Forum

a message to all who are really struggling

Good afternoon my friends!

There are several new posts from members who are finding it pretty tough going at the mo.

I`ve had a horrible week, and the holiday the week before left me worse than when I set off!

Most of this week has been spent in bed or seeing medical professionals. They have helped as much as they can, with their comforting and wise words. Boxes of medical supplies are cluttering up my conservatory. Nevertheless, they are needed and I have tidied them up, sorted out some drawers containing cavilon barrier cream, gauze dressings, waterproof dressings, sudocreme, senset soapless washing foam, special talc, scissors, anit biotics, urine bags and catheters…probably more stuff too.

But I feel better for that, as I was just shoving stuff from one place to another.

I was feeling really down this time last week. Today I found some oomph from somewhere and am ready to fight on.

When times are really bad and we just cant see the light at the end of the tunnel, if we visit our mates here, we can find some comfort in their words and battle on another day.

Our war is a long one, some daily battles we win, others we aren`t so fortunate.

But all in all guys, life aint that bad. There really are folk who are in a much worse state than us…no offence meant to anyone who cant see that at the mo`.

luvya all

Pollyxxxxxxxxxxx

As always Poll we can rely on you to put things in perspective. I also notice how many people were down at the minute. I have hugs for anyone who needs them. If I could I’d send you all some of my home made chocolate chip cookies - they are damn good cookies. Take care youse’all JBK xx

Hi, I bet they are good choccy cookies, BUT I MUST lose some weight! Hubby makes gorgeous ginger cookies and choccy cake…I havent sucuumbed this week!

pollx

Awww Poll. That is so nice.

There are a lot of us feeling rubbish at the moment, I agree. Like you say though talking to our friends on here really helps. There are some lovely people on here and they all mean a lot to me. There are a lot who deserve awards for the feel good factor that they give those of us struggling and that includes you Poll and Kelly. All of my buddies have helped me through the bad times I know that for sure.

Take care of yourself Poll. You need lots of tlc too.

Shazzie xx

Me again…you know this time of year can be adding to our low moods…we are moving into autumn/winter. Last years went on and on and on.............its a gloomy thought.

I am planning another Blackpool jaunt with my 2 carers for a few days in May.

Gotta have summat to look forward to, eh?

pollx

Of course it could be worse. But if this is the worst the persons fault, then understandably they’ll feel rubbish. We can only go by our own experiences x

hi poll, i’ve not been on here for a while but thank you for what you said. i came on here looking for some friends as i’ve had a bad month with loose of sight in right eye, left leg so feel rubbish as theres were my strong ones so now can not see as well but i can see the centre i go to there are young boys who have had no life i am so greatful to have had the time to do some things that i thank god for that. i can see that the people on here care about everyone.thank you all its good to belong some where!!! i want be going away again ooops !!! love kathy

hi poll and everyone i’ve just typed a long post pressed post and its gone so sorry i cannot retyp it so heres a shortened vershone sorry to any teachers on here but brain gone to sleep.i’ve had a bad month with lose of sight in right eye and lose of feeling in my left leg both were thegood sides so left feeling just lost and alone as all my abled body friend did not want to know so here i am looking for friends and support where i was sure i’d find it and its still here!!!

i am seriously guilty about the posts lately!!! i have posted one or two!!

Mainly it’s because i know you will all listen, i don’t necessarily do it for sympathy etc just to get it off my chest.

Every day i do think how lucky i am that i’m not in a worse situation, i feel for those that are worse off than me!!!

Poll you really do put things into perspective! well done on your productive day,i got a load of washing sorted and some shopping but tht’s about it! LOL!!!

oohhhh choc chip cookies mmmm sound yummy Kelly and Poll so do ginger cookies!!! I’m drooling at the thought of them!!!

((((((((((((HUGS)))))))))))) to everyone

And especially to you Pol!!!

