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/

Korma, I wish I could :( a couple of pretty cold days coming up and then on to more average autumn temps in the low teens.

Scone, is there anyone who can pick up a prescription for you? As well as phoning the osteoporosis advice I'd ask for a telephone appt with the gp and ask if they can leave a prescription behind the counter for something that will help short term til you get there. Also you need to be taking your naproxen regularly, not as a pain killer but as an anti inflammatory to try and start calming things down.

Off to the rheumy this morning. Not expecting anything helpful, he tend to pat me on the head and tell me that he's seen much worse and he's not worried about me. Which is the opposite of helpful when I'm in pain.

Hullo all, recovering from lumbar puncture okay although not leaping about. .

Have reached a weird sort of plateau where I need to set myself some small achievable goals so I don' t just lie here festering.

Yesterday, in between resting, I:

had a shower
put on makeup
got dressed
put some washing on
put some washing away
managed the walk to school and back
looked after children negligently for an hour (they played)
sat up at the table to eat meals

I ended up having to nap at 7 pm. .

Today I have so far:

had a shower
made my breakfast
ate it at the table
got dressed

I have a shop arriving which I need to put away, and I need to make tea and entertain children for a couple of hours later. I will also listen to a relaxation track.

I might answer a couple of emails. I think I need to do one more small job to see me through the afternoon...maybe pick up toys for 15 minutes or something.

That sounds like a really good approach.

I'm doing my best each afternoon to make space for a nap straight after lunch for a bit. It does seem to help me get through the rest of the day.

I was being unkind about my rheumy. He's given me a shot of long acting steroids in the bum which was undignified but hopefully will help :) at the moment it feels fine but I'm not quite sure what it will be like when the anaesthetic bit wears off

Welcome Kitten. I am a fan of the steroid in the arse shots. They give me good relief for a few weeks, hope they do for you too! I'm very restricted on steroids as I have osteopenia at the grand old age of 25. Do you have rheumatoid?

Psoriatic candy.
Osteopenia at 25 :( that is really rotten for you. Steroids are wondrous but also terrible. They gave me cataracts and hence onto a cascade of ever worsening eye problems but I'm still really pleased to be given the chance of not feeling rubbish for a while. Did you have any side effects?

On steroids? No sideys on the injected ones but the tablets affected my mental state very badly. I used to suffer from very poor mental health. I am 95% well now but steroids seem to magnify my past issues.

Eye problems are horrible, aren't they? I feel for you.

good to hear about the injected. Oral steroids stopped me eating completely - it was really weird.

Oral steroids make me ravenous!! I enjoyed the lovely hospital food! Oral steroids always make me quite down after the first few days. Real mood messers.
Hope the injection will help Candy. Are you having to treat your osteopenia?
Sorry about the eye problems Kitten. I am recovering from a retinal haemorrhage which blurred my better eye ( and made driving impossible for a few days). Its stopped now I think, and is slowly clearing. (Yes I did get it checked and am still going back and forth to the eye dept).

it was me who had the injection :)

the retinal haemorrhage must have given you a fright. Do you know why you had one?

Sorry kitten, hope you are not too sore and it is working. I get easily confused. No I don't know why, especially since my BP is low not high, but I do bruise easily so perhaps it's all the same thing. Lots of things not quite working right.

Brain fog Magso?

Really sore from about 5am. rheumy said I should phone the pain clinic, so I shall later today. I had facet and SI joint injections about 3 months ago. They were brilliant, but not working any more.

Can't believe I have to drag myself through today. Still, 12 hours time and I can lie down again. Something to look forward too :)

I am really regretting turning down my referral to the pain clinic. I'm going to ask to be re-referred next week

I'm so cold, my heart is racing, I have chest pain & my back hurts.And i had a horrid vertigo attack this morning which has subsided somewhat but left me feeling hingover. Moan, moan, moan. I am not at work & feeling terribly guilty.

