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Spooning into summer - life with chronic pain & fatigue.

999 replies

Grockle · 14/07/2013 07:58

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/

OP posts:
yegodsandlittlefishes · 05/08/2013 11:48

It's almost true, fablatte, if it's anything like when my DH says it. Roughly translated to true meaning:'they're only reacting like small children, and that's what I feel like doing but I'm a grown man and I don't have that excuse'!
My DH is currently sporting a comedy holiday mustache which makes him look like something from a WWI film. At least we now have something else to talk about apart from how rubbish I feel, how limited life is and how rubbish the weather is.

gallifrey · 05/08/2013 12:00

Hi everyone!

I've been in tears all weekend more or less, my dh told me that I spend too much time on my phone and laptop and not with my 2 children. Its true, I do :( but I have such little energy it's all I can really do. Even just going to the park is such an effort. I have been using my wheelchair more and more as I just can't walk anywhere without being in terrible pain. The other day I braved Tesco and managed to walk round but by the time I got back to the car I was in agony. Then when I got home I couldn't even make dinner I was so fatigued. I went round Ikea yesterday in my chair and it was so nice to get home and still have the energy to do stuff! For some reason my legs are really bad but my arms not so much except for washing my hair or hanging out the washing. I seem to be able to wheel my chair ok, and at least it's a bit of exercise!!

I have moved so have registered with a new doctor, it will be interesting to see what they say, I can't imagine being like this for ever.

Matildathecat · 05/08/2013 12:44

Morning all. Not feeling too bad here even after a night out at a restaurant on Saturday, so long time sitting.

Several people finding housework a problem today, am I allowed to recommend a product? It called GTech SW20. It's a cross between a traditional carpet sweeper and vacuum. Rechargeable battery so no cord and as light as a feather. I can easily manage to so the whole ground floor myself and it does both hard floors and carpet. Sad to say I love it!

www.amazon.co.uk/gp/product/B005RPPMHY/ref=oh_details_o04_s00_i00?ie=UTF8&psc=1

Having a go at reducing my gabapentin today. I'm so sick of feeling doped. Wish me luck..

Really hope your days improve. I am lucky that my dc are grown up. Means I spend a lot of time alone, though. Oh to be my old self.

magso · 05/08/2013 12:55

I tend to think in terms of getting slowly better- which I have come to accept is a combination of getting more well and adapting to the new slightly less able me.
Gallifrey well done for getting around Ikea! I need to get something but am not sure I have the energy ( especially with the drive as well)! My arms tire very fast but my legs are improving. I can walk quite well now before the 'drunk legs' appear. Driving ( especially with ds in the car) I find exhausting.
Small children need such energetic care to interact well. Thankfully ds is older and his needs are more noticing and encouraging, rather than the eyes in the back of the head that small ones need all the time.

crikeybill · 05/08/2013 12:58

Hello everyone can I join. I desperately need some perspective.
My Dh has m.e/CFS and has got worse over the last 3 years or so. He hasn't worked since being made redundant 10 years ago due to ill health. I work full time and we have three kids.
We've just had the most almighty row, it's been bad for a few months now and the house is a horrible place to live ATM.
He feels I am not sympathetic. I feel that he doesn't help himself and yes I do get frustrated.
Its exploded today because yet again he's let us down on plans and yet again stayed up till 3am watching t,v.. So this on my week off I'm yet again up and dresses and looking after the kids alone. He got up at ten, went to the bathroom, I said good morning and he ignored me and went back to bed. I exploded. I did slam things around I admit. He came down stairs was angry at me and we have just rowed and rowed.
He told me he felt ill and exhausted so needed to sleep, my point was a bit of common courtesy would be to say that. He said he felt too sick to talk !!! Why stay up all night ? He says he can't sleep. I'm so frustrated. It feels like I'm left to do everything. I work, I take the kids to school I take the baby to the childminders and its getting too much. Everytime I say something he just says I'm not sympathetic, how I have it easy because I have me health.
We are in a bad bad way. I feel like I have nothing left to give and this isn't the life I signed up for. He is supposed to have an appointment this afternoon at the CFS clinic but is threatening to cancel as he feels ill. I feel so frustrated.
What can I do ? Am I in the wrong ?
I'm so unhappy--

magso · 05/08/2013 13:01

Sorry crossposted Matilda. I love my stick vacuum for the same reasons. Light, rechargeable and does the job. Its a bit heavy (for weak me) to use as a duster but OK for little clean ups. It a pain when it jams up but DH is good at unjamming it. It was very costly but so useful.

magso · 05/08/2013 13:35

Crikey I am so sorry you have had a row and are both upset. I am sure my husband feels similar to you at times and I can certainly understand how you must feel having to take responsibility for almost everything. It must be lonely and exhausting. Having ME myself (and a few other bits and pieces) I can understand your DH too. The not sleeping and waking up exhausted is very frustrating. But its sometimes better to watch TV or read (if you have the energy) than lie awake tossing and turning (because of pain) and upsetting your partners sleep into the bargain. I am not at my best in the mornings,( being rather zombie-ish for the first hour or so) and it sounds like your DH is the same. When DH has a go at me it helps for me to realise the real bogyman here is the ME - not me.

