Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Shit shit shit. Got a massive swelling behind my knee, can't walk and start my new job tomorrow. Fuck you, RA! Just fuck you!

I think it's just a description of symptoms rather than a diagnosis. I'm not sure though. And I don't really mean 'just'

We went to a theme park for little ones today. I sat on benches most of the day but am shattered. I feel sick with exhaustion & all my legs ache. I'm worried about work this week, especially as we're going on a trip to a bigger theme park this week. It's quite big & will need a lot of walking as well as being on the ball, keeping everybody safe. The thought of it is making me quite anxious.

Oh crashdoll. Will ice help? What a nightmare.

I'm icing every hour. I have a pair of crutches but they are in the loft and have no way of accessing them! Going to try a couple of tramadol and bed soon. Hopefully I'll be able to hobble enough by tomorrow to manage to get to the car and to the office.

Oh goodness, you poor thing. What is your new job?

It's not easy to explain but basically, we get referrals from social services and work with adult service users (disabled adults and older adults) to create care/support plans. I got offered the job after doing my social work degree placement there. It's just for the summer as I have one more year of my degree. I loved it, so I'm glad to be going back as a paid member of staff till September. I'm hoping that the thought of being there will distract me from the pain!

I just saw your above post, I'm not surprised you are exhausted! It wasn't Peppa Pig world was it?

I'm not sure could be a bit of both - or perhaps more of a descriptive diagnosis. I am lucky in that my joints are not as hot and painful as when I was first ill. I hope everyone else will improve too. My brain is just as befuddled though!

Sorry did not update (a very long distraction in the middle of posting).
Hope the cold pack helps Crashdoll. Can you borrow some walking poles?

Oh wow, that sounds like an interesting job. Well done!

Not Peppa Pig world but that's where I'm going this week

There are plans to do a drug trial in the UK

We've joined together to raise money for a UK clinical trial of the drug Rituximab for patients with myalgic encephalomyelitis. Rituximab gave promising results in a study in Norway. This has given hope of treatment to patients around the world and now needs to be repeated in other countries.

fundraising page

more information

Grockle if you go to Peppa Pig world they let you in free of charge if you are a wheelchair user and also you can get a wristband from the 1st aid office so you don't have to queue for the rides.

Slightly changing the subject but I applied for DLA ages ago and got a letter this morning saying no I am not disabled enough! What a bloody joke. Will have to go through the appeal process again now :(

DLA is a bloody joke. I spend a lot of time at placement/work dealing with very distressed disabled people who have been turned down. It makes my blood boil.

Thanks gallifrey. The park is closed to the public when we go so I don't have to worry about queuing for long. Hopefully. My line manager told me today that I don't have to go, if I'm not up to it. I'm so grateful.

I'm going to go to dr tomorrow to see about pain relief & fatihue & what to do.

I am still doing the last bits of my form. It is a nightmare. Think I've left it too late to have a chance of backdating it but they will still accept the form won't they?

You can send in the form any time, but any payment cannot be backdated if you miss the deadline.

fuzzpig Before you finish your form, phone and check they will accept it. As far as I am aware, DLA forms will not be accepted after 10th June.

I woke up a couple of days ago with a swollen knee and a massive lump behind it. I spoke to my rheumatologist nurse who reckons it's a cyst that's very common with my condition. It's spread down into the calf, so I phoned back and I'm off to the GP tomorrow. I am praying they won't drain it, I've had a toe joint drained and it was a horrible experience. After almost 4 years of refusing to use a mobility aid, I caved and used a crutch at work. If I do need to use an aid more regularly, I'm going to have to get an ergonomic one because the NHS crappy grey ones are hard on my hands.

What?!?! Oh fuck

And sorry about your knee obviously!

Oh bollocks though... if I have spent so long on this form for nothing I will be gutted :(

Oh I had forgotten the change over, kids change over later.
Hope your leg does not need draining Crashdoll, and you got somewhere at the GP Grockle.

hello all...hope knee gets sorted crash doll. And spoons to everyone!

Crash, hope they can sort your knee easily & painlessly.

Fuzz, I don't know when the deadline is or how the new system works but hopefully you can transfer the info from the DLA form? If you typed it...

I saw a different GP today who said he'd just done a module on fibro & insisted that I must exercise & that was the answer. I explained that I have a 7 yr old, a dog & a very physical job so exercise constantly. He seemed to think that was ok. Why is it that doctors always think that fibro/ depression is to do with laziness?

He said tramadol should work as it;s the best thing for fibro pain but since it wasn't helping, to try gabapentin. He said it is used for 'pain syndromes' & made me feel like it is in my head. Anyway, I started it tonight & it knocked me out! I woke up at 3.30 am though & haven't been back to sleep. It's almost time to get up now.

Grockle hope the new medication is helpful, and you start getting full nights sleep. Neuropathic pain is not 'all in your head' but due to the pain sensing system misbehaving.
I am trying to build up my exercise tolerance (from a very weak starting point as I have not been able to do much for 4 years), as I think for me that is a way to improvement. I am trying to work out what I can do whilst horizontal (I think it is the POTS that make moving around so dizzying) - like easy push ups, but I have not found much I can do to strengthen my legs (without expensive equipment). Any one got any ideas?

I have the same problem exercising magso, it is definitely the POTS. It explains all the problems in my teens too. I always wondered why I couldn't stand up like everyone else, why I couldn't manage PE. If only I'd known about POTS then, I wouldn't have spent my entire adolescence assuming I was just unfit and pathetic.

I phoned DLA line as soon as it opened this morning. She said I will need another covering letter to say why it took longer than it should have, BUT because they sent me the form under DLA rules, that still counts and I can still submit that. Obviously I am unlikely to get backdating but I'm not fussed any more. I feel a bit silly now for crying on DH for an hour last night convinced he was going to hate me or leave me for being so useless I really hate my brain sometimes. I barely function like a normal person as it is, I worry I am like my dad and my mum left him because of his extreme lack of functioning. CFS has made it all a million times worse.