I have recently been dx, mum and dad already made it a tabbo subject, partner thinks I should just deal with it and don’t waist time on this ****** site. Feeling pretty low, please don’t tell me I’m the only one with a family like this, please. Perhaps I should also ignor, maybe will all go away… You know what hurts, try my hardest to be there for them, feel so lost.
Like reading my own post from many moons ago, ended up divorcing my husband because of his lack of help/support and the rest. My family are good but they too dismiss what i go through all be it always there to help when needed. So know exactly how you feel. Try not to let it get you down (easier said than done) but my slant on my MS now is I’ve got MS it hasn’t got me and I’m a fighter not a quitter. PM me if you want to discuss further Thoughts are with you xx
hi hun,
please dont feel bad about using this site. i too have a cr*p support system and am new to being diagnosed. i found this site at times the only place that i could find some peace and answers and just somewhere to say ’ help me please! '.
please dont do as i did n go in2 denial.as it can add to your symptoms and the stress that this creates adds to them too.i would admit to how your feelin right now and if ur family cant help you. then maybe chat to ur ms nurse as she can put u in touch with some support groups that really understand ms.
maybe invite your hubby n family to ur nxt ms appnt with your nurse?
i hope you find help soon and although im new myself to this please dont be frightened to ask or say hi to me if u feeling low again. i really have been where ur at hun n hope i this has helped u a little,
god bless,
Anna x
my inital reaction is to tell your husband this ***site is more supportive than him . my second reaction is could be be scared about what the future holds and it is coming out as if i don’t think about it it won’t happen .
could you try putting down how you feel on paper to your parents and husband and let them read it on there own and see how it goes.
very hard for you to deal with but here to chat any time xxx
rach
Thank you Anna Thank you and I will, seeing doctor tomorrow, on my list is asking for help. I am or was such a strong person, don’t recognise this new me X
Hi Rach Thank you x Not husband, not sure will be. Put things on paper, yes good idea but I am rubbish explaining how I feel, and putting down in writing, if only I was good at writing!!! Many years ago when I was going through my divorce I told my family I was going to see a councillor, they could not believe it. What a silly waste of time! I really think its a dead ender! It is so wonderful that there are people here who understand and care, thank you x
hey ur stil u hun!
you have just hit a bump in the road and need to find a new way round now.
dont get me wrong, its taken me ages to get to this point.but i ended up thinking that i had this simple choice to make- i could either see how i can still live the life i want to ( albeit maybe a bit slower n get there a different way then i first imagined ) or i could sit and become all bitter n twisted n sit n sulk for the rest of my life. the pages on this site about the young kiddies who have got ms really helped me put things into perspective for me. they r so v brave!
also the ppl who have climbed mount everest in their wheelchairs- i mean WOW! couldnt even do that now n my mobility is fine at mo.
just remember to take ur time hun,this is a huge thing to happen to u and please do not attack urself fpr feeling angry, sad,bitter etc as its all normal.
the ppl on this site r amazing n so v kind and it wil always be open to u here.dont forget x x
I know, you are so right. I know and feel guilty for self pity when you know, all could be so worse, such brave people out there,silly old me. I know I will get there, just wish as fast as my family would like! Good to know there are people out there who understand. X
Hi there, We all feel self pity from time to time, don’t feel guilty. That feeling of “it’s not fair,why me?” - we’ve all been there and I think it’s a perfectly natural feeling. I think sometimes family can seem unsupportive when really they are having as much difficulty coming to term with the dx as you. That is not to say that that is right though. We all need our families through this! They don’t want the dx to be real - they are in denial but that obviously doesn’t help you. My family has been varyingly supportive/unsupportive. Some have really helped, others have been the opposite. So you end up closer to the ones that help you. My parents have hardly been any help at all, they are more concerned about their own old age ailments. Whereas my hubby and sister have been great so I stick with them! Please know that we are always here to listen and lend support and if you want to rant and rave feel free. I hope some members of your family will get their heads round this and give you support. We all know how tough this is - thinking of you. Teresa xx
Hi
It’s possible your family & partner are being unsupportive because they’re in the denial stage of grief. We all naturally think we’ll be blessed with good health along with all our friends & family, and we’ll all have the freedom to do whatever we want together. When something like MS comes along though, it confronts us with a future of uncertainty, and of loss of the freedom we thought we had. It’s natural for us to go through a grievng process, and it’s no surprise either that our loved ones do too. They may seem like they’re being uncaring, but it could be because they do care about you, and so don’t want to be reminded of what’s happened, or what could happen to someone they care about.
I feel for you though - it can be tricky to get people to listen when they’re in denial, and that’s extra tough for you at a time when you need their support. The suggestion to write down how you feel sounds like a good one though. And keep coming on here for the support you need, until the time comes (hopefully) that those clostest to you are ready to deal with what’s happened.
