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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

Grockle Mon 04-Mar-13 20:45:38

Thanks everyone. Sorry for being so mopey. I wish I could be signed off for a term so I had a couple of months not worrying about when I was back in work. Just time to be ill, get better & get my head back together. Before this, I'd had 3 days off in 10 years - I never get ill hmm

Welcome, justtired. Sorry you have to join us but this is a lovely cosy place to talk to people who understand. I've just been refused DLA & am appealing. I won't get it but I need to try.

Sorry you were too unwell to work Fuzz, and that your line manager was so weird about it. Some people just don't get it.

People always say I look ill, smiling. Am I ok? Has something happened? Can they do anything? And that's on days when I am well enough to work. I look shit the whole time & being reminded that I look shit isn't very helpful. Sorry people are noticing that you are ill too. It kind of reassures me that I am actually ill though & that if other people can tell then I feel like less of a fake.

Abitrary, I'm glad your deputy was supportive. The return to work thing sounds like a good plan.

ArbitraryUsername Tue 05-Mar-13 10:09:26

You're doing really well under the circumstances, grockle. Amazingly.

Just tired: I have an inflammatory arthritis too (undifferentiated spondlyoarthritis, which is ankylosing spondylitis but where they haven't yet found anything on an MRI), but I get pain just about everywhere. Fun. It sounds like you've got a confluence of crap, health-wise (which seems to be common to many posters on this thread).

I'm just on my way in to town to get the train to work. Because my occ health appointment was postponed, I can get a later train. I'm actually going to spend more time travelling than at work today, but I thought I'd start slow.

buildingmycorestrength Tue 05-Mar-13 11:12:41

Arbitrary, my friend has AS and has found that a dairy free diet means he almost never gets flare ups. Just FYI, you may have tried that.

just tired, welcome sad

belleshell Tue 05-Mar-13 17:49:46

Justtired, i was refused DLA too, and appealed then failed...but i have reapplied again, still not heard anything back....alot of us want to work just not as much, good luck with your job hunting, i got my current post after having 4 long episodes of sickness, over a 3 year period, i just said at interview that i was more than happy to go into more detail about my illness if they wanted to know more, and thankfully it worked, and i was able to move closer to my family and futher away from my ex..... i just wish now i could drop a day, on the same wage..... i will have to look again at my outgoings, but DLA would be a god send even the minimum payment.

Grockle your not mopey, you never are.....

Fuzz how you feeling today

AU, how do u find travelling, i find it exhausting, i have to go on a course in London in May, but i will have to go the night before and not work the day after i get back because it will wipe me out.... i also want to attend a course on another date in London, but its only a half day session and is quite manageable the traines to London are pretty good, but i cant do it all in one day..

ArbitraryUsername Tue 05-Mar-13 22:49:59

I find the travelling exhausting. I avoid it where possible, which isn't great for the career (to put it mildly). I'd forgotten how bad it is while I was off. I got the train at 10.30 and was back home at 5ish (so not a long day) but it has really wiped me out and my back really hurts. I only had one (informal and not scary) meeting too.

I would love to get a job at a local university but it will never happen because my illness (and the commute, and having had maternity leave) all combine to make my research and publications record look crap. All universities care about is your bloody REF score (based on a requirement for 4 publications). I don't have 4 (and I don't actually need 4) but you can't exactly explain your extenuating circumstances on an application form. Given they'll short list by projected REF score, I have absolutely zero chance of an interview anywhere. Just about any kind of minority group in society is seriously underrepresented in academia; it's really not hard to see why. I'm impressed your interviewers were so good about everything.

fuzzpig Thu 07-Mar-13 08:35:14

FFS I hate phoning up sick. I hate the reaction I get (especially as I know the reaction I get is now much less sympathetic than other people get - the phone is in the staff room so you can overhear) - I was actually shaking this morning. I should've said I wouldn't be in until some time next week but I got cut short. sad

I have a doctors appt next week so I will be able to get a sick note then as I've now been off more than a week, but I am so scared of being off that it makes me consider going in before I'm ready sad

ArbitraryUsername Thu 07-Mar-13 08:53:06

That's terrible fuzzpig. You shouldn't have to publicly declare that you're sick. That's unfair. Don't go in before you're ready; that does no one any good.

I email in sick. grin

smilingthroughgrittedteeth Thu 07-Mar-13 12:29:20

Fuzz it's awful that you feel that way sad

I get all panicky when I have to phone in sick, one of my bosses is lovely but the other gets stressed and comes across as unsympathetic, I know he just panics about childcare but Im much more sensitive than I used to be and his harsh tone makes me feel awful.

I tend to struggle through, making myself worse until I have no choice but get signed off sick

fuzzpig Thu 07-Mar-13 15:10:41

It's so hard to see the line though isn't it, the line between just-about-able-to-work and too-sick-to-go-in.

