What are the lessons learnt since diagnosis (good or bad)
I have found that:
NHS care is deficient in caing for people with MS - and you have to learn where to access the care you need yourself
Complaints procedures aren’t heeded unless you keep exacting evidence
Neurologist need re-training in people skills
NICE is incompetent in outlining its criteria leavingit open to interepetation that then denies people DMDs
Ageism exists in DMD prescribing - but Neurologists and the NHS deny this
People you thought of as friends disappear - but other come onto the scene who you never expected to
Discrimination exists in society - so you have to learn how to combat it
Discrimination exists in employment - so employer and colleague attitudes need addressing
The Equality Act is good on paper - but its enforcement is lacking - we need more than words we need actions
Accessing legal help to overcome discrimination is practically non existant - unless you have money
Accessing adaptations is difficult - and you have to be quiet a strong character to get help though the system
Charity organisations are extremely helpful - but you have to get over the stigma you might feel in asking for help
Debt is ineviable - still working on this one
And finally I HATE MS
Mary
I have found that I knew nothing about ms, and that you have to be your own expert. Also that the benefit system is sutup that its so hard to get any in the hope you give up.
hi
i have learnt that IN THEORY theres an abundance of help out there but in reality you are left to cope alone. once you get ur head round this its a relief cos the alternative is false hope and an expectation that help is available until u realise ‘they’ were saying the ‘right words’ just to prevent you telling how it really is.
i dont blame the neuro,gp or anyone else cos they too are caught up in the system.
there is no cure. its a progressive illness. i hope that every single one of you finds YOUR way of coping,cos thats all there is.
gosh-just read that over-sounds very negative. my apologies-but its reality as i see it. and i feel better knowing the truth than false promises…
have a happy day
ellie x
I’ve just read all that as a person who’s in limbo, & I’m now well depressed & scared! Great x
You must not be Egyptian…In De Nial
You MUST realise that you will have to change adapt and modify,things to make life easier
As the MS changes you have to change with it to be able to deal with IT and everyday life
You have to establish routines which are simple,effective and will stand the test of time
SMILE
Wb
Well - l agree with just about everyones statements - but we are alarming the ‘newbies’ - as we do sound a bit negative.
lts not all doom and gloom - l know l have struggled for the last 30yrs with spms. But l have still had a good quality of life - and l hope folk find me always smiling/laughing - even if they are laughing at me! l have lots of friends who are ‘normal’ - who possibly do not do as much l do.
We need to be our own experts - and l am glad l ignored the neuro l saw for diagnosis. He said l was not to over-tire myself - not to do this and that - well l have always pushed myself and tried to keep going and do as much exercise as poss - keep healthy - and not to complain about any of my ‘symptoms’ to anyone. So no moaning!!! lt doesn’t make you feel any better - and do folk really want to keep hearing it.
l went to the ‘shoot’ dinner at our local pub - to get into the restaurant l had to go down 3 steep steps - the room was full - and as l was leaning on the door jamb for support - everyone looking at me - l did my Julie Waters impression - ‘‘Two Soups’’ - and had the whole room in laughter. lf l do ever fall in front of anyone l usually say - ‘There - l do all my own stunts’.
And another lesson is - you will learn more from this and similar sites then from GP/Neuros
Fx
You can’t fight MS and far better to accommodate it and make a few lifestyle changes instead.
well i’m with campion on this
i crack jokes about my mental legs and sing “spasticus autisticus”
every new thing that gives me the horrors gets the same
i was recently told that i must self catheterise and i was shocked and appalled that this was happening to me. my sister called round to ask how i was. now my sister cries at everything so i told her the comedy version of the self cath and we both ended up laughing so much she had to dash to the loo but i didnt because i’d just self cathed
early on i cut out all the people whose company was stressful for me and i’m now left with a VERY small circle of fabulous amazing friends.
i got into the habit of booking things in advance so that i had something to look forward to. been to loads of concerts that way and last year i went to the festival no 6 at portmeirion. i had a free ticket for a carer but nobody could come with me so i went on my own and had an amazing time. met loads of great people. i’m going again this year with my sister in law.
really i need to have a strong, posistive mindset. its not easy at times and occasionally i come on this forum to have a whinge
so newbies dont get depressed, this is your life and it might not be the one you should have had but its still yours
carole xxxxxxxxxxxxxx
excellent question…ms does rob u a bit of sympathy( for folk with v.liitle wrong with them) but does give u loads of empathy with those with problems…if u are having a lazy day u have a perfect reason to get about on wheelchair/scooter/not walking far/getting others to wait on u hand and foot/staying in pjs to 3pm/butter toast and the list goes on…my husband and I do a gud impression of Lou and Andy…better haircuts
I think the most important thing I’ve learned is:
It is what it is.
