Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

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

I don't know, beyond. Swimming leaves me in so much pain the next day, even in a hydrotherapy pool (although that is bliss while I am there). I can highly recommend my stupid diet for weightloss though. SInce there is nothing enjoyable to eat, weight just drops off! And I wsa told todya that I need to do it for another 6 weeks. I'm having a week off because I can't cope but will do it if it might help in the longterm. I can't live with thses illnesses for the ret of my life.

APologies for my typing - hands not working well.

An interview about ME

Beyond I found gentle stretching in the pool really helpful for increasing the range of my joints. However, I feel so self conscious in my swimming costume that I've given up.

I've had a craptastic day. I haven't slept properly since Tuesday night. On Wednesday morning, I tripped and heard a crack. I have weak ankle ligaments that require surgical repair, (which for various reasons, I am not willing to have yet) so I assumed it was a sprain. However, the pain has got worse and worse, so I popped along to the walk-in clinic this morning in a foul mood due to very little sleep thanks to my foot and ankle pain. The up shot is that there are no obvious breaks but the nurse said their machine is not good quality, so it will be reviewed by a senior radiographer and they'll get back to me 'soon'. Her parting words were; "fingers crossed it's not a fracture, hope you hear soon" which isn't very reassuring. That said, she wrote on the x-ray from that the tenderness is over the mid metatarsal joints which is where my rheumatoid is most active, so maybe I've just aggravated inflamed joints?

I had a nap, which was pretty restless, then started doing some university work. For some ridiculous reason, I didn't save as I went along and I lost 2 hours worth of work. I'm gutted and furious with myself.

I'm trying to eat healthily but tonight, I just though 'fuck it' and I'm going to have a take-away.

candy, that's awful. How're you now?

Hope everyone else is ok. Happy Hallowe'en

Candy how is your ankle now? Grockle how was your cruise? Hope you are both feeling better - and everyone else.

Half term has been rather mixed so far. Ds has been kept fairly busy, although he was very fraught and hyper early in the week - definitely in need of a holiday from school. We went to a lantern festival which was surprisingly popular, with lots of families wandering around a local beech wood with only paper lantern bags in the pitch black. I got rather tired and grumpy, but ds was in his element. Today he had a sn play session where they carved pumpkins, and got the children to help pull out the seeds ( very touchy feely for those with sensory needs like ds so he was very chilled when I collected him), whilst I went for some tests (cortisol) at the hospital miles away. I started out almost too tired to drive but after the tests felt almost human. I don't know whether it was the stuff (sythesin) that they inject you with or the sitting about waiting (in a very comfortable chair), knowing I had 4 hours before I had to pick up my very high energy needing son. I even managed to accompany him (dressed as a cross between dracula and a zombie - he added to the ensemble himself)trick or treating - well just to the neighbours. I'm not a fan of trick or treating but ds loves it and was not having any arguments from me.

How's everyone else holding up in the the holidays?

Hi all, been having trouble keeping up with the internet. Looks like some frustrating things have been happening :( Spoons to you all.

I've finally got my talk-about-the-fatigue appt with the GP tomorrow. Really scared I'll mess it up. Will be alone, so won't have DH to make sure I don't minimise. Any pointers? I'm planning to emphasize how my life has changed since 4 years ago, and that is not just related to DD's appearance. And how I get physically ill several days later if I do too much, even if I feel fine at the time, so I have forward-plan all the time.

Hi raggedy, I know what you mean about having trouble keeping up with the internet, I'm around mn A Lot, but can only really follow conversation properly if its a quick conversation, iyswim?

Don't have any answers re your doctors appointment, i need to see my gp about my waning mobility, but to get there I have to go on a good day! So def know where you are coming from!

Having had a few "good" days recently and tried to minimise what i did, only to have bad days again anyway, I think my plan to keep my weight down is going to have to be to do as much as physically possible any time i can. Not that i think that sounds like a particularly intelligent plan...

Hi, I can't keep up with things either. Or I post then forget (and don't log in for ages to see where I've put what).

I hope that you're all doing as well as possible, our good days aren't exactly what your average person would call good but there you go. Hope that ankle isn't broken candy.

I saw the endocrinologist again a few weeks ago. He didn't say much this time but my vitamin D levels were low, so I've been given some super strong capsules to take to sort it out. I have one more to take and I'm still tired, sore and grumpy. I was hoping that the vitamin D would fix all of that!

