Married to CFS/ME

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Married to CFS/ME

Postby Jayuk » Fri Dec 27, 2013 2:04 pm

My wife has had CFS/ME/Fibromyalgia (OCD and Ednos) for more than a decade and slowly we have come to terms with it(obviously she has more coming to terms) I was interested in some of the FB posts and how some sufferers experience less than supportive lives. I can only say this makes me a little sad as I know how being united can help my wife on some days when she cant get up or struggles to cope with the everyday things like putting on socks! I have become obsessed with helping her get a better quality of life and we have made changes which she claims have helped her, she use to sleep poorly day and night just dozing with no real rejuvenating at all. Now she can stay awake most days and live a limited but better quality of life(sufferers will know how poor even this is) I am committed to making every aspect of my wife's life better and have spent hundreds of primary research papers associated with some success in getting a positive reaction from quality of life reports. I am not a physician just academic researcher who wants the life of my wife to be as good as it can be until the rest of the research community catch up and contribute. Even some advice that may help other spouses, relatives, co-workers, children or maybe just the general population see this invisible epidemic for the aggressive and debilitating condition it is.
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Re: Married to CFS/ME

Postby whoami » Fri Dec 27, 2013 2:55 pm

It is wonderful to hear that a spouse has taken such a positive attitude. Your support is the best medicine your wife could get. It is nice that you see fibro as both your wifes and your illness. Don't wear yourself out though as you will be no good for either of you.

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Re: Married to CFS/ME

Postby Jayuk » Sat Dec 28, 2013 8:10 pm

Thanks whoami our lives are intertwined so anything that hurts her hurts me too, :(
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Re: Married to CFS/ME

Postby FluppyPuffy » Sat Dec 28, 2013 10:09 pm

:cow-wave: :cow-wave: and :welcome: Jayuk :cow-wave: :cow-wave:

We don't often hear from those who help and look after us, so having you join us is :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

Sadly it is true that a number of people don't receive the support and understanding from those around them :( :( :( :( I experienced a little of this in the early days of FM appearing from someone who I thought that whatever happened to me, would be there (or at least try to be there) unconditionally. Having this happen really cut and hurt me deeply, and took quite a long time to get over. It also marred how things were between us, which took even longer for me to work thru and resolve.

Having someone who we know is "there for for us" makes a huge difference is so many ways, even tho it may not always apparent :oops: :oops: :oops:

It's really :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: reading how you have helped improve areas in your wife's life. Maybe you'll have a suggestion or 2 that could help some on here as well. As whoami has said tho, don't wear yourself out, you need quality in your life as well. Ensure you have some time for yourself to indulge in something special that helps keep you lifted, so that you both continue bobbling along together :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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Re: Married to CFS/ME

Postby Katie Louise » Sat Dec 28, 2013 10:46 pm

Wow I can't believe how supportive you are. My husband tries to be supportive but at the moment it is just words and no action, I think it is because he is so used to me being able to do it or struggling for so long without saying anything. We are still working on coming to terms ot is putting a lot of pressure on our relationship at the moment. It is lovely to read your post I to hear more from you.

I hope your wife knows how lucky she is (I'm sure she does) just don't forget to look after yourself to.

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Re: Married to CFS/ME

Postby HazelB » Sun Dec 29, 2013 12:18 am

I am lucky in that my hubby has been 100% supportive from day 1...even giving up work when our daughter was young to care for us both. She's 20 now and also has fibro, so he still cares for both of us. Tho saying that, he has his own health issues so we all care for each other at times. Xxx

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Re: Married to CFS/ME

Postby denys » Sun Dec 29, 2013 4:48 pm

Hi :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: Married to CFS/ME

Postby macca » Sun Dec 29, 2013 9:58 pm

Top post Jay and big respect to you as I come from the same place also having a wife unfortunate enough to have the dreaded illness, and taking the vow 'in sickness and in health' seriously. In terms of support she has me, our kids ( 23 & 18) her mum, and her GP, but thats about it. She's the type of person who puts herself last far too often, and that can be infuriating sometimes. Because she never complains about her problems or the effect they have on her quality of life, she gets no support or understanding from any other family member. I tend to think that its pointless looking for something that isn't gonna come.

Do i think about the future? .. Yes all the time, i worry about how much worse she may get in time, and i worry about her care needs. I think about how i can reduce my work committments over time to be there for her more, but being a slave to a mortgage makes that something of a difficult one.

So for the time being we take things one day at a time.

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