*Sigh* Occupational Therapist not very helpful + pain is bad

Avrielle

Why am I deteriorating so friggin' quickly! My knees are so sore and I actually can't get down the stairs now.. My hips are bugging the hell out of me and it only started 2 nights ago, but it's not a one off.. I think my hips are getting pretty bad like my knees. I can't sit comfortably and I have to keep moving as standing, sitting, lying down just hurts after a short time.

It's not fair!

Had Occupational Therapist round today and we are going to try chair raisers on my armchair. They can't give me a special cushion of support/comfort cuz they say it would be problematic. They don't want to give me a frame or seat for the toilet, instead I will get an extra grab rail where the towel rail is.....

I just want to cry! The OT just hasn't been very helpful at all!

I'm just gonna get worse aren't I? Pain, espesh new pains and in different parts of your body is horrid! I've got my 25th Birthday in 3 weeks, but at the rate I'm going at I will be useless from the waist down by then!

ruby2

Sorry to read this Avrielle

I have found my OT worth her weight in gold.
Often the community OTs are very generic and are seeing clients with all manner of difficulties.

Would it be possible to see the OT attached to the Rheumatology team you are with maybe?
They are trained and experienced in your condition specifically.
hope you soon get some ease.

frogmorton

Avrielle

You are not useless! and you will have a great birthday - 25 is rather special i think

The Ot didnt sound so helpful to you :? I am surprised as usually they are the one service we all find useful

No raised loo seat even?

Gosh well - I woudl see how you get on with the bits and bobs and if it's not enough jolly well re-refer!

Love Toni xxx

stickywicket

I'm so sorry, Avrielle. I've always found OTs brilliant. Not letting you have a raised loo seat is just plain odd because they're usually one of the first things on offer. I agree with frog. Try again later. Meanwhile, it's easier to come downstairs backwards - bad leg first, one step at a time. If you don't have a good leg and can get down on your bottom, that's easier too.

earthspirit

i agree too about the toilet seat. its the one single item i got that was any use at all. phone them back up and explain to them.
re all the pains you are getting springing from everywhere - i dont know what type arther you got or anything about the time you had it etc, but in my own case i had one bad knee that turned into 2 knees 2 ankles 2 hips. ultra cool physio explained to me in great detail why the only real issue is the 1 knee so im working on that. hopefully you will be something the same - i dont know how you get to see physio where you live but here you just self refer and they are really quick in getting back to you.

hopesomething helps soon and you have a magic 25th borthday - you are all grown up now

Avrielle

Thanks folks.

I will phone them up today and cancel the order for the grab rail as it really wont be any use at all where they are going to place it. The bathroom is a bit awkward as the towel rail is there and they are wanting to replace the towel rail with a grab rail.

Regardless of where they put the grab rail, it wont be of much use to me. It wont make it any easier to stand up from the toilet or sit down. It will still hurt just as much, and I am guessing if my knees are hurting this bad then it probably means I'm not to put so much pressure on them. I do think I need a raised toilet seat. And I did ask her, but she said "it wont help to be able to lift yourself off the seat" but it's obvious that there wont be as much need to push myself up if I'm sitting higher/knees less bent. But I didn't think to argue with her.

Oh well.

The chair raisers may be of great use - if they fit my chair legs. But I'll phone up and cancel the grab rail and ask for a raised toilet seat. If they still don't give me one, then I'll just have to wait until I have seen the rheumatologist and have him give the social his opinion on the matter.

I do think I need some sort of cushion to give myself some comfort and support while sitting. At the moment I am using an extra cushion on the chair seat and a pillow the rests on my back. The OT said there were cushions, but claimed them to be "problematic" because I would find it more difficult to push myself up and off the chair. But again, like the toilet seat issue, if my knees are less bend as I'll not be as low down, then there would be less need for me to push myself up.

Maybe the OT just didn't fully understand my difficulties... I'll phone them back anyway. I don't want to put a complaint in or anything like that, but I do want the equiptment I need.

Probably doesn't help that I don't have a diagnosis yet...

dreamdaisy

For quite a few of us arthritis is a progressive, degenerative disease. I began with one knee, now I have thirty eight affected joints and currently some more are busy adding themselves to the list. The first thing I was given was a raised loo seat and that has been very useful but I rarely use it, only when I'm flaring. Public loos don't have that feature, neither do disabled ones but I have noticed that some of the newer disabled loos have a higher 'throne' which is wonderful. A grab rail next to the loo could be useful - how about getting one that works by suction? You could put it up and take it down as and when it's needed, they don't cost that much.

I haven't been in touch with my social services for years, they gave me the toilet frame and installed two banisters to help me with the stairs (we have two flights) and that's been it. I can't stand beaurocracy so sort myself out with what I think I need - I know better than strangers how I feel and surely all we can do is try to help ourselves as much as we can. DD

stickywicket

Soft cushions do make getting up harder which is why I went to a local foam specialist and had one made of strong, quite hard foam for my usual armchair. I also find that, if I sit too long on other people’s soft cushions, my back starts playing up which is very unusual for me.