At the moment, I still don't have a firm diagnosis regarding the fatigue and pain but had ME 20 years ago so I've always tried to keep an eye on stress, not getting too tired etc. I also have Essential Tremor so it is making things interesting as I'm sore and shaking, get exhausted so I'm more sore then I tremor more! Like some kind of bizarre torture.

I did good! Or, rather, to give appropriate credit: my GP is really great! He asked a bunch of questions and helped me remember more details. And if he didn't understand what I said, he kept probing until I explained it in a way that he did. He talked to me for a good 40 minutes, which was very nice of him, as I probably made him stay late. I hope I was the last appointment of the day!

So, the upshot is that I definitely fit with a CFS/ME diagnosis. We have a local CFS nurse that he could send me to, but he'd like to keep probing before we step over into only management. He's sending me on to a doctor at the local hospital who is a lupus expert and 'likes weird fatigue stuff', so may be able to think sideways and explore my situation more. Also, my GP says the Dr has access to a lot more machines and tests than he does.

He gave me a big printout to read about CFS/ME, although I probably know most of it already, thanks to you guys :)

Ugh, beyond, I hate weight issues. I tend to gain weight when I'm stressed, and I'm really stressed now and then I get stressed about being so inactive and gaining weight, and it makes it all worse. One thing I've been trying is Tai Chi I find it is somehow less tiring than other exercise, but it seems just as useful. I'm trying to do 10 minutes a day for now, and have been managing pretty well. If I keep that up for a while, I may increase to 15 or 20 min.

Cruise was lovely, thank you, although I couldn't have managed without my wheelchair & a 2 hour lie-down/ nap every afternoon. Its a good thing that DS is willing to lie down & read while I snooze.

Hope the tests are useful, magso. Raggedy, your gp sounds great. I'm glad today went well.

I'm exhausted. I had 2 friends visit today - with strict instruction that I couldn't manage more than 2 hours. One was fab & left after 90 mins but the other was here for nearly 4 & just woudn't go. She does this all the time then gets narky when I say I am not well enough to see her. She's one of my best friends & is very sweet but she just doesn't get the fatigue.

I have a lovely friend like that Grockle, she likes to take me out but doesn't notice when I've completely run out of oomph. I really enjoy her company but feel like I'm letting her down. Another lovely friend totally gets it.
I sometimes feel a fraud compared to all of you as mostly I can be really active, until it all flares and then I crash. Which makes me very lucky.

Me again...

Very impressed with your Gp raggedy :)
my appointment to see mine is later in the week, not looking forward to it at all. Over a month still until my "emergency" rheum appt

OYBBK, youre not a fraud, i'm just particularly whingey My problems are nothing compared to some people, but I moan a lot

Those of you who have hypermobility on top of your "main" problem (not that mine is confirmed yet, but anyway...) have you found that since your mobility has been affected by the main problem, your joints dislocate more frequently? I guess its due to the muscles weakening through lack of use, and not supporting the joints so well?
I did a fleeting asda visit with my mum in the week, and while hobbling around my hip popped out twice, and then my knee again when i got home! I've always had problems with joints popping out (never occured to me it was a problem) but nowhere near this regular!

One other thing, am I the only miserable, evil person who gets really irritable when someone in their 70s says, "oh yes, I have arthritis in my knee"?

PS grockle, my trick at the mo is to invite friends over for takeaway and a film in the evening. Actually falling asleep is quite a good hint that its time to leave

That's a good idea, Beyond. I was sick when she left, because of being so tired. It doesn't help that she doesn't drive so always has to wait for her DH to pick her up & he 'forgets'. He always walks into my house without knocking, which really bugs me. Do people do that? He's done it when I've been home alone & in bed asleep (in the day) - I know should lock the door but still.

I am hypermobile but my joints don't seem any worse than they used to be. The pain is worse but I don't know if that is a fibro thing? They get very tired much more quickly too.

I'm off out with family for fireworks and dinner - I don't want to go. I am beginning to really worry about how disabled I seem to have become - I can mask it to a certain extent but it makes me so ill, trying to carry on. I am back at work on Monday but I know I am not well enough to be there. I'm really fearful about my future & work.

Hope everybody has a good weekend.

I get really grrrr with friends who say oh yes I think I have arthritis in my ...... All cheery like.

Grockle, your friend sounds tiring (pun intended :) ). Is there any way you can, after 2 hours, say something along the lines of "I'm getting quite ill, and it's been the two hours I told you I could handle for a visit. I'm going to go lie down now. You can wait out here for your husband to fetch you." Or maybe give her a warning 15 minutes ahead of time that you're starting to feel ill and expect you'll have to lie down shortly. I know it seems rude, but she's being rude by overstaying her welcome!

