Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

The worst thing is that the therapist is so bloody neutral and professional. So H says horrible things and he just nods and I'm supposed to acknowledge how H feels. It honestly feels like no one is listening to me.

H is going on holiday to a conference abroad next week but the PILs are coming to visit. Indeed, the only reason MIL is actually coming to stay for more that a weekend is that H won't be here (because he's so selfish that she cannot put up with him, I kid you not. The PILs are lovely and understanding and helpful (and keep apologising to me that H is so horrible). It's a shame they live 6-7 hours away (which involves the M25, so is usually much longer).

On coldness, I have problems with my hands and feet. I struggle with being outside. I also have weird issues with my toes getting really hot and itchy for no reason (when I haven't been outside or cold at all).

Hello

Saw the thread title and it resonated wiht me this evening. I posted in one of the early threads but life and not MNing meant I droped off. Buuuuut, I have a hideous streaming cold and sore throat and my lupus symptoms have flared up (I have mixed connective tissue disorder) with massive swollen glands, itchy pimples everywhere and aching joints and fatigue. I have been doing so well since getting things under control with meds over a year ago. Feeling like I've gone back to square one today

and I have fibro and coeliac disease as well just to round off the things come in threes, especially auto immune conditions!

I've heard that about AI conditions Daisy and am hoping that I'm one of the lucky ones who just has one!

It's awful to realise how many people there are feeling so awful. No-one else ever seems to talk about it in RL which is why I tend to keep it to myself.

As for the coldness - especially feet - does anyone have any effective ways of thawing out?

hmm...where is the cheerful soul that I once was? And who is this grumpy crabby witch left in her place?

I have a wheat bag (well millet as the wheat makes my skin flare up) that I micrwave and sit with my feet on when they get cold. The secret for me is to not let them get cold, otherwise there is no arming them up. I also wear fingerless gloves round the house and a hat most days. With my post childbirth pelvic floor issues (which may also be in part due to connective tissue issues), all I need is a dozen cats and a duvet round my shoulders and I'll be a mad old smelly lady

I also had a pair of fuggs that I wore as slippers until they fell apart, which kept me toasty and warm.

This winter has been the worst by far for me as it has been sooo cold for sooo long. Usually there are milder spells, but this year has just been cold, cold, cold!

I think I may have raynauds tbh.
My optician certainly thinks so and that it's related to my migraines and - his words - twisty optic blood vessels.
I need to speak to the gp about it really, but justbp haven't had the time as it's been a tough few weeks here...both dc ill with a hideous cough/cold thing, ds2 taken to hospital with croup, he has now been swabbed for whooping cough :(
They are both supposed to be back at school on Monday but.....
I feel quite low ATM.
Ds2 starts school on sept and I would like to think I could start a new chapter in my life but I keep thinking "what's the point?" I will only get even more ill and exhausted.
I really hate feeling like this. I need a good kick up the bottom.
I have been wearing thermals this winter quite a lot, but still haven't managed to find any gloves that keep my hands warm :( or hat for that matter!
I don't feel like a very good mum ATM at all.
Took the kids to a museum and art gallery today but then spent all afternoon on the sofa/playing wii with them as I was so tired out.
I can't decide whether its post flu fatigue or something more ominous (my initial infection causing my Cfs was flu)
I had an ECG at the gp...my pulse rate was 140 which is apparently not good. I could barely make it up the stairs at the time so that at least explains why!
One thing that has bothering me lately (and sounds mad)...has anyone else been suffering from really really itchy shins/legs?
I have actually drawn blood twice in the last week :( it's driving me nuts!

Daisy...yes. :( I know what you mean.
I am not me anymore.

I have down mittens they are the best thing ever, and you can drop hand warmer sachets into them too. I am often to be seen in several layers of gloves with fleece wristwarmers as an indoor fashion. If you like hand warmer sachets, the cheapest place is Amazon as you can get a giant box for under £20. I also have a Hotrox thing which is good for short warming times.

I can totally emphasise with wanting to start a new chapter, it's so bloody frustrating - I hadn't had a proper job before having DCs (I had DD at 20) but I was working for a degree and now have had to give it up (and OU won't let me go back in the future due to their dropout rules etc). I went and got a job I loved - in a library - in 2011 because DH had to stop work when he got a prolapsed disc. I felt so lucky and even luckier when I got promoted from PT temporary apprentice to FT permanent staff! In hindsight I had CFS and certainly POTS before I even started the job but it was when I started FT that I got really ill. Flu was my trigger too, on top of a chest infection. Anyway, I know exactly what you mean about wanting to get on with life, I feel totally lost and scared that now I will never get a career and my life is over when I am 26.

