Don't worry i'm 'armless

OK, so maybe the title of this post is with poor taste, as I am sure that you will probably see, but felt that putting a humeral stance on this might be best. (Especially when you realise the more serious and sad route to this)

I was informed last year, as I am sure my longer blogging friends will remember, that the progression with my illness (FSHD) is changing enough to make notable changes to my life.

They (The Doctors at the national hospital) informed me that I would likely be loosing the use of my legs within 3 years and my arms in 5. I found this at the time very difficult to take  on board, especially when all i kept thinking was the initial diagnoses stating I have 15 years before this exact progression, and at the time(15 years ago) it was a long way off. Sadly my mind still thought like that. Within this last year, I have seen my health take the predicted toll. My balance is a lot worse and I am falling everyday if I don't use supporting aids. I am also using my wheelchair more and more, but find this difficult with the upper body weakness.

But that is what I wanted to talk about today.

My arms.

I suppose because my legs being weak from day one of the diagnosis that being weaker there has been no real surprise to me. But my arms being weaker upsets me more.

I have always been proud enough to think that I might not be physically able but there is always another option available to me. Take my piano playing. I can do that comfortably, It is something that I am good at but don't have to use my legs. Win win. But now that I am getting prolonged weakness in my arms, this is becoming more and more difficult. Recently I was asked to play the guitar, I had always known the basics of the guitar so thought yeah why not. But a realisation that happened is that I am not 15/16 anymore! My arm strength has changed, the pain and comfortable position meant that playing a consistent strumming pattern was difficult. So I opted for a plucking pattern that was easier, although by the end of playing the song that i was in a lot of pain. Even though at the time I wouldn't have admitted that.

The strength in my arm had changed and I can feel the change. It is weird to describe as the sensation is mainly in my right arm (my more active and stronger arm). The only way I can describe it is that you should imagine or try tensing your bicep for as long as you can, then when you relax you almost feel the "ghost" response of what your arm was doing. I suppose in the terms of relaxing compared to tension that the muscle was under. It is a strange sensation but when i feel it I can also notice the weakness that my arm is showing.

The weakness shows itself in these way.

Difficulties holding a normal cup of liquid (say a cup of coffee)
Pushing myself up from a seated position, making my back curve more and making my shoulder blades push out and "wing" more.
Lifting my arm up (it has always been difficult lifting above the shoulder, but it is now difficult lifting 10"high)
Quick responses (driving and turning the wheel)

Now I know these thing are the start of me losing the ability fall stop. But I suppose in my mind these are the things that make me more able and losing more of my Independence.

Anyway, a quick look at the title again "Don't worry I'm 'armless" I think the thing that I keep reading in this isn't the armless bit, it is the don't worry, I have to keep telling myself this over and over again. Don't worry, this doesn't stop me from being me. I can still talk......which means I can still argue.....happy days!

I suppose i just wanted to get this change off of my chest, keeping my fears and changes to myself will only leave me isolated. So thanks for reading!