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Spooning into summer - life with chronic pain & fatigue.

(1000 Posts)
Grockle Sun 14-Jul-13 07:58:50

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 http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

frugalfuzzpig Mon 20-Jan-14 11:27:33

Hi all. Sorry I haven't been around for ages. Just been trying not to think about being ill! blush

Things are a bit better lately though. Reducing my hours has had a huge impact. I now do three 4hr shifts a week, spaced out so I never do two days in a row. DH still only got casual work and trying to find something better, but we've agreed it won't be FT (unless it's something really spectacular) as I wouldn't be able to manage.

I've also nearly got to the end of therapy at St Bart's, which has been quite helpful. I'm managing my time and symptoms a lot better and I'm starting to be able to contribute a bit more at home too, with stuff like cooking.

Amazingly I haven't had a relapse for a while now, just the odd crash day which thankfully is over quite quickly. I haven't had any bugs for ages either - most likely because I'm no longer overdoing it at work and therefore not working with germy customers as much and also dosing myself up with vitamins.

Still feels like a long road ahead though, so I'm trying to just concentrate on the present.

Spoons all round xxx

raggedymum Mon 20-Jan-14 11:37:24

Sorry to hear you are struggling, giraffes.

Welcome supercosy. Just read your other thread. I, too, used to be very athletic -- I was a gymnastic and as adult did martial arts. My brain is still stuck in the 'can do' person I was before, and sometimes it is very difficult to accept that I 'can't do'. Actually being told I had CFS has helped somewhat -- I am able to attribute my difficulties to a disease, rather than a weakness of character, which was my tendancy before.

I struggled through work last week, ending up putting my head down on my desk a few times and being vastly inefficient sad We have, however, gotten some good news which means our financial situation may improve for the better soon -- our old home has finally had an offer put on it! If we're not paying two mortgages, a cleaner will be well within our budget. Fingers crossed for everything working out.

raggedymum Mon 20-Jan-14 11:39:38

Xpost fuzzpig. Good to hear from you. Very encouraging to hear that things are somewhat better for you -- it gives me hope!

Matildathecat Mon 20-Jan-14 11:40:06

beyond, sorry to be impertinent but may I ask you about your PIP? I'm going to send my application later today. Bloody hell, what a massive task it's been just filling it in. How long has each stage taken and do they have timescales they have to stick to? Seems like it would be fair when they give you such strict timescales to fill in the form!confused. I haven't spoken to anyone who has been through this only DLA which was different.

Thanks. Hope you're ok.

I can give you timescales of how long its taken mine, but i hope theyre improving as time goes on...

I requested the form end of july, it came beginning of august. Worrying about the stupid form made me more ill and i didnt get it sent off in time, so decided I wouldnt worry about it now and didnt send it at all. Middle of sept i had a letter for my appointment in october at home. Apparently its quite common for them to do so even without the paperwork. Dh booked time off work so i didnt have to be on my own.

October appointment no showed. Rang to rearrange, appointment made for november at home. Dh booked time off again. November appointment no showed. Rang to rearrange again, appointment made for beginning of December in office. Dh couldnt take off any more time so my mum went with me. Took the paperwork with me then and had my assessment (no parking and didnt have my blue badge yet, so in tears from walking by the time we got there).

Assessment nurse was lovely actually, the least stressful bit of the whole thing smile she told me to post the paperwork after the appt. and now, end of january, I am yet to have a response (she did say about six weeks though, so taking xmas/new year out, its due pretty much now)

<sigh>

magso Mon 20-Jan-14 13:12:53

Nice to hear you are doing somewhat better Fuzzpig, since you cut your hours, and that the Barts course has been helpful. My sessions with the local CFS team were helpful too - I think in helping me accept I was ill (not lazy/stupid for overdoing it/letting down my family etc), and getting me to pace in a way that recognises where my energy was going- before keeling over/ getting drunk legs and speech/ having to spend the next few days in bed. I still only work 1-1.5 days a week, which is all I can do without relapse ( and the extra half day I can't keep up for long without a break).
Hope you get a positive PIP reply soon, Beyond, and that your old house sale through at last Raggedy. Pred is jolly good stuff for lungs but hopeless for sleep, Giraffes. Hope you are only needing a very short course and your ribs are able to mend with all that coughing! Good luck Matilda in getting your forms off - and approved or whatever the phrase is.

giraffesCantMakeResolutions Mon 20-Jan-14 20:13:05

I did OU last year and found them tremendously supportive.

