HELP!!

Hi all, I visited my OT yesterday. For months now Ive been secretly feeling really low. So yesterday on my visit to the OT when she said how are you feeling and getting on day to day, I just exploded in tears. Poor woman she had to listen for an hour to me blubbering away. I dont know why I started but I do know Ive been getting really fed up off the pain etc lately.

She asked me how I was managing with work, so I explained that lately I seem to have had a lot off time off with flares, pain and somedays I get up but by the time I am washed dressed and fed I am too fatiuged to get to work, her solution to this "can I send some carers in to help you wash and dress etc?"

I nearly dropped on the spot, I never thought I would need carers at 33!

Does anyone else have care?

I do already get so much help from friends and family as it is.

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fibro... was wondering were you had got to was getting concerned... summer here, thought you must be poorly poorly..

and i had worked out that you must be v poorly from some of our correspondence, not least from my last attempted message of support.. i am better on the phone or face to face.. am so sorry to hear, what you were told. People under estimate the depression, isolation.. that we can feel... though this site helps fix this..., we have pride to we dont want to admit defeat,, I don!and I know you are such a strong capable person, you feel the same.. it is a cruel disease,, health professionals, im refering to the rheum dep!! here some times fail to look at the whole person it makes sad and mad!!, have tears in my eyes typing this I do know how you feel as do all the people on the site, we are all here for you, If you can swallow your pride and take the help you will be able to claim some form of disablitiy allowance.

Iwas diagnosed at 44 , but looking back I had symptoms in my late 20s early 30s, much more mild ignored them...., went to dr with first bad symptoms at 41.. took a while to get through the system...

O t s can be so good mine organised hand rails and door grab rail to be fitted within days of seeing her!. unlike my well meaning occupational health nurse who suggested I get a commode.

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Oh Julie. You shouldn't be depressed in secret! You should always blubber at someone. I know you feel like you are giving into "it" or giving up, but you have such a lot on your plate, you are entitled to feel crap when you are in constant pain, can't sleep and all the other stuff. I know because I tried that one! I eventually gave into it all and told my doctor, my rheummy nurse and anyone else who stood still... I got myself the anti-depressants and have not looked back. You can't do it all on your own. I know you say you alreayd have a lot of help, because you need it, but it's not all about the help you need phsyically, you need emotion support too. I was talking to someone the other day who reckons that RA have a type of personality, see my blog, which I am going to do today. You get it off you chest, if you don;t the stress will only make it doubly hard for your body to help itself. Take care. and keep posting chick Julie x

[juliep]

I have been very newly diagnosed and i have a son who has cerebral palsy. Im really struggling to do all his care at the moment and as a single parent of 4 children need all the help i can get. I have a great lady helping me at the moment to try and get some help for my sons care. Its really silly things like not being able to put his socks on him. It seems so daft sometimes. I do think people dont understand this condition at all. I wasnt expecting it to progress so quickly and the tiredness is not something i was expecting. I was never in bed before midnight before but i have a rest in the daytime and im in bed by 9.30/10 every night now. Take what ever help there is out there and also if you have people to talk to do it. I dont have anyone apart from my kids and i dont want to burden them with it but its not good to keep it to yourself if you can help it. Good luck. Jules xx

[emandedmum]

Hi sorry to hear you're not so good at the mo, it's just crap isn't it being young and having RA isn't it?! I understand fully how you feel. I however didn't have a 'job' to go to but did have two small children that I couldn't look after myself. I too failed to do nappies and baby socks and trousers - all the silly things like making up bottles and bathing them - even cuddling them - were so hard!

When I was really ill in the beginning I too was offered help like you but turned it down...I was 30 and adament I didn't need anyone else to help me wash and dry my hair and go to the loo! Maybe that's what kept me going, I don't know. I also felt that having lots of adaptions around the house might worry my children even more - apart from lever taps and at the time a bath lift I refused anything else. The thing is if you can't manage and there is help on offer why the hell not take it?! It isn't degrading and if it means you can get out and about and off to work more refreshed then I'd go for it...if it gets to the point where I need help then I will say yes.

I'm glad to hear you have lots of support but please don't keep your feelings bottled up as it will only make the physical effects of RA worse! We're all here to listen and help as best we can from a distance xx

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Julie, I'm so sorry to read that you're feeling so low at the moment. Please open the flood gates on here whenever you need to. Between us all, we can provide a listening ear and might have some ideas of things that can help. Even if we don't, it always feels good just to let the feelings out.

I'm still so grateful to you for recommending the electric heat pads and wax hand bath. They made my days a bit easier to bear.

Hope you have a better weekend.

Ann

x

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Hi Julie, when I was extremely ill after having my son I too had to resort to home help, there's no shame in it. It's there for a reason it can help you get through a really tough time, which is what your having at the moment.

I however, used it for housework and my hubby or sister would be there to help me wash and dress and look after my son. seeing someone else in your home doing things that you would normally do will give you the courage and strength to get in a better shape to do it yourself.concentrate on you at the moment and do whatever you have to feel better.

I only had the help once for a few months but I don't regret it as it helped me to put any time and energy I did have into my son,and I'm not ashamed to admit it neither. I've probably got to be a stronger person because of it (if you see what i mean)

You will get there

take care

mand xx