Friday 16 November 2012

my disabilities have stolen my husband


Wow erm kinda feeling numb cus since my mental cognition has returned I have felt something missing and iv felt it before but couldn't name it. I know I was in denial, I don't want to accept what it was I was feeling.

My husband does everything and I mean everything, he looks after the housekeeping, cooking, washing, the kids & me and he is brilliant at it.  I don't want for anything because he does it all for me.

So what's my problem what is it that is burning a hole through my chest ?  Sadly iv realised we are no longer emotionally connected he is JUST my carer and we are married.

He cares for me has done for 11 yrs and iv realised that slowly and quietly over the years as my disabilities took more and more of me away, they slowly stole my Husband and gave me the best carer in the world.

He is awesome, but we are missing our emotional connection, its gone ad iv tried to talk to him but he gets defensive and shuts down.

I need my husband back and dont know what to do I'm just numb from the realisation that my disabilities stole my husband and gave me a gold medal winning carer.

I know he loves me but don't think he is In love with me, he cares for me like I'm a queen but for me that's not enough I need someone that can be there for me emotionally because my disabilities take alot out of me.

I want a hug when sat sobbing in pain saying rather be dead than go through aymore.  I need conversation about feelings, good or bad, happy or sad, I need to feel connected..

When I asked him why he didn't try to comfort me he replied 'you cry a lot lately" his answer broke my heart because to me that answer basically said "Is There Any Point ?" 4years ago he would of held me in his arms, stroked my hair and told me I'd be ok not ignored me but it seems the more sick I got the less empathic and loving he got.

I have suggested mediation, anything to re connect and he won't - I dont know what else I can do ? I feel like he doesn't want to re connect because he says nothing is wrong.

I can't live like that - I'm so confused because I do love him but love isn't enough to carry a relationship !?!

For all the things my disabilities stole I never ever imagined it could take something so special to me, so needed ! Yet it has, I say this with a deep darkness in my heart, if my husband chooses to be just my carer then we will eventually cease to be married.

I NEED to be emotionally connected,  its an essential requirement in a relationship for ME . . .

I need him to see me as his wife not just a disabled women . . .

Georgie x

Friday 2 November 2012

Fibro' you're not having those ! Its all I have left.


Fibromyalgia & Dercums Disease have taken so much I often wonder what I have left.

They have taken my dreams, hopes and aspirations chewed them up and spat them back out into a muddled heap.

I wanted to buy a little house in the countryside, set up my own little private counselling practice. I wanted to look forwards to my childrens children visiting me.  i wanted to enjoy my old age, grow old with my husband and have our lives once the children had flown the nest.

Invisible Disability took from me everything I took for granted, walking endless miles, camera in hand, preperation and cooking of food. Wearing whatever I wanted, when I wanted.  It made sure I can no longer sit on a soft sofa for more than a few hours, that I'd never sit at the kitchen table with my family.

It took my ability to reproduce in every sense of the word, as at age 36 I had to have a full hysterectomy. To be fair I didn't want more children but having that surgery so young has its own bag of balls to throw at a person.

It has taken from me being able to grocery shop, remember things, retain new information in a way I always understand.  I can no longer hold long conersations as unless they are in writing I will forget what I was talking about,  so its taken my ability to be self sufficient and self caring.

Its stolen the fun things I used to do with my children, no shopping trips, trips to the cinema, parks, camping, No more watching my boys at football practice, no cheering them on at matches.  Its taken away my ability to leave the house.

It took from me my ability to sleep, my ability to wake up. It took things  I hadn't realised I took for granted, my bodies ability to regulate its own temperature, to deal with aything cold.. It took my appetite and with that it took my ability to be able to eat whatever I wanted.

Its taken dancing from me and finally exercise to, it has at times taken my mental health, my pride, self respect and esteem.  I feel like I can feel them shortening my life, I can only imagine that this life, my nothingness will be a long drawn out painful death, because this is not living, not for me.

Invisible Disability has taken away my ability to ever feel well, imagine living your life as if you had flu, 24 hours a day, 7 days a week, 365 days a year !  and that is only half the battle.

It has taken everything I took for granted and then some, to which point I no longer recognise the life that I have, I look like me, I sound like me but I am not the me that I once was, a working, houseproud, independent, married, mom to 3 wonderful kids.

My children have lost their mom a mom that used to do things with them. My husband has lost a wife and become a carer, which also meant his career as a cabinet maker was lost to.

I am a shell because all iv been left with are a sense of humour and  defiance  to try and be all I can be with what I have left.

Even then my invisible disabilities try to get that from me, at times they win, but never for long as the harder they try the more defiant I am, no way are they taking my sense of humour either as that is all I have left of the me that I recognise.

I fear future struggles, I fear what my future holds for me, what impact my disabilities are going to have on my husband, my chidlren and myself and my ability to bounce back, because in all honesty I'm scared of what will happen when my invisible dsabilities take that away from me to.

There are times I sit wth tears rolling down my cheeks saying "I don't want to live like this, I am exhausted beyond caring, I want to die because I can't imagine spending anymore time like THIS. I don't want to suffer anymore I wan't to fall asleep and never wake up"

Do not confuse what I have said with me being suicidal I am not ! Invisible disabilities have taken a lot from me, they however cannot take away how other people feel about me. I am loved and cherished and its because of these people I find a way to carry on.

Xx Georgie