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/

Yes, very expensive. I saw a chiropractor for about 20 weeks for some shoulder pain/restricted arm movement and it was £35 a session. No holiday that year!

Good luck with the move. Are you moving somewhere nice? I find the aches and pains are easier to cope with if the scenery is good!

yes we are moving to Milton Keynes :-) hopefully find a better doctor there too.

Gallifrey Please be careful.

Matilda, say something... can you say you have bad legs too? You don't need to give your entire medical history but it would be such a shame if you stopped going without at least trying to make it work. It was be sad to have regrets. Someone might be willing to help. In fact, if I lived near you, I'd do it... we're just have to hope we could alternate our good/ bad days

I stopped all my meds for 2 weeks & felt amazing! Then it all crept back slowly. The insomnia didn't go away at all. I started back on minimal meds - tramadol & ADs but I'm so shattered, I can't function properly.

I used to have a chiropractor for a year & it was heaven when I had terrible back pain. He used to jump on my back & make my spine crunch (it was a bit alarming!), causing instant relief. I felt very bruised the next day & the pain came back slowly over the next few days. I get reduced rates through work.

Today I saw my GP who has now referred me to the CFS clinic. No idea what they do there but at least it's another place to try to get some help & support. Last day of term tomorrow. Phew!

I'm so bored of this shit.

Grockle the CFS referral sounds helpful. Mine gave me some I:1 sessions, which were quite helpful in the long run (tiring at the time) but I think put me on a better path, even though I was quite negative. Just having help in pacing was good, despite thinking I had pacing nailed before I started, and it was good to talk with someone who understood illness and was positive about what I was still managing to achieve.
Well I went to the new chiropractor (old one is away at present) but she only did an assessment so I am back to using my Tens. I go back next week for manipulation. Not helped by falling and the usual bruises. The cost of regular treatments is the main problem.

SirBoob how are you - or is it best not to ask?
Gallifrey I hope the move will help. Bedfordshire seems to have quite a good health authority so hope you are lucky with a GP who can help.
Matilda I think saying you are restricted with running would be better than leaving the group. Could you and you dog just do things slower?

SirBoob, you ok? I hear ya, totally bored with (by? of?) all this shit. However, I finished work for the summer today & feel a million times better. I will still work but at my own pace & on my own without other people making demands on me. I know I am lucky.

I have high hopes of CFS clinic. If only I could sleep.

Love & spoons to all.

Hi there!
I just wanted to post and say that I had ME for 8 long and painful years, but now I'm fine.

I used to use up all my spoons just getting up and washed, and used to so and the rest of the day crawling around and lying on the sofa, moaning with long muscle pain and sweating.

I used to have baths hot and then cold with lavender oil and black pepper oil, and I changed my diet completly - having no refined carbs or carby fruit.
Just lamb, and pear some weeks, day after day, and then fish for breakfast and a big vegetable and brown rice balti/ tomato for evening meal, week after week.

It took me 8 years of just giving in to ME to get out of it. I had to accept that I would always have to acknowledge it as being there.

I work part time now as I got ill from ft work after having my DC. So ft really, if you factor in that parenting job!

I try and eat cleanly, and always sit whenever I'm anywhere. I can't stand for long at all. I make people give me a seat on the tube/ bus.

I carry money always for a taxi, and I've learnt to just leave wherever when I need to. When I'm out for a drink I have spirits and non yeasty drinks: gin, vodka with soda/ tonic.

I try and have one after noon nap every week, ad have trained my DC to put on a DVD / book / get out the lego while I conk out.

I only exercise in a gym, as I can't stand the idea of being miles away from home and having to get back again before I can rest. I do yoga and Pilates and I do aqua aerobics, but only for about half an hour at a time.

Learning to slow down and pace myself was the hardest thing to do as I was pretty hyper, but it's made the most difference in my life.
Being able to say "no" is also a huge positive!

Hope you all find a spoon in your back pocket tomorrow- not to spend it necessarily, just to hold it and know you have it!

Matlida - can you borrow an interested teenager to 'run' the dog for you?

Thanks for the thoughts about my dog agility class. I know it's a pretty trivial dilemma ! Anyway I am going to speak to the instructors and give a bit more info. They are willing to help but I've had to ask every single time and we all hate asking for help, I think.

