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new to this forum

Hi all ,

just a quick hello to everyone , I’m Pete and have been a MS “sufferer” for ten months now,I’m male,50 and all the professional people in my life call me a “freak” …(in a really nice way) as I’m “unique” because of my age and sex e.g. usualy this ype of MS hits young women not old farts like me ! I need a mate I can talk to as NO

ONE in my life really knows how to talk to me (except the wonderful MS nurses at hospital) and I have to admit that

recently I’ve been in a very dark place . I’m ex-forces and as tough as old boots …well ok …I was ! and I dont like

talking about how I feel but I think you guys (gals mostly) can put me right with this rollercoaster I’m on , I know I can’t

get off but it would be nice to know someone out there knows WTF I mean and has a similar emotional things that I’m

trying to deal with ! If this doesnt make total sense I apologize but its 03:10 in the morning and after a shit night I

found a bottle of JD which has started to make me feel better …damm now I feel like crying

Hi Pete Sorry that you’re feeling so low, don’t feel you have to be a tough nut on here! Everyone knows how you feel as they’re going through similar feelings and experiences. I’m 46 and have not yet received a final diagnosis but it should come when I see the MS specialist as my Neuro is sure that it’s MS but wants the specialist to dot the i’s and cross the t’s. I relate to the fact that people in your life don’t know how to speak to you. I think loved ones suffer from denial and awkwardness. I also have four sons and a husband and as you know the male of the species find it hard to open up! I often feel like crying about this MonSter and sometimes do, it’s perfectly natural to feel that way. This place is a great place to come and share as everyone is in the same boat. Hope you managed to get more sleep. Don’t be a stranger! Teresa xx

I went to a newly diagnosed day last week and couldnt get over it as there was 2 people there in mid 60’s who have just been diagnosed, this ill just takes over anybody, any time, any place, any age, so come on everybody lets beat it, put it this way, it isnt gonna get the better of me, I’m not ready to lie down yet, I’m in my 40’s and still got a lot of living to do, dont get me wrong still get the crying, miserable, long face days but push them to the back of my mind and see what the day is gonna bring, I’m under a lot of stress with selling my house and moving at the moment, so my sleep pattern is totally affected, cant remember the last time I had a good sleep, even the amitriptyline isnt working at the moment, as I say I went to a newly diagnosed day last week put on by the MS Society and there was lots of people there, I got chatting to a young girl just passed 20 who was very down and told her about this site, I THINK ITS BRILL, you can put down anything and people reading it are able to understand what you’re feeling and going through… this support it has given me, is immense, even though I’ve only recently joined, the past few weeks typing on this has been amazing and if we all pull 2gether we can beat this awful, frustrating demon thats inside us… x G

Hey Ironman, hang on in there… it gets easier… well at least you get used to it. Have you been on the ‘mutual support’ board? It’s for forces and ex forces. You will find lots of men on here on ALL the boards. Yes RRMS affects more women than men but there are plenty of men out there with it.

I see you posted at 3.10 am… hmmmm… thought about seeing the doc for something to help you sleep? Might be worth asking for something to make you feel a bit better as well… just for a while… help you get through it.

Take care and welcome to the clan. Make sure you come on here often. It helps.

Pat x

Hi Pete.

Welcome to the site.

I to am ex forces, but find this forum helpfull…

You have not been diagnosed that long,and this illness takes time to come to terms with it.

I can only tell you that you will not find the answer in a bottle,i have tried it,and a hangover and. MS is not good.

And i dont think you are a freak,there is no age limit to getting MS, from 6 to 86.I can only imagine what a 6 year old makes of this.

Feel free to Pm me at any time.And i will try to help in anyway i can.

Yours In Guardsmanship.

Chris.

Ps hope you managed to get some sleep.

Hi Pete, welcome to our world of mysterious MS.

Mysterious indeed as it has no prejudice as to where, when and who it hits. The norm is;;; there ain`t no norm!!!

What type of MS do you have? That is if you``ve had a diagnosis.

I have very probably PPMS.

