Struggling slightly.

I have been having a difficult time recently.

I suffer from a condition called FSHD, with the combination of the affects of Polymyositis.

FSHD is a muscle wasting condition, caused by a genetic fault, which may be affecting the regulation of the level of many of the different proteins in muscles. And Polymyositis is a disease of muscle featuring inflammation of the muscle fibers. The cause of the disease is not known. It begins when white blood cells, the immune cells of inflammation, spontaneously invade muscles. This then being combined means that the proteins that are being provided are being blocked and and "attacked" by the white blood cells.

My experience is written below is how the illnesses affects me, It might not affect everybody the same. What is written is my experiences and as stated by the medical specialists I see that not only is my personal case is rarely seen, that it is also one of the most severe that they have seen.


My Muscles are slowly deteriorating and getting weaker and weaker.

Generally at the moment my arms still have use, although I am feeling that they are getting weaker. An example of this is that on a varied day I struggle one handed to drink a cup of tea of hold a pint glass of liquid without my other hand supporting the lifting from the base of the cup of glass.
My legs are getting a lot thinner and are also getting weaker. I am now not walking without aid, as I often loose my balance and it assists low and shallow steps.
I tend to twitch a lot. It has always been explained to me that the twitching is where my muscles are tired and where most people would feel the strain in their muscles, this is usually where your muscles tighten to control the strain, my muscles do not have the strength to keep the strain so my muscles twitch to release the strain. Although, I can make motions like the twitching to help, 90% of the time these are unwanted and uncontrolled twitches.
An example of how this would affect me: If my legs twitch I would fall (Collapse) where the strength in my leg muscles relax. If I am holding a drink it would fall out of my hand or go all over a surface. If I have an all body twitch I fall back in a jerk and fall without being able to reach and protect myself.

This is currently what I am coping with everyday. My health has not really, up to this point, upset me. It has been something I have had for 15 years and has almost been a part of my life. But now I am really struggling, I am finding everything so difficult, can barely go a day without falling or twitching with an affect.
I understand that my existence here on earth with ill health is nothing to the potential healing and eternity I have in heaven with the Lord. That gives me hope for new life, that gives me hope that 40 odd years of suffering is tolerable. But I suppose like most humans, I struggle with the now. I find it difficult to keep waking up knowing I have another day a head of pain and annoyance. I pray daily for healing now, remembering the Lord's prayer verse, "Give us this day our daily bread" Asking for a piece of what we have in eternity now. But it is still difficult to go day by day.

I pray, read, act in fellowship and try my hardest to be a good example for God to use. I like the fact that God may use me and my illness for good. Knowing that He didn't give it to me, but being reminded that He likes to turn bad to good. These are all things that keep me on the up, but the more my health deteriorates the more difficult it is for the reasoning and with the illness being untreatable it is becoming a struggle to cope.

So that's what's going on with my health.

For any others that are struggling with their health maybe these verses might help, they have helped me, even if it does need it to read it regularly!

Revelations 21:1-4
Then I saw “a new heaven and a new earth,” for the first heaven and the first earth had passed away, and there was no longer any sea. ² I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. ³ And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ⁴ ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

Isaiah 33:24
²⁴ No one living in Zion will say, “I am ill”; and the sins of those who dwell there will be forgiven.

Ecclesiastes 9:4-6
⁴ Anyone who is among the living has hope—even a live dog is better off than a dead lion!  ⁵ For the living know that they will die, but the dead know nothing; they have no further reward, and even their name is forgotten.

(Personally, the last is my favourite, My hope is in God, highlighting the "but the dead know nothing; they have no further reward" Meaning when we die in Christ we will receive the greatest reward, not needing any other.)