Myotonic Dystrophy

Depression is not always so obvious

Depression

Sometimes my condition leaves me in a very low mood. Is it depression? Maybe. I don’t know for sure. I have not had or even asked for a diagnosis. I am not sure I want one. But when I think too much of the future it scares me. I have a condition that will get worse every single day until the day I die. The pain will not stop. The weakness will continue. The fatigue is always there. My eyes will suffer, my heart Every organ of my body. It will never stop. There is no cure.

think, “Why me?”. What did I do? I used to be active. I played a lot of sport. I was good at it. I get sad when I think about things I can no longer do. And will never do again.

>When I dream, I am able bodied. I walk or run around as I did before. There is no pain there are no issues. I am taking my ability to walk, run and play sport for granted as I used to do. Then I wake up. To the pain. I do not feel rested. Back to the fatigue. Even the ability to climb out of bed is a challenge due to the weakness in my limbs. My dream Is over and I am back to the reality of my condition. It upsets me. Almost daily.

I sometimes feel I am a burden. Primarily to my family. To go almost anywhere I must go in a wheelchair. A manual one which must be pushed. Or my electric wheelchair that is very heavy. My wife cannot lift it alone to put into the car. I unable to help (I can’t even stand for long enough). My son helps or, occasionally, a passer-by offers to help. This is not what they signed up for and I feel guilt and remorse for the life that is now present.

My wife and son sometimes go on trips without me as I would not physically be able to go. I do not resent them at all for this. I encourage them to go. They should not be restricted in anyway due to my condition. That’s not to day I don’t feel sad That I can’t join in. I do.

I feel sad a lot of the time. But not all the time. I need to come to terms with my condition and accept the life that I have been given. I know there are people even worse off than me. But this is my battle and I am fighting to win.