Looking after ds is exhausting - and always will be. I do not know how I will cope when ds gets to 16 and leaves ft school - only 3 years left! I have to get better! Just getting him dressed (he can technically do it all himself but is so stroppy) and out to school is exhausting.
I have had yet another course of ABs for yet another sinus infection. Oddly I feel pretty good (dispite half termlast week)- this happened each time I've taken this particular AB but it doesn't last. I even went to a pilates class (very gentle).
Fuzz I hope OH can come up with a workable plan for you.

Grockle Tue 26-Feb-13 20:12:44

I will appeal for DLA because otherwise I'll feel like I've not tried my best. I didn't expect to get it but was hoping I might get something. If I got something, maybe I could have a cleaner. And drop a day's work. I fear that if I carry on as I am, I will end up being completely unable to work at all. If I could cut back a little & have time to take care of myself, I think I could find a balance. I want to work - for my sanity as much as for money. I like my job, a lot. I just wish it didn't make me so ill.

I know that feeling, Icepole. I know I start each half term feeling almost ok and go rapidly downhill. I hate that I look ok (well, I look shit as everyone likes to point out but there isn't anything obviously physically wrong with me).

I was off last summer, before the summer holidays. I went back for the last 3 days of term because I was fairly sure that if I didn't go back then, I;d not make it back at all.

I can't believe your manager hasn't referred you, Fuzz shock Can you self refer? Or get your GP involved?

I think I am similar to you - in that I wasn't protected when I was a child. Nobody protected me when I desperately needed it & I always feel like nobody thinks I am worth anything. I feel like a big waste of space. I know DS loves me but that's it. No-one will ever look out for me. I think it really impacts my life...

Arb - I continue to work because I feel like I'm as well as i'm going to be. I'd love to feel properly well but I don't think I ever will now.

Belle, I hate going to the GP now. I've been there so many times, it's ridiulous.

ArbitraryUsername Tue 26-Feb-13 20:21:28

You should definitely appeal, grockle. Maybe they'll see sense. (Optimistic).

The therapy thingy was OK. The psychologist was nice and I guess it's nice to be listened to. He did say that I've been through a lot, which is true. DH and I will be having a joint session later this week.

Work tomorrow... I'm sure it'll be fine. It should mostly be a conversation with my HoD to see what parts of my workload I have to pick back up. I assume I won't have to take my dissertation students back, as that would be more disruptive to them than anything else. And my personal tutees shouldn't need much support. So hopefully it'll be a fairly light load to ease myself in with. My fit note says I'm fit for work with amended duties and should have an occ health referral (our occ health is in house, not ATOS). So we'll see what happens.

I'm going to go to bed early.

belleshell Tue 26-Feb-13 21:00:00

Funny isnt it how things in our childhood mould u, when my mam and dad split my mam was a mess so i stayed brave for her, and she stayed brave for my brother, so i guess i have always had that ability to put my barriers up ASAP should i feel im under defence.... My ex never fought for me, through out marriage and when i was ill and needed some one on my side he stuck his head in the sand... tough cookies us lot.

im heading for my full 5 days back at work soon...working till 1.30 is so much easier, but 5 days will kill me... im like you Grockle, i dont want to stop working just drop 6 hours a week, which finacially i cant afford t do...DLA would just supplement that.........mean finishing at a time i can cope with and the day off i week i need to catch up on me.............

fuzzpig Tue 26-Feb-13 21:03:01

Manager did do the referral yesterday, after I had asked her and then we talked for a while I may have got a bit tearful - so hopefully won't take long now <weary sigh>

buildingmycorestrength Tue 26-Feb-13 21:05:44

Have had an interesting conversation with a friend of mine who is now slowly recovering from six years or so of CFS. He had to give up work completely for a number of years.

He writes a blog about it at

feel good

He also links to a couple of other blogs that I have founds really supportive.

Basically, two transformative things for (eats totally clean now) and uses a pedometer and quantifies his activity. He is now nearly ready for a part time job.

I've just been in touch with the local branch of the ME society, and they seem like a supportive organisation.

icepole Tue 26-Feb-13 21:23:02

Awful fuzz! My school were the same, refused to refer me to OH, had to do it myself in the end.

Grockle it seems so short sighted, if you have to keep going you might not be able to work at all, that will be more costly. Why not support you so you can work as much as you are able.

I was feeling really well before I started back. Now the nausea and pain is back. Gutted.

Grockle Tue 26-Feb-13 21:41:51

I'm glad today was ok Arb. Hope the joint session is also. Hope work goes ok tomorrow too.

Interesting, buiding. I often wonder about diet but my rheumatologist was adamant that it is not related to diet at all. I will read the blog.

Sorry you are feeling crappy, icepole. Am glad Fuzz has now been referred. And Belle - don't do too much x

buildingmycorestrength Wed 27-Feb-13 07:55:18

I'm sure diet is not a major reason for most people.

But I can see how the pedometer helps. You can easily walk a half mile around the supermarket, for instance, and your conscious mind doesn't always want to admit that is a long way for a CFS sufferer. But the numbers don't lie.

ArbitraryUsername Wed 27-Feb-13 08:15:57

I don't think my condition has to with my diet either. It really makes no difference what I eat. To be honest, after the last couple of moths, I'm just glad that I can actually eat again.

I'm not sure what'll come of the joint session (possibly sessions). Mostly because I don't think DH really cares or wants it to work, and it can't possibly unless he does. He's already applied for a job far away, and he will apply for more, whic hardly shows commitment to any kind of relationship reconciliation attempt. But I will try and I'll know that I did my best.