It is a bit weird for someone to just walk into your house although I suppose on some level of friendship I'd knock and if I got no response, walk in calling out as I did so. I've done that when I've needed to get in touch with my neighbours rather promptly. But to do so regularly and without knocking definitely not normal.

How was work today, grockle?

I'm still processing a bit from my GP appointment on Friday. I guess I suspected I had CFS/ME, but hearing it from a Dr and getting handed the printout really made it real. I guess on some level I was hoping for an "oh, you're anemic/vitamin D deficient/etc", even though I knew it was unlikely because my bloods have always been fine before. It was this sentence in the description of mild cases: "In order to remain in work you are likely to have stopped most leisure and social activities." that really hit home. I'm not sure why, as it's not like I didn't know that already. But maybe it made me realise that other people do actually have social and leisure activities; I'm just so used to attempting to think of myself as 'normal' (based on the GP 4 years ago), that I find it surprising to hear that things that are beyond me are normal for others. Also the bit about if you've had it for several years recovery is less likely was disturbing.

I'm wondering what to do about work? I'm really struggling just to keep up, but so far I am keeping up. I am worried things will overwhelm me at some point, though. So far, I mentioned my fatigue issues to three work-friends, one of whom was recently thereafter promoted to be line manager for part of my job. So it would be fairly easy to update him, although I also know he's quite at the breaking point too, and having to worry about me will just add to his stress. And then there's the other part of my job, where I've told no one. There is someone senior, who isn't my line manager, that I could go to for advice, and I'm wondering if I should mention anything to him. I don't really know how to bring it up, though. I'm not looking for any concessions at this point, but I sort of feel that it might be responsible to make people aware of what is going on, in case I do break down at some point. What have other people done?

Hello all, just popping in to give you all a :)
Lots of pain for me too at the moment, but nothing new there.

Thanks, Raggedy. My friend IS tiring! I think if I went to lie down, she'd just settle down & put the kettle on & make herself at home. Which is lovely but I just want her to leave!

Work was hard. I'm exhausted. I have a big meeting next week about my level of absence & my future there. I knew they'd question it. What kind of job do you do?

I have a funeral I should be at (aunt & my only local relative) on Thursday but I can't ask to go because this is my first week back.

I didn't know that if you've had something like this for a while that recovery is less likely.

Grockle, please don't miss your Aunt's funeral. It may be awkward, embarrassing or inconvenient but she's your aunt. Not one of your managers would miss a close relatives funeral. You will always regret and resent not attending.

Please pluck up the courage to go. You can always offer to make up the hours. Compassionate leave is not the same as sick leave. It won't make any difference to the outcome of your meeting. Incidentally do you have someone to take with you? I have been through all this and really appreciated the support.

Good luck.

Guess who no showed for a second time...

Beyond. that is just not fair.

OMG. Can you lodge an official complaint? That's appalling.

I am going to leave work promptly tomorrow & go to the wake. Or meet with family afterwards. I feel sad but work is very difficult at the moment. Given family politics, I don't think it's awful if I'm not there but it would have been good to show my support.

:( I'm sure your Aunt would understand Grockle. Sending you some very gentle non-mn hugs over for today.

I spoke to them on the phone finally, having been on hold for an hour, and while i was waiting also sent a rather shitty email. Though the person on the phone said they didnt know what had happened apart from "a crisis" so couldnt do any more than tell me that and apologise. Debating whether or not to (if i even can) complain direct to dwp. Am worried that kicking up a fuss will affect my claim, very shitty being treated like this but obv they know they can get away with it!

beyond, is a PIP medical similar to one for ESA? Having asked that, I suppose you don't know since they never came...

I phoned the ESA line last week to enquire how to apply for Support Group ESA. My contribution ESA finished in August. Wheel, apparently I have to have a medical and unbeknown to me have been on the waiting Lise for said medical since MAY!!! No communication, no way of finding out when this might be, no money.

It's lucky my DH can buy us food.

Any advise re the ESA medical, if it ever happens, would be welcome.

grockle, sorry about the funeral. Glad you'll at least get to see family.

I would guess they are similar, they are done by the same outsourced company. Will let you know what they do if they ever turn up!

Saw my GP today, who confirmed that in her lowly GP opinion, my prolapse is still there, it has not miraculously cured itself. She is waiting for the consultants letter to see what we do next. I told her I would be applying for my blue badge direct with the council after all this shit with capita and she said to give them her name and she will make sure they give it to me. And she also read out everything she put in her letter to capita about my pip application. I love her.