YOU, M.E AND A BUMPY WEEK (From Watford Observer)

YOU, M.E AND A BUMPY WEEK

10:31pm Thursday 15th July 2010

• Print
• Email
• Comments(4)

By Stacy Hart »

Halleluiah, I’ve had such a bumpy week, physically & emotionally, that under normal circumstances I would’ve been banging my head against the bedroom wall…well any wall come to think of it, I’m not fussy, as long as it’s solid enough to leave an indent in the middle of my forehead I’m happy, but there’s been a high amongst the lows, so I’ve not needed to bang my head after all this week and it’s all thanx to the gospel manna choir and my mum…………….

As Sunday drew nearer and it was clear I wasn’t going to be able to join the choir on stage for Watford live up by the pond I became really upset. It’s extremely hard to explain but I’ll try in my usual rambling way. With M.E we don’t have the luxury of doing anything without advanced planning, and then it still might not happen, and of course afterwards they’ll be consequences because there always is in some way, shape or form. www.afme.org.uk

Since joining the choir in February I haven’t been able to attend or participate in any events, which is quite possibly wonderful for them because they get some peace and quiet lol! But Watford by the pond was ideal for me, I could be dropped off by Sainsburys with only a few paces to walk, there’s toilets right by the pond in the subway…..a lot of people with M.E also suffer with bowel and bladder problems…yep it was perfect.

Sunday arrived, BUT…..I was too ill to attend, one step away from my dying mode in fact. If I couldn’t even make Watford then I’d never be able to join them surely? And that raised bigger questions about my life and limitation and a whole heap of other stuff and if I started telling you about it we’d be here til next Friday found under a huge pile of wet and soggy Kleenex.

Then my mum said “what would be worse, being ill and still attempting to go, or being ill and not going? So that was it, I booked the cab and got myself ready. www.gospelmanna.com

Dress requirements were black and red????....red????? Have you not seen my hair? It’s pink, thankfully there was the added choice of all black…phew, and I snuck a bit of pink in on my trainers and t-shirt, but that wasn’t being rebellious it was because I haven’t got stuff that’s all black, so neeeeeearly all black it was then.

Then I went back to lay on the bed and drink 7up to prevent my stomach contents from coming back up to say hallo to those in the front row. The sun was shining but there was a lovely breeze so it was a beautiful day and it was great to see everyone when I arrived, we marched onto the stage, we sang accapella, we clapped our hands and we sang one of my fave club trax, Shackles (I wanna praise you).

I felt so honoured to be stood up there with them all finally taking part. I only cheated on one song by miming because firstly I’d forgotten the words, Whoops! But I was also running out of breath courtesy of the exhaustion that M.E presents, and wanted to save some for the last song.

When I got home I was buzzing….no, I hadn’t left my phone on vibrate, this was the feel good factor of finally being able to perform with them. By 7pm that evening all functioning was virtually at a standstill, I was unable to swallow properly and even choking on my own spittle, breathing was shallow and a real effort and my thoughts were jumbled BUT…..I was smiling on the inside. I’ve continued to struggle since but I’m happy and like I said there’s always a consequence and this is it.

In some ways it’s extremely frustrating as far as the authorities go because they see someone like me doing something like singing with the choir and think, she’s fine, nothing wrong with her. They don’t see the struggle to achieve that one thing and they don’t see the consequences we’re left with after doing something.

I talk to so many people with M.E who are frightened to attempt something because unfortunately as things stand at the moment if you don’t look ill and you can move your arms and legs, the benefit people are withdrawing your money and more and more people are even losing after appeal.

How sad that as well as coping with this awful illness people are feeling guilty to laugh, guilty to try and carve out some kind of life and enjoy some rare normality, we’re so limited in what we can do and yet punished when we try to make an effort, instead of judgement and being made to feel like criminals we need some understanding of this debilitating illness. We’re told they do understand and yet actions are saying differently. I’ve lived with that fear for too long and I’m not doing it anymore, I shouldn’t have to.

The track “Earl” needs a few more twiddles and then it’s down to the final mix, its got a lovely reggae feel and I’m looking forward to the next studio session, we’re also still working on “say” and that isn’t far from completion either, and I’m still searching, sorting out and ebaying to raise some cash flow to allow me to keep going on the music front. www.myspace.com/mamachill

As for virgin? We’re not running smoothly JUST yet. The computer crashed on Saturday, I thought I’d ring to see if there was work being carried out but there wasn’t. The advisor decided it was a faulty installation or a frequency problem that would need an engineer to come and fit a spike guard……a what? “Are you sure it’s not just a case of work going on somewhere?” I checked. But my advisor was sure there wasn’t and booked an engineer. The connection came back the next day.

The engineer came the following day and was clean, polite, friendly and someone any company would be proud to have represent them. When I told him what the advisor had said and mentioned the spike guard, he said “A what”?........precisely. Turns out there was nothing wrong and probably just some work being carried out over the weekend that effected it, so I was right?…………hey I’m a woman it’s only natural. So now I’m hoping we’re over the bump……watch this space.

Enjoy your weekend, see ya next Friday, stay blessed, back before Elvis :) xxx