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Lindyloo

monster paying a visit

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linds

Thanks Linda I got to have a bit of fresh air today. Hope you are a little better. Yes my clothes sometimes irritate me. I have a horrid itch head right now in the occipital area........there i go again with pittal He he xxx Nowt on digi anyway so dont fret Lindaxxx


Lindsx

 

 

 

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Shirl

Weird day, Guys & Gals. Went to sleep at 10.30 last night, woke at 03.30, wide awake, not going beck to sleep in any way. So got up, came into office, plonked around with PC, spent grand sum of



Shirley  "one day at a time"

 

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linds

Sometimes the crazy monster takes us out of the world of time but maybe we need this. We come back when ready. Nice to hear you are still crafting Shirl. Lindsx


Lindsx

 

 

 

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mayb

Isn't it great to have a man who is on side Shirl - that came out shril so I had thought it best to change it!! He is quite right and get back to that duvet.

 

I did have some terrible problems the first time my leg gave out onme and as it got better the foot in particular felt like someone had poured boiling water on it. This lasted for months and at the time I didn't realise it could have been treated by upping the gabapentin I was on. So I suffered on in silence. I had to build a bridge over my legs at night to stop the sheet from touching my foot, but during the day I found it was better to put on a pair of long socks. All over even pressure was easier to cope with than the brushing of trouser leg against skin if you get me.

 

When arms and or legs are playing up and aching I also find it helps to put on a tubular bandage. These are sort of streatchy and put a pressure on the place you are wearing them. It is odd but it does help in some way. I wonder if it is because these are false messages of pain etc so you confuse the brain by sending it a constant message of something else. Just my theory anyway but it does help me.


Mayb

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Lindyloo

Glad you got some fresh air linds- Hope the head settles soon;

 

Glad you got a bit of air too Shirl.... Its like learning to fly again...isnt it?? :wink:

 

Im not ready yet.... staying put in my nest for a while....hoping to get better soon...8-)

 

I like your hubby's advice Shirl.... I recall asking that same question to my O/H and getting the same brilliant answer.....Its so true....

Going to eat a dairy milk chocolate bar..... Mmmm.... :kiss:

also your words of

"One day at a Time" really helps keep my chin up...

 

Love Lindaxx :lolbash:


LindyLoo xx

" This moment will pass " (Bono U2)

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Lindyloo

Hi lovley mary

That sounds very much like the sensations i get with lots of pain thrown in too... I will have a go with the tubular bandages in differnet parts of legs that might benefit... (Can you picture that he hehe?)

 

I have numbness and loss of sensation and that pain on the slightest brush....its so weird...

It only started last week so my doc says to increase baclofen and take ponstan and rest for now....

My socks feel horrid too. my feet cant tolerate them.. On a postive note i am not any worse...

 

Love Lindaxx


LindyLoo xx

" This moment will pass " (Bono U2)

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Shirl

Linda & Mary - thanks for being there. Do you know what, some of the rest of the world have NO IDEA what they are missing. Going along their daily paths with not much care...the reality of something like MS is a great leveller - mostly horizontal, of course!

 

Will now wheel myself over to the craft table and see if my brain can come up with the goods.

 

Turrah for now xx



Shirley  "one day at a time"

 

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mayb

Perhaps its a case of let your fingers do the walking with the craft today Shirl. Let the brain get on with something else!!


Mayb

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Gaynor

Yes I've been adapting the 'one day at a time' theory....particularly as Bob has been quite poorly recently.

 

He's having a much better week tho thankfully and I braved the gym yesterday (after all those sweeties I had to!) so things picking up pace a bit more this week at this end.

 

Take it easy you guys :lolbash:

 

Gaynor

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Michelle

I get very sore skin, and can't really wear tights. Total pain in the rear, as having Raynaurds Disease requires that I keep warm. If I attempt to go out in the cold without tights or trousers ( sounds as if I go out undressed ) :blush3: I pay the cost with terrible prickles and itches. Drives me nuts. It's as if I can't go out and be 'normal'. :sos: Anyway, who wants to be normal :blush3:Me! So, I do empathise. It's not nice.

