Hello me hearties (phew that hemp choc still working).
Not been here for a long long time and I’m trying to catch up…fat chance of that though. I see new people have joined and many of the regulars still here.
We all know the roller coaster of PPMS is a slow downward slide and it gets us down. CoVid & restrictions makes everything more difficult.
I’ve noticed for quite a while that my mind isn’t working quite right and I’ve had the myriad of tests, MRI’s & CAT scans. Fortunately, there is no further significant lesions or active MS since January this year. Even though the effects seem to be worse, there’s no more lesions. Here’s the But - Unfortunately, I’ve been diagnosed with Cerebral Vascular disease and evidence shows my left temporal lobe in my brain is slowly shrinking and parts have died off (the locum words). It’s also too close to Vascular dementia and that title is under consideration. So not ruled out
It explains a lot really, my behaviour, lack of tolerance, easily distracted. I forget meds, forget Mr C has made me a lovely cuppa, sometimes get distracted several times before getting dressed and then it’s not worth the effort.
I know some of you are a lot worse, and many others are too, it still doesn’t stop my self pity and depression. I don’t mind for myself but I hate my dependency, especially on my hubby. He’s 70 with diabetes, high bp and arterial fibulation.
No use complaining, but it’s good to shout sometimes isn’t it.
Hi Chrissie i am sorry to hear this as though MS isn’t enough for one person.I have thought for a few year now i have something more wrong too like you describe.Theres lots of similar things happen to me but i keep putting off saying anything hoping it will all go away.I wish.Is it the MS thats caused it do you know? x
Hi Chrissie sorry to hear your news. This is the place to have a rant we all know how hard it is to cope. I hope you get some solace in sharing, we can’t help but you can unload here and we understand
Hi Chrissie sorry to hear your news. This is the place to have a rant we all know how hard it is to cope. I hope you get some solace in sharing, we can’t help but you can unload here and we understand
Hello Chrissy , I really felt for after reading your message, what a hard situation to come to terms with . I’ve found my cognitive is not what it was and I’m constantly in fear because my Nana had alzheimer’s disease. I’m nearly 55 . I wonder if stress makes everything worse too. I like Bouds suggestion about brain games and singing . Its unfortunately part of getting older we seen to add more disabilities to the things we already have to cope with . Please keep talking to us on here , I feel as if I’ve been so overwhelmed with things that I haven’t been on here as much recently but I always feel as if i belong when i come back on here, it’s like we are all coping together and supporting each other . Michelle and Frazer xx
Chrissy I’m so sorry to hear this. It seems cruel that people with ms are bombarded by additional problems. Haven’t we enough to cope with? I often wish these health problems could be bottled up and given to murderers and terrorists who I feel deserve them and not the lovely people who suffer. They say you are only given what you can cope with but that’s really difficult sometimes. Yesterday for the first time in years I was unable to get out of bed except for bathroom visits as my bones were so painful. I wish there was something helpful I could suggest to help, but like the others i can only offer to your rants which you’re welcome to share. Take care Cath x
Oh Jackie what an awful thing to happen to you. I’m tearful on your behalf as I type this as I can only imagine how frightened you must have been. I’ve experienced both the incontinence and the despair of not knowing how I’ll get back to the car or home, but separately.and for this to happen after an emotional service makes it even worse. I hope this doesn’t put you off going out again, it was very brave to try to walk it though, and you did make it home.
I think the loss of dignity is one of the worst things we have to cope with. Keep your chin up. You managed something I wouldn’t even attempt. Be proud.
Chrissy. Your opening post has been lost, but you have every right to feel depressed and have self pity. I hope your dementia is slow to progress and that you and your husband stay relatively happy together for a good while yet. Life really isn’t fair.
Just caught up with this and thanks so much to all in here.
Hey Jackie V, no need for sorry’ s here. I hope you feel brighter, even a tad.
Things are not quite the same for me, just steadily worse… well that’s the job of PPMS isn’t it. To slowly deteriorate. BUT… my attitude can alter so much.
Like most of us, I have a few good days & feel full of Vim & Vigour (as my mum would say). Those days are great, I listen to music & dance in my head, I sing with my lost forever voice, which used to be brilliant, and I pretend. I pretend all is fantastic. That re-reading the same book five times is a fab bonus every month, especially as I forget the characters, plot and, most importantly, I don’t know how any of my books end even after several readings.
Groundhog days with CoVid lockdown (or lock in), is affecting us all.