Independence

[Tinkerjack1912]

This week another piece of my independence walked out the door. I’ve been struggling with getting in and out the bath for a while but with the use of aids I’ve managed one way or another. Well I had until recently and now I can not get myself up even to sit on the seat. Heart breaking to say the least.

[whisperit]

Nooo. A soak in the bath at the end of the day is sometimes the only time one can feel even halfway normal for a bit, isn't it?

After despairing at running out of improvisional tricks, I went into the local disabled aids shops and asked them for *all* their ideas. They were genuinely helpful. They let me try out a whole range of handles or grab-rails fixed in lots of different positions - that made a big difference, as my initial placements were not good, as it turned out. My fall-back position (hahahaha) is to get one of those electric reclining bath seats. They are about £200. Hang the expense.

I imagine you have done all this already, but gosh, it's a hard one to take. I'm just hoping there is an option you haven't yet seen... x

[Tinkerjack1912 in reply to whisperit]

Thank-you. I have tried most options but I’m hoping there is something else that can help. I hate being reliant on my fiancé even though I know he doesn’t mind.x

[weathervane]

Contact the occupational therapists if they supplied the aids and tell them you need reassessed . If you bought them yourself ask your gp for an urgent referral for assessment. I really hope you can get something underway quickly xx

[Tinkerjack1912 in reply to weathervane]

Thanks. I have a doctors appointment on Monday for something else but I’m going to mention it as it has really got to me and we only have a bath in our house so there’s not much option at the minute. X

[weathervane in reply to Tinkerjack1912]

Good luck , hope you can get sorted x

[Tinkerjack1912 in reply to weathervane]

Thank-you x

[MEW53 in reply to Tinkerjack1912]

My sister has MS and was last assessed in 2013 approx, she fell over last week and cut her and got a head injury, the paramedics arrived and glued her eye and put steristrips in the eyelid. She has now realised that she needs more aids and help, I contacted social services and fortunately the Senior OT came out cos she recognised the name and remembered she has MS. She went round the house, she lives on her own and came up with several ideas to help she is getting a delivery soon containing various aids to make her life better. She has made a referral to a domiciliary physiotherapist.

A week ago she was able to have a bath, now she is having difficulty lifting her leg into the bath, she has a bath seat, so she ordered an aid to help allow her bathe. Fortunately, my sister is an ex nurse so manages to do body washes with flannels.

Mention being assessed at the doctors when you go, but we just rang Social services because my sister’s surgery told me they were too busy to refer her and that we could do it ourselves.

Good luck

[Tinkerjack1912 in reply to MEW53]

Thank-you. My gp has referred me back again. I’m waiting for an appointment now. I’m strip washing at the minute but it never feels right. I hope your sister is ok, my sister in law has MS.

[whisperit in reply to weathervane]

That's a better suggestion than mine! x

[AgedCrone]

If you are feeling well & not in pain why not see if you can get a shower installed.?

I haven't been able to heave my 55kgs out of a bath for 10 years or more &

now I don't miss it at all!

I am just grateful I can walk around without any aids, & can do most other things I did before RD raised. it's ugly head 20 years ago!

[Tinkerjack1912 in reply to AgedCrone]

Sadly my pain is high and my mobility is limited. We enquired about a wet room but we’re told it wasn’t an option at the time. I will speak to my gp and see what she suggests. I wish I could do more. X

[AgedCrone in reply to Tinkerjack1912]

In my last house I had the bath taken out and a double shower fitted.....much less work than installing a wet room....not too pricey either as shower was as wide as bath was long...so not too much work. It had a shower seat & was a great relief to be able to shower whenever I wanted.

Why ask your GP......if you feel it would work for you just go for it.

Don't despair though.....we all go through periods of pain & feeling really down, but these times do pass.

Ask your GP about better pain control & explain how demoralised you are that you can't manage to get in/out of the bath now.....maybe she will come up with some ideas?

[Tinkerjack1912 in reply to AgedCrone]

Thank-you x

[bones-bones]

Have you tried an inflatable Bath lift ? A friend.....also auto immune disease was given/lent one by the Occupational therapy department and it has saved her.

[Tinkerjack1912 in reply to bones-bones]

Oooh I haven’t heard of one of them, thanks I will look into it. X

[farmerfeste in reply to Tinkerjack1912]

Hi I have one off these through ot also works very well for me a loughs a good soke

With Epsom salts does me good to get some magnesium .

[Tinkerjack1912 in reply to farmerfeste]

I use Epsom salts too. 😊

[Hidden]

I often wondered about the ultrasound. Yours came back negative whilst your knees were a couple of balloons? This goes to show these tests aren't fit in some cases, not sure in which types, but would be useful to know. Have you thought about your condition being iatrogenic? Have you thought about the failure of the op being the cause for your current situation? You might want to look up to see if there are others who had the same issues in the area?

[Tinkerjack1912 in reply to Hidden]

Hi, yes I have thought about it. I had test after test done after my initial op in 2003. I don’t know what to think anymore. So far rash wise I was doing ok until yesterday and bang as soon as I step outside the burning sensation and bright red rash. The swelling is the same. X

[chrisj]

Hi Tinkerjack.... I was having the same problems of getting out of the bath some years ago. Could get in but getting out again was extremely painful. I had a trapped nerve lower back and sciatica, worst pain ever. Lost my confidence and wouldnt leave the house unless I had to. The rheumatologist I was seeing then referred me to a dep with OT and a physio on the same floor

The physio wasn't much use and I was in too much pain to co-operate with her anyway, but the OT dep was wonderful and in the end she suggested I had a walk in shower fitted in my bathroom. I agreed and someone came out to do an assessment, seems I was entitled to a grant to pay for it. They stripped the whole bathroom, bit of a shock but the results were worth it. To shower with minimal pain was such a relief, there was a chair supplied as well. I have asthma and often struggled to breath with so much stress

I'd urge you to talk to your gp about OT help or your rheumatologist if you have one. I'm not sure how things work these days, this is around 10 years ago and rules might have changed......I hope you can get some help xxx

[Tinkerjack1912 in reply to chrisj]

Thank-you. My rheumatologist is not great if I’m honest. My gp is good though, I’m seeing her tomorrow. X

[Susiemarden]

I was assessed and given a grant. They removed the bath and put in a wet room. Changed my life for the better!x

[Tinkerjack1912 in reply to Susiemarden]

Thanks I will look into it. Where do I start with looking for a grant please? X

[Imom]

How sad to hear about your inability to bathe. I’m wondering if suction cup handles on the wall to pull yourself off the seat would helpor maybe you don’t have the strength. They are inexpensive so I thought I’d throw it out there. I’m sorry for you. Sending prayers. Have a good day.

[Tinkerjack1912 in reply to Imom]

I have handles on the wall but they didn’t help 😞. I know my fiancé doesn’t mind helping but I hate the fact I need the help so much. X

[Susiemarden]

I got an appointment with occupational therapist whom agreed I needed a shower not bath. They did all the paperwork and council agreed funding. From beginning to finished bathroom it was only four months.x

[Tinkerjack1912 in reply to Susiemarden]

Thank-you. Xx

[Tinkerjack1912]

UPDATE

I saw the dr and she has referred me back to the OT so it’s just a waiting game now. All I know is I don’t feel properly clean like this. Fingers crossed it’s not too long a wait. Xx