Because really, all of us here are easily sick enough to actually have been signed off for months at a time. But we force ourselves in anyway sad

magso Thu 07-Mar-13 18:26:50

Thats the problem. There is no system to support those in that middle ground - too unwell to manage FT work but well enough (if we don't overdo it) to sometimes work.

Grockle Thu 07-Mar-13 21:00:49

I hate phoning in sick too. It doesn't matter how ill I am, it is always awful. I have a weird phone phobia too which doesn't help. And I spend the entire day worrying about calling in sick again the next day. It makes me feel sick. Don't go in before your body is ready, Fuzz.

And Magso is right... either you're at work or you're too ill to be there. No middle ground, despite there being lots of time when people like us are well enough to work a bit but not well enough to manage our usual hours/ workload. There must be a better system.

ArbitraryUsername Thu 07-Mar-13 21:32:25

I agree with everything said so far here. It's hard to explain that you want to do some work but you can't cope with everything.

I have a weird phone phobia too. I hate phoning people. I don't actually mind talking on the phone but it takes me ages to psyche myself up to phone someone. Even people I know well. I think it's to do with feeling that I don't want to intrude on people. It would make sense but it also extends to phoning call centres. Why would I care if I am inconveniencing npower?

fuzzpig Thu 07-Mar-13 23:10:28

I hate phones too - especially answerphones! I have to say that having to use phones at work has helped me a bit though. The problem now of course is that talking is utterly exhausting! And I've lost count of the times I've had to cut a conversation short purely (or wanted to, if the person I'm speaking to isn't DH or someone I really trust) because my arm was too painful to hold the phone to my ear hmm sad

For the first time I am dreading tomorrow (Fridays are when we have the group thing at the hospital) - not the meeting itself because it is fab, but the journey. Normally I quite enjoy it (it's not too crowded so I always get a seat on the train) but I am in a lot of pain at the moment. I really wish we still had DH's crutches - my right hip/thigh and both my knees are agony tonight.

I am pretty sure I am having a relapse, due to doing 4 weeks FT. Pain is up, exhaustion worse, POTS symptoms worse (I have resolved to demand a referral from the doctor next week BTW - the CFS service is great but it doesn't really take the extent of my symptoms into account), and my appetite and sleep are going a bit weird too, which doesn't usually happen.

It's scary how quickly things spiral isn't it. sad We have been talking about deconditioning and I know it makes sense, but there must be more to it. I am constantly moving at work, but seize up very quickly when sitting on the sofa for example. That wouldn't happen to a healthy person, not in such a brief timeframe! I am about to start a GET programme (got a free exercise bike from my friend!) and I feel really positive and excited about it, but I get a bit frustrated when talking about activity etc because I don't think they really appreciate how active my job is - I'm not sitting at a desk all day (which obviously would have a different set of stresses anyway).

Grockle Fri 08-Mar-13 02:21:03

Hope all is well tomorrow fuzz & that you don't find it too wearing. X

ArbitraryUsername Fri 08-Mar-13 08:34:56

I hope everything is OK today fuzzpig. You are doing very well to have struggled through 4 weeks of FT work in an active job.

I'm utterly exhausted and my pain levels are just ridiculous, and I've just been easing myself back into a sedentary job. By the evening I just feel sick and sore and totally exhausted. Then I crawl into bed early. Even sitting watching TV is too much.

I refuse to engage with answer phones. I don't have one on my mobile (to my mother's annoyance) and I don't use the one that seems to be compulsory with my landline. I don't actually know how to use it. I just hang up if I get an answer phone too. I really don't see the point in them.

DH and I did our first joint counselling session together. It was all about establishing a relationship history/timeline. It's amazing how much DH claims not to remember about everything.

Grockle Fri 08-Mar-13 16:47:08

Thinking of you, Fuzz.

I had a meeting at DS's school this afternoon & did some dog training this morning... not much walking but a lot of thinking & it's worn me out but in a good way - almost like 'normal' tiredness but a bit worse. I like the feeling of being nicely tired after I've worked hard, it's the ridiculous fatigue from doing something tiny that bothers me. That sort of tiredness makes me sick too, Arbitrary.

Hope you feel ok about the counselling.

ArbitraryUsername Fri 08-Mar-13 16:59:22

The counselling was fine. It was very preliminary. I think it'll be harder when we actually have to discuss real things. DH is not helping. He's currently going on and on about how he 'has' to apply for a grant an it will 'have' to include loads of jollying around the world for months on end as if he has no responsibilities. I just go quiet every time he mentions it. I think the biggest issue is that he is too selfish to accept that he can't have everything he wants.

I dragged myself into my pilates class at lunchtime and wish I hadn't bothered. A different physio was taking it (the usual on is away with a sports team) and it was considerably more hard core than it usually is. At one point, the 'level 1' exercise he was demonstrating was what she usually suggests as the 'level 3' progression of the move. I can only cope with the normal level 1. sad

fuzzpig Fri 08-Mar-13 21:31:21

Totally f*cked from the session today on top of being in a relapse anyway. I cried a lot, although I am pleased I managed to talk about things.

