Mito suck

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My life has become a rollercoaster ride with ups and downs. Mito has taken the life i once knew but not only mine but my family's too. My wife and daughter have seen the once strong man to this person who sleeps lots, no energy, no muscles ect. My daughter is very much a daddy's girl. We used to ride motorbikes lots among other things and mito has taken that from us.

From a fit  healthy person i was 4 and half years ago i now have wrist splits, and walking stick, and walking frame, a breathing machine at night, multiple medications. 

At the end of this month (October 2015) Mito will take my job. After 22+ years of dairy farming i can no longer do it (along with my family) farming is my life, but not only mine but my daughters too. She loves coming out and helping me, she has been raised on a farm her whole life and is all she has ever known, loves animals and the things country life is all about: freedom   It's my disease but yet it affects so many people around me and i hate that fact. Causes so much uncertainty, anger, sadness, so many emotions. 

I hate the person I have become! In my eyes i'm lazy, i should be just sucking it up, i'm now very judgemental i think to myself: what have you got to be depressed about.... Try living in my shoes or even my 12 year old daughters or my wife's, who she herself is unwell  . The fact people bitch and moan about their lives but they can change things in theirs to make it better but don't. I can't change the fact i have a rare disease and its changing my life if I want it to or not!! 

Is the old me gone???? Or just lost, i have no humour anymore, the fun loving person has vanished,  

Fear of the unknown where/what is Mito going to do next.

I've heard the term fear a bit lately as once again it's not only me it affects. My 12 old is full of fear, my wife is full of fear, along with being unwell herself. 

We leave our home of 9 years to to go into the unknown. Who knows how it will work out financially, emotionally, physically, mentally for any of us. I have seen my two oldest daughters grow up and move out of home here, and so many good memories.

There is some positive to come out of having this disease, one being having to have a muscle biopsy. At the time it was frustrating been put off twice but on the 3 time my wife got chatting to this lovely lady, turns out she and her husband had my little nephew. Since meeting them our family has grown, i have a nephew i see lots and also have gained some lovely friends.

Also i will now have time to spend with family and friends without watching the clock 

I have my good days and bad days, some days it's hard to see the positive! Where can you turn when it so uncommon in New Zealand, not many people understand, I sleep because I need to not because I want to, my legs give way because there is not much muscle to help keep them up, i find it hard to chew because the face muscles get tired. My body is eating itself, i'm tired of the muscle spasms and twitching 

I want my life back, i want my health back

#mitosucks