I have a raised loo seat and also a frame which goes round it and provides an arm ‘rest’ at each side for pushing up with. This normally lives in the garage but is vital occasionally.

Why not just buy your own loo seat from a disability shop on or off line. I keep one at my son’s.

Avrielle

I have one of those suction cup grab rails but it is useless. It doesn't stick on well and if it does, it is by no means sturdy or reliable. It falls off randomly and I certainly don't trust putting my weight on it. So it sits in the cupboard, unused now.

I have recieved a few useful things from the social before and have been very handy. A grab rail in the shower, a second banister for the stairs in my flat, (but landlords refused my request for a second banister to be put on the two flights of stairs up to my flat. They wont even repair the wobbly banister already in place! Boo!) and a raised chair for the kitchen so I can sit by the bench and cook/wash up etc.

Getting equiptment from an occupational therapist/social services is a very useful service. It is there for people who cannot afford to buy their own equiptment. I cannot afford to buy my own equiptment and am on a low budget, so I must get the equiptment from social. That is what they are there for. If you can afford your own equiptment, then that is great! There are plenty of companies out there that offer a wide range of things and they tend to look a lot nicer in your home than stuff ordered through the social. But unfortunately I cannot afford this stuff myself.

Yeah, I'm cheap. I'm sure a lot of you will see me that way. Perhaps some of you might even view me as a 'scrounger'. But I just cannot afford a lot of things.

dreamdaisy

See you as a scrounger? No way, absolutely not. It is a valuable service and essential for so many and you have already had some help from them so that is a good thing. I can see Sticky's point about the soft cushions, they can be struggle as one sinks into them far too deeply sometimes! I hate low chairs too, when visiting people I often end up on a dining room chair - if my bum ends up lower than my hips then that's it, I'm stuck and have to be hauled out.

It is difficult to get comfortable, I now sleep with a pillow between my legs as that eases the strain and weight on knees and ankles. As for sitting I cannot do it for too long, I get up and move around on a frequent basis, go and do a chore or two then sit down again. I always have my legs up, with at least a cushion under my knees as that supports them a little better. Are you able to to do that too? DD

Avrielle

Yeah, Sitting in low chairs is just a no no and even getting out of a standard dining room chair is a real struggle. At appointments I have to stand or lean against a wall or ask for a higher chair if they have one in the waiting room and in the appointment.

Problem is that because of my bad foot, I actually can't stand for longer than 10mins before I'm in severe pain. Even with my crutches and free to move around. I'm normally in my chair, then get up and do something for a short time or go to the bedroom and lye on the bed.

Lying in bed isn't as bad, but can hurt my back, shoulders and hips sometimes. Now my hips are hurting, it means that I have to constantly change positions to feel some relief, yet it is by no means comfortable when it hurts like it did a couple of nights ago, in fact it was barely relief!

I have a beanbag footrest which I always use and have always used it ever since I injured my foot. I couldn't go without it, thats for sure! It means, as well as having my feet up and relieving pressure, I can change position of my legs and knees to relieve pressure on them from being in the same position all the time. If I have them in the same position for too long, I've noticed, they seize up and there is immense pain when I try to move. Not very nice at all. Actually, right now, I can feel them feeling quite hot and sore, burning through my clothes. :-(

These knee and probable hip problems have happened so quickly that I think I'm in a bit of shock still and having to suddenly change my ways for comfort again. These bright orange and swollen knees of mine plus the pains on top of my constant pain and problems with my foot is just being a bit too much for me!

dreamdaisy

You are certainly under the cosh at the moment, there's no doubt about that. I wonder if your hips are reacting as you are walking with difficulty? You have a long-term problem with your foot and that will have a knock-on effect on other joints. It's just a thought. I have to say the bean-bag footrest sounds great, it's given me food for thought, thank you. DD

Avrielle

Well, that was the initial thought with my knees being bad, but the worse knee is on the opposite leg to the one they would expect to have pain.

The hips are the same. The one causing the worst pain is the hip with least pressure on it... So I'm wondering if that could be arthur too...

My doc is convinced it is arthur in my knees, but my hips only started hurting properly a couple of nights ago, so doc doesn't know of the hip problem yet.

I'll find out the ins and outs at my rheumy appointment coming up. I'm hoping they will do xrays as soon as possible and whatever other tests /examinations that need doing. I just want a name and reason for why I'm in pain and struggling so much. At the moment it feels like I'm being hypochondriac! (Though I know I'm not and the pain is bad.)

earthspirit

my mum, who is far from being a poor pensioner, has had loads of stuff from OH in aberdeen. i dont know if its different throughout the country regards the funding but its like they give it all free up here, as well as the totally free prescriptions. (oh how wrong is it to give everybody free medicine!!!)

when i got the toilet set for myself i specifically asked them to bring one and they came with one of the seats with arms. i sat on it and immediately knew it was the best most comfy seat in the whole house lol
good luck

Emily

I am so glad that someone else finds OH useless as they have been to me. These OH are just in their post so the council will look good and seen to give a service to help people but that is not true. I have had a string of them out for essential things like my old bath was rusted in one end and it would have been much cheaper to change it for a new bath. Did they do that 'no', they would rather keep coming around and making useless suggestions like a bath lift that actually cost thousands of pounds but changing the bath would have been much cheaper.