I am at Leeds met this year doing my post grad. B&B is so necessary to be able to rest. Oh yes beyond you will love a cleaner! Mine is £20 a week. And I tend to pay for it by doing a wee bit extra babysitting during the week, usually when the kids are in bed type of thing, so not much effort for me to do but means the cleaning is paid for!

Grockle Mon 20-Jan-14 21:05:34

Great news, raggedy. And fuzz, I'm so glad you are feeling so much better.

frugalfuzzpig Wed 22-Jan-14 10:25:02

Thanks thanks

Spoke too soon though. Chest infection angry sad

Matildathecat Wed 22-Jan-14 17:27:41

beyond, thanks very much for your reply. I can't believe they sent the appt without the forms! They really are a law unto themselves. I think it's just a ruse to screen people out so only the most persistent and literate people who know other people who know how to respond to their stupid questions even have the slightest chance of success.

I do hope you hear soon. I am resigning myself to a long wait. My ESA application has been with ATOS for ten months.sad.

My cleaner is wonderful. I'd prefer to give up almost anything else rather than her. She even puts my bedding in the wash after changing the bed...

Also, they just didn't turn up twice!! That's unbelievably rude. ATOS must have very flexible guidelines for their staff.

Wishing you all many spoons before bowing out to my Back Story thread. All comers welcome.

worriedabout Wed 22-Jan-14 23:04:32

Can I join? I need a bit of hand holding. I have been ill for quite short period of time - 6 weeks in total. It started as an acute illness and I was in hospital just before Christmas. since then I have had headaches with pins and needles down my face, intense burning sensation in my right knee and exhausted so easily.

My GP has requested a couple of blood tests but I am sure she thinks I am a malingerer. I am waiting for the results which apparently take 3 weeks to come back. I am really scared because if there is nothing wrong then it gives my gp a legitimate reason to give me diagnosis of cfs which then means she gets to give up trying really easily.

I feel I have been given up on really easily and it is making me feel really depressed.

Grockle Wed 22-Jan-14 23:58:26

Hi worriedabout, sorry you aren't feeling good. You don't have shingles, do you? Your description sounds a lot like my symptoms when I had it.

magso Thu 23-Jan-14 10:24:50

Worried, sorry you are unwell. I too feared a dx of CFS. I think you have to be ill for at least 3 months (used to 6 months so this is still used widely) before CFS can be diagnosed. Hopefully the blood tests will help show some light on things - if only to rule out certain conditions. If the tests come back all within normal range it does not mean nothing is wrong, only that those tests were not positive. Effectively the wrong questions were asked of the blood tests. Sometimes different or more specific blood tests will be needed, or referral to a specialist - such as rheumatology if your knee is swollen. I was told for every day you spend in hospital with acute illness expect to take a month to recover - so if you were in hospital for 7 days, expect 7 months to slowly recover.
I hope you get some answers soon. However it can be a slow process to get to the bottom of things if illness is persistent.

I've been discharge from cardiology, with a confirmation that my heart is working fine and can cope with the tachycardia imposed on it by the CFS. So next to try and sort out my dodgy back as my sleep is being very much disturbed by it!! 1 step at a time .

worriedabout Thu 23-Jan-14 10:40:47

I don't think it's shingles. The way it started was with a headache and it felt that there was pressure from outside on both sides of my face and in my temples. I couldn't keep my eyes open.

Grockle Thu 23-Jan-14 19:39:53

Magso, I have tachycardia too but no cause (other than CFS/ lupus/ fibro?)

Worried, I hope you get some reassuring news soon & feel a bit brighter.

candycoatedwaterdrops Sun 26-Jan-14 18:39:48

Evening all. Sorry I've not been around. flowers for you lovely people.

My Rheumatoid is very, very quiet thanks to 5 months of anti TNF therapy. Unfortunately, as I have found, the treatment can be worse than the disease itself. I am vomiting most days with terrible upper stomach pain. I've had lots of investigations and they feel it's the anti TNF injections which is gutting. I'm waiting for my rheumatologist to agree to me taking a long break to get the drug out of my system. Frustratingly, you can develop antibodies to the drug, so it may be tricky. There also may be a funding issue if I take too long a break.

I'm not going to lie, it feels really fucking unfair that for the first time in 4.5 years, I am in very little pain, yet feel so very ill. sad I actually had a better quality of life with severely active RA!

CFSKate Sun 26-Jan-14 21:32:06
giraffesCantMakeResolutions Mon 27-Jan-14 04:36:41

frugal sorry to read about chest infection, I have one too. sad How are you doing? You on anuthing for it?

