Hi
I’ve been aware of what this may be since last summer when my daughter had her first symptoms at 23. Having had further symptoms and now 24 it’s been said by neurologist that it is most likely ms.
Although she has been given the name, she does not completely understand what it is. I work in a hospital and have family members with it, but am concerned that my little knowledge may not be helpful and should i wait for a professional to explain?
I’ve found out when there is a meeting for local group in her area but think that she may not be interested and I may go alone to see what it is like and who may be there of help.
Am i interfering too much as a mum??
Struggling to know how to deal with it but also feeling selfish as it’s not all about me. I was feeling so tearful and depressed I went to mt gp and actually they were really understanding and referred me to counselling.
You seem to be an amazing and supportive group and I hope that even if my daughter does not wish to join that I can still find it useful.
Thank you
Hi strongmummy,
Not sure what to suggest. I’ve had MS for nearly 30 years but have never been to a meeting. Don’t want to come face to face with others, think it would scare me.
But I come on this site regularly.
If she is diagnosed, then she should get an MS nurse who can advise her on where and how to find support. Think it takes a while to get your head round it before you look for support.
Lucky girl having such a supportive mother. That in itself is a huge help. Hope she stays well.
Jen x
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Thank you for your reply. I did wonder if groups would be scary especially at this early stage. I hope that the ms nurse will be a good support and guide when they meet. Every day I think about a new question,is driving… insurance,travel & insurance,choosing medication most importantly! I also see hope in recent medical advances too. Trying to be positive and stay strong for her. I hope it’s ok to be part of this group as a Mum. Thank you
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Your daughter is going to need your support and it’s great to know you’re already ahead of the game.
But take it steady. Wait until the neuro says it is definitely ms. Which type will determine what medication, if any, will be best to try.
It’s gonna take time for your girl to assimilate the diagnosis. She’ll probably go through various emotions…shock, disbelief, maybe even a form of grief for how she thought her life would pan out.
Life with ms can still be a good and full filling . But it takes great support, a helpful neuro team/ms nurse and lots of rest periods built into daily routines, to stay as well as possible.
We’ll do our best to be here for you both.
Love Poll xx
That was a good idea and I hope that the counselling helps you. If ever there were a time to start seeing a counsellor, this would be it. Looking after your own health and well-being is so important vis-a-vis support for your daughter, also. People with a new MS dx can be terribly conscious of the distress that the news will cause to those who love them. And it is by no means unusual on here for people to say, only half-jokingly, that dealing with close family members’ reactions to their dx was far trickier than dealing with their own. That’s why I think you will be doing your daughter a favour by providing yourself with the safe space of the counsellor’s room to explore your own strong emotions. A standard piece of counselling equipment is a large box of tissues, believe me. Counsellors have seen it all and that’s OK - that’s what they’re there for.
This is extremely tough for you and it is OK for you to acknowledge that to yourself. There is a temptation sometimes, I think to feel that one doesn’t ‘deserve’ to struggle and suffer with painful feelings when one isn’t the person with the illness. In fact, looking after your own well-being is the thing that will equip you best to support your daughter - as the air-steward says: ‘Put on your own oxygen mask before helping someone else.’
Good luck.
Alison
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Thank you Alison, that is very helpful. I knew being a mother would be hard but this was not what I expected. My poor counsellor will be on the receiving end of crying later as my daughter had another attack this week and no one to turn to, I feel helpless. What’s the point of her going to Gp or hospital, it’s just waiting in Limbo. Thank you again for supporting me
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I work around dementia and people often don’t want to go to certain groups. They don’t want to see the potential future. And Jesus boy do I get that now. I won’t be attending any groups for sure. No no non no thank you.
I am in shock right now with my own diagnosis not ms, mnd, and though I’m merely days in Alison is spot on. My whole concern and focus is on my child and partner. Not my own situation. I’ve just ruined the lives of the people I love the most.
I will be jumping at counselling as I am going to need all the emotional help I can get. As is my partner. And my little boy. ? What ever and however. I’m outta here eventually. They’re not. They need the help.
Counselling all the way ! X
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hi strongmummy
your girl will be ok once the shock has worn off.
i tried a local ms society group soon after my diagnosis but it scared me.
i found the ms therapy centre to be a more positive place to meet other people with ms.
they are a cheerful lot.
if you go there with your daughter you could both have a massage, which is always nice.
good luck to you both.
carole xx
you and tilly mint are so brave and i wish you both all the best.
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Definitely look up your nearest MS Therapy Centre, I attend one in Bristol for Oxygen Treatment and am even considering having Acupuncture at the Centre (just two of the therapies on offer).
Its great to be among other people who really do understand what you, as a person with MS or MS like condition, and as the parent/child/carer of a person with MS are going through. Some Centres have Counsellors as well.