ARE THERE NHS PROVISIONS THAT ARE HELPFUL OR USEFUL

BLEUGIRL

Hi everyone, my physcologist has asked me 2 ask anyone on here 4 any advise on any help or any useful info from nhs provisions? :sad:
iv been told iv got arther ov the spine :roll: some days i could quite happily stay in bed with how much my body aches :sad: my GP just keeps giving me painkillers & says theres no cure 4 it :roll: my CBT therapist advised i join on here & ask 4 any advise on anything which may help me :sad: so please everyone any advise would be great
i do work 12 hours a week in an office, i did use to be a carer until my accident over 2 yrs ago,( i got runover & fractured my spine t12 im very lucky i know, i can walk aided with a crutch, my lifes been turned upside down :sad: i just dont know wat help i can have or where 2 go please give me any advise :sad:

traluvie

Hi Bluegirl,

Welcome to the forum..
I am sorry to hear you are going through a rough time at the moment and can imagine you feel quite alone and as if you are banging your head up a brick wall..The good thing is by joining the forum you are no longer on your own as we can understand and relate to what you are going through.
Unfortunately i do not know about thetype of arthritis you have, but i am sure someone will be along soon who can understand and maybe advise you a bit better..
I suffer with inflammatory arthritis i use my hot water bottle quite alot of the times, one of my new best friends i have also used deep heat which has helped, some people use heat patches which are sold in many shops now, what pain meds do you take?
There is also a lot of leaflets available for you to download if you look on the site i think it is under publications and resources, you may find something useful there..

BLEUGIRL

Hi tracey, thanx 4 ur quick reply, the consultant told me i have early onset arther due 2 the accident :sad: since iv had pain in my hip, elbow, knee, shoulders & spine, i was on pain patches but mad my skin itch like mad :x so im know on 30mg of morphine slow release :sad: but my spine aches all the time sum good days sum bad, im also on ampytriplyne & citalpram, i do get so fed up, & dont know where 2 put myself sum days & 2 day is one ov them sorry i feel like all i do is moan & 2 my family :sad:

GraceB

Bluegirl,
I've got OA in most of my weight bearing joints. Pain is a real pig to have to deal with, especially when you wake with it, go to sleep with it.
I try to focus on what I can do rather than what I can't. For example, I can't go to large shopping centres as I wouldn't get round, however, as a result I've managed to save a little nest egg.

I assume you have a picker-upper? Order shopping, etc., on line and have it delivered to you rather than struggling to carry it home. When you do go out shopping use one of the "granny" trolleys - the shallow depth ones - to hang onto and use it as a walker. No bending into the deep, dark depths to retrieve your goods. I do this even if I only want one or two things - and ignore the funny looks.

Hot and cold works with me; start with cold and end with cold (peas in a couple of food bags work well but don't eat them!). About 3 minutes each and alternate the cold/hot about 5-6 times every couple of hours or so.

I have a perching stool which I use in the kitchen and for ironing. My OH made me a step that I use when getting in/out of the bath/shower - reduces the amount I have to lift my legs up. I have grab rails at the back door and the loo and live in a bungalow. I drive an automatic car now - which means I've been able to keep driving. I've got a blue badge -I assume you've got one of these?

Let me know if I can help in any other ways. In the meantime if I think of something overnight I'll jot it down and update the post tomorrow.

Take care, Grace.

traluvie

No need to apologise at all..
You can moan here as much as you like, i can totally understand why you are feeling the way you are at the moment..
Have you had any blood tests done ?? or any swelling in your jpoints??
Might be a good idea to keep a symptom/pain diary for few weeks and go back to your GP seems unfair you are suffering as you are.. I used to have the patches and like you had to stop due to rash..
I take tramadol and diclofenac(anti inflammitory), paracetamol along with others, you might need to discuss different pain relief to find something that suits you, as we are all different, what works for one may not necesarily work for someone else..x

BLEUGIRL

Hi grace, the only things i have are a wedge on my bed as im unable 2 lie flat, grabrails in my shower as all i have is a walkin shower & shower chair, a commode downstairs, a crutch 2 walk with my car is automatic, my gp has helped me apply 4 a blue badge, still waitin 2 hear from them, i do use hot & cold items, iv had lots of physio intense massage,iv had acupucture, hydro pool, all these things where done through insurance claim.

thanx jane x

BLEUGIRL

Hi trace,
iv had a mri scan from which the consultant told me i have ather in my spine, i broke down in tears im only 40 he said 2 look after myself & i would have 10 good yrs but my health as it is now will not get any better, :sad: it is a shock 2 ur system & iv really found it hard gettin my head round it :sad:
before the accident i was a healthy person know i feel like an old woman :sad:

traluvie

BLEUGIRL wrote:

Hi trace,
iv had a mri scan from which the consultant told me i have ather in my spine, i broke down in tears im only 40 he said 2 look after myself & i would have 10 good yrs but my health as it is now will not get any better, :sad: it is a shock 2 ur system & iv really found it hard gettin my head round it :sad:
before the accident i was a healthy person know i feel like an old woman :sad:

I am just 32..I used to work fulltime and did a lot of voluntary work last year, i have 2 children 10 and 14 and a great partner that help, but like you i used to feel really down and look at how active i was.. I am realistic to myslef now and do not expect to get back to that person i once was, i take each day as it comes and i am forever trying to find a reason to smile(thats just my personality) it is not that easy for some i know..My children keep me going and so does this forum,,but i still have them days occasionally where i feel 90 and wonder why me?? then i get my partner or a few people on here to give me a kick up the backside and i am on track again ..
Don't give up though luvie, things can improve , it might just take time..
Sending you hugs (((((X)))))