Hi worried it is realy horribly when you know something is wrong but don't have a proper name or idea about what it is

I am often tacchy - not sure why. Some of it now is to do with asthma meds. Also my oxygen drops when heart rate falls.

candy oh that does sound uttery frustrating and unfair sad

grockywocky wink hope you are doing ok after HT meeting xx

giraffesCantMakeResolutions Mon 27-Jan-14 04:42:11

So I was away all weekend at uni - am doing a post grad as well as working full time. It is utterly exhausting. i would have found it hard anyway but I have had a chest infection for about 11ish days now -on antibiotics - 2nd course back to back, 2nd course of high dose steroids, cocodamol for pain in ribs and all the usual asthma meds.

I had a horrid experience on the Friday night being away in the B&B for uni with a chest infection and my breathing was really crap. This is what I posted else where the morning after about what happened -

I have said this before but sometimes when I feel really ill my fight or flight reaction seems to be to just curl up in a ball?!

I am not normally such a mess, I think being on steroids for so long and so little sleep, low o2, being away from home and not sure of how things work here - as although not THAT far the OOH system is very different.

I saw a fantastic Dr who really trusted me and my knowledge of my condition - we had a good chat once I had had some meds pushed through with o2 - sometimes this works better for me, especially atrovent. And even though I did burst in to tears at once point and say "I just dont FEEL WELL!" he treated me with respect and listened. Have a temp, lungs still wheezy.

We discussed options which were - to come in he was happy to admit me but was 16 people infront of me waiting to be seen. (I actually was seen at the OOH dr bit which is attached to A&E, as NHS24 sent me there) So likelyhood would have spent the night on a trolley with a load of drunks around! Or he said would put in that if I need another load of meds pushed through I can phone and come in, and same with the hospial I am at for course, said he will put on form I can go there for one too. He was very keen to put things in place to support me if I wanted to stay out hosp.

If I had been a one off person attending like this would have been admitted for sure but he could see from records that I am usually sesible and can manage condition (apart from when in tears like last night!!) Staying on high dose steroids, increased nebs, extended dose of antibiotics.

Oh and the NHS24 woman put on the referral that i was abusive! The Dr did raise his eyebrows at that and was mildly amused. Apparently i was abusive as I said that No i was NOT going to take my inhaler as I had already had a high dose of nebbed ventolin so why would I use an inhaler for a tiny dose?! Also I argued with her that I DO NOT have labyrinthitis - I don't! I had it years ago and it seems to pop on their screen!

magso Mon 27-Jan-14 08:15:34

Giraffes sorry your chest infection is still making you so ill. Its horrid being ill away from home. Hope you remain well enough to not need admission. Good the dr was understanding and treated you respectfully.

magso Mon 27-Jan-14 10:25:51

How awful - and very unfair- Candy! The last thing you need is to be fighting funding issues.

frugalfuzzpig Mon 27-Jan-14 11:07:15

Hey giraffes, yes I'm on antibiotics. The chesty bit has been pretty bearable as I started taking them quickly. But I have ended up with flu like symptoms. Shakes/sweating, more pain, unable to stay awake or have lights on etc.

Haven't been nearly so bad since summer 2012 which was what kicked off my first CFS flare up (which was itself caused by a long running chest infection) sad so I'm feeling quite scared right now.

What a waste of a week's annual leave angry I'm due back to work at 3 today and dreading it. I don't feel well enough but it's going to look really dodgy if I don't go in. So frustrating as I haven't had any time off for months, since I started my most reduced hours. I really hope I've not just slipped back 18 months sad

I hope you recover soon x

Grockle Mon 27-Jan-14 19:25:55

What a nightmare graffeywaffey wink

NHS24 person sounds like a cow. Glad you saw a good dr - hope you are ok today x

Fuzz, why are you on antibs? Must have missed a post. Hope you are ok too.

Love and spoons to you al.

I've been in bed since 5.30 sad

giraffesCantMakeResolutions Mon 27-Jan-14 20:05:01

grocky fuzzy has a chest infection...same as me. see all the cool kids have one wink

Oh no - how are you feeling? (Ok sorry that is a silly question, I guess I mean what is wrong? - ache/pain/tired/all of the above?) Hope you can rest.

I have just got in to my bed. Am feeling really tired but was lovely to come home to my house all clean from my cleaner smile Going to try weaning off the steroids tomorrow! Finger crossed!

Getting really stressed about court, they keep messing me about with the date to be a witness.

CFSKate Tue 28-Jan-14 08:41:24

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