Venus, your post is really inspiring, my SIL had a really similar illness, yes it did last years but she has recovered. She manages her life in a very similar way.

New question...I notice that lots of people on this thread take tramadol. Now I take heaps of drugs, naproxen, gabapentin , cocodamol ,amytriptiline , but tramadol is only for really awful days and then I can't do anything except lie down in a semi comatose state. Can others actually function on tramadol ?

Have a good day.x

I can't take Tramadol as it gives me massive chest pains. I generally take nothing at all as I can't stand taking drugs. I reckon that if I was up for them, my GP would have me on quite a few now, but I refuse them and manage my symptoms as best I can without.

SirBoob you ok?

I'm off on hols. Not looking forward to it tbh, but hey ho! I'll see you all soon. Take care and many spoons to you all.

A bit of good news

"We are pleased to announce that Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), has agreed to advise the charity on all aspects of a UK rituximab trial.

Professor Edwards was responsible for both the phase I and the proof of concept phase II (NEJM 2004) studies in rheumatoid arthritis , which formally established the validity of B cell depletion in autoimmune disorders. It all started with a paper called ?Do self-perpetuating B lymphocytes drive human autoimmune disease?? published in Immunology in 1999 [1].

There is no other expert in the UK who is better placed than Professor Edwards in advising the charity in setting up a rituximab trial to benefit ME patients."

I'm having a really tough time. I'm lonely as well as sick and tired of being sick and tired. I'm incredibly disabled by my condition at the moment and I hate the way I am. I'm scared this is how the rest of my life is going to be. If it is, I just don't want to live it.

Big hug, Crashdoll. This, too will pass.

Can you phone a friend?xx

Another gentle hug for you Crashdoll.

Venus, what a positive post. When you say you eat cleanly, what exactly do you mean? Is it still brown rice, veg etc?

I had an OT assessment today which was pointless. but I have another appointment next week for them to assess my hand, since i can't grip anything properly.

Crash, I feel the same - lonely & sick & tired of being sick & tired. The future can seem quite bleak and unappealing. So sorry. I wish there were a simple solution.

Thank you all. I have therapy later so I'm going to talk it out a bit. I'll be ok, just having a blip. I took some tramadol and had a few hours of good sleep thankfully!

sending love and spoons to you all, I know exactly how you feel xxx

Just popping in to say hi. It's crash under a new guise. I'm counting down the days until I get to start my new treatment and praying I'll be one of the lucky ones that it works really well for.

for all x

Hello, candy. I like your new name.

I'm taking DS pony trekking now. I need to sleep - had a 2 hour nap but can't wake up properly.

Hi, I've had two of these threads on my 'watch' list but never was able to read more than a few pages at once, and never caught up. I hope it's okay to stop in -- I'm really struggling with fatigue problems for the last four years, but got fobbed off at the GP's early on, but I've now talked to enough people and read enough that I'm positive my experiences are not normal and I'm working my way up to getting an appointment at a new GP (although we moved in Dec and I still haven't managed to register yet :( ). I just feel like my whole life is a string of not accomplishing basic things while being completely exhausted at the small things I do manage.

Things came to a head yesterday after which I came to look for this thread, when I talked to my Dad on the phone and he was criticising me for not yet putting together a play table that he got DD at Christmas, and saying he wanted to get her a climber but he doesn't feel he can because I won't put it together. I know its ridiculous and I should be able to 'just do it' but we only just got our house on the market a month ago after moving and I was saving all my energy for working on that because it seemed the most important thing, and if I did more stuff I'd be even worse off. And since we got the house on the market things have been really bad because I've not been able to rest on weekends, as we had overseas visitors one weekend and I remember being worried about the next work week because I normally get sick by Wed if I do things both weekend days, and we did tons. And then that week was really bad and I had to work through the next weekend and last weekend was a social event that I'd promised to help out at. I feel like I can't ever get any friends because I'm always so tired and I wanted to use some energy for something that might help me get to know people, so I went. Then I was already really bad at work on Monday, and then just spaced on Tuesday and missed a bunch of meetings and by Thursday actually fell down the stairs twice, embarrassingly in front of colleagues and an out-of-town visitor . I thought the stairs must have been slippery (they are weird and twisted, so very thin at points), but DH said he wasn't surprised because I had been so tired and clumsy this week. And then my Dad complained about the table. And I thought maybe I should just put the table together, but we need to get a drill, and if I go out this weekend I know I'll be even worse at work next week and I really can't manage that. So I was crying and 15mo DD came over and hugged me, and its so pitiful that a 1yo needs to comfort me.

