I'm back (just about)

Primary progressive MS
1

Hi everyone,

Hope you are all doing as well as you can, like me I expect you are wishing

Spring to hurry up.

It’s been about 4 weeks since I was last here, and boy what a 4 weeks it’s been.

To start with my grandchildren had this cough/cold virus that floored them, then my

son got it and was hospitalised with pneumonia and 3 weeks later is still poorly. To

cap it all my hubby then went down with it and it gave him a chest infection, which

also floored him, but thankfully he is picking up now, but it has really shown how much

I can’t do and rely on others, and it is not a nice feeling.

So Spring please please hurry up, we all need some nice weather to get us going again.

Take care all

Pam x

2

Hi Pam, nice to see you hon… was wondering where you were.

Horrid to all get so sick… but seems you didn’t get it? The one small advantage of MS eh? Those viruses just don’t stand a chance.

Hope everyone’s feeling better soon. Yes it’s hard when we can’t get the help we need and esp hard when you wish you could help them more than you can.

Well this will cheer you up. The crab apple tree outside my window has got buds on and a tiny dots of pink blossom is showing… Spring, spring, spring!!!

Glad to have you back darling,

Pat xxx

3

Hi Pat

Thanks for your reply, I did get it but only a mild form, I think thats down

to the fact that our immune system is working at such a rate of knots.

I must admit with all what has gone on, I have never felt so lonely and down,

it was truly awful, makes you realise just how much we rely on family and

friends, and makes the future scary. I know I have been lucky (if that’s the

right word) with my ms cos it has been slow, but constant progression, but

I have had this for yonks now, and I am fed up with it. Like everyone I wish

it would just p*** off!

Good to hear about your crab apple tree Pat, must mean Spring is just around

the corner.

Take care

Pam x

4

Glad to see you Pam. Sorry everyone has been poorly. Fingers crossed that everyone is over the worse now. It’s so hard when the ones we rely on are ill - it feels very scary. Try not to worry though. I know what you mean about constant progression, I keep waiting for the plateau but it’s not forthcoming yet! I agree about the Spring - I can’t stand the cold any longer. I hope Pat’s crab-apple tree is a sign of things to come! Look after yourself, Teresa xx

5

Hi Teresa

Thanks for replying, yes it has been hard, also a rude awakening really.

I always try to tell myself I am ok, but this last 4 weeks have highlighted

my problems, made me get my head out of the sand I suppose.

The neuro told me 30 odd years ago, go home get on with your life and forget

about ms…fat chance! He also said a cure is just around the corner and after

15 or so years you will plateau. I truly believed him then, but I am afraid to say that

I now think he said this to make me feel better, and really it was just all "pie in the

sky", cos the corner is never ending, and I am still waiting for this b****y plateau.

I will get my positive vibe back I am sure, it’s just taking longer this time.

Take care, hope all is well with you.

Pam x

6

I’ll keep you updated on the crab apple tree!

Pam I’m so sorry to hear things have been so hard… well I know they’ve been hard for years… but sometimes it does seem harder.

It reminds me of something else I read on here few years ago. A neuro told someone ‘don’t make MS your hobby’. And it makes me so angry. When something is affecting you 24/7 how can you not be dominated by it? Yes it does play a huge part in our life… but how can it not? It is there ALL of the time.

Anyway hon just hang on in there and remember that we are here for you.

Pat x

7

Hi Pat

Thanks for your kind words, it means such a lot, and so nice when

someone truly understands.

I will get my positive vibe back, I just have to be patient, not very good

at that!

Pam x

8

Hi Pam, It is not easy to be positive and upbeat all the time. Most of us don’t manage it at all. I feel as if I have progressed again - my walking is worse and fatigue is impacting on my life in a big way. I have felt very angry lately. You know the drill - why me? I don’t know what to do except to keep on going day-to-day. There is no alternative or at least the alternative is unthinkable. I think it is very hard to be in our heads sometimes and our loved ones obviously don’t really know what it feels like. I think we all have highs and lows - you’re in a low I guess but hopefully a high will return in the near future. Like Pat says - this thing dominates your life. How can it not? Keep trucking on Pam and hopefully you’ll wake up sometime soon feeling more positive. I’m sure some warm sunshine will make all the difference (if we ever get any again!) Teresa xx

9

Hi Teresa

Thanks for your kind words, really does mean so much. I agree

it’s not easy to be positive all the time, but I will get back to that

place, I gave myself a good talking to last night!

This c****y illness makes you feel like you are on a track,

up one day and down the next, I get angry with myself, but not with

other people cos don’t mattter how hard they try, they just cannot

understand, that’s not their fault, even I don’t understand this b****y

disease.

Looking out the window today I have two daffs out…spring is just

around the corner (hopefully not the same corner as the neuro said the

cure was). My sense of humour has not been gobbled up by this ms!!

Take care and have a good day.

Pam x

10

Hi Pam, Definitely a good sign if you can still laugh! We have crocuses in the back garden, so I hope Spring is imminent! I won’t hold my breath though. Have just seen the forecast! Keep smiling! Teresa xx

11

Looking out the window today I have two daffs out…spring is just

around the corner (hopefully not the same corner as the neuro said the

cure was)

Pam… how can you say MS has gobbled up your sense of humour after making such a witty comment!

Pat xx

12

Hi Pat

You must have misread it, I said my sense of humour has NOT

been gobbled up by this b****y ms.

Glad your daffs are out, keep us updated on your crab apple.

Pam x

13

Oh Pam that’ll be my MS gobbling up my ability to read properly! Bloody double vision.

I’m always making these mistakes…sorry hon…

Crab-apple buds are a bit more open and I had sneezing fit this morning… always a sign that the tree is is ready for Spring.

Pat x

14

It’s alright having all these signs of Spring but where is bloody Spring? It’s nearly April and it couldn’t be colder! This is the longest Winter I’ve ever known I think. Is it too much to ask for some balmy weather? I could scream… Teresa xx

15

Hi

Yes, where is the spring I ask, I am sat here with a hot water

bottle, and it’s still b****y freezing. I think they even forecast

snow!

This has been one of the longest and hardest winters yet, or I

am turning into a big woose!!

Take care all and keep warm.

Pam x

16

Hi Pam, I was wondering about you too hun.

What a rotten time you`ve all had.

Hope things continue to improve.

Missed ya!

luv Pollx

17

Hi Pam, oh l do hope everyone is getting better, the suns out today it may make everyone pick up a bit, that or its the vick you have rubed on there chests keep warm. regards Jan

18

Hi Jan

Yes, thanks I do feel better than I did, helped by the fact

that my family have shaken off their problems (thank goodness).

Sat here looking out of the window, sun is shining, some spring

flowers out, gotta make you feel good, shall just be glad when it

warms up, same as everyone else I should think,

Hope all is good for you, take care

Pam x