#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.

https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK

#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.

M.E. Positivity Vlog - Ep 6

Say it for ME Challenge!

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!

Positivity

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: https://www.youtube.com/watch?v=uxEpnHzn9hQ

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: https://www.youtube.com/watch?v=6l0P1QmdINU&list=PLvX-06vtGjR4Nks2KGGAgC8JCdWUslCBi

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.

Everyday

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.

Realism

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

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.

Health

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: http://www.amazon.co.uk/Life-Complicated-journey-Asperger-Syndrome/dp/1507778279/ref=sr_1_sc_1?ie=UTF8&qid=1451668727&sr=8-1-spell&keywords=barry+john+evns

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: https://www.youtube.com/watch?v=K6e2EXouKqU

2016

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: https://www.youtube.com/watch?v=RqYuDXkKj8o

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

Barry xx

Movember post for Invest In ME

Hello everyone!

First of all I’d like to thank Jo Best for asking me to contribute to this months Movember for Invest In ME. Second of all I’ve always struggled with growing a beard so mine would look pretty much the same after 4-5 weeks of growing! So I thought I’d share a recent pic of when I let it grow long (for me).

I’d like to now share my story of my journey with this terrible illness. I was previously a very active person who enjoyed all sorts of sports varying from football to wrestling to ice skating, I’ve always been very ambitious setting high targets for myself.

I’d never heard of ME before the summer of 2012. My friend at the time had this illness which I’d never heard of, in fact I didn’t know she had it until I started meeting up with her. I began to ask her questions out of curiosity and because I always try to show empathy towards others. she starting describing her symptoms and it made me stop and think, I instantly knew that this was what I could be suffering with. Throughout my studying years I always struggled with fatigue. I would need to sleep during the day as well as night, my concentration levels were non-existent however hard I tried and there was always discomfort in my muscles which I never took any notice of. I’d been to the doctors many times about these things but every time I was turned away made to feel like a hypochondriac. A lot of it was either put down to my diagnosis of Asperger Syndrome or depression which I’d struggled with after leaving high school. However, I always knew that it was something more than that.

After I had graduated university in 2012 I went straight to a personal training academy for 6 weeks. In the midst of this I had been to the doctor and she agreed to refer me to a consultant at the Liverpool Royal Hospital. I was exhausted by this point but in the back of my mind I thought I would be ok as I’d managed to cope with fatigue for many years, plus I didn’t want to lose for money I’d paid to enrol on the course. I went ahead with it and very quickly I knew it wasn’t the right thing for me. I really struggled with the practical side of the assessments despite having been a gym goer since the age of 14. The discomfort in my muscles increased each day and it got to the point where I couldn’t do any aerobic activity without a lot of pain. The theory side of the course was incredibly difficult too, my concentration levels were deteriorating by the day but I persisted with it. It all felt like a massive coincidence and that it was probably a phase that would pass.

I started working as a Personal Trainer very shortly after my course and only lasted for 3 weeks. I had to go into hospital as my leg pains had gotten to the point where I couldn’t function properly because it was so overpowering. A few days later I was taken back in with gastroenteritis where I had to stay in hospital overnight, I’d lost a lot of weight and blood and never returned to work after this.

That was at the end of 2012. We’re now at the end of 2015 and I haven’t been able to work for the past 3 years. My ME has gone from mild to moderate and I’m at the point where I feel lucky if I have 2-3 good days a week, by this I mean the average chilled out day of a “normal” person with nothing too strenuous. Some weeks I’m only able to get 1 shower and some week I spend the majority of my time in bed. I attend Cognitive Behavioural Therapy at Broad Green hospital for a couple of years though there's only so much it can do. I was recently discharged and I've not long had my first session at a local pain clinic.

I could go on for hours about my daily struggles but then I know the majority of people reading this will be going through very similar things. I’m 24 and day by day it feels like my hopes are fading away. However, I know that life won’t always be like this and I (try to) remain positive about the future. Smiling hasn’t always been a strong trait of mine but I’ve been told it’s infectious so here it is…

During the last 3 years there are positives to be taken from it. I discovered a new hobby in singing which I wouldn’t have found without this diagnosis. I’m currently working towards my grade 3 and slowly but surely I’ll get there. On and off for long periods I’ve been studying theology which is a big personal interest for me as my faith has kept me going through these difficult times. I’ve also managed to write a couple of books about my experiences to try and help others. I’m not the best writer in the world and I can’t see myself ever making a career out of it but it’s been a very positive thing for me and I’ve met some amazing people through it. My first book “A New ME” has raised £175 for this charity which I’m very proud of. I also have a blog which I update when I can which focuses on my journey: http://barrysme.blogspot.co.uk

I support this charity because they a lot of amazing work which focuses on the 3 areas: biomedical research, education and lobbying. I think these 3 key areas are essential in changing the publics general opinion of this illness. I’ve always been impressed by their work and I try to do what I can to help the cause.Finally, I forgot to mention that I’m a massive lover of animals and in particular RATS of which I have 18! (luckily I don’t have the job of cleaning them out)

Thanks for reading and if you'd like to check out the charity then click here: http://www.investinme.org/about.htm

Barry x