Hope everyone is ok x

Have somewhat of a dilemma...
Always wanted two DCs, health luckily didnt take a turn for the worse until the second was born. Recently though both me and DH have been thinking maybe three would be a good number, and decided to get some money/house stuff sorted, DS1 starts nursery in January, DS2 will start playgroup next September, so we thought next Sept-ish would be a good time to maybe start trying. And here is the problem. The sulfasalazine is having no effect, I am worried I need to try methotrexate, but then i'm worried that even if i have stopped it may affect any future children. Plus if it needs to be stopped for a certain amount of time before ttc (i think its 3m) is there any point starting just to stop again in a few months time? Should we just ttc now? Or maybe wait more like a few years?

Have you been to the pain clinic before Grockle? Also, really important question - is chest pain normal for you?

Beyond, obviously it's for you and your dh to decide. My take on it is a) there's is rarely ever an absolutely ideal time to have a baby and nature has a way of trying to scupper timings any way. And b) it's impossible to know what the future will bring. I tend to sway by the idea that if you want a baby and its going to be manageable then sooner tends to be better than later.

beyond, obviously there are endless considerations to having a third baby but here's my view: you are clearly suffering severely with your condition and may need quite a bit of help in the future. Three is a lot different to two (and yours are very young). Whilst most people can manage to look after 2at a time, ie friends or grandparents, many will find 3too much. Some of my friends did the three quickly together and were totally knackered and stressed for years and they were in good health. A couple had 2 close together and then had there 'indulgence' baby 3-5 years later. They definitely looked like they were enjoying it more and the older kids adored the baby. The gap wasn't so long that they were a different generation, just long enough.

So personally I would only go for it now if a) you are truly physically and emotionally to it and b) can afford a lot of help!

Please feel free to ignore. My husband made me stop at two..

I do think it would be easier to wait. But then otoh I'm studying now, hoping I'll be well enough to return to work once I'm finished (about four years left p/t, so these two will be in school by then), returning to work would get put back if i had another any later than in the next sort of 18m. Forgot to mention the study in my last post. And forgot to mention my prolapse too, which I can't really get fixed until I'm done with babies.

No, not been to pain clinic before, badkitten. And yeah, I seem to get chest pain. The first time, it was awful & I spent a day in hospital & was diagnosed with costochondritis. I had lots of ECGs, heart scan & lots of blood tests. Now, it just gets very tight & feels like an elephant is sitting on me.

Beyond, I agree with Kitten... there's never an ideal time to have a baby & if you both think you want one, then go for it. So long as your body can cope with it, physically & mentally & your meds are ok. I love the idea of another baby but I know I just couldn't do it.

It's good that you know what it is. I hope it has eased off today Grockle.

The pain clinic sorted me out with my back injections, which was brilliant but it did take 6 months from referral until treatment. I phoned back yesterday and the answer machine said they try to return the call within 4 working days. I hope yours is faster than mine.

Hullo all, bmcs here but have NC.

Still recovering really. V tired. Not quite the result I'd hoped for so far but need to give it more time before becoming extremely depressed!

I feel poorly. Last night, I was lying in my bed and wondering if I might die and hoping for it too. I'm incredibly breathless and weak. My joints have flared up so it's likely to be costochondritis again but it's scary sometimes. I think this feeling of utter shitness may be because I injected methotrexate, my anti TNF and had the flu jab in space of 24 hours. I've also just finished antibiotics for a UTI, so I'm thinking it's 'only' medication overload. I did consider seeing the GP but to say what.....shoot me please?!

Oh candy

I have asked my GP to put me down before.. he refused, obviously

I do hope you feel better soon. I have the breathless costo thing plus terrible insomnia & its making me feel awful. Sending you spoons.

I was wondering if any of you can describe the fatigue you feel? Rather than 'tired' How do I explain that it is more than that?

I am so tired, I can barely move or think or speak.

My boyfriend suggested some fresh air might help 'go and sit in the garden'... despite being relatively understanding, it just highlighted that he doesn't get it. He works in health insurance & often has 'helpful' suggestions My boss is like this too. I need a really good description that cannot be argued with. I usually mention it being a tiredness in my bones rather than sleep related but that doens't help.

Grockle 'My muscles don't work.' 'I can hardly move my arms, let alone walk.' 'I feel like I'm moving through treacle.' 'I can't think, sorry.' 'It is really bad flu without the fever.' 'I feel like I've been switched off.' And I'm very fond of the lead suit analogy. .