I did buy a silk dress yesterday which cheered me up. We have Andrew's dad 70th birthday bash to attend,so I wanted to wear something nice and colourful for a change. You should have seen me trying to get into my sexy body shaper/basque. My poor pregnant daughter whose nearly due, had to help me pour myself into it. She drew the line when it came to doing up the saddle area :love: I was in a terrible state by the time I got into it. Needless to say I wont be wearing it on the day :lolbash:

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mayb

I remember one Christmas mich when I had a 'do' to go to. I had put on loads of weight and didn't want to buy a new outfit so I bought some 'body shaper' tights. Well what a night that was - I couldn't breath let alone eat and I felt that if I got a ladder in them I might well take off like one of those balloons when you let the air out!!! Diet followed in quick time and I was inspired to stick to it and lost nearly 2 stone - so some good came from those tights!!


Mayb

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Gaynor

doin up the saddle?!!!!! - Lol that did give me a giggle (sorry to laugh....aah dear)

 

Remined me of when you're in a changing room all by yourself hot and flustered and you get stuck in something - it aint funny.

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Lindyloo

Ooohh Mish thats funny.... Sounds like you are going for a ride....on a horse of course :blush3:

 

 

Its just my legs that are hot and full of sensation/burning, numbish in places etc so at the moment jeans/tights are out.... Really difficult finding what to where everyday?? its a pain in the :lolbash:

 

Gaynor glad you feeling a bit better... Thinking of poor Bob too... How old is he again? My Toby is getting on too and he takes meds for arthritis.... i dont give him tablets everyday...just every other day.... I also put cod liver oil in his food,,

 

It is so boring stuck in the house... I hope this passes soon..,


LindyLoo xx

" This moment will pass " (Bono U2)

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Gaynor

Bob's 14, and tomorrow we're at the vets again for a re-test to see if his kidney readings are better.

 

Lindyloo you take care and get better xx Bein stuck in the house ain't much fun :-(

 

Gaynor x

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Shirl

Just for the record, I have this daft (but highly necessary and extremely useful) catheter poking out of my tummy. So, no tight figure-hugging shapers for me. And the leg bag is securely attached to my right thigh with this net sleeve thing that is very Nora Batty (but highly necessary and extremely useful) so I can't wear tights ever.

 

So I have to have long skirts - am tall so this means 35" length - with knee highs. This leaves a gap above but under my skirt and means I remain modest when sitting down.

 

However, the left thigh is permanently blue.

 

Mental imagery allowed. Enjoy!



Shirley  "one day at a time"

 

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Michelle
:winkgrin:

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mayb

I can see it now - the MS People UK version of calendar girls!!!!! I think it might take more than a strategically placed iced bun to induce anyone to buy it!!!! I would be the one with the back of my head showing round a very enormous chocolate bar - naked lust!!!! We could have MICH dressed only in flight socks which are enticingly sticking out of the bottom of the duvet. I am still working on yours Shirl but I will think of something ................... Hmm how about you as a pop up in a hand made card with a giant pair of knitting needles and equally large scarf?

 

:winkgrin::jackass::snail:


Mayb

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Shirl

I'll take that thought to bed with me, Mary! Along with the dratted bag plugged into its overnight extension...I know how to woo my hubby! Good job he doesn't 'see' it!



Shirley  "one day at a time"

 

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linds

Hey Shirl, I always imagined you to be small in stature dont ask why?? Linds


Lindsx

 

 

 

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Lindyloo

I am normally a very open, chatty, love a laugh sort of person...

But when i get flare ups....I go into myself abit.... I tend to avoid my friends??? they would be friends that i have just made in the last 2 years or so.... I just dont know what to say.... I dont think they know what to say either?? anyone of you guys get like this??

 

I think i get a bit worried that they will see me like this and get a shock??? But i know thats silly...

 

Love Lindaxx


LindyLoo xx

" This moment will pass " (Bono U2)

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Shirl
Hey Shirl, I always imagined you to be small in stature dont ask why?? Linds
5'7" and extremely curvaceous (plump). :winkgrin:

 

I am normally a very open, chatty, love a laugh sort of person...

