Acceptance

Jo90

Hi all
Felt that this was my 'safest' place for advice and a little bit of a 'fess-up ! I've had inflam arth for over 10 years, getting progressively worse. I was diagnosed 2 years ago and put on meds for it, but for the last 6 months it feels that they are inadequate. At my last review (April) there were mixed feelings around what the next step should be, but nurse was reluctant to revise my meds (currently plaquenil twice daily, plus naproxen and omeprazole). I have gone from a situation where I was only having flare-ups in my knees (and sternum) once overy few months, but now I am having severe mobility problems around 3 days per week. (To the extent where I struggle to shuffle around the ground floor of the house, and have to think very carefully and efficiently about trips upstairs !)
I have now finally accepted that I am not the spritely thing I once was and am going to submit a claim for DLA. I had been reluctant, because my flares were quite well-spaced out and also because the meds were originally controlling it quite well, but now it's really hard. I'm a single parent and need to get my kids to assist me with some things and save my legs. But I think I have finally conceded that my illness is not going to go away and what that means for my future and my view of who I am.
Any guidance on what I need to consider when completing my DLA form, eg specifying how long it takes me to walk a specified distance etc, much appreciated.
Thanks, Jo

stickywicket

I can't help with the DLA form but it does seem to me that your nurse has taken a decision better left to the rheumatologist although, presumably, the rheumatologist was consulted. I'd ring again, Jo90, and ask for an appointment with the rheumatologist. It might be that he/she will say the same thing but at least you'll have it from the horse's mouth and they will know that this is not just a brief flare but an ongoing situation.

woodbon

I can't help, either with DLA. I know some people on here are getting it and also that the 'system' is slowly changing over, which will effet everyone claiming benifits. Being a single Mum relying on childrens help, should give you a good claim, I do hope so. Good luck. Love Sue

Jo90

Thanks for the reply stickywicket. I think part of the problem here is that my rheumy consultant has suddenly retired, the nurse I saw at my meds review was initially going along the route I was guiding her (of revised meds) and even mentioned that she had a med in mind, but had to refer to a consultant before she would progress. With only her summary in mind, and not having me present, the decision was made that my meds were not to be changed and that I was to have an assortment of ultrasound, physio, steroid injections in my knees etc instead of changing the overall treatment. I might have to wait for the injections (desparate to have them done !) then see if things settle.

Thanks for your kind words Sue

Folara

Hi Jo,

It is really hard to come to terms that you just can't do what you used to do, but all is not lost. See your Rheumy again and make sure they understand just how debilitating it is for you. We are all very good at playing down how we really feel and whereas our parents taught us that was the done thing, it really doesn't help us get the help we need.

Now for those dreaded DLA forms.

Always tell the truth, but you have to word your answers in such a way that when skim read it shows what you struggle with. An example:

Do you need help dressing?

I can dress myself most of the time but sometimes my legs are really sore and stiff and i need help with socks and trousers.

That would be read as you can dress yourself and obviously you can wear something easier on those days.

Now if you said:

I need help putting my socks and trousers and knickers on as I am in a lot of pain a great deal of the time and my legs have limited mobility.

It's first few words that are important.

Answer 1 - I CAN dress
Answer 2 - I NEED help

It's not a case of lieing and I would tell anyone that that is really stupid and inappropriate. You just need to answer each question in the way they want them answered. I actually learnt this when I did a degree a few years back. Once I had mastered the way they wanted the answers worded, I passed with top awards.

I really hope that helps but if you want any more or have any more questions I will do my best to answer.

Fols x

stickywicket

Well, some very good advice there from Fols. As for the meds side - it’s a tricky one, isn’t it? Presumably they will be appointing a new consultant soon but, in the meantime……

All the things they are trying should be helpful in one way or another. Personally, I love steroid jabs and I’m a new woman afterwards whether into joints or just a general in the rear end. Exercise too is very helpful. I’m sure, if you’re looking after children, you will feel you get more than enough exercise. I know I did. But exercises get to the bits that we manage to avoid in daily life, and strengthening the muscles means that the joints are better supported and so hurt less. (I’m brilliant at the theory but I was rubbish at the practice when mine were young :oops: . I’d do things differently now. Indeed, I do.)

I think, in your position, I’d be tempted to ring in and try to hurry up the steroid jabs or, if you have a sympathetic GP, enlist his/her help in that process. And don’t forget to rest those legs for a couple of days after you’ve had them. Take care.

Jo90

Many many thanks to Fols and stickywicket here, excellent tips on how to describe the things I can't do to best effect. Much appreciated.
Stickywicket - understand exactly what you are saying about exercise, but I get stuck between my 1 day per week off without the kids that is my opportunity to go to the gym and other chores/kids ill/me ill ! Went for a long walk last weekend, knees were great, then I was goosed for the next 2 days !! It is so difficult to understand when my joints will behave and when they are going to play up.
It has taken me 4 weeks of chasing to get my steroid appointment set up and I CAN'T WAIT ! (Mad I know) Hoping for the same sort of outcome as you -I would love to be a new woman and will happily put up with the anticipated discomfort of having them done. Another question now I'm afraid. The nurse advised that I would need to rest my legs for 48 hours afterwards, so, with 2 kids to consider, just how extreme is the 'rest-up' advice - does it mean I would be ok to do a short drive to drop youngest off at school or would I need to be flat out - meaning I would need to get some arrangements in place instead ?
Thanks for all advice

stickywicket

It really is best to rest them as much as possible, the idea being to enable the stuff to stay in the joint, where it's needed, for as long as possible. It will dissipate round the body anyway but the more you use the legs, the quicker that will happen. In an ideal world they would also provide you with a slave and a nanny. However, I suspect you'll just have to muddle through as best you can. Can you call in any favours with family and friends?

barbara12

Hi Jo
I am so glad that Fols has given all that advice and info, they dont make it easy but you go for it, and I really do wish you well with it all.
Good Luck x

skezier

Hi Jo,

Fols has given you some good advice there. Make sure you say the same thing as near as and write in every box. You also need the consultants letters and the gp back up etc.