I feel I must do all I can to get as well as I can - for all our sakes and that included getting to appointments. However trying to do too much ( and that may be very little) is counterproductive. It sounds like you are both suffering from the effects of ME on your family. I suspect once tempers have calmed down and egos recovered you need to try and be kind to one another and sit down and talk about it. DH needs to try to get to his appointment(or anything else that is helpful) if he possibly can ( and he may be truly too unwell to get there without help)- could you take him? One of the first steps to recovery is finding time to have fun and enjoy life - and feeling guilty and upset about what he can't do is unhelpful. Hopefully the CFS clinic will help him learn what he can do and help him learn to pace effectively.
Hope I don't sound too bossy. Lots of us will feel your pain and your husbands.

fuzzpig · 05/08/2013 13:44

Hi all. Haven't caught up with this in ages so just remarking my place. Had an appt with an occupational therapist at st barts today, went really well. Off to work now but will tell more this evening all tomorrow.

Spoonage to all xx

magso · 05/08/2013 13:49

Of Fuzz wondered where you were. Appointments and work all in one day - better send lots of spoons your way!

raggedymum · 05/08/2013 14:36

Oh, I so sympathise with messy house problems. I actually have a Roomba that hoovers for me, which is the only way it gets done. I bought it some 5-6 years ago, and it was way worth it. I wish there was one that could wash bathrooms as well. And do laundry. Seriously, I need that robot from the Jetsons. I have a horrible catch-22 in that I tend to get colds if the cleaning hasn't been done, but I can also wear myself out doing the cleaning. But that is less problematic than being sick for weeks; at times I've lost entire seasons to one cold. Deciding to take it easy in preparation for a hard work week like I did yesterday is rolling the dice.

crikey, I understand your situation from both sides: my DH has had ME since I've known him, and goes through good/bad spells. And I'm struggling with my own issues right now. DH sometimes gets cross with me for 'ruining' plans when I'm too tired to do things, and I sometimes get cross with him for doing what I see as 'wasting' energy on less important things (like how he can be up late designing model train layouts and yet somehow can't manage to scrape DD's uneaten food into the compost bin and leaves me to do it when I get home from work).

One thing to keep in mind is that the fatigue is NOT logical. For some reason unbeknownst to me, one trip to a store, even if it is only 15 minutes, is just as exhausting as an afternoon hiking. Taking the day off work except for a single 30 minute Skype meeting will leave me almost as exhausted as if I'd gone in for an 8-hour day. It makes no sense.

Like magso says, you two probably need to have a sit down and try to understand each other. Ask him to tell you what his limits are, and see if you can figure out things that he can do within those. You probably need to set up some method of communication such that he can let you know if he's gone past his limit and isn't going to be able to do things he planned to. Sometimes my DH sometimes literally can't make words, and I know if I talk to him and he mumbles back, that it means to throw the day's plans out the window.

One of the things that I had to learn from DH when my fatigue issues started was that it is counterproductive to put all my energy into what I thought was 'most important', meaning things I found enjoyable simply fell away because I couldn't justify to myself spending energy to, for example, work on my crafts when I didn't have enough energy to clean the kitchen. It sounds like you might be having a little of my mindset there. Even with less energy, one still deserves a full life, so it can't always be the 'unfun' things that get done.

Your happiness is important too, and your DH also needs to realise that he has to save some spoons to work on your relationship. It can't all be from your side. Have you read the spoon theory? Has he? It might do to use it to open a conversation by showing it to him and asking if that is what it is like for him.

gallifrey · 05/08/2013 14:43

I tend to wear myself out doing housework and getting stressed about it, then I have no energy to do anything else like take the dcs out!

I would love to have a cleaner :)

On a brighter note, I feel ok this morning :) I'm sure it's because I used my wheelchair yesterday to go round Ikea, if I had tried to walk round I would be suffering today for sure. I have decided to stop taking tramadol for the moment and start taking cocodamol 30/500 instead again (mainly because I'm running out of tramadol but have loads of cocodamol!) Already I don't feel as lethargic today!

