brick wall...

Hi guys

I was hit with a brick wall of despair this morning, couldn’t move . What I have lost running through my brain and yet another year of what? More loss of ability, moving slower and what to look forward to?

I try to be so damn positive for everyone, not this morning. Then I thought I can share this with my matesI’m sorry about this but I do have youTake care, be safe M

Hey M - you are only human (sorry to break that news!) and if you didn’t get p****d off at times, then you would be a bit strange - you have EVERY right to feel as though the proverbial is hitting the fan. I’ve just read your msg of yesterday in which you were SO positive and hopefully tomorow you’ll feel like that again. Some days I just know that my thoughts are gonna be on the negative side and swamp me and then they can be completely different the next - obviously if you can’t move, it’s no surprise how your feeling. You certainly don’t need to apologise! I hope your day unfolds kindly for you. Here’s an astral hug. Dxx

Hi M, ditto what Munchkin says!

So whats this cant move about. Have you found it easier to move at all yet?

It does sound very worrying. if it isnt better by lunch time, ring the doc, eh?

My own inabilities are many, but i do have a duvet day sometimes. I`m having one of them today!

We struggle along, doing our best, trying not to show our true feelings of despair sometimes, yes it gets that bad, I know!

So I reckon we are entitled to have a day off!

My carer hasnt been today.she has a bad cold and doesnt want me to get it, so I decided to stay put and get the baby wipes out!

Hope tomorrow is better…for both of us, eh?

much love, Pollyxx

Hi M… I’m so sorry you feel so bad hon.

New year shines a light on the year past and the year to come. Best to try and forget it’s new year… it’s only really another day after all.

You are a rock darlin’, but it’s hard being a rock all the time (oh god there’s a terrible pun there!!!)

Hang on in there M… sending you a virtual cup of tea and slice of cake…

Remember M… you are cool … and this too will pass.

And Poll, sending you tea and cake as well darlin’… … hope your carer can make it tomorrow.

Pat xxx

Hi M Sorry that you’re having a rotten day. As you know we all soldier on day after day putting on a brave face but these low days always take us by surprise. Although, it is not really any surprise that you feel that way if you cannot move today. Poll’s advice about the diver day sounds good. Hopefully you’ll feel altogether different tomorrow. Keep the faith! Teresa xx

Duvet not diver! Darn predictive text!

Hi guys

You are the greatest gang a girl could ever have, it’s a year end year begins and a serious case of what the hell - does that make any sense?

You are right, cut myself some slack, taking time to smell the roses, remember to breath long and deepI think too much sometimes soHappy New Year, you are the v. bestM

Hi M

Try not to be so hard on yourself, you are entitled to take it easier

when you are having such a bad time. Sending some virtual flowers

to cheer you up (((((((((((hugs)))))))))))

Hope tomorrow is better for you and everyone.

Pam x


not used these sites before. Read your message and just want to put forward some hope. i appologies in advance if you already know about the treatment i am going to talk about. Was diagnosed in 2004 with relapsing/remiting MS after eyes decided to look seperate ways, within 12 months my right eye turned black, legs refused to work, began to loose voice, every part of my body was in pain and had lost more than 2 stone.

Started Campath trial in 2005 , which is basically a coctail of chemo drugs and am now walking talking and driving again, albeit with limits but don’t feel that i need to sleep all day. A boy who lived a few doors down from me came into hospital when i was starting my second week of treatment who was diagnosed with progressive MS. I told his mum about the treatment who then managed to get him on the same treatment. He now also is also much better than he was, and when i spoke to him a few months back (we have now both changed adresses ) he was getting about ok with no noticable MS activity.

PS i am no less frustrated with nurologists now than i was at the start.

hope this helps


Hi Stuart, Pam and the gang

Most helpful thanks, my Consultant and GP will not prescribe any thing other than Lyrica and Baclofen. Frustrating ‘brick wall’ they appear to work on the ‘first do no harm’ how about trying something!!!M

Hi M

i was thinking more of hope for the future. i think the Campath is a huge breakthrough in MS treatment, even the very cautious MS neurologist specialist felt that the future for MS patients is looking bright. They are also begining to trial this type of treatment for other neurologoical conditions, but as usual in the Uk it takes ages until it becomes a general treatment.

If you could have seen me before i underwent the Campath and see me now, you would think it to be a miracle cure.

But i do know when you feel so ill it is hard to think past one day.

I am also aware of how it feels when people keep telling you things are advancing just to cheer you up, btu after going through a 18 month period of having more than 20 heavy relapses to not having any for six years and being told that i should have very little activity in the future i want to share that genuine hope.

Life is not stright forward but a far cry from being be bound for months. All i need to do now is win the lottery

best wishes