Sunday, 12 May 2013

It's Fibro Awareness Day - this is what it means to me

I don’t usually complain about my Myofacial Pain Syndrome or Fibromyalgia on my blog or on social media. I try to talk to the friends who know me well and know how to pray and leave it with them to pray. The whole of social media doesn’t need to know!

But today is Fibromyalgia awareness day (Also ME, CFS and other similar disorders) SO…. I’m going to tell you what life is like at the moment.

I will start by saying that I still carry on doing what I do, I have to find other ways of doing them, but I carry on regardless. Not doing stuff wouldn’t make a difference, so I might as well carry on!

There’s something that many are not aware of that happens to those with a slowly deteriorating disease. Each downward step brings grief, and it sneaks up on you unawares. If you let it, it steals your joy and makes you want to give up. But I decided a long time ago not to let these conditions define me or stop me.

One milestone has brought me relief, fun, but also a return of that grief.

I got a second hand electric wheelchair! It’s great fun, it’s brought me independence (I can now do London meetings without having to drag Steve along and pay for an extra train ticket) and it’s so much more comfortable. 

But it’s also an aching reminder of what I no longer have. Two years ago I could manually wheel myself around, or go to London and use a walking stick (slowly) without worry.

The Fibro and the MPS fight each other, and lately it has been the MPS that has the upper hand. Causing severe pain and permanent damage in my left side - especially my arm/shoulder, hand/wrist making using my walking stick really difficult (I can’t balance if I use it in my other hand) But alongside that, the Fibro is causing weakness in my left leg!

Life is never dull with these conditions!

I still do what I do - but now I have to check accessibility of venues a lot more carefully. I have to book assistance (and hope that it works) for trips to London - why are so many meetings in London? It’s SO inaccessible! If someone chooses a venue where the local tube station is not accessible I either have to pay a fortune on taxis or not go. Considering many of my London meetings don’t pay expenses…… this is costing me a lot of money!

I recently asked on twitter and facebook if anyone knew of any well known speakers who were physically disabled, there were a few - but not many. There are not many in full time Christian work at all - and I can see why.  

I feel honored to do what I do - to serve the church and the children in it. I wouldn’t do anything else - this is what God has called me to and He hasn’t changed His mind! But I say the following with care - It’s flippin’ hard!

It’s not that people don’t care or are deliberately thoughtless, that is so far from the truth! The reality is, it just doesn’t occur to people that a venue may not be accessible, either through transport or steps. When they realise - they are genuinely mortified! But by that time, it’s too late to change, or the more accessible venues are not affordable.

There are of course those who refuse to understand the issues I face - usually people who have known me a long time and just can’t get their head around the fact I don’t function like I used to! But these people are in the minority.

I’m not the only one with these conditions - there are thousands more people with them, some worse than me.

Pray for us, pray for me, but also pray for those people in full time Christian work who have a disability - many of them hidden disabilities, some more obvious, but all of us having to work harder to do what we do.

NOTE: This is not written for sympathy - I don't like sympathy! That's why you'll often hear my hubby say un-politically correct things to me - it makes me laugh!

1 comment:

  1. Thanks for this post :-)

    My fibro is pretty rotten at this point, and I'm not up to much. But I do aspire to fulfilling my callings somehow :-)


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