Grockle · 05/08/2013 14:49

Hi everyone. i've tried to catch up on the thread but its taking me a while - I'll do it properly later.

I just wanted to respond to crikey... I can see both sides of this. I split up with my ex in January, because of his mental health (was messy because I was too stupid to just let him go but thats a whole other story). One of my key issues wasn't his depression but the fact that he flatly refused to help himself. After 3 years, it because too much - I cannot help & support someone who won't help themselves, who constantly finds reasons and excuses to not do anything at all.

BUT, I have fibro, lupus & now suspected ME too. I have days when I feel so utterly ill, I cannot speak. It makes me vomit. I do my very best to communicate though - despite me constantly explaining how I feel, if I don't say it aloud then I can't expect people to know or to understand. I have terrible insomnia that leaves me awake all night for days or weeks on end but I don't sit up watching telly & I certainly don't lie in bed all the following day - I can't, I'm a lone parent with a job. I still have to get up & get through the day unless I am bedbound through pain & fatigue.

I do understand how frustrating it is for you with your DH. I don't really know what to advise but it sounds as though he needs to make some sort of good will gesture, at least... get up with the children, help you out then maybe go back to bed. Or at speak to you. Being chronically ill is horrible but you have to learn to manage it & its impact on those around you. IMHO. Pot. Kettle...

OP posts:
Coro · 06/08/2013 08:23

Hi, I'm rubbish at keeping up with the thread but I appreciate knowing it is there.

Solo · 06/08/2013 16:32

Just keeping my place on the thread.

Matildathecat · 06/08/2013 18:08

Bad pain. That's all. Big sigh.

candycoatedwaterdrops · 06/08/2013 18:29

Pity party for one. Blush

Things are really crap. We're still waiting for my local PCT to approve the anti-TNF treatment. In the meantime, I've caved and agreed to a short course of high dose steroids. It makes me go crazy but I'm trading my stable mental health for a few weeks reprieve from this bastarding condition.

My clinic were horrified when they examined me - have never seen my joints so inflamed with such limited movement. In a way, it's good for them to see me like this because I often hide away in a flare up and they don't see me. That said, I'm not sure you can call my current problems a flare up as that implies I might flare down and I fucking haven't. Angry My OT felt I was unsafe on one stick, so now I'm hobbling about on two - although I have ergonomic handled ones so overall, I am putting less pressure on my poor hands but still, using two is such a faff.

I feel sick and exhausted and tearful all the time. Even before I was diagnosed and put on medication, I wasn't this bad. It's not good that I'm taking 2 very toxic drugs (and about to add a 3rd) but I'm still in this state....ugh! Sad

magso · 06/08/2013 18:57

hope the short high dose steroid course damps down your mega flare up Candy, and you are soon feeling better. Short courses have far fewer side effects than long term use ( I often have them for my dodgy lungs), and the PCT hurry up and fund the anti TNFs.

BeyondTheLimitsOfAcceptability · 07/08/2013 17:26

Can hardly type, arms fel like theyre made of lead :( had depo jab earlier and it has cause a huge flwre up and i can barely move :( :(

DH is at the end if his patience with my health and so am feelinf extra soecially shit

belleshell · 07/08/2013 19:44

beyond and candy, wish I had spoons to send...... I hope some come your way soon,...

candycoatedwaterdrops · 07/08/2013 19:53

My consultant had a shit fit and said I couldn't have the oral steroids because of my reaction last time and because of my osteopenia. Fortunately, I hadn't picked up the prescription yet. I got a 120mg jab of prednisolone depo instead. I'm praying for less swelling or even just to be able to put my feet fully down on the ground, I'm walking on my heels FFS! Sad

candycoatedwaterdrops · 07/08/2013 19:54

If I could share some spoons, I promise I would. Thanks for all.

CFSKate · 07/08/2013 21:51

new website for the UK drug trial for ME, explains everything
www.ukrituximabtrial.org/

BeyondTheLimitsOfAcceptability · 08/08/2013 10:33

Well, depo not had its effect yet, but at least I can move again :)

Am determined to get any help I can now though, trying to struggle through, carry on as "normal" and leave DH to do everything is just wearing down our relationship. And while he's been off sick (depression), I've completely taken the piss, unintentionally of course, but we cant carry on like this. So, first things first, ring up for another dla/pip application form :)

candycoatedwaterdrops · 09/08/2013 09:51

Beyond Was it a steroid depo? I had one on Wednesday morning and I've already got some relief. Fingers crossed for you. :)

belleshell · 09/08/2013 14:03

hope we are quiet cos every one is busy doing nice things and not suffering, thank god its Friday!!! is all I can say

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