i have had PPMS probably since 2000, but diagnosed since 2016. i have done really well but when i lost my husband over time my symptoms declined and then i lost my lovely dog of 16 years and i have had to move 2 times.
I had a heart attack was hospitalised last year, then got covid in hospital, and since i have had other things. Now suffering with a trapped lumbur nerve which is wiping me out as it is messing with my MS, my bladder and my bowel.
MY social worker wants me to have care, she keeps pushing me. i iive on my own, and am housebound.
I can just about put a cold meal like a mixed salad on a plate, dont eat hot meals, i managed to get to toilet just with my rollator my place is tiny so i cant use my wheelchair inside so the social worker is trying to move me to a better adapted place. I have a commode by the bed for night time.
I am just about had it now, the pain is too much for me, the constant battle to do things without effort wipes me out. I foolishly was persuaded to get a little rescue dog she is 16 has had so many illnesses but to be fair if i didnt have her to look after i think i would have just given up. I have 2 daughters who hardly see me they have their own lives, so mainly its delivery guys, my cleaner who has been with me 14 years, and the dog walker.
i feel if i accept 10 hours i might as well just give up. i dont know if i have the strength left to fight this disease.
how have other people coped and are any having care packages?
Any tips on how to make life easier.
I live in indpendant sheltered mostly elderely who moan all the time, so going to lounge is not an option and right now to get to it would be too draining.
i have just become a miserable old women.
sorry to make your days more hard work with this question, but just wanted others perspectives, i am 72 in a few weeks.
thanks.
Hi sorry i wasnt moaning, I was asking a question. Feel bad now it appears to have come out like moaning.
I am genuinely worried and upset and in a bad place right now.
Thought asking on here would be a good place as others will be in same position.
anyway sorry your also in a bad place. i have made the decision now they have me a package going to give it a go.
If anyone else is feeling the same way i contacted my Adult Social services and they have been amazing and kind and helpful. so dont hesitate to do the same.
have a good weekend.
Sorry crazy chick I really don’t have an answer, I have SPMS, had it for nearly 17yrs and yes things do get a lot worse, pain, fatigue and the list goes on, thankfully my hubby is still around, we’re in our mid 60’s, but if he went before me I don’t know what I’d do, I would be in a very similar position, so I’ll keep an eye on your post and NO of course you we’re not moaning, just seeking advice, good luck, chin up and I hope you get an answer that will help.
Oh CC, this saddens me. You and I have been friends here for several years, so I hold you dear.
Re care…you know I’ve had this a while…12 years now.
My PPMS is on the move…my left hand has little movement…arm is difficult to lift . Right one has signs of same.
Care for me is imperative…full personal care, outings, sleepovers.
Hi bouds, yes we have been on a long journey together havent we. sorry your PPMS is on the move, mine too. i think what has made it worse is this weird pain in my right leg they thought i had gauda equine but lumbur MRI showed a mild trapped nerve, but pain is just as bad, and bladder and bowel all over the place.
I have had a chat with my social worker, and we have managed to agree a care package. i want to keep independance as much as i can, lucky i dont have your hand issues, mine is all spinal down.
i struggle putting socks on never done that before and often just wear the same long sleeve tshirt all day and in bed lol. i have so many nice clothes whats the point as no one comes to visit much.
anyway having someone in for 45 minutes at 8am, get me organised for my day and help dress if needed empty my commode which was a huge issue, and sort out my bed, and if time put a cold plate up for lunch. i dont eat hot, as i have no cooker as its not safe lol. then half hour at 4.30 to get things readly for bed, including a bit of supper and get organised. I go to bed at 5pm to honest if i didnt have my rescue dog who is 16 i wouldnt even get up. i have help with her so she is ok.
they have given me 2 hours for someone to get me out i have a lovely electric wheelchair but cant get out of the door now with it lol. jee i am 72 august a flipping mess. i miss my husband so much and really wished we had gone together growing old on your own is the pits. i believe mine started 2000. well i know it did, first symptom was optical neuritis but then it went quiet until 2007 when a few more things got added lol. and diagnosed 2016.
thanks for taking time to answer i really appreciate it. oh i had a heart attack last year and covid and still going lol. xxxxxxxxx
hi jean, thanks for answering. yes this is my issue i lost my hubby in 2017 and slowly this is when things went down hill. i am so depressed moved 2 times, they went me moved into adapated now but there isnt anywhere, i was even mulling over moving into a home i am that fed up.
i had no idea loosing my husband and my mum the year before would have such a huge impact on my life. i have 2 daughters i barely see they have their own lives. one only lives 3 minutes away, but is always moaning how she has pain. so i cant ask her to do much.
i do pay for a cleaner who has been with me 14 years, and she has been amazing.
i think i have sorted it now. i was worried i didnt want to loose all my indpendance as i need to do something or go mad.
again thanks Jean. xxxxx
You’ve done incredibly well so far. Well done, give yourself a pat on the back.
As for carers, why not. Ten hours a week isn’t that much and if they can do, or help out with things you’re struggling with your life won’t be quite so exhausting. It’s a bit of company too.
I’m 67 and live with my husband who’s quite a lot older than me and we brought in carers just a couple of mornings a week about five or six years ago to give him a break to escape to the golf club. I’ve met some interesting women, although at first must admit I felt anxious about strangers coming into my home. Staff turnover in the care sector is quite high and I’ve seen some women on a regular basis for a time before they move on, but on the whole it’s been a positive experience.
Don’t dismiss it. Maybe talk to your daughters to see how they feel about it.
Thanks hun. It has started with a few glitches like staff not turning up or being late which means i am just sat there so i just get on with what i need to do. they always blame it with traffic but i think the care company do not rota their routes properly.
all my girls cone from either sri lanka, india or ghana.
one is a pilot trained just needs to finish off qualification that was in aussie, another is doing phd in cyber security and another one has masters in business admin. One is also a midwife in ghana Jeez i feel like a dummy lol.
they are super happy people and my mental health is so much better. we have morning and lunch time visits. i love them such kind people. i know how tired they must be start at 6am and finish around 10pm for a massive wage of 10.75 an hour and 20 pence a mile. i think its disgusting. i know social services pay way more then that to the company.
but not sure at moment it is helping me physically definately mentally, i did kick start another uti but could have been stress driven.
i hate giving up but needs must i have been fighting this disease for so long just had enough of it now.
like you said 10 hours is nothing in the grandscheme of things. I know a ton of people on line with MS (RRMS) WHO have no help and seem to be way more active then I am. i am housebound now so i have to accept it. Mind you i am 72 in 3 days so not doing too bad, the girls cant believe my age lol. having PPMS i STARTED it late.
must admit its lovely having someone turn up and chat about things i miss my husband so much, cant wait to join him again.