Wednesday, 27 July 2016

#Spoonie Update

Hi everyone, I'm back with the vlogs and this time they'll be a lot more frequent! Just giving you a brief(ish) update on how I've been recently. Hope you're all doing Ok!

Tuesday, 12 April 2016

#Spoonie Virus - 4

Thanks everyone for the lovely comments and support re my latest vlogs. I am aware there's people who have messaged me and I promise I will get back to you but it's been a very stressful week that's been taken over with coursework, hence no vlog yesterday trying to get it done ASAP! Hope you're all having a pain free day x

Here's the playlist:

Sunday, 10 April 2016

#Spoonie Sleep - 3

This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.

One thing I forgot to add *brain fog* is that mornings are incredible difficult, especially with the pain/stiffness/fatigue etc.

Saturday, 9 April 2016

#Spoonie Relationships - 2

This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.

Friday, 8 April 2016

#Spoonie Birthday's - 1

This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.

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

Friday, 1 January 2016

Happy New Year everyone: A review of 2015!

Hello everyone!

It's the New Year and 1 of my resolutions is to keep on top of my blogs, it's a way to track my progress with various things and it's also a way to let my friends what's going on.

2015 wasn't a great year but I'm going to focus on the positives and focusing on the negatives never gets you anywhere! It didn't get off to a good start and took me a long while to get over various things.


I'm going to start back in April when I was discharged from CBT therapy at the hospital. It was something I never found very helpful but I felt I ought to stick to it as it's the only help available. It saves a fairly frequent long journey anyway and there were positives from seeing an OT. Writing certain goals down actually did help to an extent as I'm usually terrible at doing things like that myself, my mind is very quickly converted to other more interesting things going on! I also wouldn't have been to the pain clinic if it wasn't for my OT...

Since October I've been twice to the pain clinic, it was short but sweet. I was prescribed pain relief through my doctor which actually worked, I'd been waiting most of the year for relief that would actually help and in October I finally got that. I've been taking tramadol for 2 months now and it works great so that's a big plus.

Just a few weeks before then I won my appeal at the PIP tribunal, I also passed my ESA medical back in June. As a lot of you will know they're stressful experiences and not pleasant at all.

Health wise I've been using my walking aids less, they're still used for "big" days out but for short journeys I can manage without it. I feel wobbly at times but I like to walk slowly, this makes it awkward when I'm out with anyone as they all like to walk at double the speed I do!

Pain wise it's been a funny one, there's always some discomfort but I get spells where it's pretty bad for days on end. It comes and goes in phases and sometimes it fits the pattern of when I overdo it but not always.

Fatigue wise it's been pretty much the same. I've appeared "ok" to others when I see them as I've prepared. For example if I'm invited to an event that lasts a few hours then I will spend most of that day and most of the following day in bed just so I can get through those few hours of the "event". Some days I've spent 20 hours of it in bed but luckily that hasn't been too often. The Christmas period has been tougher on me physically but I'm glad I've made the effort but now I'm starting to pay for that.

Personal Goals

Personal goals wise I've not achieved as much as I'd have liked but I've still made good progress. A few months ago I started swimming for the first time in nearly 3 years. At first I was very wobbly and felt fragile, having to take rests in between each length whereas now I still have a long way to go but I've made so much progress and gradually built myself up. I've also had spells where I've been able to manage 10 minutes of careful exercise a day but those spells haven't been as frequent as I'd have liked! I've also had a book published about my journey with autism which you can see here:

I've been to a few concerts including Queen & Adam Lambert, Jesus Christ Superstar, Rhydian and Hairspray. And whilst on the subject of music I've got my grade 3 singing exam coming up in February, it's actually booked so no going back this time! When I look back to the start of the year I've made big progress vocally even though it's hard to see sometimes.

Another big plus which did me the world of good was an ME retreat for 5 days and 4 nights. It was great to get away from normal surroundings and to spend time with others in a very similar position to yourself. I also made some nice new friends there too. I usually struggle a lot socially but it came naturally to me there and I honestly can't remember the last time that's happened. It gave me the motivation to keep on going and not to give in to this illness. You can see the vlog I did about it here:


This year (like every year) I have big plans. The difference this time is that I have nothing holding me back (except health)! Having said that I know my body pretty well and know when to stop.

As mentioned before I have my grade 3 singing exam coming up, I feel like I'm coming up to the stage where I'm almost ready to start performing in front of an audience and that would be a massive step for me.

I've become a bit of a hermit this past year so I'm going to try and make more effort this time round to socialise more... but in moderation as it can be very exhausting for me. I have plans to meet some new friends I've made who I haven't actually "met" before so that will be a big step too.

My faith has kept me going and I've let myself down not keeping up with my readings etc so I need to give that more priority and who knows... maybe a mission trip in another country if all goes well!?

Organisation is key to me and simple things like keeping lists and diaries I really need to improve on. Sometimes it's hard when my "autistic obsessions" take over but I'm going to fight against that and place myself in different scenarios to make sure that 2016 is a great one!

Lastly, my fur babies really have been a God send to me and just their company has helped me through a lot. In particular, my baby rats have helped me a lot. Here's the process of the whole ordeal which occurred during the summer:

Well done to everyone who got through that and I wish you all a VERY HAPPY NEW YEAR!

Barry xx