Sorry that was a big splat and I hope its not inappropriate here.

Candy, love your new name. Hope your new treatment helps, can you say what it is? Please don't if you don't want to. I'm just nosey and am a relative newcomer!

Raggedy, your situation sounds awful. If you were to read your post and imagine someone else had written it, what would you advise? Your DH sounds understanding, can you get any extra help from him or anyone else? I would get GP sorted ASAP and be asking for a whole range of investigations. Sounds like you are trying to prioritise tasks ( can't your dad put the bloody toys together for you?), maybe you can get even tougher ie afternoon in bed, time off sick from work, employ a cleaner, get DH to take kids out and do the food shop?? Really hope you can find the energy to put yourself first and learn to say no to others.

I am typing as lying on my bed due to severe back pain so am practising what I preach! Hope you feel better soon.x Btw it took me ages before I would ask for help, I know how hard it is.

raggedy, that's exactly what we are here for. I dont know what to advice, other than to be kind to yourself. Can your DH make the table? Or could your Dad come and make it? Mine has been quite supportive & is good at getting things done now he sees how ill I get.

I have done too much - having friends stay last week & going out all over the place every day seemed ok at the time. Then, the pony trekking yesterday tipped me over the edge! I've had a long nap today and am determined to take DS to Chessington tomorrow as a surprise. I've taken 2 zopiclone but still can't sleep

hi everyone, we have moved to our new house, it's lovely with plenty of room downstairs for me to manoeuvre my wheelchair about. I'm absolutely shattered, even tramadol isn't touching the pain in my legs I felt quite good on friday and probably over did it.
Grockle did you go pony trekking too? I used to have a horse before I became disabled and I'm keen to start riding again but not sure if I could do rda.
Sending spoons to you all xxx

Thanks everyone for the kind welcome! I was really stressed out this weekend, so very nice to see kind words.

I hope those who have over-extended manage to recover soon. Pony trekking sounds fun, even though very exhausting. I also used to ride horses, and taking lessons again is one of the many things on my list to do once we sell the old house.

And sorry, I didn't make things clear when I was all upset: DF lives in the US, so can't help with the table. And unfortunately DH has ME and is worse off than me. He helps a lot, though he does childcare while I'm at work and then works on a PhD in the evenings. He can't do anything very physical though. I'm afraid that the next home-thing I do is going to be mowing a strip of lawn so that the postman can continue to reach the door (the rest, embarrassingly, is now meadow it almost looks on purpose though, so a bit better than just overgrown, and we're tucked down the bottom of a hill so not embarrassing the neighbourhood), and I don't know when the table will get addressed. We can't afford cleaners or lawncare, etc., until the house sells -- I just looked at the bank account and we're slowly eating into our savings. I think I need to take the time to do a good budget and try to stop the creep before we're in dire straights. But, of course, that takes energy!

GP is also high on my list -- I have a lot of issues around that, so it is not as easy as it might sound :( I'm phobic of phones to start, which is one of the reasons we haven't yet registered. I have a lot of trouble letting myself be 'vulnerable' and so tend to minimize my problems at a Dr's, so if I'm not careful I'll go in and say I'm fine. And it is hard to get over because I have had bad experiences with being told I was making things up and what I was experiencing wasn't real, plus some nightmares in the US regarding health insurance which lead to a depressive episode, so there's a lot of psychological baggage to battle through. But I've told DH a couple times I really need to go, and I told you here, and I even told one person at work, so for me that is progress. Once I've told people I am more likely to take action.

Raggedymum, quick thought, could you confide in your Health Visitor? Some are really great. Maybe also ask a few friends and acquaintances for kindly GP recommendations. I think you have to go in to register and collect forms so you may not need the phone at all.

If your partner could go with you would that help? Also write a bullet pointed list of your problems or concerns so you can show your new GP . If the list is long or complex ask for a double appointment .

Last thing....bugger the table! It will happen at some point. If your dad mentions it tell him the truth. Maybe he'll fly over and help or at least getting on at you.

You've made a start, do hope you get some help soon.x