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/

[yegodsandlittlefishes]

Thanks DAISY, I do need to take that advice (my body isn't giving me much choice, feel achy/fluey and I know not to push myself with this). I have spent Soooo much money on this trip, and haven't had a holiday for a while, so wanted to make the 'most' of it.

Spoons to all!

[Grockle]

Hello... link to other thread didn't work but am glad both threads are helpful.

I'm paying for our trip to chessington on Monday & for doing too much last week. I feel dreadful. It's not like I've been climbing mountians. We're off to Camp Bestival tomorrow which is DS's holiday so I can't not go but we're not packed & I really can't face it. It'll be ok when we are there but the thought of it is making me feel sick.

Lisad, I don't know. My lupus diagnosis is changed every time - I have it, I don't, I do, I might... I don't know any more.

When you say 'sun sensitive', lackadaisycal, what does it do to you?

[Grockle]

Second attempt to link to other thread:

HERE

[LackaDAISYcal]

Five minutes in the sun, Grockle, and I am the colour of a well cooked lobster (though it is just a reaction rather than actual sunburn), my upper arms and decolletage are permanently mottled red/purple as well. I get a nasty itchy blistery rash and it brings out joint pains and fatigue .

I used to be a real sun worshipper too. Now I use factor 50 even on a cloudy day to try and minimise the effects of UV.

I started a thread on here a few years ago (before I was diagnosed) about the colour of my arms etc and I now have a huge patch on my stomach too. Doc says its livedo reticularis and is inflammation of the blood vessels due to the lupus, though I've read that it can be connected to heart problems

[neriberi]

Afternoon all. I was at the docs last night, my blood pressure is super low at the moment so much so that I've been told to wear flight socks, that's all find however I am finding being a healthy sick person bloody exhausting at the moment, I even asked my DH if I was hard work and was being married to me hard work?

I've been told by my consultant and now my GP that I need to slow down and cut out the commute and that I should be taking things a lot easier than I am and that I need to stop working in London, which is all fine in principal but how on earth do you slow down when you have no choice? I keep being told what I should be doing to help myself and I know what I need to do to help myself BUT I'm not in a position to do any of it because of my current financial situation. Right now I'm angry that I'm ill and can't for the life of me remember what its like to feel normal anymore? And I'm fed up of people pointing out the obvious as well. Rant over.

I believe a CRP blood test is something to do with checking for inflammation. See the link for a bit more info.

www.webmd.com/a-to-z-guides/c-reactive-protein-crp

[Matildathecat]

Daisy,

Hi, I am starting a pain management course I September it's run by the local hospital pain clinic. They held a taster day a couple of weeks ago and I was really impressed.

It's 8 weeks long one half day a week. Mixture of discussions, pacing, ideas for alternative therapies etc. also an exercise session and relaxation. By attending you also become eligible for one to one Alexander Technique classes, free group exercise classes for 'people like us'(!) And, I think, acupuncture. It's run by psychologists.

Tbh I think, as a former hcp, that I probably know/do most of it already but even if one thing helps I'm up for it. In these days of cutbacks I'm amazed its on offer.

One thing they were clear about was that they were looking for ways of managing and living with pain, not curing it. They did not expect that we would be reducing analgesia even. I was pleased about that. Much as I would love to stop taking meds I certainly don't want any pressure to do so...

Hope you get something from your course, will look forward to hearing about it.

Thinking about dragging myself to the pool but my pain is zinging. Big sigh.

[raggedymum]

Ugh. Had to come home ill from work today, and I didn't even do anything on the weekend :( DD keeps hugging me; I think she can tell I'm upset and is either looking to make me feel better or for reassurance. It must be scary for her to have her Mum so upset.

Had a thought and looked up new surgeries online they all have websites! Very intimidating. No idea which to pick. None had any fatigue resources on their "links" or "info" pages. One had a form to fill out, but my software was too old to make it work. Also worried now that you need an appointment before getting any repeat prescriptions I may try to get one more repeat from old surgery before changing. My current medication is off-license -- they won't try to change it, will they? It's the only thing that enables me to actually function. When I moved to this country I got put on the "closest" licensed med (there really is nothing else in its category, it's unique), and it didn't work and was not particularly good for me to boot.

Completely sympathesise, neri -- your words could have been mine.

DH has taken DD out, so I will try and get some sleep, and hope I can get re-energised for the rest of the week.

[lissieloo]

Hi, can I join please? Fibro, severe teitzes, and heading into osteoporosis and osteoarthritis (just had a BDS to see what state my bones are in now). I had to go to bed for an hour this afternoon because I was in so much pain and shattered.

[BeyondTheLimitsOfAcceptability]

Helloo, checkng in after seeing the link in chat :)

Psoriatic arthritis here, plus regular old psoriasis and long term depression. Oh, and don't forget the recotcele from DS1. I'm a happy, healthy thing

Have to call up for blood test results tomorrow, then I can finally start taking sulfasalazine! (Am still breastfeeding DS2 and told I wasnt allowed DMARDs. Thanks to mumsnet, this is now sorted, yay!)

