Oh Cherry. I love your avatar. You make sure you go careful and stay in. I don’t like the thought of you falling.
Thanks to everyone for your supportive words. They have really helped. I am gonna still rest up today just in case.
Shazzie xx
Hi Shazzie
Sorry to read you have had such a horrible time with the ghastly ‘ms hug’
Take it easy and lots of loving ((((((hugs)))))) from me
xx
hi shazzie
like others here, sorry to hear that you’re having a crap time. i’ve not experienced MS hugs before but they sound lousy. hope you’re feeling better and appointment goes well tomorrow,
with nice hugs, fluffy x
Thanks Shazzie, fortunately don’t think it’s a lethal outside as last night, no half melted snow to turn into sheet ice, so should be ok getting home. Tomorrow tho not going out, bad weather expected, Hot choccy & cookies. Mmmmmmm
shazzie
take care of you!
thats an order! its easy to be bossy behind a screen!
ellie
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Oh gawd, I can relate! Had a really hairy walk to the local Tesco Express at the weekend. I didn’t really need or want to go, but, cheapskate that I am, I had a £10 cashback coupon that was expiring that day, and I thought £10 was quite a lot to write off because I’m too lazy to go out, and also that the walk would be good for me. The route cuts through a small nature reserve.
Even though it had been bucketing AND cold, I somehow never even thought about it being muddy and/or icy until I was well on my way, and had a horrid surprise that it was both: icy, muddy slush.
Foolishly, I did not turn back as soon as I realised my mistake, but pressed on, hoping to reach firmer ground soon.
Instead it just got worse, so I had sweating palms from trying not to fall over, and several near misses. I thought again about turning back, but by that time reckoned I was over halfway, so going back would be worse (and I would write off the £10, after so much effort). So I carried on right to Tesco’s.
BUT, my legs are still aching today from trying so hard not to fall over. Don’t know what I did to them exactly, but I’ve got spasticity in them anyway, and something about having to work so hard not to fall has made it worse.
There was no way I was going back the same way, but loaded with shopping this time - it was bad enough without shopping bags. I knew I wouldn’t be able to keep my footing and balance the groceries too. So I got the bus back!
Tina
x
Oh Tina, its horrible isn’t it, only had a short walk to and from the bus stop, it was 1030 at night, it had been sleeting/snowing and had half melted and not drained away before it froze quickly, skating rink!!!
Managed not to fall, despite the walk from the bus stop to my flat is downhill!! don’t know how I did it!!
Fortunately, its now gone and not come back for now!!
Keep safe (stay in, drink hot chocolate & have cookies)
Cherry x
Y’know, it’s strange, because looking back, I’ve always been scared of a bit of ice - much more so than most people, I mean.
I’ve only got to see a bit of frost on the ground to be very hesitant, and I remember years ago there was a footbridge on the way to work I wasn’t confident enough to cross when it was icy. I used to have to set off extra early to compensate for the fact I wouldn’t be using the bridge, and would have to go a long way round. It’s not normal, is it, for a young woman in her 20s, as I then was?
I wasn’t diagnosed 'til my 40s, but often wonder if I haven’t had MS at a low level for most of my life. My neuro now accepts we might be talking 20 years. It would certainly explain why I used to be scared…er…witless of that bridge! It was quite a well-used bridge over a busy road. Lots of people use it every day, including many college students.
I’m sure if it was really such a deathtrap as it always seemed to me, I wouldn’t have been the only one avoiding it - everybody would have. So looks like there was probably something wrong with me, then, doesn’t it? Even all those years ago!
Tina
x
Thinking about it I’ve always had a problem with ice too, possible I’ve had MS for approx 10yrs that I can trace back (possibly longer). One thing tho I love the snow, the fresh stuff, feel ok walking on that, no problems. Perhaps I’m just strange
Cherry x
Ahhhh. What lovely messages from all my lovely friends. It means so much.
I’ll let you know how my appt goes this afternoon. Gonna ask lots so will probably be in there for ages. I don’t usually say much but am gonna ask about the Rebif I am using for SPMS and also the horrible hug.
Love
Shazzie xxx
Hope your appointment goes well. Thinking of you.
