Limits – a Rare Disease Day post.

Rare Disease Day 2012

Rare Disease Day 2012

Acceptance of one’s life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices. ~Paul Tournier

Something that I’ve discovered over the years, when dealing with my illness, is the need for flexibility in all things.  Obviously I plan to do things, and I hope to do things and – sometimes – I even get to do things but there are other times when the things in questions just don’t happen.

I suppose it is like everyone else; a plan is made to do something, say meet friends for a meal, or to see a movie, and something comes up – it could be work, a flat tyre, a headache, sick children, etc.  We’ve all been there, right?  However, for me (and so many others) plans are sometimes made and the thing that comes up is simply that it cannot be done.  There is no energy left in ones body, or every muscle hurts, or – thankfully only occasionally – both.

It is hard to let people know that you are letting them down because you are tired.

That sentence, just above, has been MY personal problem for a long time, and it was all to do with not fully accepting I had a physical problem at all and, therefore, not being able to let others help.

You see I wasn’t just tired – I was suffering from symptoms of a medical condition.  Everyone gets tired, of course, but not everyone has a condition that makes their muscles weaker, fatigue faster and recover slower.  Not everyone, when they are tired, runs the risk of their breathing degenerating.

Also, I wasn’t letting anyone down.  If I had been honest with my friends – all of them, all of the time – they would have been NOTHING but supportive of me and my reasons for not always being able to do what was planned.

However I wasn’t open and honest so, at the end of the day, I was blaming myself for a weakness that wasn’t beyond my control and compounding this by assuming that the people closest to me would think less of me somehow.

Yeah – what an idiot!

Accepting limits, or even just acknowledging them, is not the same as resigning oneself to one’s fate, or giving up.  It is – as I am realising – simply being sensible and perhaps losing a small battle but being able to fight the war another day.

Which leads me to my point – yes, I actually do have one – which is this:

The post that I wanted to do today wasn’t what I’ve just written (it was about an extended stay in hospital, when my tendons were fixed and I was first diagnosed with the muscle condition, the subsequent long recovery) but I’m going to leave that for another day.

Why, you ask?

Well, I’ll tell you.

I’m tired.  Actually I am beyond tired.  I am exhausted – in the literal, not the hyperbole, sense of the word.  It is a struggle to sit here and write these words but I know that, if I were to attempt to write the ones that I want to, I won’t finish.

I’ve worked hard al week, had late nights, played with my kids, taught to martial art classes, driven close to 1000 miles .. and many, many, other things.  They’ve all caught up with me.

In the past I would have pushed through and tried to do the writing now anyway; I may even have succeeded.  I would, though, have been pushing past my limits and paying for it over the coming days … I would have been more tired, for longer, and possible even run myself down until I got ill.

I’ve accepted that I am not physically able to do everything just as I’ve accepted my limits and having to plan better without punishing myself for my decisions.

So I’m postponing my big post for now and taking a break, knowing that I can write it tomorrow – or the next day.  Knowing that, by doing so, I will be ABLE to write it tomorrow or the next day, as well as many other things.

That, my friends, is progress.  That is acceptance of limits.

If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

@rarediseaseday #raredisease