On a more positive note - re: the coldness. Two words.

Electric.

Blanket.

'Tis all thanks to grockle that I decided to bite the bullet (a £60 bullet) and get one and OMG it is brilliant. Obviously it's only for night time but it's fab, I put it on high (36deg I think) for an hour when I get in, and the se again any time I wake in the night.

I use fingerless gloves too, in fact I looked for new ones today in Claire's classy, me but they had no warm stuff at all! I can't wear them 'out front' at work but I wear them in the workroom and sometimes at home. A lot of the pain I get is in my hands and fingers - not surprising the doctor checked for arthritis but there were no other indicators so I just have an additional dx of 'arthralgia'. I haven't worn my wedding ring for months, and severely limit time on the piano - not that I feel like playing much anymore anyway TBH.

sounds grim badvoc
My rheumy isn't sure how my disease will progress as they caught it very early on. They can't see any signs of raynauld's but I've always had circulation issues and really suffered with chilblains as a teenager and certainly have very cold hands and feet a lot. I also get sjogren's like dry eyes and mouth and they think my feet issues are as a result of scleroderma...all part of the MCTD. Apparently MCTD sypmtoms of all these diseases are milder than the full blown symptoms and I should count myself lucky

I try not to let it get me down, and just usually get on with it, but when a virus hits it makes it all seem harder. then DH feels like he has to have competitive illness and makes me feel like I'm exaggerating as his snotty nose/sore throat/cough is worse then mine. He doesn't get the can't see it, so it can't be bad nature of this illness.

I struggle to get my work to understand as well. I have called off tonight (I am doing home care work at the minute) and will probably have a disciplinary because of the number of times I've been off. they can't get it into their heads that I can't hold the steering wheel to drive or that hoisting old ladies into bed would be somewhat dangerous with my fingers locking up with pain and cold.

Sorry for the whinging

I get lots of night sweats fuzzpig (combination of lupus, the meds and being of a certain age); I fear electrocution with an electric balnket

the one thing that keeps me going is that I was diagnosed late, and symptoms generally lessen after menopause so I won't be too inconvenienced for that long hopefully as I'm 44 and peri-menopausal already!

Hello LackadaisycalArbitrary, your inlaws sound lovely. Hopefully having them there & H away will help.

I wear wrist warmers at home. And socks, fluffy bedsocks & fugg-type slipper boots to help with the cold but because the coldness comes from within, I don't seem to be able to combat it. I wondered about Raynauds too, Badvoc. I read the other day that it is common in people with Lupus.

Don't be too hard on yourself, Badvoc. I don't tend to get itchy although as a teen I used to get terrib;e eczema on my legs.

I have a massage booked for tomorrow but am now wondering if they'll do it. They ask medical questions, don't they? I think they won't do it without dr permission for some illnesses.

Evening.

I keep posting on these threads and then running out of spoons!

I have thoracic outlet syndrome, cfs, rayaulds, scoliosis, hyper mobility, severe depression etc etc.

Just going through the first stages of using a solicitor to try to get my v large employer to agree my ill health retirement

Almost had a breakdown regarding the whole process last week. Feel like I have been run over.

Hi Slummymummy. My head of dept suggested I retire due to ill health but the thought terrifies me. Sorry it's all so complicated. I am also hypermobile which is great for party tricks but causes a whole host of other problems too.

I have decided to to order a travel kettle & keep a tea tray in my bedroom like you get in a hotel - little sachets of coffee, tea bags & some milk.

Sounds like a plan grockle! Though you need biscuits too of course. :)

I'm not eligible for retirement as I haven't got the pension (my plan had been to start paying into it once I started my permanent contract, but then I got ill very quickly after that. If I'm not able to continue working, I will simply be 'dismissed' :(

Fuzz: loads of other universities now do distance learning degrees. Not just the OU. So if you ever find the energy it might be worth investigating that. Or even going back FT in the future if that appealed more. I had DS1 at 19 but I went back and finished my degree when he was a baby (and then got 2 more on top). It's such a shame you never really had the chance to join your pension scheme. You don't need to feel financially precarious on top of everything else.