In the end I gave up and got in contact with my MP but they are very good at lying as well.

If you are in council housing then there is no charge for these things as the landlord is council but if you are in private accommodation then you can apply for a grant to get these things done for you but it is means tested so do not hold your hopes up.

I live in a council flat but the OH’s are still useless.

The other alternative is to move to Scotland as everything seems to be there for disabled people compared to the southeast. :?:

stickywicket

I’m sorry, you two seem to have had extraordinary bad luck with OH, Emily. I think most people on here find them very helpful. It might be that your health authority or council (I’m not sure who appoints them) are not very careful when appointing them.

I don’t quite see that a bath and a bath lift are alternatives. A new bath would be useless to me if I didn’t have a bath lift to enable me to get in it. My old one was recently replaced without question. I know that the new one only cost £285, not £1,000s of pounds, though.

Avrielle

My bath isn't standard. But I was sent a swivel bather about a year ago and it didn't fit. Also it was bloomin' dangerous as the bather chair would come off the frame if you didn't lock it in the right place. But while sitting on the chair, you can't see where the locking arm is supposed to lock in to, so if you pressed the locking arm down and it didn't slot in the lock slot, then it would lever under the chair and push it out of place! This isn't easy to explain i words, but basically I was lucky not to break my neck!

So I had them send it back but they said they would replace it for a different one. I thought they meant a different model, but when the delivary man arrived it was exactly the same with the same major design flaw! And I also had to be careful as the frame didn't fit the bath properly.

I gave up on it for obvious reasons. I cannot get in my bath at all. I could get in and stand in it, but I can't sit down in it or get out again. It was lucky I left the door unlocked the day I discovered those difficulties... I had to have my partner lift me out!

But luckily I have a stand-alone shower. I have a grab rail in there that I need to hold on to for balance and take weight off my foot. I'd be a very stinky girl if I didn't have that! Heh!

dreamdaisy

Oooh luxury! A stand-alone shower, that must be lovely. (DD sighs a wistful sigh.) Due to a cramped bathroom (early Victorian house, they weren't that hot on hygeine) ours is over the bath, so llike it or not I have to clamber in, then when the legs are nicely numb, clamber out. Hey-ho. DD

hileena111

You do seem to have very bad luck with your OT's.....Mine couldnt have been more helpful....suggesting all sorts of things.
I did get a bath seat but it wasnt suitable really so they came back with a different model. I dont really need one now..I can clamber in and out....turn round on my knees and get out....not at all elegantly
When I had my hip replacement I had all sorts of things....same when a car drove over my ankle.
Sorry you are having so many problems

Love
Hileena

Emily

It is my council they have told pensioners that bathing is not classed as priority and a wash-down would do, that is what I am doing at present and am very reluctant to engage with the OH again as they give me such a bad time before and in the end did nothing constructive for me.

If I owned my own home I would get it done for myself, but as it is council accommodation they should look after their properties such as wear and tear as it was with the old bath I had and got change though the council own maintenance departmentand not the useless OH which was their job :!:

stickywicket

Emily wrote:

It is my council they have told pensioners that bathing is not classed as priority and a wash-down would do, that is what I am doing at present

If that is the case, Emily, I suggest you get that in writing and then send a copy to your MP.

However, I don't understand why you can't have a bath as you said in your previous post that they did offer you a bath lift.

Emily

stickywicket wrote:

Emily wrote:

It is my council they have told pensioners that bathing is not classed as priority and a wash-down would do, that is what I am doing at present

If that is the case, Emily, I suggest you get that in writing and then send a copy to your MP.

However, I don't understand why you can't have a bath as you said in your previous post that they did offer you a bath lift.

Obviously they did not give me that in writing it was the OT that said it. I did write to my MP about it but of course they said that they could not comment on it.

The bath was old and put in when the building was built in the 60's it was a good cast iron one so lasted a long time. The plug end got rusted and the rust kept eating away at the plug end. With the bath lift my feet were at the end of the bath directly on the rusty plug end, I actually got sore on my heels from bathing in it. The OH completely ignored the rust and keep coming up with suggestion for me bath lifts which was not helpful for as the bath needed changing.

Had 2 bath lifts which cost thousands of pounds, I could not use any of them so I contacted the housing maintenance team they were wonderful, the guy for maintenance saw the state of the rust and immediately order a new bath and did exactly what the many visits form OH said could not be done.

I expect the bath cost about a couple of hundred pounds and the guy that installed it was wonderful as well, he installed it in a half a day. I need the bath new to be moved slightly and I dread getting OH in again to do assessment for this. :roll: :roll: