I HATE MS - IT'S RUINED MY LIFE...

Everyday living
21

Dear Poll,

Thanks for your ‘wise words’

Marcus.

22

I’ll respond as soon as possible - thanks for your messages, I haven’t forgotten.

Marcus.

Dear MontyMole, Amy, PatB, (Grasshopper), Upytupy, he_funk - (Dan),

23

Hi Marcus,

Glad to see that you have perked up, especially with all these wonderful people helping you.

You take care of yourself and your little girl.

Janet x

24

No worries Marcus, whenever.

I’m pretty sure I’m correct as it was confirmed by my Neuro Consultant and I think he knows his stuff.

25

Hi Marcus

I found the first 3 years to be the worst. I was so angry and would often open the backdoor, shout something rude and then shut it again. This was just to get rid of the pent up emotions - not suitable if you have children with their long ears. Of all the problems suffered, those of speech and cognative function have been the most difficult for me. In what I term my previous life I was an Accountant but now find I can only truly grasp the basics sometimes that is a struggle. When I recognised that each negative step was along the path of grief it made me realise that it was ok to be angry. The benefit if this was that I accepted the disease and could let go of the anger.

Eleven years on I have obtained a degree, a first no less, despite the frustration of finding the right words of being unable to communicate verbally and having to constantly look in a dictionary (getting too heavy to handle now). I only managed to get to college for two thirds of my studies and had to make do with home study for the final modules. Fatigue and pain still frustrate but I now just say sod it and shrug my shoulders.

I still cannot let anyone else make decisions for me and have a stuborn streak a mile wide - sometimes to my own detrement, but then this is my life and I will grasp what I can control and continue to push. My matras are - there is always some poor sode worse off, focus out not in and tomorrow will be a better day.

I am not sure if I would be quite as confident if I did not continue to have the continued support of my husband who has had to put up with a lot. He has lost the woman he married and our dreams and has also had to come to terms with MS.

We each have to find our own way and own it, not an easy task. Remember we are each experiencing some of your symptoms and emotions and you are never truly alone.

Cheers

Moira

26

Hi Marcus

Before MS I had a high-powered job and worked more than 70 hours per week. I loved to travel and eat out.

Because of MS I can only work 25 hours per week - in a different but still very influential job in the same company, we travel but with assistance and careful planning, we eat out occasionally because I’m often completely wiped out in the evenings. The biggest change has been the brilliant increase in the amount of time I get to spend with my kids.

If it hadn’t been for MS I would probably have carried on working like crazy and not really involved in my kids life. The pain, fatigue, muscle and visual problems are horrible but I thank my MS for giving me a wake-up call about what’s really important in life.

A close and fit (non-smoker) friend was suddenly struck down with lung cancer and, despite a massive fight, died 9 months after diagnosis on the day before his 47th birthday. His kids have to continue growing up without him. Even if I’m disabled I hopefully will be around to see mine into adulthood.

When I’m down I force myself to list 10 good things in my life on that day - sometimes it’s a real struggle to get past the bad things or things I can’t do but so far I’ve alway managed to think of 10 ! I know it sound like Julie Andrews in The Sound of Music - you know “Raindrops on roses and whiskers on kittens” (although personally those two things don’t do it for me) but it helps.

take care,

Lisa x

27

Hi, Moira,

I’ve just finished reading your extensive message, thanks. I was ‘vaguely’ involved with accountancy but as ‘important’ as it is, it wasn’t for me. I went off to do Psychology, Sociology, Moral Philosophy & Politics at University. Head spinning stuff but it didn’t do me any good. I can’t retain things now (with MS). As it is, I now ‘watch’ Coronation Street and Eastenders (but I couldn’t tell you the names of any of the actors and I don’t care!). My wife is an Optometrist from Northern Ireland - her friend is from there as well and is called Maire and she is a nurse has 4 kids. Oh, and they are both Catholic. I’m not - I was brought up in the church of Scotland but I haven’t been for (hundred’s of years!). Boring eh?

My grandfather and grandmother are from Orkney and Shetland respectively but I have NO relatives with MS. I want to say that I hate MS (but it is not troubling me ‘at the moment’ so I’ll just ‘shut-up’).

I have been to Lanzarote 9 times (the persistant wind ‘cools’ my MS in the heat and makes it a bit more manageable).

Marcus.

28

Thanks Lisa,

Why do you make MS sound more ‘appealing?’
I understand what you mean by ‘the kids’ although my eight year old daughter just ‘bit’ me!

Although ‘very sad’, I loved the rest of your message. Although unemployed now, I was director of a £14,000,000 turnover family business. It’s gone now but my wife is an Optometrist in Edinburgh and also works (part-time) at the Eye Pavilion.

I still hate MS and I would love to live long enough to find out where it comes from? (and maybe even find a cure?)

Until then, take care

Marcus. x.

29

Dear Lisa,

I just noticed that we both ended our message’s with the words “Take care”. I don’t want to sound ‘smarmy’ but I hope that the sentiment ‘transferred’. I was never very ‘good’ at grammer and my spelling could ‘improve’. Apart from MS, my sex life (with a catheter) is non-existant but I’m NOT asking for advice - I’ll find that myself! (I hope) but I still hate MS!

Marcus.

30

Hi Marcus,

There are times when I finish an email or message with the words “take care” and I think it could sound like a mafia warning !