Good luck flower though sorry your having to do it.

Fingers crossed Cris x

Jo90

Thanks to all for the kind replies - Barbara, Cris and Stickywicket, much appreciated
If I wasn't going through it I wouldn't have come across such a lovely community of people !
Stickywicket, I will look out for the option of the slave and nanny if I get to choose it unfortunately no family nearby I can rely on and friends all work and I hate to ask. What I will do though is get organised (ironing done, meals cooked and prepped in the freezer) and get the kids in the right mindset that mum needs some help. Fingers crossed I get some benefit from it.
Night all, sleep well.
xx

skezier

Night night and have a pain free one as well (hey hey happen now and then )

Oh you hirng out slaves? I could so do with one Sleep well. Cris x

bubbadog

Hi Jo, It is really hard coming to terms with that your life is going to change forever and you are now a disabled person. I know it took me a while and a friend literally sitting me down and talking to me. The sooner you realise the sooner you can start to get yourself help to make you and your families life easier.
You should look at getting a referal see an Occupational Therapist, they can help you by making your home and your life easier for you.
As for those dreaded DLA papers this is how a friend who already got it helped me to get through them:-
Always write your answers on a pad of paper 1st to make sure your happy with your answers & then you can keep a copy of what you put down as answers.
Always answer the questions as if it's your worst day/ having a flare up. (Your not lying you do get like that!)
Photocopy the papers to keep so if you have to do redo it in a year -several years you know what you said!
If you have any forms like a home study where a medical proffesional says anything about your health photocopy it and add it to show how bad you are!

Hope this helps and keeps us informed how you get on, and remember we are here if you ever wanna talk to somebody.

Jo90

Hi all

Thanks to all for the previous replies and guidance - all very helpful.
Sorry, I need to get some guidance again. I had my steroid jabs in my knees on Tuesday, was pretty well disciplined at resting them that night and yesterday, but then went upstairs (slowly !) last night for a nice warm bath and all hell let loose ! Got out of the bath and my knees were red hot and inflamed for hours afterwards. I had to get my kids to get me ice packs and lock the house up as I couldn't get downstairs Not sure if that was to do with the jabs, or the warmth from the bath. A rough night followed where they felt very sensitive and I struggled to sleep, but they are now a little more 'normal'. My question is - is this to be expected ?

valval

Jo90 wrote:

Hi all

Thanks to all for the previous replies and guidance - all very helpful.
Sorry, I need to get some guidance again. I had my steroid jabs in my knees on Tuesday, was pretty well disciplined at resting them that night and yesterday, but then went upstairs (slowly !) last night for a nice warm bath and all hell let loose ! Got out of the bath and my knees were red hot and inflamed for hours afterwards. I had to get my kids to get me ice packs and lock the house up as I couldn't get downstairs Not sure if that was to do with the jabs, or the warmth from the bath. A rough night followed where they felt very sensitive and I struggled to sleep, but they are now a little more 'normal'. My question is - is this to be expected ?

often you get pressure and swelling in them after jab and a feeling of heat so the bath could have triggered it with the going up stairs keep the ice and pain meds going should get better from here if not give who ever did it a ring and ask for advice val

Jo90

Thanks Val - wish I'd been advised by the person who jabbed me ! Would have saved me a lot of grief - will give them a ring today.
x

dreamdaisy

I have had aspirations of and steroid jabs into the knees before now - not my favourite procedure :roll: - and the aftermath pain is not nice. I haven't been able to manage a bath for years now, the getting in is fine as gravity is the key assistant but the getting out is impossible as my knees don't bend sufficiently. I'm with val on this one, I think the bath triggered the heat and bending your knees to get out was probably one movement too far. Rest up as much as you can today, keep up with the pain dullers as they do have a cumulative effect, and I hope that you do gain some benefit from the steroid. Take care. DD

Jo90

Thanks for the advice DD (and I didn't mean to show off about having a bath - quite appreciate there are many forumites here with very different limitations)

Will do as you both suggest and keep on top of my drugs today - funny, I had been thinking I would be bouncing around by today (well, relative to normal levels !)
xx

dreamdaisy

You weren't showing off - actually I feel rather envious! Why I said what I said is because although having a bath is still the norm for you when doing an ordinary every-day thing it is easy to forget just what physical stresses can be put upon one. We take it for granted that a knee bend of about 120 degrees to get out of the bath is an OK think to do, but sometimes it ain't and this could be one of those times. Your poor joint had been 'pressure washed' with steroids, a most un-natural procedure and I suspect it didn't appreciate that stress - you'll know for next time. I am sure the bouncing around will follow in due course but you need to take things easy first so that can happen. DD