Dan
Hi Dolphin. Know how you feel. My mother always said you should never take your problems outside the family. What a joke! I was finally dxed with MS after 20 years+ of being labelled a hypochondriac and made the mistake of telling her as I was so relieved to know what was wrong. She had hysterics and said SHE couldn’t cope. Only other family was one brother who worked away, and no friends or partner then or since. Have carers coming in now but am just a job to them, but guess what? I seem to have survived and so will you. You have all my sympathy.
Belinda.x
My familie’s reaction was just the opposite I’m afraid. My mum is very over-protective and smothering. I’m the one who wants to not talk about it.
The point is that is it VERY difficult for families to hit the right note – mainly because our own feelings change so frequently. There are times that I want tea and sympathy and others that I just don’t want to think about it. How my F&F are suppose to keep up with that I just don’t know.
It must seem like the people round you don’t care but I suspect that they are playing the ostrich game – if you hide your head in the sand it might all go away.
In my experience the hardest thing will be to educate those around you. While they might never be the support group that you want, they will need to know what is happening to you and why you are not able to do certain things. While your husbands “just get on with it” attitude strikes a chord with me there will come a point that strength and desire will not be enough. With fatigue for example – you can’t fight it (at least I can’t!) The MS Soc do excellent booklets – you might try having your husband read the appropriate ones, as and when though – don’t flood him with too much or he will refuse.
This site is the place to come when you need support because all the people here understand exactly what you are going through. I only started coming here a couple of years ago although I have had MS since ’95. I wish I had found it sooner.
Jane
I spent the best part of 20 years after I was diagnosed pretty much ignorant of the effects of MS. Of course, I saw my MS Nurse every 6 months, but I didn’t ask the right questions at the right time. I joined this site a couple of yars ago, when I started asking the condition seriously. I have so much more data to process now, and I understand my MS a lot better as a result. I really wish that I had joined the site years ago. I would urge you to ignore the negative influences you are faced with, and get as much information as you can. Then you an educate those around you. It is only when you have faced the MS, and understood more about it, that you can accept it and get on with your life. Don’t leave it 20 years like me!
Thank you all for responding, it is such a lovely feeling not being alone.
I here the word denial and yes that could make sense. How could I have missed the signs, had experience with denial, x husband lived with it for years, taken him 10 years to get it that he is a drunk. Guess it does take time.
Saw my doctor today and she now keeping an eye on me, she said I sounded depressed and as I am off to see MS Center in Canterbury this week she hopes they can help (never been before).
x to you all
hi dolphin
my husband told me that i was wishing ms on myself because i spent a lot of time on this site before i was diagnosed.
but somehow i knew it was ms.
i came to this site to reassure myself that i wasnt going mad.
once i got my dx hubby started to be supportive.
mind you his version of supportive is not as good as i’d like! he was very scared that he’d be left on his own because he is not a good coper. he likes to fix things and was frustrated that he couldnt fix me!
as far as my family - my dad and my youngest sister were great although i play my ms down for dad because he has his own health problems. now my middle sister, who used to be my best friend, upset me quite a lot in the early days. she is handling it better now though.
keep on coming to this site, wait a while for your partner to get with what’s going on
take care
love carole xxxx
Sometimes I do feel that I have been bending my wife’s ear too much about MS and similar with my teenage children. It can be hard for them as well (my 14yr old is adament he will have MS when older ) I think after a length of time you think people really get fed up of listening about it. Some do, some do not, some of my former friends who I raced with/against have never kept in touch, I think because they have their own crosses to bear and it reminds them of their own mortality!
Hi VinceA Thank you for your response. I know what you mean. This weekend I went for a walk with my friend, my little dogs and our kids. Half way through the walk I had to ask my son to run to the car and gets my stick as my legs gave way. When he came back with it I did feel that my friend for 10 years felt uncomfortable. Hard to accept X
Hiya.
I wanted to add my support to you, but today I don’t have the words. You have my thoughts though.
Hang in there
Pip
MS is so hard for people to understand when they don’t have it.
I have found discussing it on here helps with any worries or questions
As for family and friends those that can’t understand or cope with it, thats their problem i haven’t got time to wait for them as i have family and friends that do help and understand
You’ll have them as well, but it might be that you haven’t found them yet,use your home page to find events near you don’t be afraid to go out there and find help
MS is so hard for people to understand when they don’t have it.
I have found discussing it on here helps with any worries or questions
As for family and friends those that can’t understand or cope with it, thats their problem i haven’t got time to wait for them as i have family and friends that do help and understand
You’ll have them as well, but it might be that you haven’t found them yet,use your home page to find events near you don’t be afraid to go out there and find help