Cherry x
Hi you lovely lot
I saw my neuro yesterday and he said to up my Baclofen dose for the hug. He said this would help so am trying that out before I think about the Amitriptylene. Fingers crossed it will help.
Must admit I have felt much better over the past couple of days. Rest has really helped.
Hope you are all doing ok and thanks again for all your kind words.
Shazzie xx
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Hi Shazzie,
Glad your feeling better, hope the drugs help you more when they kick in.
Cherry x
Thanks Cherry. You have been a real help,
Shazzie xx
Aha, good - I thought Baclofen before the neuropathic painkillers, as I don’t believe it is a neuropathic pain.
Baclofen and diazepam have been good stuff for me. Nothing fixes everything - which feels like stating the obvious - but I’m sure I’d be in a worse place without them. Ordinary (non-neuropathic) painkillers my also sometimes help with the hug. Muscular pain can be treated with conventional painkillers, although it’s probably preferable to address the spasticity or spasms that are causing the pain in the first place. Nothing to stop a two-pronged attack, though; treat the symptom AND the cause.
Tina
x
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Thanks Tina.
By the way, I noticed all the dementia paperwork at BraMS.
Shazzie xx
I know, me too (the dementia paperwork, I mean).
Keep wondering if I will run into my friend there one of these days, but I’m guessing they hold the MS and dementia clinics on separate days or something, as there was no overlap when I was there - everyone in the waiting room had MS (not that you can see by looking, but they were openly talking about it), so seems the facility is shared, but not integrated.
Spoke to my friend briefly by telephone before Christmas, but things are really quite bad. She knew she has dementia, but didn’t know that I knew - even though she must have told me about a year ago, and we’ve met and discussed it since.
So she thought she was telling me breaking news, and I had to gently tell her: “It’s OK, I did know - that’s why I’ve been concerned about you.”
I know it’s a bit morbid, but I sometimes wonder if I shall ever see her again. She is not able to drive anymore, and I never have, so I don’t know if I will ever realistically be able to visit - especially as my health deteriorates too. I reckon I could just about manage the bus at the moment, but I think there’s only one an hour, and there’s a long walk both ends. Not going to be something I would ever do a lot, and I don’t know how long it will be feasible at all.
I think she still knows me, but she was keen to get off the phone quickly. She said it was because she’d had to go outside to get reception, and it was cold - which may have been true - but I wasn’t entirely convinced, and wondered if it was an excuse to conceal that she was out of her depth in the conversation. I wasn’t intentionally trying to test her or tax her, of course. All very basic stuff: “How are you? I’ve been thinking of you! Did you move into the new flat alright?” (She was having a ‘granny annexe’ built, attached to her daughter & SiL’s house)
It’s all quite depressing. I suppose we have never been “close” friends - sometimes I didn’t hear from her for a year or two at a time, unless she wanted something. But unlike many adult friendships, it did still survive, over a period of years - I’ve probably known her about 16 years now. I knew there was a big age gap - she’s probably in-between my generation and my mum’s, but I didn’t really envisage anything happening to her - not for ages yet.
She was always very young for her age, smartly turned-out, and much more positive and go-getting than I generally am.
All very sad. 
T.
xx
Oh dear Tina that is really sad. It must be difficult for both of you. You must feel as if you are walking on pins not wanting to say the wrong thing and she must also feel very conscious of not saying the right thing. I really feel for you Tina.
It was probably true that she needed to go outside to get a better signal. We have to go outside too if our mobile rings. Perhaps it will be easier in the summer eh? I’m sure she appreciates a little chat with you from time to time.
Yes. I reckon you are right about dementia having clinics different days to MS. Also, I noticed Hannah, the receptionist, hasn’t been there for a while. I wonder where she has gone.
Just me being nosey I guess.
Shazzie xx
Glad to hear you are feeling more like your old self Shazzie. I hope increasing the Baclofen dose helps with the rotten ms hug.
Thinking about dementia, always makes me feel sad. Reminds me of some loved ones of patients with dementia, I helped look after. After one particular ladies husband died, she told me, it was like saying goodbye him all over again…very sad.
xx