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Struggling with my sister

(Reposting this on this forum as i would appreciate all the replies i could get and it is a little better explained here!)

Im not really sure where to start, i guess this is my first time reaching out to anyone

My sister was diagnosed 4 years ago, when she was my age (20) with MS and our lives have changed for the worst since. She is such a brave, caring, loving person that i cannot stand to watch her suffer. She has used Copaxone however her body started to rejct it. She has been relapsing since September and i have never seen it this bad before. My step father is a doctor and she has an MS nurse (tries her best but not so helpful) so she is getting all the professional help she can get. Lately her relapses have become more more frequent and longer, i bathe her and hold her while she cries but i am struggling with her pleas for suicide and her need to find a purpose in life.

I am currently in my third year of university and my partner has moved away for the year to Australia. I am suffering from an eating disorder myself and am currently on sertraline. Work have put me in touch with a free counselling service to talk things through but no one truely understands untill they have been through it themselves.

I wouldnt change my sister for the world (APART FROM THE MS!) and cant stand to see her in so much pain, im scared for her future and for my nieces. I know that things are only going to get worse however i thought we had more time untill she began to deteriorate so rapidly. I am struggling with uni, work and travelling home whenever she needs me. We have always been close from past family traumas and could’nt think of anything worse than letting her down. I love her so much, im finding the idea of losing my sister so difficult and dont seem to have anyone to talk to that has been through or is going through a similar situation. Its just not fair. She is such a loving person and doesnt deserve any of the things that have happened to her, like everyone else on this forum.

I am planning to go travelling for a few years after uni but i feel so guilty leaving her and my family to cope with this alone. I feel so helpless and overwhelmed. Ive never had anyone to talk to and dont know anyone else that lives with MS in their lives. I have tried ringing the helpline and didnt find it that helpful as i find it difficult to open up.

Any words of encouragement or suggestions would be greatly appreciated and thank you for taking the time to read.

Good morning Rara1359, I am sorry to read your plight.

MS is variable. It can wax and wane. You say in amongst your plea that : We have always been close from past family traumas and could’nt think of anything worse than letting her down.

It seems to me from such a short life of 24 you have both been through some hell and back, which ultimately will rear its ugly head at some point in time, and usually comes in the form of cutting, or eating disorders, and depression.

I think its your sister right now who needs urgent councelling hun…from what you wrote has she got children as well? I think she might be at the stage where she simply hasnt accepted she has MS and is fighting it, and feels lost as though perhaps some how she is being punished, and she is latching onto you for her emotional support perhaps because of past history. What you musnt do though is enable her behaviour hun. She is talking suicide after 4 years of MS, there is far more going on inside her head I am sure of it. Something that hasnt been spoken of and needs to be spoken of.

Yes MS can be painful, and yes we ALL can feel fed up with life, but she needs to realise that there is hope for her, and she can get stablised and live a good happy life, it seems to me she has lost hope…and is just clinging … 4 years well a lot of people have MS for longer then that without being diagnosed.

You have your own life to lead. You cannot be responsible for another persons life. Yes you can be there to support that person but she needs to learn to cope with her MS on her own as well. She is just laying in a relapse not wanting to move forward. Despair…and lost. So I would urge you to get councelling for her ASAP. Talk to your step father, and ask him to refer her to councelling ok.

You too are fragile as well and all this extra emotions is going to affect you more and more, as you feel guilty because although you love your sister you want to have a life too. Thats NORMAL hun, and you need to plan to do this.

Perhaps your sister is unconsciously sending out signals to make you feel you should stay, because she needs you to lean on…if that makes sense.

I think your future lies in getting your sister to accept her illness, get her councelling and in a better place, and put support network in place for her. There are things you can do, she sounds like she should have care workers in. IF she has children then she certainly is able to get support.

She needs to realise that there is a life with MS, and it will get to the point where she can have some good times. I find the more i stress over something the worse I feel, so right now she is stressed and anxious, and everything is worse for her.

