Occupational Therapy

[jamg3916]

This is more in praise of OT than a question. Of all the professionals I have had dealings with the OT folks have been the most helpful and supportive. They talk to me like a human and listen, and as far as they can let me have things to help ease the practical side of living with Lupus. Things I never knew existed or had even thought about....they are wonderful!

[Tigerlily4]

They are indeed wonderful people!

[purple-lou]

I am having a home visit tomorrow. I'm so excited because I know they can provide practical support. I think that we get so used to be ill that we don't realise how much help we need. What advice did they offer you?

Louise xx

[jamg3916]

Have got a perch stool for kitchen/ironing, sock putter-on thing, grabber, frame to go round loo, bath board, wrist supports and in chatting other ideas came up...it was like a revelation as have felt so alone in this. Struggling to do anything...am ridiculously excited about the bath board as can shower now without worrying about falling...good luck with your visit..

[Hidden]

I agree the OTs are the most useful of all the professionals.... and if I had to rank them I'd go OT, GP, Physio, Consultants (I know these latter keep me alive but they don't see ME, only a load of numbers on a computer screen and if those look good they're happy).

[jamg3916]

Update on the bath board.....WONDERFUL.....could wash without rushing due to tiredness even scubbed my toenails.....washed my hair twice....sat and cried at one point....but such a simple but brilliant aid.....every home should have one...!!

[Kali]

Hi all,

Am new to the site this evening. I suffer from SLE mildly as I just get the joint pain and extreme fatigue. Just thought I would pass on some things I know to be useful as I am an OT.

After showering/bathing use a towelling bath robe to snuggle in rather than wasting precious energy towelling dry

Use of long handled sponges or accessories for body washing

Use of a sock aid, long handled shoe horn if it's difficult to bend

Using elastic shoe laces

Slow cookers!!

Sitting to prepare veg. If you don't have a perching stool a bar stool is great

Travel kettles which reduce strain on joints rather than heavier standard kettles

If cooking veg in a saucepan, put the veg in a wire chip basket first so that when the veg is cooked the basket of veg can be lifted from the saucepan leaving the heavy pan of water behind

If any of this helps even one person it would be great

[jamg3916]

Brilliant...couple of things there I hadn't heard of...will give them a whirl....thanks

[Kali]

Hi jamg

If there are certain things that you are struggling with, post it and I will have a think of an idea to help. It's nice to be of use as I'm currently struggling with dealing with the awful mental and physical fatigue with the pain and I'm finding it lowers my self esteem as its so unpredictable.

Kali

[jamg3916]

Hi Kali, know that feeling only too well am a teacher who has worked with SEN used to being active, busy, using my brain.......Lupus is horrible.....if anything else crosses my mind I will definitely be in touch!

[Kali]

No worries, happy to make suggestions to anyone. It's the unpredictability and lack of understanding. Went to my gp yesterday and my eyes were filling up because I felt so fatigued. Within a minute he suggested anti depressants.. Although I know them to be helpful I am currently trying to seek alternative methods to manage when I feel low. I feel that people sometimes think I'm "putting it on" because I can be ok for a week or so then become really fatigued and then I withdraw socially as sometimes I can't handle conversation as I feel too tired. I guess if I find it difficult to understand then others who don't have it will too hence joining the site.

[jamg3916]

Kali...I have spent so many drs appointments in tears...and just got prescriptions for anti depressants.....I don't take them....very real lack of understanding about Lupus...since joining this forum I have felt less alone.

[Kali]

I was on them for a few years due to personal issues and following diagnosis. They gave me brain fog and an extra two stone..bad for the joints. I refused them. He gave me naproxen for inflammation but when I read the sheet it said do not use with aspirin and on caution with SLE!!

[jamg3916]

Have found that too...been prescribed meds that contraindicate with Lupus. Ibuprofen is also a no-no. I tend to stick with over the counter although have been prescribed Tramadol, but seem to have such horrid reactions to so many meds I don't take them. Am med free at the moment as Methotrexate didn't suit me, second lot of immunosupressants....so in constant flare...

[Kali]

Called the pharmacist yesterday regarding the naproxen and he said that sometimes it is given to get rid of the inflammation but it's about weighing up the pros and cons like pain v risk of blood clot/stroke amongst other things. I know what I'd choose. I'm just amazed the GP didn't discuss that with me especially as I've reacted in the past to meds with hives and swelling of lips and eyes as well. Bless you being in constant flare; at least I get a few days now and then where I'm not so I need to count myself lucky x