Thursday, 25 February 2016

Bringing myself back down to earth...

Hello everyone!

Well it's February already!? Having said that I've done quite a bit this year...

I'm going to focus this post on getting carried away, a lot of us do it when we're having a good spell. I actually used to be very good at taking things very slowly and being patient but I find that after a few years I'm losing that patience a bit, mainly because I'm approaching 25 and my 20's are becoming a nightmare when they should be the "most fun years of my life", other than school of course... which I despised more than anything!


Some of you will know that I've been keeping an "ME Positivity Vlog" which I update after I've had a few positive things going on. I've vlogged a lot about how my M.E. symptoms affect me and it becomes a bit tedious after a while so I really like the idea of focusing my vlogs purely on positive happenings.

Here's my latest Vlog:

Usually I like them to be a bit shorter but I had a lot to cover here as I hadn't updated it in a while.

The latter part of January and beginning of February was extremely positive for me. I've had a few outings, got more involved in things but then I've forgotten about what limits I've had over the past 3 years and pushed myself.

One thing I'd been working very hard at is my singing, I'd spent a lot of time practicing for my exam which was last week. I record the exam on my phone and listened back to it afterwards, overall I was pleased with how it went.

Here's one of the songs from the exam:

Another positive thing is that I've started to become more involved with the church. It's been difficult for me but not because my faith has been lacking. I find big crowds difficult and overbearing a lot of the time. My concentration from brain fog also leaves a lot to be desired so actually listening to a sermon is hard, there's a lot that doesn't go in and it's very frustrating. Prayer meetings have been difficult but I've attending a few recently, sitting still for a long period of time I find very challenging. On top of that, the parking is always a problem as there's always a short walk involved, not a big one but on top of the other difficulties it adds to the stress.

I already help out with the young kids sometimes on a Sunday morning and I've put myself forward to help at one of the older kids clubs on a Friday. It's big progress for me but then I forgot my boundaries and an opportunity to go on a mission trip came up. It's something I'd previously prayed about and my heart was in it, so of course I was very keen on the idea. In the end I just knew it wouldn't be fair on the team and also a massive risk on my part.


It was only when I actually broke down into bits what I was capable of each day that I realised just how far away I am from the "typical" healthy life.

I see spending 15 hours a day in bed as good. That's not normal but it's become the norm for me. Let's take church for example, after a Sunday service I will have my lunch when I get home and then go to bed until tea time. I don't sleep all of that time but I feel too weak to start walking around the house continuously or actually leaving it.

A couple of days ago I went to play a couple of games of snooker. My co-ordination was going quickly during the second game and the rest of that day I found it hard even walking properly around the house.

Yesterday I met up with a friend and did a small amount of walking, I ended up taking 3 tramadol tablets because it triggered off the pain in my legs which then spread.

These aren't big tasks, these are things that the average person wouldn't think twice about and just do it. It reminded me how careful I have to be.

I think also that the climax of my singing exam hit me pretty hard, I'd practiced a lot and the stress of it all wasn't great for my health, especially with the weekly lessons. Luckily I was allowed to sit down for the duration of the exam. It doesn't help that I've still got a lot of coursework to do with not much time left. I'll feel a great weight being lifted from my shoulders when that's done.


I have to remember that I am gradually heading in the right direction, I've got to make the most of what I've got and stop comparing my activities to the average persons. I even keep beating myself up over the fact I've got a very small belly pouch despite eating ultra healthy and doing what bit of exercise I can... thinking about it I'm lucky I'm not obese from the severe lack of activity I get!

I've got my 3 night trip to Madrid in a few weeks for my mum's 60th. It's going to be a big ask but careful planning should see me through, I have to try out new things and to an extent push my limits. I'm going to get set backs but then I'd rather that than having never tried... I'm also hoping to attend a Christian event called Word Alive in April which isn't long after the Madrid trip. The good thing is that the different events their are optional so there's no pressure. I have to remember too that completing my singing exam is a massive step too considering it's something I've been working towards for over 2 and a half years!

I have been pretty occupied and therefore I've found it difficult to keep up to date with contacting everyone so I apologise for that but then I know you all understand...

I hope you're all having a good year so far and remember to keep grounded!!!

Barry x
Dahlia keeping me company the night I posted this! <3

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