Date: 25.09.2012
From: Kim
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Subject: trying to be normal
Hi everyone
Hope people arent too bad at the moment? I have been trying to do "normal" things the last couple of weeks. My youngest has just started school and now the lovely government have stopped my esa payments I thought I should volunteer at my kids school to see how I could cope physically. Well its resulted in increasing my steroids up to the max, no sleep beacuse of the pain and now have lost feeling in one hand! Im trying to keep positive but finding it so tough. Just want to sit and cry as in my mind I feel I can still do everything yet my body wont let me. Every day is a challenge just getting my kids up and reeady and to school and tomorrow Iv somehow got to take my sons bike in so not sure how im going to lift that.
I think tomorrow is going to be a day on the sofa. Has anyone got any tips for taking your mind off the pain?
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Date: 25.09.2012
From: bsk
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Subject: Re: trying to be normal
Hi Kim, I started a thread somewhere about what to do if you are stuck at home (and prob in pain), see if I can bump it up for you. xx
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Date: 25.09.2012
From: rhona
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Subject: Re: trying to be normal
Hi Kim, it's not nice having constant pain and i feel the same way that my mind wants to do things and my body won't allow it, it is so frustrating. perhaps you should speak to your doctor, especially with you hand being numb. I worry about things in advance as well, is there someone that you could ask to lift your sons bike? Have a look at the thread that bsk bumped up and hopefully you can get some ideas. Hope you feel better soon.x
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Date: 26.09.2012
From: Lynnr
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Subject: Re: trying to be normal
Hi Kim I feel for you it's not nice being in this pain on good days we end up doing too much then that results in us being laid up for days what age r your kids I have an 8 year old and 2 7 year old twins and like you struggle in the mornings getting them out to school is there no one you can ask to help you with the bike? I like rhona think you should maybe call your doctor he might be able to increase your pain meds and look into the numbness.
Take care
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Date: 26.09.2012
From: Kim
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Subject: Re: trying to be normal
Hi everyone
Thanks for your replies. My hubby put the bike in the car and I got help getting it out so it wasn't too bad in the end. My kids are 4 and 6 years old so both now at school full time so at least Im able to rest during the day now.
Iv been trying to contact my rheumatologist for over two weeks now, I want to talk to him about my meds and also want another referral to O.T so I can get some new splints for my arms but his secretary is on annual leave and if I go through my gp then I have to wait for appointment to see him, Im due to see him end of October anyway.
I dont know about other people but sometimes when pain is bad I like to try and keep myself as busy as I can as its when im sitting still and trying to rest the pain levels go through the roof!
My goodness Lynn having an 8 year old and twins!You must be exhausted?
Iv come to the conclusion that my health has to come first and that we will just have to somehow manage on my hubbys money for now to take some of the stress away from me on worrying about having to find a job.
Take care xx
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Date: 27.09.2012
From: bsk
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Subject: Re: trying to be normal
Hi Kim, In my borough we self-refer to OT. Can't you do that? We also have personal budgets from social services. If you are bad enough they will assess you and give you a budget to spend on what you need. You have to account for it and you can't spend it on anything but it does mean you can buy in some help with things. It's worth ringing them up and checking it out. I was offered an assessment by my ot a couple of years ago but wasn't ready to accept that sort of help as was about to start anti tnfs. However, it's worth checking out to see if you would qualify. Might give you a bit more money.
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Date: 27.09.2012
From: Kim
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Subject: Re: trying to be normal
Hi BSK
I spoke to Occupational therapy and they said I need to be reffered by my consultant. His secretary is back next Monday so will have to hang on until then. I did have some splints years ago but got lost when we moved house, im sure with using them it will make things a little easier.
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Date: 27.09.2012
From: bsk
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Subject: Re: trying to be normal
Well, that just seems old fashioned to me Kim! I get my splints from the nurses at the hospital or when I see the rheumy. they do help.
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Date: 28.09.2012
From: Lynnr
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Subject: Re: trying to be normal
That's a shame you have to wait I get my splints form my physio and I just need to call down if I need new 1s although my OT brought me a new pair the other day,
It is weird of all the different areas have different policies.
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