How Lucky Do You Feel? (17 March 22)

I have PPMS. An incurable, progressive condition. I find it difficult to walk. I suffer fatigue and many other issues I wont bore you with. I had to give up a career I love due to my ill health.

It can drive me to tears. 

I was nearly in tears tonight walking out of tesco as I stumbled and tripped. But, I thought as I welled up, at least I have a trolley with food in. At least I have a home to go back to, that's warm.

I'm not in a war torn country, being forced to leave. I have my family and friends around me. 

So although I struggle, I will continue to struggle...because i am very lucky, in so many ways. 

Compromises. (March 22)

So, we moved in 18mths ago.

I looked around with a walking stick, no more.

Now I struggle with 2 sticks, and I'm definitely not lady-like on the stairs.

The other half wants to finish making the house ours. Correction, we both do.

But I have other priorities / concerns / considerations to think about at the same time.

We want the bathroom re-tiled... But soon (hopefully not too soon) I may need a chair or grab rails in the shower. I dont want the tiling done and then need stuff re doing because it's not suitable. But do I want a 'disabled' shower chair now? Not really!

I could get a bench seat fitted now but that is complete upheaval.

Have I got enough head space? 

Unsure.

There are grants available. But I'd have to get an occupatiional therapist to come over. They would definitely say a stair lift is needed, plus grab trails out front etc etc. None of this would go down well with those I live with...or me...but I'm resigned to the fact that these things will happen. Where as they can see me surviving now so, let's get on.

They don't see or understand the effort which goes into me 'coping'.

And so the compromise. We will get the bathroom tiled. Make sure its solid enough for rails when needed. Done. Leave the rails for another day. 

It's just the daily discussion that goes on in my head, every day  about everyday decisions.

Decisions for now and yet also for future needs which are inevitable.