I think my childhood has also conditioned me to accept so little (and put everyone else first) and not to expect anyone to fight for me. My parents divorced acrimoniously in my teens and used me as a tool in their war against each other. Neither of them seemed to actually want me, except to get at each other. And now I know DH wouldn't fight for me either. I'm not sure he ever would have. A couple of nights ago he was talking about my illness and other things and his position seems to be that he doesn't see 'what's in it for him'. It seems I'm no longer convenient for him. sad

magso Wed 27-Feb-13 08:59:04

Oh Arbitrary I am so sorry!((Hug))
Its awful to not feel valued by your nearest and dearest. I hope the session helps set you on a happier path. Uncertainty is horrid. Illness affects everyone around us. If your Dh gets a far away posting could you go with him and work less? My Dh took on a post that involves frequent travel overseas and made up in part for my reduced income. At first it was hard because I was really too ill to cope alone, but over time (and getting some respite for ds) we have adapted. It isn't the same as when we were both active and healthy - (our joint interest was active) but we jog along more happily now than when I was first ill. Its taken a lot of adapting. Its hard for him because I am so limited, and my dread of overdoing it can come across as not interested in him or joined activities.
I do not think diet is the cause of my illness but I do think a good diet can help me manage. I am certain that some suppliments ( Vit B12, D3 and magnesium)have helped too most probably because I was low on them. It all depends on what is not working optimally, and that is possibly different for everyone I suppose.
A pedometer is a good idea building. I was thinking of one to try and slowly walk myself to better strength, but using it for pacing is an ace idea!

buildingmycorestrength Wed 27-Feb-13 09:43:05

I've been thinking of your situations a lot, Grockle and Arbitrary.

Now I know why the marriage vows are 'in sickness and in health'...because managing the long term sickness bit in a relationship with children is so much more awful than you could ever have imagined as a healthy young thing.

But it might be easier to manage everything without the false hope that your other half is really going to deliver this time?

I don't know. No answers.

And obviously you have tried your best, Arbitrary. No need to bend over backwards any more if it doesn't work and especially not if this is another hoop your DH has set up to assuage his conscience and make him feel like he can say HE really tried.

ArbitraryUsername Wed 27-Feb-13 10:46:15

Unfortunately, I can't go with DH if he gets a job elsewhere. Not without giving up my job entirely. I really can't commute any further, even on reduced hours. It would be too much. If he goes, then I'm really on my own with the kids and have to find some way of being able to keep working and keep them settled and safe.

It may be easier to manage things without false hope. Somehow, it's easier when you know there is no support than where you're not sure or the support that should be there is unreliable. I guess the counselling will help me to figure it out.

I don't think anyone realises quite how important the seemingly trite bits of marriage vows are. We all take our health for granted until it becomes a problem, and then it makes everything difficult. It would be easier if I could work less, but that comes at a cost that I'm not sure I can afford with everything so uncertain).

So far I've done very little in my being back at work thing other than check emails. I hate email. The good about being off sick was the freedom from the tyranny of email. I always open mail up with dread because I know it'll just mean more stuff I need to do, which is never good when I feel like I'm just about managing to cope with the absolutely immediate demands placed on me. I did discover that my line manager has been promoted while I was off, so I'll be getting someone else. :/ I hope it's someone understanding.

fuzzpig Thu 28-Feb-13 16:19:00

Phoned in sick today. I decided last night as I am in too much pain now. Feel quite brave IYSWIM.

ArbitraryUsername Thu 28-Feb-13 17:00:51

Well done for admitting it was too much for you. That's often the hardest bit.

I've been trying to get back to doing something resembling research today and yesterday. I find reading and thinking so exhausting, and sitting in a computer chair all day is not great. I went to yoga today and yesterday lunchtime though. It's a different teacher, who has the same problem as me so she understands what the problems are. I've got a pilates class with a physio tomorrow lunchtime. I wish I didn't have to do so much exercise (and I don't do half of what I'm supposed to). It makes me tired, but it does help with the pain a bit. I've got an appointment with occupational health in a couple of weeks, so we'll see what comes of that.

Grockle Thu 28-Feb-13 17:31:22

Well done, Fuzz. I hope you can have a rest at home.

Arb, I find thinking exhausting too. And speaking because I have to formulate sentences from my thoughts and then say them out loud. It's really hard sad I'm glad the exercise helps with the pain. I'm thinking about trying the new Bikram Yoga place at Easter. I thought the heat might help.

A pedometer is a really good idea - I am going to order one.

ArbitraryUsername Thu 28-Feb-13 19:43:36

Bikram yoga would probably be a good idea. It is much easier to bend when it's warm. Yoga in a cold room is hard work. The lunchtime classes I go to are in DH's university sports centre. On Wednesdays they're in a really cold sports hall but on Thursdays they're supposed to be in a small room where we can turn the heating up high (when they don't move it to the squash courts hmm). It's much better in the warm room.

Take a towel with you. You will sweat loads. They really, really heat up the room for bikram yoga.

buildingmycorestrength Thu 28-Feb-13 21:57:22

I'm really surprised by all this talk of yoga!

I can hardly walk some days, and if I do anything even slightly strenuous it sets me back a lot. Hung some curtains at the weekend and had to spend 5hrs in bed on Monday.

I cannot imagine taking any kind of yoga class right now. Yoga i s hard.

I walk about 200 yds to pick the kids up from school, and am very very aware if I have to make an extra trip some days. Sitting up at my desk working (from home) is tiring but I can manage 2 to 3 hours on a good day.

I gave a half hour presentation at a college today, but rested morning and afternoon before doing childcare after school.

I am shattered now and dreading the weekend. We are going away with a kids group and although I will avoid the active parts I don't know how I'll manage the rest.

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