I get pain in my hands but they can never find any inflammation. My joints get red and hot though (but never where a doctor might witness it, of course). I also get hideous night fevers/sweats (which apparently make it very difficult to share a bed with me, especially when combined with frequent waking and tossing and turning trying to find a comfy position to lie in). It's the arthritis. H read the info leaflet the rheumy gave me when I first saw her and pointed out that I most definitely have night fevers.

I get itchy badvoc. Usually on my upper back, scalp and arms but also on my legs and everywhere else sometimes. I usually have little scabs all over my shoulders and upper back from scratching in my sleep, and sometimes on my face. It's a million times worse if I take tramadol; then I end up scratching my skin raw. I get a rashly type thing on my cheeks too; the skin is always really rough and no amount of moisturising makes any difference.

I don't have reynauds (although H does, but it's the unexplained and otherwise symptomless kind; he'd be fine if he would ever wear gloves). It looks really disturbing when his fingers go white and I would imagine it is painful. It's hard to tell with H though as he whinges about everything and goes all competitive illness at the drop of a hat. It's really frustrating when he does that; I want to let him live a week in my life and then see if his cold is really so unbearable. Sorry you're dealing with similar Daisy.

My DP is competitive with illness too, arbitrary. If I am not well, he has to be too. If I get new/ different meds, he has to have more/ stronger drugs... It's really frustrating. Have you been tested for Lupus? The rash, especially on cheeks is characteristic if Lupus.

I tested positive for lupus in a blood test 2 years ago, but they said that I didn't have enough other symptoms to dx.
I am not really sure what that's supposed to mean.
That I have lupus?
ThatbI will develop it at some point?
I don't think the fibro dx was correct tbhh, but more of a "well, it must be that" scenario.

That's really useful to know, thanks arb :) I'm not sure I'd get any funding as I am now on 'restricted status' :( which may mean no loan, and could not possibly afford the fees, but I haven't even got round to phoning the OU and asking for my completed modules to be certificates. I have 180 points ie half a degree. I was thinking of Sussex, Surrey or Brighton if I go to an actual uni one day. But in a way I don't really know if there's any point, as the career I really wanted (primary teaching) seems somewhat unrealistic for someone who can't even stand up . So I am just trying to avoid thinking about it right now .

Jeez what is with these men who feel the need to out-ill you?! WTF? How can they do that to the women they love FFS. It's so immature

Really interesting about reynauds, I'm going to look it up. My friend has hypermobility and dodgy (lax) ligaments (or is that the same thing?) particularly in her hands, and gets a lot of chilblains - eg when she spent a day outside she couldn't write for the rest of the week. She's a primary teacher and I'm trying to persuade her that she should get her employer to recognise it as a disability and not make her go out in the cold so much.

CertificateD not certificates sorry.

Oh, getting verification of the modules you've completed would be no problem. It would be up to the university you wanted to attend to decide whether or not to accept them towards the particular degree you wanted to do. Mostly that decision would be based on how closely they mirrored the content of the compulsory modules in the degree (although anythng would count in place of open choice modules).

The 'restricted status' only applies to the OU. It's an internal policy. You'd be eligible for normal student funding like everyone else in the country as you don't already have a degree. It would be loans but you may be entitled to bursaries etc because of your disabilities and low family income. The loans aren't necessarily as scary as they sound, as you'd have to be earning far more than you do now to have to pay them back. You can get funding for PT study now too, so that might be a route to explore given your health issues. Universities are much more disability friendly now and can provide all sorts of support (and help you access funding for this).

Grockle: I have no idea if I've been tested for lupus. Probably not. They took loads of bloods at rheumatology (they always take bloods) but I think they were testing for the stuff that indicates ankylosing spondylitis. Maybe I'll ask about lupus. The rash is more subtle than in most of the photos online, but it is annoying (and more annoyingly the rosy cheeked look makes me look far healthier than I am, so long as you ignore my eyes). I certainly have symptoms (but so many AI conditions share symptoms): plenty of fatigue, joint pain (but no damage), rashes, muscle aches, fevers, memory and thinking issues, chest pain/difficulty breathing (but no wheezing), mouth ulcers, some dizziness, etc. So it might be worth checking out.