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/

There should be several hoops to jump through before it comes to that, solo. In my county they have stage 1/2/3 meetings for increasing levels of absence but they can do as many 1/2 levels as they want before doing the level 3 (which is the one where medical retirement may be discussed)

Oh and grockle/magso I actually can't just increase my hours again now! Basically this was the last chance to decide my permanent hours, after being only on a temporary change for several months. If I want to increase them in future I will have to apply for vacancies. But that's fine - I am happy knowing the pressure is off now. :)

Hmmm... well, I'll go and see what they say. Either way, I'm out of there after September. It would just be nice to go with a pension so that I could afford to do a fairly light pt job.

Fuzz it's that pressure that makes everything worse isn't it?!

Afternoon ladies! hope all is well? Ive just got my latest lot of test results back and part of my immune system isn't working properly so I've been stuck on prophylaxis.

I'd love to know about that, Solo.... about how easy it is. I wish I could be retired. I love my job but I get so ill I'm on my 2nd trigger meeting & almost at my 3rd but they've now doubled the amount of absence I need to get to the next stage.

I don't know what to do about DS... he doesn't fall asleep. Tonight it was almost 10, yesterday the same, at the weekend, it was 10.30. I know it's hot but he has a fan & this is ridiculous.

Hi can I join you nice ladies?
7 year history of ataxia here, coming and going (unknown cause) til last year when it hit badly and took me off my feet for a few months. Now been left worse than before with intermittent ataxia, terrible fatigue and restless legs and a few other neuro quirks. I'm back at work but struggling and have finally decided to get a wheelchair for long trips as I just can't walk far any more. My GP has been fab but the hospital docs less use than a chocolate fireguard!
I feel stuck between the able and disabled world :(

Hi medusa, welcome! Sorry you are having such a rough time. I had to google ataxia as I'd not heard of it. That sounds really frustrating. I'm glad you've got a good GP, they are worth their weight in gold. Very annoying about the hospital staff though - was that a consultant? What job do you do?

Solo yes the pressure is maddening, for me it was basically the pressure not to be off sick. My manager is nice and understanding but I am still scared of missing work. And even if I earn less money by doing only 12 hours, it's got to be better than doing 16 but missing several of them and getting sick pay instead, and worrying about losing my job.

I hope it's not too much pressure on DH as now he's got to get more work really. He will be finding out today if he's passed his fitness instructor NVQ (fingers crossed pleased, spoonies!) and then hopefully he can look for work in one of the many local gyms. Am really hoping they won't be put off by his age (45, although doesn't look or act it)?!

Afternoon all, I was just wondering how on earth was everyone coping in the heat?

Afternoon! I'm suffering in the heat - extra swollen. How's everyone else?

I'm in a horrid flare but I can't take steroids to ease my symptons because I've now got osteopenia (kind of pre-osteoporosis) and we don't want to take the risk of my bones thinning even more. I'm hoping I can start the new medication sooner than they think. Not sure I can keep going on like this, working 4 full days a week and just generally trying to cope.

Oh god the heat!!! Me no likey.

Crash doll that sounds awful is there anything you can do to try and stop the bone thinning progressing?

fuzzpig Apparently weight bearing exercise but the osteopenia is in my feet and my worst affected RA joints are....my feet! I'm going to ask my GP for a bone density scan of my whole body as I think I'd feel better knowing. I have vitamin D issues, so I need to keep up the supplements and attempt to sit in the sun for long enough to get vit D but not long enough to get hives. Sorry, whinge whinge whinge!

hi everyone, hope you are all doing well.

I've had an awful day, I went to the doctor and cried, I couldn't explain to him why I was so upset as my 2 yr old dd was whinging and crying and trying to play destroy with my phone...
I'm still not sure if I actually achieved anything!

I'm moving next week and will have to go through the whole thing again with another doctor, I'm fed up with being fobbed off and given stronger painkillers, I will be taking tramadol for ever it seems and I can't carry on like this any longer.
I fucking hate it so much, I'm not normal enough to do anything like get a job or go for a walk or do the housework without crying in pain and having to lay down after, yet I'm not disabled enough to get DLA or any bloody help with anything. It bloody sucks :( I hate my life

Went to see the GP today; not because I was feeling rough but because I have excema (sp) in my ears, if I could scratch them with a cheese grater I would.