Weirdly enough i have been supporting a 24 year old who was diagnosed at 19, and she is going through a similar period of her life, where she just feels what is the point to living when all she has is pain to look forward to, and disability, and what I have said to her is this. There are no guarantees in life. We are born, and if we are lucky we manage to survive just fine, but the majority of us are given challenges along the way. For every person with MS there are 3 x as many with cancer to cope (300,000 a year) with. 400,000 with Rheumatoid arthritis a painful and disabling condition, and so it goes on and on…I think sometimes we are born to suffer lol…if its not an illness we are given other things to cope with, bad parents, horrible siblings, abusing families, bullying at school and the work place, violent partners…jeez when you think about it lol…

BUT then we have been given the gift of life, and its how we deal with all this rubbish, and cope with it, and our expectations that count.

I could have given up yes pain fed up with it, so much emotional rubbish going on right now feel like a pressure cooker, but then i look out of my window and see the sunshine, and the little birds all busy feeding and taking food back to their kids, and I can hear my cockerel calling his girls, and I can sit for hours watching him, how he guards his little flock, and when he finds a morsel of food he calls them over. Then i get facebooked by my daughter I will share what she wrote on my wall as I am really down at the moment.

This is what my daughter left on my facebook wall yesterday. (She is 41 by the way).

Thru life we’ve had tough times, sad times, ill times, heartache, so much stress we can’t see an end to it, and sometimes feels like nothing’s ever gd and think wots the point?? But we don’t give up we r there for each other and walk hand in hand thru all the mire and come out smiling I love u mum with all my heart xxx

— feeling blessed.

Thats how your sister needs to feel right now. Blessed. Blessed with a family who love her and care for her so much they are even thinking about putting their own life on hold for her. She is truly blessed hun, to have such a wonderful sister, and perhaps she needs reminding of all the good things in her life right now, and i am sure there are many.

Like i said you cannot be responsible for another persons life, but you can be there for her, even if you go off travelling there is SKYPE, and web conferencing where you can still be in touch with each other. BUT for now your task is to get her the councelling she so obviously needs, and you too. big hugs. xxxx

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hi rara

it breaks my heart to hear of the effect of this horrid disease on two sisters.

i’m uncertain if i get my information right but here goes…

your sister is still very young. she is entitled to change from copaxone.

​lemtrada and tysabri might be better for her.

they are the heavy artillery and if anything can nuke ms into submission, they can.

although expect some heavy side effects too.

ask your sister to request a home visit from her ms nurse and maybe you and your step father could be there too. this is because she is probably not in the best frame of mind to handle important meetings alone.

(the last 4 lines are the ones i’m not confident with)

i’m fairly sure though that she will not always be so poorly.

what has her ms specialist consultant had to say about her ms?

there are lots of options once she is over the worse of this.

the ms therapy centres are fabulous places. always lots of other people with ms and their carers/friends.

they are not miserable places at all. (lots of coffee and cake consumed during gossip). the therapies on offer include massages, electro magnetic therapy, hyper barric oxygen therapy and lots more. they are usually based on the outskirts of cities.

i am near manchester and my ms therapy centre is at trafford park.

she will find a purpose in life once she gets over this relapse.

i’m worried about you too. make sure that you look after yourself because you risk getting sick as well.

i hope you get lots more advice from people whose brains aren’t as scrambled as mine.

wishing you both the best

carole x

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Hi

You’ve already had two excellent replies with some really good advice.

I would add that you need to look after yourself. You have your own life to lead and you will be no good to anyone, including your sister, if you go under with it all. Would counselling help you? I am sure the student welfare service at your uni would help. Try to find time for your own interests, they are important to keep you sane. It is important that whatever you commit to with your sister it is reasonable and sustainable. I doubt the long term sustainability of your life at the moment.

Being a few years older than you, I do know that nothing stays the same. As others have said this situation with your sister will not last forever. It is important that you go travelling, put the necessary support in place for your sister and use technology. I have no doubt it will brighten your sister’s and your other family and friends’ days to hear from you on Skype.

Good Luck, there are better days ahead!

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