My guest blogger today is a mum, psychologist, health researcher and MS survivor. She writes a brilliant blog at memsandbeingmum – take a look!
Anyone who has been diagnosed with MS knows this is big. The implications of your diagnosis for your children are huge, though in many respects are as yet unknown. Like so much about this condition, you are left with a cloud of uncertainty under which you must continue to raise your precious loves.
Like me I am sure many of you read the information and depending on what and where you read it, it will mean different things.
At the very least your kids are a lot more likely to get MS than a kid whose parent doesn’t have MS. 20 -40 times more likely than someone who doesn’t have a parent with MS. Shit.
I had unknowingly passed on my blue eyes, a love of musicals and a genetic vulnerability to MS.
I spent a lot of time feeling guilty about this. When I didn’t feel guilty I felt terrified. Then sad. Then a bit angry. Then sad. You get the idea… What I have learned this year though, and New Year seems a good time to reflect, is that remaining in the sad/angry/guilty ‘fug’ was not going to help my kids.
So. I began to think how I would want them to respond to their MS if it did become a reality for them. Just thinking like that was a pretty painful process, as you can imagine. But once I started it became quite clear.
Their response to it would undoubtedly be informed by their mother’s response to it. By the extent to which they saw their mother fight for her health. By the extent to which they saw MS dictate to her what she could and could not do. By how flaky she was. By how strong she was. I would want them to think “well, it never stopped Mum doing anything” and then bugger off and climb Kilimanjaro or something equally wonderful and exciting. Because that is what I want for my kids. The same as any other parent. I want their life to be wonderful, adventurous and exciting. Happy and healthy. Full of love. I want them to be able to ‘dare greatly’ because they feel strong and fearless. Because they know they are loved.
For them to do this, I need to live my life fearlessly. I need to be strong, happy and to love them and my life fully in spite of its challenges. I can make a practical impact on their views about food, what they eat, if they exercise and how they can live an optimally healthy life. Above all though, I do not want them to feel afraid if MS comes into their life. Into their brain. When I began to think in this way I was flooded with a new energy to face the future. It all began to seem quite simple. I am doing it all, for them.
I am a mum with ms and I am so glad I read this. Thank you!
Thank you for your comment – I thought it was a lovely, poignant post and it echoes a lot of what I thought about parenting and MS too.
x
My response to today’s blog ? I felt cross …. and it was the word
‘fight’ that made me respond that way. One of my close friends and
fellow writer, who also blogs about his health, has opened my eyes to
how we often respond to ill health as if we are going into battle
http://anthonywilsonpoetry.com/2013/01/03/together-we-can-beat-war-as-a-metaphor-for-cancer/
As Anthony’s blog states – it is the professionals who ‘fight’ for our
health …. and in my opinion, to state that we have the choice of
opting for the opposing paths of being either ‘flaky’ or ‘strong’ in
the face of M.S. is not realistic.
At my yearly appointment with the consultant yesterday, we both agreed
that to ‘pace myself’ was what it was all about….. listening to your
body and taking each day, hour, minute as it comes. It’s all about
balancing acceptance with possibility. Any of our offsprings’
responses will undoubtedly, as you say in your article, be informed by
our response to living with M.S……but I would prefer my son to see
me coping cheerfully with the ‘challenge’ of just going about my day
to the best of my ability, than to witness me ‘fighting’ to achieve
the impossible.
Hi Babs!
An interesting comment. I kind of know what you mean – being urged to fight back, battle, etc. But I do think the context is slightly different here?
Although I obviously can’t speak for her, the writer only uses the word ‘fight’ fleetingly.
In my case, I DID have to fight for my health – I fought hard to even get a diagnosis. If I had waited, I would still be waiting today. It was an epic battle (and I don’t use that word lightly). My health was at stake and I just didn’t seem to be getting anywhere. Anyway, now that ‘fight’ is over and I have had the treatment that has (so far) halted my relapses, the fight is over. We are on an even keel and no one will tell me to ‘be brave, fight, you can win this, etc’. And I truly don’t think that’s what the post is about?