Many folk here have`nt had a dx…mine was a 95% one and then I had a year off when a wonderful neuro (not) decided to re-label me after 12 years, only for another neuro to return me to MS a year later! nice time it was.(again.not)

Much luv from one freak to another…how very dare they!

pollx

Hi Pete, i’m available to chat and on here quite often x

To ALL the lovely people on here ,

Thanks for your words of support in this forum they really meant a lot to me , I have PRMS and that’s why I was told it was so so

unusual ! I’m going to take everyone’s suggestions on board and think about how best to approach this MonSter… ( love that way of

spelling ! ) I cant begin to think how a young child who gets this SH*tty illness manages to deal with it so maybe I should stop wallowing

in my own pit and do something positive but I’m finding it very hard right now ,dunno why because I was told that I have PRMS and as is

typical of me it was " Right you, fecking illness , your NOT gonna beat me down ! "…how wrong was I , I’m just suprised its taken till now to hit

me . I thought t would have done so earlier ! And my head is in a ?bit? of a mess ! My old Rockape mates ( Chris will understand ) will think

I’ve turned into some type of girly cry baby !

Hi Pete.

Take care.

Chris R.

I. El. (Eng). (Rtd).

I know its going to be a bad day when I get out of bed and miss the floor, today is such a day.

Hi Pete and welcome to the site

There is no doubt that no matter what you’ve faced in your time in the Forces, dealing with the diagnosis of MS will be right up there with the scariest, if not beating them hands down. The uncertainty is a shocker

It does get easier, but it takes a while, so hang in there!

I hope your neuro & MS nurse are on the ball and getting you access to all the right meds. Nothing quite like fighting back to make us feel more positive.

Karen x

Hallo everyone again ,

Its been a while since my first post … all of the support I’ve had really encouraged me no end …but unfortunately I feel like its come to an end now …Not the support , just the feelings of postiveity I had .

I sound like I’m a proper whinge , the MS nurses , doctors and all the support staff I have been in contact have been wonderful

(except my G.P. ) these last 2-3 months I’ve been experiencing some more new (old really but new year , new symptoms eh?) I really thought my Tysabri treatment was making an improvement , that along with the steroids I had in July '11 I had noticed a great improvement in my mobility , the ability to control my bladder and bowels , my ‘twitches’ and all the other things that had built up this MonSter we all live with ! So. any way I’ve started to …go down hill?..and along with all the physical problems I’ve been starring into this huge black abyss , all my family and friends have been very supportive but the crowding I’m getting off them seems to be pushing me towards the drop ! …Does this make sense?..

I saw a brilliant post the other day , “You dont get MS until you GET MS” it took me ages to suss this out but when I did it made perfect sense but it REALLY seems like I want to shout at non MS people “You just dont GET it !” stop asking how I feel , stop doing things for me without asking if I want it done for me ,all these things are just pulling the blackout curtains a little tighter around my life!

I’m sorry if this post makes no sense to you all…maybe its just a random rant , getting my stupid feelings off my chest and inflicting it all on you good people ! I have lots of talks with my mate Jack Daniels daily which helps me sleep better but makes waking up a real bitch ! I cant get my head around so many things at the moment and I got no one to talk to who “understands” the joys of living each and every day with a manitou inside you ! (if you aint seen the film , your very young !)

Sorry people , rant over !

Peace to you all and stay sane !

Pete

Hi Pete,

I’ve read your post and all the others and there’s not a lot more I can add, except don’t let it beat you. Lay off the booze and see how you feel, it could be affecting your drugs…who knows. Have the courage to tell people to back off and if you need help you will ask for it. As a wise person said to me explain how you feel to people a little at a time and give them time to digest it. I found it works.

Hope you come out of that black hole very soon and back into the light of the day. As a bye the bye I have RRMS.

Janet x

Hey Pete

I remember ‘manitou’ (just…) and that is just what it feels like sometimes! But trying to drown such a beast with booze, even the inimitable JD is pretty fruitless, as it just feels like said beast, and its older brother, is sitting on your head in the morning!

Having said that, I don’t have any great advice, just wanted to say hi, and take care x