BLEUGIRL

Hi tracey
thanx 4 the hugs i think i needed them, i also have a daughter 19 & a partner who do help me wiv the housework etc etc, i really feel 4 u as ur only 32 :sad:
i dont know about u but somedays im my own worst enemy :sad: in more ways then 1 xx how do u cope :?: i suppose im still tryin 2 get my head around everythin i mean i know have pain where iv never had it b4 wats all that about :sad:

valval

hi part of arther is the way it affects your head and you have had such a shock to your system i would have been shocked if you had not been affected by it. the hardest thing is not over doing it on good days we all do more than we should just because we feel a little better then spend days recovering from it we are here for you ((())) val

traluvie

BLEUGIRL wrote:

Hi tracey
thanx 4 the hugs i think i needed them, i also have a daughter 19 & a partner who do help me wiv the housework etc etc, i really feel 4 u as ur only 32 :sad:
i dont know about u but somedays im my own worst enemy :sad: in more ways then 1 xx how do u cope :?: i suppose im still tryin 2 get my head around everythin i mean i know have pain where iv never had it b4 wats all that about :sad:

Your head is bound to be all over the place, it's alot to take in, i remember my pain started last year, it was in my finger, it quickly spread to various places, i felt so scared and alone, not knowing what was going on and how my future was going to be affected...Listening and reading peoples experiences on here made me realise i wasn't alone and there are people in a far worse off situation than me..I have also learnt to take each day as it comes, as every day is different..I f you saw me the other night at a halloween party you would have thought i was fine and looked at me today and probably felt for me as i can hardly walk lol.. This arther certainly likes to move in swings and roundabouts..
It is not all doom and gloom, i did a post few weeks ago will bump it for you to read , i could do with posting some more positives on it too..

BLEUGIRL

Hi val thanx 4 ur reply im so glad iv found this site xx


hi tracey i do find it so hard gettin my head around this , i know wen sum people look at me they prob think theres nothin wrong wiv her but wen im on a bad day i dont go out the house :sad: please send me any info & please help me 2 get around this board :???: as im still findin my way round.

hugs 2 everyone jane xx

traluvie

BLEUGIRL wrote:

Hi val thanx 4 ur reply im so glad iv found this site xx


hi tracey i do find it so hard gettin my head around this , i know wen sum people look at me they prob think theres nothin wrong wiv her but wen im on a bad day i dont go out the house :sad: please send me any info & please help me 2 get around this board :???: as im still findin my way round.

hugs 2 everyone jane xx

Here is a link for info..

http://www.arthritiscare.org.uk/PublicationsandResources

Chit chat is a place where people talk about other things and have a laugh.. be worth taking a look to see whats on there, poetry threads, tests and crazy stories lol i am sure it will make you smile..

BLEUGIRL

ok thanx tracey xx

dreamdaisy

The NHS is there to provide care and treatment but what they cannot help with is teaching us, as individuals, to cope with and manage our new (and horrible) lot in life. Over time we each find our own ways of dealing with the arthritis, we find what suits us and try to stick with it.

I find it's a little like riding a rollercoaster as it all has its ups and downs. On the better days I do what I can, I pace myself so I do not tire too quickly, and I try to find the time to appreciate that this is actually a better day (be it body or head wise). On the rougher days I do what I can, I pace myself so I do not tire as quickly and I try to remind myself that it is not my husband's fault, or mine, or any of my friends' that I have this filth to deal with, so I try not to get cross with anyone, including me. I vent my frustrations on here or by throwing my oldest crutches around with some venom - that helps.

As your arthritis has resulted from an accident that sounds like OA to me so I guess your GP is the one who is looking after you. Pain management is important as is exercise: that helps to keep the muscles strong and support affected joints better. As for what people think - who gives a damn? I know what's up with me, people can think what they damn well like about it, I care not. Most of life is about choice - OK, I have not chosen to be like this, it's been thrust upon me due to dodgy genes - but I am so I have to get on with it. Only I can change my life - no-one else can do that for me. I can't change the arthritis, but I can change the way I think about it and deal with it - being on here has taught me that. I wish you well. DD

BLEUGIRL

Thanx dd, i really get frustrated with things in life, especially as it was not my fault im like this, but i know i have 2 carry on & get on wiv my life the best i can.
how do you get the help from NHS will my GP have to recommend items like a perching stool & handrails in bathroom, because iam in the middle of a compensation claim & they gave me suction rails 4 in the shower, but at times they come unstuck & fall off, they also sent me a tempur mattress topper 4 on top of my bed but its no good to me its too soft, iam asking for a adjustable bed & still waiting, they do not rush 4 things i need, iv even brought myself a second hand scooter :!: so dd if u have any advice please help me as i sometimes or should i say i always feel like im talking 2 a brick wall :oops:

many thanx jane xxx

dreamdaisy

I think you may be confusing the NHS with Social Services. It was the social who installed two handrails on the stairs for me and provided a raised toilet frame. I have no intention of asking for anything else as there are far more in greater need than me. I have always bought my crutches, I will cheerfully stump up for a second-hand scooter when the time comes (and believe you me it's coming but we have to move first as there is nowhere to store it) and I will sort stuff for myself as and when so I can get what suits me (not what someone else thinks suits me) and when it suits me. I am my responsibility and I want the freedom to do as I wish, when I wish. I am a priority to me, but not to anyone else and to be honest I don't have the energy to get tangled up in their tortuous beaurocracy! DD