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What a morning! Neuro physio & living with ppms!

Hi all, I had forgotten all about the neuro physio coming today!

Very nice woman, but last time she was here she had suggested going to the gym… and was going to make an appointment to meet me there. Today I told her this isn’t going to happen. By the time I’ve got dressed, booked and waited for a taxi and got to gym, I’d have to turn round again and come straight home to bed.

So I took the time to explain exactly what it is like living with PPMS… and she listened & was understanding. As I said to her, the last time I went out on my scooter was a week ago today. I know to healthy people that sounds terrible… but would you want to go out to the shops if you had a bad dose of flu??? Well that’s what it’s like for me 24/7.

It’s ok. I live with it. I have my lovely gang on here (yes I told her about you guys and how much this board helps me). But I can’t push beyond my comfort zone. I’m too damned ill. BUT I am doing the exercises she set me & the swelling on my knees has gone down somewhat.

And I’ve had the HUG all morning… and then when I got up to see her out I realised I’d had a bowel accident (although was too embarrassed to mention that to her).

Well… that’s been my morning. I’ve just taken half a baclofen to see if it will rid me of the damned hug!

Just needed to get that out of my system. I always make a point of being positive on here… but sometimes we all need to say it how it is… and then of course just get on with it. That’s what we do… and we all do it courageously.

Typing is very weird on here today… there’s a sort of delay to it.

Love to all,

Pat xx

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Pat

It is always the way, my physio said go to the gym and not the swimming. Now when i mean swimming it is a quick swim, a gab with friends in the pool and home not an actual swim, anyway the next visit when he spoke to me he said did i actually tell you to go to the gym now physio is indian, so said you were obviously having a blond moment, this condition can be very invisible at times and i believe folk need visual or they dont get it. Hubby being a perfect example my legs are not working at the moment and i live just outside glasgow, would like to go into glasgow saturday as everyone is saying it is so vibrant at the moment said to hubby maybe need to take the wheelchaIr, answer was you have two days things will be different dah

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Pat have a hug from me I am number 13 today wich is my birtday (not today the 13th of october) I am th 13th on the board plus one anon who may be who has just replied to you, She is right many people try to compete with us over how bad they feel. Sorry your feeling so rouggh at the moment maybe we will all feel a bit better when it cools down thats not a moan just a Don thought put into type. I cant even think of a joke to cheer you up. Maybe we both should go onto YouTube and watch Cats doing stupid things that always makes me smile.

Lots of LOVE

Don

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Oh Pat, if I lived close by I would come and make you a cuppa, would probably spill more than half of it, but hey the thought would be there.

Sounds like its a day of rest for you what’s needed, have you got a good book or is there anything on the box of interest?

I do hope tomorrow is good for you, certainly can be difficult dealing with this ms malarkey ((((((hugs))))) but all your buddies here understand.

Pam x

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Pat what a horrid day you’ve had. I think it’s time to sit down, put your feet up and have a cuppa and chocolate. You’ve earned it. That’s what I’m doing now (without choc as I need to lose weight) but sat watching Prison Break. I’m having a very tearful day so hiding from the world. Well, everybody but my forum buddies who don’t mind tears. Take care

Cath xx

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We don’t mind tears Cath, in fact I too have had the tissues out, my left foot is swollen but not painful, and I don’t want to go to the gp.

Can’t think I am the only one here who is completely and utterly peed off being poked and prodded about, and don’t want more medication. I am sat with it up and hoping that will do the trick, fingers crossed.

Thinking of you all.

Pam x

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Sorry to hear you are tearful… you know we all understand on here!

I sat in the garden for a while and thought, well what the hell, I’m still here… yes with MS but I’m still alive!!!

Can’t do choc’s either because of need to lose weight!

Thinking of you Cath… none of us mind tears on here… in fact I think they are necessary and healthy!

Pat xx

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Thank you one and all.

Feeling a bit better… and a lot better once I read your messages!

Hope everyone is doing ok?

My cleaner has gone back to Mauritius for 6 weeks so I’m trying to have a little tidy up as 4 members of my family are coming to see me on Saturday. Not that they would mind one bit if the place was less than perfect… it’s only me who minds!

Love Pat xx

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It’s good to let off steam now and again, I hope your Physio went away and thought about the things you said to her. It might give her more empathy which is sometimes missing in the professionals we come across.

Sorry you had an uncomfortable morning, hope your afternoon has been better.

