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General health
Spoons! Support for those with chronic pain & fatiguing illnesses
Grockle · 03/04/2013 13:48
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 
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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 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.
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!
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.
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.
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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.
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