I loved this post – it was like a stream of consciousness that I have had too. Interesting to see what other people think? Always good to hear different viewpoints?
x
Brilliant post and my way of thinking too! I want to be my son’s inspiration should he develop MS. I am not an exciting kind of person but i am trying to show him that I have a life with MS, it doesnt stop me from being me and carrying out most things other mummies do. He knows I am tired, find lots of things hard and in a lot of ways it fires his desire for a sibling which we haven’t been able to give him (infertility). The one thing he has in abundance is love and support, I will never fail in that no matter how much I fail at other aspects of motherhood.
Sam xx
Hi there Sam,
You’ve written what I feel. I’ve been through a terrible old time these last few years, feeling like an utter failure at parenting.
Thankfully, my son and I have now muddled through to a new way of living. And in some ways it’s better than before, if that makes sense? I try not to feel guilty any more, as it’s a real waste of precious energy, and instead, like you, focus on what I do well. He will never want for love and support, no matter how tired I am.
It’s a funny state to get to so young (well, 40), but it’s certainly made me wake up and smell the coffee about what’s important and what’s not…
x
Children getting MS
I have just shown your blog to my friend who is volunteer for the M.S. Society Helpline and she wanted me to make it clear, for all those who are worried, that the chances of inheriting M.S. are estimated to be two per cent according to the M.S. Society
http://www.mssociety.org.uk/what-is-ms/womens-health/pregnancy-and-birth#children
‘Unlike conditions such as cystic fibrosis or Huntington’s disease, MS is not directly inherited. Children with a parent with MS are estimated to have a two per cent risk of getting MS. In other words two out of 100 children born to people with MS are likely to get MS themselves. The risk in the general population is one out of every 800 children.
So, although having a parent with MS increases the risk, it is still very small.’
Thanks Babs!
I think for me, this post really resonated as my dad had MS, so of course I have had a lot of questions from my son. Statistics are great, but don’t show the full picture, i.e. my Scottish/Norwegian heritage, growing up in Scotland (when I was asked what age I left Scotland – 14 – the consultant I first saw said ‘oh dear’).
But I do think it’s something we need to be prepared to talk to our kids about, should they ask.
Bizarrely, most of the people I know with MS where I live also have a parent or aunt/uncle with MS. But then again, I did hear that there was an unusual MS ‘activity’ in a band across South Wales.
x
I thought it was a lovely, from-the-heart post. Don’t have kids, so I can’t speak to that aspect, but I really liked what she was saying/how she said it.
I’m with you – I think it’s a beautiful post. Wish I could write as well and as heart-felt!
x
Thanks for all the comments and I am glad the post was helpful to some of you. Yes, this was a stream of consciousness written from an emotional position; as a parent considering the future which can feel very scary at times. Thanks to those Mums who shared their own experiences, I know how hard it can be to share such private feelings/thoughts with others. The blog was, and is, my view and that is all. Everyone with MS has their own experience and many write about it on the internet and I, like you all, find them helpful/unhelpful. I use the word fighting, I guess, as a way to describe the choices which I make in living with MS. I choose to make significant changes to my life and lifestyle, in the hope it will slow progression of (fight?) the MS. I write the blog to share that experience and support/connect with others making similar choices. In relation to the heritability of MS there is a good summary of info on the research here: http://www.overcomingmultiplesclerosis.org/About-MS/What-is-MS/Genetics-of-MS/ which answers the questions more clearly than I can – ‘…the susceptibility to MS is the result of the interaction of several genes. Hence predicting its occurrence in offspring is not possible at present’.
Thanks again for the comments and see you in blog world. Be well :-)
Thanks Rachel! And thanks again for writing such a great post. Lovely to see it being discussed and shared on Twitter and Facebook!
X
I think it’s a great post and one I can certainly relate to. I have had the same thoughts/conversation with myself numerous times. We all think differently. For me, MS is a fight. A daily fight against nature, others or myself. Sometimes it’s a fight against the physical or emotional effects MS causes. It can be a fight to get proper medical care and, if fortunate enough to have options, make decisions about treatments. Some days it’s a fight against the circumstances surrounding us. Sometimes, it’s a fight to find the will to get out of bed in the morning. And other times, it’s a fight to be resolved to staying in bed.
Hi Kerri!
Yup, know exactly what you mean. Some days I just want to stay under my duvet, but maybe we all feel like that (I know my son does….).
I think parenting is ‘hard’ at the best of times without the added stresses and uncertainty of living and adapting to a long-term illness. I really hope me and my son are now through the worst (touches head for wood), but life has a funny way of throwing stuff in your path when you least expect it!
x