Jan x

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Hope you’re feeling better today Pat. Yes, we have ms and its about time these people like physio’s have their eyes opened to see the realities of our lives. It’s so easy to treat us like couch potatoes, they don’t see getting dressed as a full physical workout like we do. Good for you telling her, and hopefully now she’ll ease off you a bit.

Pam I hope the swelling has subsided, has it been very hot where you live or have you hurt it? Are you prone to swollen feet? Some people seem to get it regularly. I can understand your reasoning for not wanting to go to the gp, like you I get fed up with people who think because we’re not healthy they can prod and poke to their hearts content. When I was in hospital they did a big ward round and the consultant tested my reflexes for the juniors to see how abnormal mine are and test them, so he did them a few times to demonstrate it. They were all fascinated and came back afterwards to “have a go” as it’s not every day they see the abnormal. And as an ex nurse I understood this and accepted the request but never imagined just how enthusiastic they’d be, all wanting a turn and each doing them a couple of times at least to make sure they’d done it right. And being so young and enthusiastic they weren’t gentle. I had a few very sleepless nights. Now I’m more careful when I’m examined!

Well I hope you’re all well. It’s very overcast here and due to rain for the next few days. I hope that that doesn’t mean summer’s over for us, I’m definitely better when it’s warm. Take care

Cath xx

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Hope today will be much better for you Pat. Look after yourself! Well done explaining to the physio, that can’t have been easy.

love Nina xx

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Hi Pat, hope your feeling better, Big hugs sent your way,

blumin’ physio’s can be very pushy!! And tend to give a sense of failure without realising sometimes. I would love to create some kind of costume you can put on that gives all the affects of MS with an inventory you can select from like make a cup of tea and the suit weakens your legs ,puts pressure on your lower ,back makes your leg shake, weakens the hands etc etc Swimming reach to take off footwear pain in back and foot not cooperating, lift clothing over your head applies pain to arms, ache in the neck, then get into costume pulling up with no muscle power and numb fingers etc etc, dizziness when swim too fast pain in neck, slipping on surface getting out of pool and not being able to walk back to the car cause legs wont lift. I’m off to Dragons Den’. A suit of insight, hehe.

pauline xxx

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sorry I’m late posting you, I’m still having trouble bringing all the topics up in the group, your always one of the first to reply to my post’s I just want youto know i appreciate all the support you have given me, I want to give as well as take. I don’t tend to have time to myself till the evenings to come on, so I’m usually one of the last to reply it doesn’t mean I care any less. Xxx

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that’s well put, Pauline. I’m a bit the same and I totally agree with you- a late reply or even no reply at all does’t mean I haven’t read posts and sympathised.

Hope you all have a good weekend, feel better and carry it through into the week. It should be a better temperature for the next few days anyway.

Kev x

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Pauline, you don’t need to worry about what time you post, we all know how tough it can be. I read all the posts every day but there are days I am just to knackered to construct a sentance but I still think about everyone and I press the like button in the hope that it will be sufficient until I can get my brain in order! Sometimes I find it easier to post in the night if I can’t sleep…as now!

You do some great posts, you’ve made me laugh more than once!

Take care,

Nina x

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Thanks hon.

Never worry about late posting Pauline! There’s all sorts of reasons why I post late … & often it’s because I’m too tired… or something else is going on & I can’t do two things at once … lol… MS really messes with multi tasking!

Pat xx

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Like the rest of you I post when I have energy and brain power, that’s why I was upset when we had no “like” button when they revamped the forum. While I’m apologising I’ll also say sorry for my posts which always seem so long. I’m just so used to explaining things and can’t help it. No matter how hard I try my short attempts seem blunt sometimes and I’m frightened they can be taken as being rude or nasty. I have a branch of my family who look for reasons to fall out with you and I make sure that if I write it can’t be turned round.

And I’ve done it again. Sorry folks. Take care.

Cath xx

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Cath, as far as I’m concerned, write as much as you like. You’re always interesting. In fact same goes for everyone on here.

Pat- where’s your snow leopard icon gone??

feeling a lot better today, slept v. well. Cooler.

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I enjoy reading the posts, whatever time they go on, it can really take your mind off things, even though nobody would wish ms on anyone, I am grateful to know that you all understand, and that I am not going round the bend.

Last night was cooler, easier to sleep for me, and whilst I am not doing a marathon today, I do feel more up for things.

Hope you all have a good weekend.

Pam x. Feeling proud as this time I done my avatar…without my grandson helping…yippee

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Well done Pam. I haven’t still got the photo I used but will give it a go! Might have to find a new one like Kev!

Nina x

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