He took one look at me took my temp (39.something) had a look in my ears & I have a major infection

Co-amoxiclav(7 days), ear drops, an ear swob & a possible consultant appt depending on the results later

Of course now I have a diagnosis I have collapsed in on myself and retired to bed (I really do feel awful)

Oh gallifrey :( sorry you're having such a crap time. Hopefully your new doctor will be really good (and don't be afraid to switch if they aren't). Hugs and spoons to you xx

Crash can you get vitamin d injections instead? I've heard you can get them if deficient.

Argh I wrote another post last night but iPad died. Sorry about the ear infection Katy, they suck and oh god the itchiness! It's always too far in to scratch. I have even been known to attack it with a cotton bud dipped in boiled water

I often use a hot (using recently boiled water) flannel as a compress on my ear when it hurts, especially at night when I lie on it. My mum puts lavender oil on it too.

Solo, typed a long message to you yesterday which vanished! Not happy.

Anyway, I worked in the NHS which may be similar . The long term sickness policy was led by HR and Occ Health were asked for their opinion on fitness to work, any adaptations to hours or environment than may help.

Occ Health did this and HR made the decisions.

I was dismissed after 11 months. After25 years with a totally exemplary record. Not one word of thanks or good wishes. Bitter? Yes.

Now, at 47, I cannot work but have been advised not to apply for ill health retirement until I have exhausted every possible treatment avenue. It's ridiculous as its perfectly evident I will not be fit for work as a midwife again. I have a blue badge for gods sake! My neurosurgeon has told me that chronic pain management is my only option.

In the NHS the ill health retirement applications are assessed by ASOS and they are not minded to oblige. I am psyching myself for a fight.

Has anyone here been through the ill health retirement thing? I'd love to hear from you.

Hope that helps.

Thanks Matilda our OH is ATOS too. Ah well :(

The heat is not mixing very well with my super low blood pressure, I've been extremely ill the last couple of nights after my commute home.

Crash, I have a vitamin d deficiency. My consultant has told me to take supplements (but not with calcium because of the problems caused with build up) and to get a bit of sunshine. I've found that holland & barrett is the best place to get them from because they do lots of different types / strengths etc.

Wish you better KatyMac and sorry to both neri and gallifrey who are having a tough time. Hope it's cooler where you are today fuzz? It's quite humid here but not as bad.

Thanks for the tips of different types of vitamin D. My GP won't agree to the injections because of cost and to be honest, the calcichew tablets are fine, I just need to remember to actually take them!

I'm feeling quite down at the moment. I have this urge to be on my own all the time. The pain is draining me and the more painkillers I take, the less able I am to motivate myself as I'm so sluggish. I have a party to go to tonight and all I'm thinking is "I look fat and ugly" and "I hope there are enough seats so I can sit down". I'm not going with friends, I'm taking my own car so I can come home when I want but I don't even want to go. I'm 25, yet I'd rather be at home in my pjs on a Saturday night than hang out with my friends.

Feel as if I have been hit, hard across my lower back with a cricket bat. Seems my hopes for the recent nerve block I had we're a bit premature.

Codeine it is. Hope it doesn't progress to a tramadol day. Of course have already had my naproxen and gabapentin. Hate all these drugs.

Hope others are faring better.x

Were, not we're. iPad.

Matilda that sounds very painful. Have you just had the nerve block? I Know what you mean though with the cricket bat/ kicked by a horse analogy.The mix of Tens and pilates has eased my minor upper back lock up so breathing is much more comfortable, thanks for your advice. I will see the chiropractor next week so hopefully should help further. My lower back troubles always set off the upper back. The CFS works against it all.
Fuzz I too cannot just ask for more hours, but would have to apply for an advertised post with the extra hours to add to mine. However in a better patch I do sometimes cover for others, which has the advantage of being able to say yes or no depending on how I feel. But that is for the future, once you are feeling more well.
Crashdoll I use an under tongue vit D spray. It's expensive ( for the higher dose) but I remember it better (keep it by the tea jar so easy to grab whilst brewing) than the chews from the hospital. ( my gp will not prescribe them - only the hospital when in on steroids for my breathing). I always get long flare ups of joints and back after coming off short course of high dose steroids for my lungs. I hope not being able to have steroids gets the doctors to look harder for a safe but effective treatment for you.

New poster on this thread. I have chronic pain in my lower back.

Today's dilemma is the coming weekend when there's a family wedding and I don't think I can handle all the activities planned, but there's a lot of pressure on me to. I don't know whether to just "suck it up".