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Funeral...

Hi, I’m just back from a funeral of a family friend (too many years to mention) this lady was 90, a good innings, she had not wanted to be here for a long time! It made me think what would I say (if as a corpse I could talk), ‘thank ££££ it’s over’, am I being a realist or am I secretly depressed?

Hi love, I don’t know if realistic or depressed. I know I sometimes feel the same. I’ve had a particularly bad couple of weeks (worse than usual and I’m not usually great) and certainly times when I wouldn’t mind popping my clogs.

My 98 year old neighbour wants to go. She’s Catholic and keeps asking God why he won’t take her. She’s had enough. Too tired all the time and all the problems of old age except her mind is still sharp as a razor. So although I will miss her very much when she does go, I will know it’s what she wanted.

I think in a way this makes it easier for me… I am surrounded with people with various health problems so it sort of makes it normal and I’m always amazed how old people can laugh about it. Laugh in the face of death and laugh at their own health problems.

So I don’t know what to say to you M… except to say I know how you feel. I try my best to keep positive and enjoy the small stuff… something I’m always telling other people to do… but yes it sometimes really does my head in.

Well there is one thing we do know for sure… we are not here for ever.

Sending you lots of love M. Wish I was there to make you a cuppa and have a good chat.

Pat xxxx

Hello Pat and hellMS Realistic…I think ! I’m 61 and live a life far less active than my 91 year old mother in law… I try to be positive, I enjoy my grandchildren, my dogs and my birds, however I can’t play with my grandchildren , I no longer am able to walk my dogs ( don’t worry they are fine…someone else kindly does it for me) and birding these days is from inside looking out! Bad days seem to be the norm and acceptable days ( I wish I could say good ) are few and far between . I surprise myself that having led a very active and busy life up to the age of around 42 I am never the less relatively content with my now strange little life, however there are many days when I can’t help but empathise with the folk who are brave enough to take themselves off to Switzerland. I would never do that to my family but surely all of us who have progressed to the point of being unable do practically anything must have many days when we ask ourselves…can I really cope with this for another 20 maybe 30 years? Gosh …I sound so miserable…I’m not really…well, not all of the time! Thanks for listening, Best wishes, Nina

Cheers guys It was actually easier when there was nothing for Progressive, so many good reports on Famprodine etc THEY are messing with my brain!Take care folksM ((((hugs))))

Hi Nina… yes I know exactly how you feel. I’m fine too… most of the time I manage to stay really positive and I don’t crave for the ‘big’ things that I used to love… can’t even bear the thought of going on holiday… but sometimes, sometimes it just really gets me down. Oh I just want to pull on a pair of jeans and trainers and walk up the damn road!!!

My mother is 86 and much more active than me. I can’t believe her energy!

It’s good to sometimes say how life with thing called MS can make life so bloody hard!

Hi M… I think ‘hope’ can really do anyone’s head in. I remember once at the bad end to a relationship I realised it wasn’t the break-up that was killing me but the hope that the phone would ring and things would be ok again.

Not really the same though… as there IS real hope of new treatments for us ppms’ers, but when, when, when? (and that relationship was really a no-hoper!).

I think the whole ccsvi thing taught me a lesson. When that turned out to be another false hope I decided never to get excited again… take it all with a pinch of salt. Easier said than done though.

Anyway darlings, here we are and nothing to do but get on with it!

My crab-apple tree is still not in blossom… but the buds are just about to burst forth and I’ve had a young robin redbreast feeding from my bird feeder… a very charming and confident chap he is too. For all it’s pain this world is a beautiful place to be.

Love Pat x

Hi All

Realistically I think that sometime or another we have all had these

feelings, and who can blame us with this crappy illness, but given time

and somehow we seem to get past it and a more positive vibe returns,

but there is no quick fix to make it happen, just patience I suppose, but

I totally agree with you all, it’s bloody hard.

Hang in there everyone, Spring MUST be on it’s way, and I am sure that

will help positive thoughts to occur.