I hope you and whoever read my message didn’t come away thinking I was being smug or dismissive of anyone else’s situation - it wasn’t my intention.

MS isn’t the worst thing that’s ever happened in my life - a lot of bad stuff happened to me as a child and I got through it by keeping a sense of humour, working hard and refusing to let my life be defined by it.

L

31

Hi, thanks for agreeing with me and doing your best to enjoy the good things in life.

Just wanted to mention something. when i go swimming.or should that be more like floating nowadays/…i use the hoist to lower me into the pool and out again. Its great. thought about it yourself, eh? Go for it. Dont stop enjoying something when there could be a solution, eh?

luv POllx

32

What a great reply, Moira. Good for you to keep on in there and achieving.

luv Pollx

33

love your philosophy!

luv POllx

34

Hi Marcus and Lisa

You are proving how important it is to remain grounded and keep up relationships no matter how hard.

You have also reminded me why I keep coming back to this site.

I am English but have Scotish ancestry, I suspect like many other northern bods the work ethic has always been strong.

Cheers

Moira

ps I am not a drinker

35

Dear ‘L’ (artlover),

I got your message, thanks - I found it suitably ‘uplifting’ and it gave me a ‘lift’.

Tak_ (no, I mean look after yourself),

Marcus.

36

Thanks Moira,

Like you, I am not a drinker (but that is definately a change from the past). My wife is Irish and I believe that I have some ‘Scandanavian blood’ but I don’t feel ‘any different’ - my cousin works in the ‘legal’ profession in England and I could go on - I’ve ‘forgotten’ what the ‘work ethic’ is - I’m more like a hippy who lives on planet earth…

‘Peace’ man.

Marcus.

37

I started this thread titled “Having Multiple Sclerosis” - I do have a negative outlook on life (generally speaking), and my condition doesn’t help at all, but I gave the following advice to people diagnosed with MS or Lupus - hope it helps.

http://www.mssociety.org.uk/node/633651

  • With people who have Multiple Sclerosis or Lupus and have difficulties with their mobility, they can use crutches to walk (or a walking stick). Outdoors, they can also use a four wheeled walking frame. Indoors, a four wheeled trolley can be used. Contact your local council (e.g. Social Services) to ask if you can get any of these items free of charge.
  • The NHS Wheelchair Service can provide wheelchairs free of charge, and someone will visit your home address once a year to check the wheelchair. You need to be referred by your GP to the NHS Wheelchair Service.
  • For hospital appointments, some hospitals will provide transport (ambulance or car) where they pick you up and take you back home, so call the hospital or your GP to arrange this (it’s likely your mobility will be assessed with a few questions before transport is booked).
  • Occupational Therapists can arrange for grab rails to be fitted for the bath, or to give you a bath board to sit on.
  • As for essential gardening (e.g. removing weeds), if your landlord is council or housing association they should do this for you.
38

I was ‘looking’ at this message -
“I HATE MS - IT’S RUINED MY LIFE…” and suddenly thought ‘what if somebody who is newly diagnosed reads this?’
Multiple Sclerosis can be a ‘pig’ (don’t get me wrong) but the type I have is relapsing/remitting but it can be manageable. (change of heart perhaps by me?)
Well at the time I was low and I wear a catheter. Quite a change for someone who used to be ‘extra fit’ and the catheter was leaking (damn it!).-
Suddenly (things changed). At 11.30 a.m., yesterday,I phoned a NHS nurse - By 4.00 p.m. IT WAS FIXED- she came out with another nurse (to my home - so, ultimately, I didn’t have to move! (she mentioned that my doctor’s father had MS)
I phoned her up today to thank her - she didn’t actually ‘do much’ but boy! it was welcome - LIFE CAN BE MUCH BETTER WHEN THINGS GO WELL! - IF YOU HAPPEN TO BE NEWLY DIAGNOSED - THERE IS ASSISTANCE YOU CAN PHONE MULTIPLE SCLEROSIS FOR FREE (I was on the phone to a very understanding individual for about half an hour today and it cost NOTHING!) - 'SHE COULDN’T DIVULGE IF SHE HAD MS (but I think she had - she was very understanding and informative - she ‘seemed to know everything’) - I FEEL BETTER NOW (although I’ve had the MS for over 13 years and I remembered that I was pretty ‘sh*t scared!’ at the start.
I KNOW IT’S AN OLD PHRASE BUT 'THERE IS HELP AND UNDERSTANDING FOR MS - AND (AS A SCOT!) - IT IS FREE. I’m 55 now but as a youth (at university - so I’m not stupid!) - I took admiration of the ‘HIPPY’ philosophy, man!

stay cool and relax (I have partaken of cannabis but I don’t drink or smoke now and I’m not religious)
Marcus.
(sorry if there are any spelling mistakes - I have an eight year old daughter who does ‘spelling’ at school but I don’t give a sh*t!) - I have MS you know.
Marcus.

39

Dear Sarah,

Thanks for your message (and sorry it has taken so long to respond).I agree wtth everything you say. It was a lovely message.

Marcus. x.

40

Dear ‘ColinS1973’,

Sorry that I’ve taken so long to reply to your ‘very informative’ message. I have taken some of the advice (in the 13+ years that I’ve had MS) but the information is ‘handy’ and I wtll keep it to refer to. Thanks.

Marcus.