[Grockle]

Welcome lissie

Lackadasiycal I was going to do but that seemed a bit insensitive! Done it now thouug

What are you on, Raggedy? I think asking the local support group for suggestions is your best bet.

[yegodsandlittlefishes]

Hello again. Hope everyone here is coping this morning, and not faced with terrible choices. For those who do have difficult choices to make, I offer a hand to hold. (Purely selfish, am cold again and I could do with the warmth!)

I love these threads, they're a refuge when in pain.Thanks to all who post, it is all appreciated.

[buildingmycorestrength]

I had a bad couple of days but am doing a little better today - which is good as I have a major work deadline to accomplish!

Feel a lot better (mentally) since deciding not to chase work this autumn. Will just have to see what rolls in.

Holiday in Saturday - am pleased but nervous. I don't think of it as a holiday for me (except the extra pair of hands) but for the kids. I will be tempted to overdo it, but it just isn't worth it.

And yes, this is a refuge when days are bad. I didn't post for the last couple of days because I thought, 'You can't just go on there an moan, building!' But, um, yes, that is the point.

I honestly feel sometimes like you lot are the only ones who understand.

[MurderOfGoths]

"I love these threads, they're a refuge when in pain."

Absolutely, I can;t put into words how glad I am to have been shown this thread. It's amazing the difference it makes just knowing you aren't alone!

Struggling a bit today, did a lot of driving yesterday (always tough on my wrists and back) and I'm paying for it today.

While my family try their best to be supportive they only ever see me on my good days, never my bad. The saw me chasing my son around the garden yesterday, but they don't see the aftermath today.

[raggedymum]

Yes, well put! I do hope others moan, as I would feel silly doing so all alone and newbie-ish

I'm taking bupropion -- it's used as an antidepressant and antianxiety in the US, although is only licensed for smoking cessation here.

I think I will email the support group contact -- it can't hurt, can it? And over email it will a bit more distant for my social anxiety. I've been thinking of asking the one person at work in whom I've confided for advice, although I'm not sure about doing that. It is very difficult to open up.

[candycoatedwaterdrops]

Hello newbies.

My working week is finished! I love my 3 day weekends; gives me enough time for rest and some play. Although I'm pretty cream crackered and apart from a few drinks in the pub tomorrow evening, I don't have any plans except zzzzzzzzzz.

[MurderOfGoths]

STBXH has gone away for the night, and taken the car. This wouldn't be a problem except we've run out of nappies (he knew this) and he's got the pram in the boot of the car. I just had to carry DS to the shops and back. I am in so much pain I could cry.

[belleshell]

Roll on weekend, I soooooooo need a weekend doing nothing, we have been so busy lately.. I was late finishing work today (I had to re do online training, I thought I had completed in |Feb!!!) brain fog.........gggrrrrrrrrrr

Goth, so sorry STBX is a twat, mine still is even though he is a defo EX!!

[BreastmilkDoesAFabLatte]

Hello. May I come in and just sit here for a while with my glass of wine? I've just had a really tough hospital appointment... heart doing OKish (pending test results etc) but many unforeseen consequences of last year's surgery. And the scar itches worse than ever, ever before (have started separate thread...) and I'n just feeling miserable.

[yegodsandlittlefishes]

Hope you have had the chance to rest, Goth.

[yegodsandlittlefishes]

belleshell It's horrible when the brain fog results in extra work, the last thing we need, eh? Hope you have a great weekend doing very little!

[lissieloo]

Hi all, thanks for the welcome.

Goth, I'm what a nob!

Today we went to the zoo, and while I got around ok with lots of breaks and drugs I'm suffering now. I could happily sleep for a year and my hips feel like they are dislocating. But tomorrow ds has his last swimming lesson then we are going to watch the dogs at Monmoor, with PILs. I can't wait for the weekend, just so I can have a rest!

[yegodsandlittlefishes]

Welcome, fablatte I was just going to day I will join you with my hot milk, but I lay down for a bit and it was hard to move! My milk drink is cold, but will join you now! Hope that you can get the itchy scarvtissue sorted out. (My DMIL swears by vitamin E cream/oil for scars, but I found the only thing to work on mine was another operation on the same site, and the surgeon cutting off the old scar tissue, it felt much better after that (and his stitches were tiny and neatvand caused no problems).

[yegodsandlittlefishes]

Sorry, also I meant to say I hope the test results are better than you fear/hope.

[candycoatedwaterdrops]

OMG Goth I am fuming for you! Where abouts do you live? If he does something like this again (hopefully not!), I'm sure an MNer would help you out.

for you. Take it easy.

[BreastmilkDoesAFabLatte]

Hi yegods and thanks. Pain currently unbearable and I'm getting towards the stage of contemplating some DIY further surgery with a stanley knife, so it's probably fortunate that I don't actually have one in the house. I've taken max doses of painkillers and am awaiting callback from gp.