Hi there to all fellow Multiple Sclerosis partners. My husband J is living with MS, initially diagnosed about 15 years ago. He has relapsing-remitting MS and is currently struggling through what has probably been the worst remitting stage yet, struggling to keep his balance, and walking with a stick as support. He is 37 years old, and used to be a fit and healthy runner and swimmer.
We are blessed in that the aggressive progression of the disease has been relatively slow and I believe that it's due to our determination not to let the disease run our lives. We have two beautiful daughters who we have tried thus far to give as normal a life as possible, but who are now becoming old enough to notice that Daddy is not like all the other Dads in some ways.
I would love to share, offer support, and gain support from other MS partners, who I think at times are forgotten in the focus on the MS patient him/herself. It's not that as partners we feel sorry for ourselves, it's just that if we don't feel supported and understood, that our ability to help our partners may be affected due to years of giving exhausting support, assistance and unconditional love, while still trying to cope with the pressures of everyday life.
I'd love to hear from you! Take care.
Nix
About Me
- Nix
- I'm a happily married (for 10 years now) wife to an MS sufferer - some days happier than others! Just like you probably, I have done all the MS research under the sun - and where I have found it lacking is in support for the partner or spouse of an MS sufferer. Hence this blog... it's to share the triumphs and the pains, and to vent and share - with others who know what we go through too. Please join up and contribute and lets fight this disease together!
Hi Nix! Thanks for reaching out and putting up this blog! 'Language' embodying 'culture'; I now have a moniker for my role-thanks to you: an MS 'partner'. My youngest sister and a dear friend-who has resided in South Afrika-who is like one; who have been progressing-if that's the word-in their diagnoses.
ReplyDeleteIt is difficult to know how to be of most support to them; since they are both very privately enduring individuals, who have a history of being strongly, powerfully, active and confident womyn. This sounds like your husband's original life expression as well-'athletic'.
You can talk to me anytime-if you just want to vent-I am a default highly compassionate human-who also has a professional background in crisis intervention; human relations process design, education and implementation; and dialogue.
I just want to be as proactively and empoweringly supportive for their sakes; as I can without imposing my 'anything can happen' default penchant for 'progressive'/'innovative research and assertively lobbying for its implementation the way that I normally do. That is the kind of action that I as a 'partner', would prefer.
I suppose that you're aware of this recent bright light in the field? [news.bbc.co.uk/2/hi/uk_news/scotland/2542143.stm]
You, however, are not merely a 'partner'; but also a lifetime spouse of the diagnosed individual as well: what it must be like to manage the psycho-emotionality of all of these changes in one you love!
What are some issues, services, etc., regarding yourself as an MS partner that you would appreciate having made more available?
I was diagnosed with MS in 2008.. My sex life up to then was amazing.. now that the disease is really affecting me physically, my wife has lost interest in me.. Sexually that is. I dont know if its the MS, or me.
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