Take care everyone, one day at a time.

Pam x

Hello all.

As you know I had my PPMS label ripped away and was given one i`d rather not have.

It seems MSers can suffer more ills than those with ISP. There is a 50% chance my kids could get it.

But it has taken a lot of my abilities and i need someone to wipe my bum for me…so all dignity has gone! My bladder now plays catch me if you can all the time. I think about a supra pubic catheter…but the in-dwelling one i had for 5 months…was an absolute pig!

Do I want a tube sticking out from my tum, with a bag of wee sitting on my leg? Nah, I dont.

But wetting myself is happening more these days. Dilemma!

Even with all my difficulties, I still wanna be here…amongst a family I love dearly.

I wanna see little Emily, who is 4, grow up and become the all sorts shopkeeper, she tells us she wants to be. Must be a £ shop, eh?

Life is precious…even when it`s a swine!

luv Pollx

It is so tough to live with this some days - watching much older people walk quite easily is a real killer. I see hardly anyone of my age struggling to walk with a stick like me (I’m 48) and I hate it. There are some days that you wish it would all go away but you know it never will and that is horrific! But you keep going and some days you realise that you are glad to be here, that others are glad you’re here! Keep going M, hopefully a good day will come very soon! Teresa xx

Hi, I phoned the MS helpline yesterday it was a bit like talking to you guys. I work very hard at hiding behind a facade ‘why don’t you drop the facade’? We chatted for a while about how I was feeling! What I could do? Not bally easy questions in the end its down to usYip I know, so the secret (not very well kept) I admit it I’m depressed and I’d like help so I phoned the duty doctor at our surgery. Usual crap offered CBT, councilor etc been there done that. If I’m saying ‘why bother’ ‘what’s the point’ how about trying antidepressants? Eureka momentfinally, the penny drops! I know it’s not a quick fix but I’m giving it a damn try

Hi M

Glad you are getting some help, hope you feel better soon.

Pam x

M it’s a very good decision. Why suffer when there is stuff out there that can help???

You go for it my darling. I have even found taking Amitriptyline… even in low dose… helpful. I used to wake up every morning angry and having an argument in my head with everyone I knew. Went on the Ami and lo and behold… my mornings are sane again.

I hope you can manage to get hold of them today.

Good for you hon… for phoning helpline and then phoning GP. It takes real guts to do these things and it just shows how strong you are and what a survivor you are. Don’t you ever forget that M… you are a fighter.

Take care hon,

Pat x

(SNOWING IN LONDON )

SNOWING IN LONDON I just had a wee nap and cooked some tuna for lunch, sorry Pat but the sun is shining here! I’m glad I’ve forced them to see that I am struggling, OR have I forced myself to see I’m struggling? I don’t know what I would do without you guysM

You’re already are sounding better hon.

When younger I used to suffer from depression and I did learn one important thing… once you admit to yourself that you’re depressed it somehow makes a big difference.

Denial is a real killer.

The snow is really coming down now and settling… I’m sick to death of this bloody weather. I can’t be bothered to wrap up and go out in it. Haven’t been out since Friday… well that was actually cos I was so bad over Easter… but all the same. I always said I’d never move abroad again but if I win the lottery I might think differently! (ha chance would be a fine thing…)

Pat x

Good decision M - hopefully this will help you to find a much brighter place to be in soon. Is it any wonder any of us get depressed with this? I do have a tendency towards it as I had PND 3 times, after my 2nd, 3rd and 4th sons. Atm I think I’m OK but will see the GP if I feel I need antiDs. I hope they kick in very soon and help you to cope M. I’m sure this is the right thing for you right now. Teresa xx

PS - snowing here too (Hampshire) but luckily not settling! xx

If I win the Lottery maybe we should all follow the sun?? They did say to watch out for euphoria -not uforiaBring it on I quite like euphoria, take care M

Fingers firmly crossed for you, M! Take care, Best wishes Nina