But when i get flare ups....I go into myself abit.... I tend to avoid my friends??? they would be friends that i have just made in the last 2 years or so.... I just dont know what to say.... I dont think they know what to say either?? anyone of you guys get like this??

 

I think i get a bit worried that they will see me like this and get a shock??? But i know thats silly...

 

Love Lindaxx

Sadly, last time my friend with the baby came in, she put him in bed with me while she made the tea. That was lovely - except I'd just had my catheter changed and that was why I was in bed! Bless her, she then sat on the other side of the bed and painted her nails (multi-tasking she called it - 'very selfish' I thought) . Baby started kicking about (bored silly, why do some modern mums never bring in toys!) and kicked my tummy. I was really upset that this was the level of support offered.

 

So, I am now being really independent, caring for myself through the day and waiting for the time - which will come - when I can accept other people for who they are and not what they can give/do for me. I think it's better for us all that way!

 

Sad though. Normally, I like nothing more that helping people, particularly new mums!



Shirley  "one day at a time"

 

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Akorah

My best friend is my daughter so im never alone really she walks with me to the shops and does my injection for me. she recently got married to her over seas husband and hes just as wonderful as she is. It will be lovely when he can finally move over here and i will have all my support here. My husbands great too but sometimes he finds it hard we have been together since we were 14 so hes the one who knows the reality of how ive been affected so maybe its harder for him. Anyway true friends accept you as you are sick or healthy! And if you want a bit of time alone to deal with how you feel thats ok too.I am learning slowly to not care what anyone thinks of me its how i feel about me that matters!


chelly xxx

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Shirl

Thank you so much for this reminder:

I am learning slowly to not care what anyone thinks of me its how i feel about me that matters!
I believe this, I know it, I really do...but it doesn't matter how old you are or how well-used to MS, it is good to be reminded!

 

Bless him, it's what my hubby has been saying for weeks!

 

I am glad you have the support of family, Akorah. I know what you mean about the ones who've known you longest finding this hard. My husband married me (over 3 years ago) knowing exactly how things are and how they would be.



Shirley  "one day at a time"

 

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linds

You sound gorgeous Shirl and you have a lovely open face....I am good at reading faces.

I have had a few fair weather friends. Lindsx


Lindsx

 

 

 

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mayb

I am glad to hear that you have such a good relationship with your family Akorah - I don't have daughters and although I am very close to my sons I cannot imagine either of them giving me injections perhaps it takes a good daughter to take that one on! I hope the days pass quickly for you and they are soon all with you

 

One of my friends is a carer and she often sees people with ms and all sorts of other disabilities and conditions. She is the only one I know who totally gets it right with me. She never fusses me but makes sure I don't overdo things, helps with carrying if we shop etc. Makes sure I have my stick before we shut the front door. I don't need anyone to do anything for me really as I am still very able on most days, with my own adjustments to life, but it is more comfortable being just me when you are with someone who knows, so you don't have to cover up your little mistakes and misshaps and can both laugh if you do something really silly like topple over when you turn around too fast. In the end only someone with experience of ms or cfs or whatever it is that you particulrly have to deal with, can be expected to understand and cope with the real you. Other people have no idea what it could be like and you can't explain it. I had not even considered the possible scope of the troubles I might face if I had ms until I joined this forum.

 

I think only the person you share your everyday life with knows the real and absolute you - and my husband, despite all the losses he must feel over my health and the limitations it now puts on him as well as me, is still my best friend so I count my blessings.

 

I hate to think of you losing a friendship because of someone's insensitivity to the problems you are having Shirl, perhaps it is worth another try as they might just need it spelt out in letters 10ft tall. Maybe you should only see this person on your terms - as a when you feel able to cope with visits rather than when they feel like visiting you. If they don't want to know the real you with all that comes with it, then just remember Pete is still there for you and the only one you really need. Of course there are all of your friends on this forum to count on as well. :winkgrin:


Mayb

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