What did I ever do to deserve this I wonder. It’s eleven years next month since my diagnosis, but I’d symptoms going back for some years if only the doctor has taken me seriously each time I saw him.
I could cope if it was just my mobility issues, or just my lack of manual dexterity, or just the limited range of movement in my arms, or just the bladder, the urge incontinence, and the fact it doesn’t empty fully and having to self catheterise.
Its the combination. I suppose I’m lucky I’m not in pain, but today I’m feeling a bit sorry for myself.
I’m in on my own at the moment which doesn’t particularly bother me, but I really need to get to the loo, and I’m not sure I can get out of the chair!
lf getting to the loo has become a real problem for you …do think about having a SPC - supra pubic catheter. Had mine over 20yrs - and it is the best thing l ever did. At least it gives you back some self-esteem and dignity.
Had PPMS 34yrs now. Cannot walk unaided, so get around with my rollator - Topro Olympus - it has become my best friend along with my Tramper scooter. The rollator l can take in the car to get me in and out of shops. lt carries all l need. And l can get to the loo in record time. The seat on it is just the right height and the back -rest keeps me secure. l know l would be in a wheelchair full time if l had not got my friend.
I think the toilet issues are the hardest to cope with both physically and mentally. Through adult social care in East Sussex; I was referred as an emergency so I was fast-tracked, I now have a riser-recliner. It takes a bit of getting used to but it helps me get up. When I don’t have my wheelchair, I use a rollator as well. Mine lets me easily sit down on it and scoot with my good foot. I’ve always resisted a catheter. Perhaps your GP could get you referred as a priority if you emphasise your genuine difficulties.
I know it may seem that we’re putting people out and we don’t want to be much trouble but we do have a chronic illness. I don’t have a “I know my rights” mentality but I demand a certain level of independence and I have acquired the necessary support and equipment to help me achieve this. This site is a good starting point for information.
I’m sorry to hear your struggling and I hope this has been some help.
Sorry to hear things are so difficult for you, I agree it is the combination of problems that get to you and make us feel low.
I agree with the others, a referral to adult social services would be of help, you can self refer or ask your GP for a referral, and I would ask for an urgent one.
I wish I had a magic wand for times like these, but we are all thinking of you and wishing you well.
Thanks I’ve cheered up a bit now! I got out of the chair and to the loo too!
I saw a Urologist who put me on the list for urgent Botox on my bladder on 14th October - I’m still waiting! So much for the NHS claim that treatment starts within 18 weeks of seeing a consultant.
I didn’t get on with the rollator and use crutches at home. Electric wheelchair if I’m having a bad day, but I’m trying very hard to hang on to some mobility and dignity! I pay for physio fortnightly and go to the gym three times a week.
Its been tough these last few weeks as my husband and sole carer has been ill, and is currently unable to drive, so I’ve been pretty much housebound.
Aww I felt so sorry reading your message, how awful for you im glad that you managed to get there in the end. I have been using a comode in my bedroom for the last couple of years its not very dignified but it does the job I joke about having an onsuite. I’ve been to see a consultant recently and he suggested botox I was still thinking about it at the moment I’m on two different tablets but I’ve had to stop one of them because of the unpleasant side effects. I hardly get any sleep now because of needing to wee all night. I don’t know much about botex except that celebrities use it on their faces. I must admit I feel a bit uneasy, well scared in case I can’t wee at all after the procedure. Let me know how you go on. Michelle x
Hi, of course I’ll let you know how the Botox goes. Like you I’ve tried different meds - solefenacin, tolterdine, oxybutynin and betmiga. None of which have made any noticeable difference. The side effects of the oxybutynin were intolerable, but I’d have tried to put up with it if it had worked. As my bladder doesn’t empty fully they thought self catheterising was the answer. At least now I do that there’s not going to be infection due to urine retention,
I had to smile at your en suite, Not got to that yet. On a bad night I get up five times to the loo. On a good only twice.
Other people on this site have said Botox has been good for them. Time will tell, and I’m cautiously optimistic.
Oh, and self catheterising id no problem, I resisted for a long time. It’s likely that the Botox means I will have to self catheteriśe, but I’m not worried or bothered by that. Eve xx