Have been worried all day about phoning up sick tomorrow (particularly as I know who is likely to be answering) but trying to remind myself that no matter what their reaction, it's just WORDS, it can't hurt me, or make me more ill, or make me lose my job. <repeat>

Grockle Fri 08-Mar-13 21:39:34

Yes, keep reminding yourself of that, Fuzz. Can you not call in sick for 3 or 4 days? Or get signed off so you can have a longer rest with no need to call into work every day? It's horrible having that hanging over you.

Sorry the pilates wasn't good, Arbitrary.

fuzzpig Sat 09-Mar-13 07:24:17

I will be doing that next week grockle since my manager will be back and I will tell her I am seeing the doctor and getting a note.

In other news I also phoned up the occupational therapy dept of social services again, and now that I have my dx they will phone next week to assess me for any aids they can provide (in particular I'm hoping for a higher seat for the kitchen).

Grockle Sat 09-Mar-13 09:30:33

Good. I hope it helps. And SS too - I keep debating contacting them but because am not on benefits and fear SS involvement, I haven't done it. I don't know what, if anything, they could do.

It's all silly because I have a SW for my little student as I am her foster carer so I don't know why I worry.

Hope everyone has a lovely weekend.

fuzzpig Sat 09-Mar-13 12:58:57

I think all the scaremongering about the mistakes "SS took my baby" etc doesn't help! I did find SS person I saw really nice. There isn't much they could actually do though, as I'm not disabled enough IYSWIM. So I'm only really expecting the kitchen chair thing. I'm not sure if that is means tested, I will let you know when I find out.

Anyway, phoning up wasn't so bad today, it was the same person but I had kept repeating my thought beforehand (and so did DH!) and it was fine, I also mentioned that I had my occupational health report which may have hinted "see I DO have a real illness" grin

At the group yesterday we were doing CBT and talking about NATs or 'negative automatic thoughts', and how to challenge them by looking for evidence against them (as opposed to evidence for them, which is what we automatically pick up on) and create alternative thoughts. It's our homework to practise/record it. I think the phoning up sick thing will be a good example - my NAT was that everyone will hate me for phoning up sick, I don't deserve my job, I will be pushed out etc... so I looked at the evidence and reminded myself that they are always stressed in the morning when anyone phones up sick, because they have to change the timetable at short notice. Also, the deputy managers have nothing to do with my employment really as it's now being handled my the manager and occ health who have validated my symptoms and absence, so whatever they say, they can't actually touch me really. So the alternative thoughts were 'it is just words and they cannot hurt me' as I said earlier, and also the thought that "I have the right to be off sick when I am unwell".

In other news - after over 2 years unemployment due to his injury, DH HAS BEEN OFFERED A JOB!!! It's casual weekend/evening sales stuff, and he will keep looking for something more regular/reliable, but YAY!!!

ArbitraryUsername Sat 09-Mar-13 13:26:40

Wonderful news about your DH's job, fuzzpig. He must be really pleased. Also very positive that the CBT is helping you.

Everything's gone dreadfully wrong this morning. sad DS1 has had a total melt down over nothing at all and is sulking in his room with all videogaming banned for a long time. I am not putting up with him being aggressive with me because he doesn't get his on way. It's mostly teenage hormones (he'll be 13 in a few months) but there is also a history/undercurrent of DH being difficult with him. DH is being an arse (including purposefully starting fights with me, claiming that it's perfectly reasonable to be mean to DS1 because he 'doesn't agree with my parenting style' hmm and muttering under his breath about how he won't be here much longer). He's has taken DS2 out. I'm beyond fed up. Because being sore and ill is just not enough to have to deal with...

belleshell Sat 09-Mar-13 14:49:51

Hi Al;

YAY to Fuzz DH, what a relief, and weekends and evenings mean he will be around to help you during in the day with kids if needed, how fantastic.

AU hope your day is getting better and not worse....

in the past 2 hours i seem to have gone down hill very quick, DP told me this morning i was looking good, not as tired, which i didnt feel. we have literally been out to do odd jobs for last 2 hours in car, and i know hurt everywhere i feel sick, and just want to go to bed............ wtf is wrong with me, i wouldnt mind but i have only got out of the car twice in last 2 hours....

thankfully weather is shit, my dd is in her room DP and his kids are down stairs, i feel i should just mix in with em all but even my hearing hurts IYSWIM....ggggggggrrrrrrrrrrrrrrr

ArbitraryUsername Sat 09-Mar-13 19:57:21

Sitting in the car for hours is rarely relaxing though. It just fools you into thinking it is a kind of restful activity.

DH is still being annoying. He's doing his wilfully misinterpreting and misunderstanding thing so he can pretend that everyone is against him. I'm just ignoring the fact he's in the house. Anything else would take too much energy.

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