Struggling to Walk

Having FSH Muscular Dystrophy has it’s highs and lows.

The last 24 years have seen my physical health change so dramatically.

I suppose that comes with the territory of having a degenerative condition.

The thing is it is never fully clear how far the condition will take you. The only thing that is fully clear with people who have FSH is that it affects everyone differently.

The condition isn’t even linked with families.

Although it is genetically passed from generation to generation each person is affected differently.

For some, it can result in weakness not only of facial muscles and shoulders/upper arms, but also of additional combinations from the neck, forearms, wrists, fingers, hips, legs, ankles and the back muscles.

Around 10-20% of people eventually require a wheelchair, but by contrast, up to one third remain unaware of symptoms at least into old age, although may well have subtle detectable clinical signs. The majority of people come between these two extremes.

So, as you see, it can vary.

Over the years I have met or found other FSH suffers and despite seeing the obvious symptoms and markers of FSH they are all different.

One family, for example, found that their uncle started struggling walking. After some hospital treatment they discovered that he had inherited it. They then realised that their paternal grandfather, a wheelchair user, was the one who passed it on. Then, through the family being tested, they found that a grandchild had inherited it. That child was so severe that they were a wheelchair user by their 20s and needed full time care.

The prognosis for me has always shown that I am in the 1% of the most severe. Yet, each step of the way I haven’t hit the targets that the specialists predict.

This has always been down to the fact that I am stubborn and refuse to listen. You’re all surprised aren’t you?

The problem for all is this condition can have a catch 22 scenario. If I do too much physically it can damage my muscles and make me deteriorate quicker. I do too little and it does the same.

When I was told to be in a wheelchair for my own safety I refused and carried on walking. When I was told to rest more and not push myself I took on more work.

Somehow, through not giving up and taking on board their recommendations I have kept my health at a stable level. I have somehow done just enough to keep me going for as long as I have.

A few years ago, after a day out to London on a Home Ed trip, I realised that I pushed myself too far. I suffered for a few days after. I had a few near falls and realised that I put the boys potentially, at risk in a busy and unknown place. That was the day that I realised I needed to use the wheelchair outside. I could keep walking, standing and moving inside and outside and be safe, secure and carry on being active.

That was up to this year.

This year has been hellish for us here. I think it would be an understatement to say that mine and Hannah’s mental health has been pushed pretty far.

Isn’t it funny how mental health and physical health are closely linked?

With mental health down and struggling I rested more. With mental health struggling my sleeping went down hill. Sleeping less then knocked on to what I was physically able to do. Subsequently I was in the wheelchair more day to day or resting more to recover. So the cycle began.

It doesn’t take much. Something just to knock that magical “somehow" trick I’ve been doing for so long off.

In some ways it is expected. As mentioned above, it is a degenerative condition. I was always losing weakness in areas but it wasn’t dramatic. The degeneration happens.

Yet to have something dramatic affect my standing, moving and walking hit hard.

There could, of course, be outside factors. I have put weight on this year. One could assume that the mental health struggle, led to comfort eating and then the weight piling on.

The extra weight on top of my walking would put a strain on my legs and subsequently that could weaken and increase the degenerative factors.

I won’t fully accept that it is just that.

My legs are hurting more. My muscles throughout are hurting more. I’m finding moving my legs more difficult in each step.

The truth is the wheelchair is no longer just an outside aid. It is now being used 75% of the time.

I know there is still a lot to come with this condition. I know there are more muscles to get weaker and that this condition will take a heavier toll on me years down the line. That said, hitting a marker where I need the wheelchair more is a harder pill to swallow than I was expecting.

I suppose it is something, with time, I’ll get my head around but for now it’s something that I’m struggling with.