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Emotional support for Mums who care

Hi

I feel guilt about posting this but am feeling very alone just now. My daughter was diagnosed with MS 3 years ago and is still active and independant, for which I am grateful. How do Mums cope with the emotional side of someone else’s MS and the effect it has on them? I try to stay postive and supportive to my daughter, who lives alone and gets very depressed at times and has constant mood swings. I know I don’t have MS but I feel as if the light has gone out of my life and have been given a life sentence for something I haven’t done. At other times I feel as if I am being punished for something I have done. None of this makes sense and people will say what is your problem - you are not the one with MS, but I am hurting too. I get no support from my family, they just say it is a shame she has MS but there is nothing we can do. How do you deal with something that will have no closure to move on from and will be with you for the rest of your life?

Hi, I can understand you must be devastated if it was one of my children I don’t know how I would feel even though I have ms myself. I wasn’t dx until I was 50 and my mum was quite elderly then and she was so so upset. I think she took it worse than I did. They suspected ms for quite a while before I was dx and as I was very close to my mum she shared the journey with me. When I got the expected dx finally mum rang me up and said right you and I are going on holiday and she took me to Lanzarote and we had the best holiday ever, just laughed all the time . Sadly she died 3 yrs after that holiday and I miss her so much, she was my rock and my best friend. I am sure your daughter needs you and as a mum we know we have to put up with anything and be there for them in the good and bad times. Perhaps she needs to talk about her illness to you as it can be so hard for people to understand. Have you suggested she uses this site? It is full of support, knowledge and lovely people. Sorry I have rambled on a bit, I feel so much for you and your daughter. Let me know how it goes and just be a mum I am sure that will be all she needs. And as far as other people go sod them she’s your daughter and please please you have not one reason to feel guilty. Take care Karen Ps feel free to pm me anytime and a happy new year to you and all your family xx

Thanks for the message. Sorry that you lost your Mum - that is one of the things that worry me - how will my daughter manage when I am gone? I talk to her all the time about her MS and go to the hospital with her when she sees the consultant. I have taken her on holiday 3 times in 3 years. I was just needing to know I was not alone with these feelings; I have read several messages on the site and feel for everyone going through the emotional side of having and supporting MS. What a pig of a disease!

hello love.

being a mum (or dad) with a child who has an incurable desease, is so hard to bear. Parents will feel their childs pain or anxiety twenty fold. Thats just the nature of being a parent, eh?

I am the one in our family who has a possible genetic desease. There is a 50% chance of me passing my condition down to my offspring. It isnt MS, by the way.

As a mum i would rather have anything if it is saved my lot from getting it.

You sound like a truly devoted mum, who is hurting so much. But love, you cant make your girl`s MS disappear. All you can do is what you are already doing…being there for her in every way you can.

As she is already living on her own, then that shows you she does have some capability to cope alone.

Your love is wonderful.

luv Pollx

hello folks, my son is 27 and has been diagnosed with MS on 7th November 2012. He has had 4 clinical events from 1st September 2012. We have been told that he has an aggressive form of RRMS. He has had 3 MRI in past 4 months all showing new multiple lesions on his brain & spine. He has had IV steroids and is now looking at going on to Tysabri . I am a nurse with many years experience of caring for people with MS . I never once thought it would affect me personally . The speed and aggressiveness of this onset has left us shell shocked . He is single and I am his carer . we have a large loving supportive family and friends network . the future looks terrifying and I am so worried for him .

any thoughts or advice would be appreciated .

B.

Hi Mama B

Just to let you know you I am thinking of you, and feel for you. Hearing your child (no matter how old) has an incurable disease is devastating, and the emotional side of things are hard to cope with. I found knowing it was one thing, accepting it was another. Three and a half years on I still feel I will wake up and find this is all a nightmare and my child is fine, though I know it won’t happen. I know how you feel about the future looking terrifying but all I can say is take each day as it comes and be as strong as you can on that one day. Try not to fret about what may come - I have learned it does no good, and just uses up energy reserves that you need for other things. Easier to say than do I know. You are lucky to have a large support network and your progessional experience will be invaluable now. Just keep being his mum - that is all you can do.

If you want to send a private message I will be glad to give you any thoughts I may have on coping.

Lorna

ps Remember to take care of yourself as well.

Lorna many thanks for your words of support . I am lucky in so many ways . My family and friends are fantastic and I know they are there when I need them . I feel as though my life has been put on hold to be honest . I also care for my parents who are both in poor health but the emotional rollercoaster I am experiencing with my son’s MS is beyond comparison .

B.

In general most of us has problems in loved ones. Some of which are more intense than others. But i guess no close relatives is ever perfect, and i don’t think ive ever met anyone that can determine the phrase ‘normal’ because we are all unique and have different views on what ‘normal’ is.

Hello all.

This is all new to my wife and me. Our son has recently be dx with RRMs, he’s only 16 and had his first sympton at 14. At the moment things are really tough, he’s just about to start Rebif. We have a daughter who is nearly 18, she has taken it really hard. As all you parents are aware I’m sure, talking to teenagers is hard at the best of times.

Does anyone know of any groups for young people and parents.

Kind Regards

Hello all.

This is all new to my wife and me. Our son has recently be dx with RRMs, he’s only 16 and had his first sympton at 14. At the moment things are really tough, he’s just about to start Rebif. We have a daughter who is nearly 18, she has taken it really hard. As all you parents are aware I’m sure, talking to teenagers is hard at the best of times.

Does anyone know of any groups for young people and parents.

Kind Regards

hello, my daughter who is 28yrs has RRMS she was diagnosed at 21yrs. She has recently been suffering badly with virtigo and her balance, along with the usual fatigue etc.She has just finished a high dose course of steriods over 4 days, and the poor girl thinkhs she is going mad ! with terrible side effects, which she now cant tell is side effects or part of her relapse! Has anybody else had these problems? and how long is she likely to feel like this ?