I don’t try to fight MS because it will win. I just try to make the most of my day/life. I agree with Carole that booking ahead is a good idea – it’s something to look forward to and a commitment to meet.
I haven’t found anything that made much of a difference (although other use vitamins LDN etc to good effect) Acceptance is my key. If wishes were horses then beggars would ride. So I try to make the best of what I have and use the right aids for the moment. My latest addition is a rollator in the house. I hate the bloody thing but have to admit that it keeps me upright and it’s a darn site easier to carry things.
Don’t think for one minute that I’m a drooping miserable sod because I’m not.
Jane
PS
Don’t be misled by the tone of Mary’s post because she gave me oodles of encouragement when I first got my wheelchair and I know she zips about in hers!
Not being able to work & poor mobility & fatigue means I spend a lot of time at home. As I live on my own that means a lot of time home alone… but I’ve learnt that’s ok. I’ve taught myself to have a nice time & to enjoy the small stuff. Reading, TV, internet & radio fill my day. Also living in sheltered housing means there a little things going on here that I can enjoy without ‘going out’…
… and when I do go out on my mobility scooter I really enjoy myself.
OK it’s not great all of the time… but who’s life is?
Enjoy the small stuff. Don’t look back. Don’t look ahead. One day at a time. Live for today…
and I’ll sign off before I make myself sick with American-style guru platitudes…
Pat x
i quickly learnt that MS is an ongoing challange,and i aslo learnt to become my own ms expert.
jaki xx
Man (or woman) plans: God laughs.
I did not understand this until I got MS, and it’s still work in progress.
Alison
x
Being newly dx I guess I am still going through an optimistic stage. Don’t get me wrong I’d rather not have MS. I had just set up a new home cake business spent a fortune on equipment, built a website and have had to put that all on hold for now, probably permanently if I’m realistic…but… I have learnt how lucky I am to have amazingly supportive friends. So far work and all my work colleagues have been fab. I have learnt not to put things off but get out and do while I still can. One friend has moved to France and I had been planning to visit before everything happened and I was dx. By summer I had improved but was nervous of going on my own and tried to find excuses not to go. At which point my hubby gave me some great advice which was to start out as you mean to go on…so I did. I arranged for a wheelchair at airport in case I was having a bad day and off I went. So the biggest lesson for me is life goes on and it is what you make it. Some days ms gets the better of me but I am currently going down fighting! Mish x
I have learned that MS is different for everyone , and not many people understand it, so I try not to expect people to understand it. Especially at work. I also I’m proud of myself , for keeping going at work and as a mum. Hope.
ive learnt not to listen to anyone who doesnt know about ms, as they suddenly decide to turn into ms experts and tell you not to say anything about this n that, that its way too slow to get a ms nurse and to not tell anyone wen ur seeing ur dr wen somethin goes wrong
The sad thing Iv learnt is the some of the people around me who I thought were friends never were. And on a bit more positive note things could always be worse
xx
The sad thing Iv learnt is the some of the people around me who I thought were friends never were. And on a bit more positive note things could always be worse
xx
Well, I am not officially diagnosed but since I am a long term limbolander with long term difficulties associated with this I am going to reply.
I have learned that if you hate your condition you give it power by expending negative energy. I don’t hate whatever this is, I live with it.
I learned that escaping limbo is HARD work, and it takes being profoundly proactive and being a bit of an ass with the medical community so I get what I need in spite of them.
I am a much more patient person.
I am a better person, I try and take any positives from the situation that has been thrust upon me.
FInally, if I have one regret it is that I was intimidated by neuros and limbo into not doing things which I have found are very beneficial and fun, like disabled sport. It is one thing to have to use assistive devices due to disability without a formal diagnosis because I had no choice but I didn’t have the strength of character to go to someone and say, I have mobility issues but I wanted to be active. I lost years because I didn’t start doing something I now love because I was intimidated by idiotic neurologists.
Please don’t make the same mistake I did, do what you love and do it as well as you can even if you are not diagnosed.