Take Care

Kate x x x x

Don’t feel guilty hun, we’re all allowed to vent and this is the place to come x

Just what I needed to hear, Poll!

My glass is normally ‘half full’ and I managed to raise many smiles whilst in hospital recently for my treatment (which made me feel good too!). However, since I’ve been home, I seem to have slipped off the edge of a bloody large mountain. The spasticity on my left side is now rubbish, my muscle spasms are rubbish, the pains on every aspect of my head are rubbish and I’ve developed pains in my hips that were never ever there before. But, on Friday, a dear family friend was admitted straight into hospital with a Brain Tumour; from that point on, his life will NEVER be the same. This chap is a beautifully spirited human being who has experienced so much bad luck this year, it is truely unbelievable. My MS and my problems are now very, very insignificant. You are so, so right Poll, there is ALWAYS someone worse off! Thank you for reminding us all. Love & hugs from Tracyann xx

Hi Kate no, you mustnt feel guilty about posting when you are feeling down. Thats what we need each other for…to keep us clinging on when we are slipping into worse times.

We want to hear from you however you are feeling. We are all in this thing together.

luv Pollx

Hi Tracyann,

I am so sorry to hear about your friend and hope he recovers well.

You know, here`s an amazing story which I am wowed by.

Last winter, my sis in law in Canada was diagnosed with stage 4 cancer…the end…she had a brain and a lung tumour. She was given 3 months to live. The tumours were removed and she had chemo and radiotherapy. Last June, she was told she is now cancer free!!! We couldnt believe it! She has had a miracle. She told me she didnt feel ill, just dizzy and wasnt going anywhere.

Incredible, eh?

Regarding your problems…are you on anything to help with the symptoms? Have you tried baclofen for the spasms? They help mine. I wonder if the pains in your hips are due to a different bed or being in bed more than usual? I hope you feel better soon hun.

luv Pollx

Poll you are a lovely person. I also saw quite a few posts where people are feeling down and although my heart goes out to them, sometimes it’s hard finding words to help. And I’m sometimes too self conscious to reply to many as I know I’m not an expert.

I also wondered if the change in weather / seasons had something to do with it. I’m trying to see this as a time to prepare for winter and the increase in house bound days. I’ve also had the tidy up of bits n bobs related to ms, and now I’m sorting my craft room out. I never had time for this when I worked but now I’ve discovered new hobbies and tried with some success to enjoy my new life. I know I have restrictions and everything takes longer and tires me out much faster but I ensure that each day I find “me” time that I didn’t have before and my quality of life has improved so much.

I hope many of you can see the positives but as mentioned, we do all feel for you when you’re down and don’t be afraid to rant, the people here are wonderful and sometimes it helps.

Take care.

Min x

Hi Poll! Thanks for replying- I am not worthy!!. That is such an amazing story-Wow! There is hope and miracles DO happen. My fingers are crossed for him too. I am surprised just how nonchalantly he has dealt with it. That said, it’s like a diagnosis of MS etc. It is, what it is. There’s very little I can do now. It’s in the lap of the gods! As for my hips, well I have only developed the problem in the last week; one week+ after getting discharged from hospital, following my Campath treatment. I’ve never experienced anything like it. Thank the gods for painkillers! I have used Baclofen previously, but it did absolutely nothing for my spasms. I now take Tizanidine which seems to be far more effective. Definately, get most relief for my hips from using Paracetamol/ Ibuprofen combo! Thanks again. Keep happy. Love from Tracyann xx

What a truly kind and positive reply Min!

It is good to hear you are finding ways to accommodate your new life!

Most of us have lives which are vastly different to the ones we expected to lead.

It does take some dealing with and it takes a lot of deep delving to find the oomph to keep going.

We are still the same people only now we have a few interesting quirks!

Look after yourself.

luv Pollx

Thanks Poll. It’s true we have quirks now, that’s a lovely way of describing them.

It’s hard when these things that “happen to other people” become part of our lives.

Take care.

Min x