#Spoonie Diet - 6

My latest #spoonie vlog with a few minute ramble about diet!

#Spoonie Study - 5

Latest #Spoonie Vlog, this time about the difficulties of study!



Here's the playlist: https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK

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

#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.



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



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

#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!

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

Frazzled mind (can't think of a title other than... an update?!)

Hello everyone!!!

It's been a while since I've updated this blog so I'll do it now before my mind completely shuts down... The online support I get is a real blessing as it's a totally different story in the real world so I like to keep in touch with as many people as I can but it's sometimes hard... I've spent the past half hour or so responding to messages from back to last Saturday as I just haven't had the energy to do so before now. My mind is frazzled (I think that's a proper word). You get the gist anyway so I'll try to make as good sense as I can with what I say now...

SOCIAL

It was during April that I last updated the blog and a few things have happened since. If I remember correctly, last time I posted there was quite a lot going on and everything seemed to be going wrong for me. The situation with the person I feel strongly for is no different. I don't expect us to be in contact again and it's become easier over the past few months but I can't help how I feel... especially considering I'd had those feelings for 3 years. I'm feeling more isolated now really, but I don't want people to feel sorry for me. I am partly to blame for that. Talking about friends in general now... if you asked me if I'd like to be back in contact with a lot of the people who I've lost touch with then the answer would be no. I felt trapped in a way with so many negative influences around me that I didn't enjoy meeting up anymore. I think other sufferers can read in between the lines here without me coming across as a little tactless. So that pretty much covers the social side of things...

Since April, I've had my new book published about my journey with Asperger Syndrome. I've shared it about on social media but I've really not had the energy to do lots of researching what magazines I should be contacting etc. It's still something I need to do, it seems a bit of a blur actually.




DOWNLOAD

Anyway, let me explain what happened the other night. I'm still feeling the effects now and some of you will have noticed that I've been very quiet these past few days. Download Festival at Donnington Park has been and gone this past week.... I was dropped my brother off as he desperately wanted to go. It was 2 hours plus drive either way and I would never entertain the thought of driving for that long but the reason I did it was for the reason given above. My mum had also agreed to take him but she's not safe on motorways and has never been on one on her own. Practice makes perfect but she shouldn't have been doing that journey, that's the bottom line. I would have been worrying all night if I hadn't gone in case anything bad had happened. So... I ended up doing the WHOLE journey bar 5 minutes before we arrived at our destination. My mum took over for 5 minutes and nearly crashed so I had to take to the wheel again. I wasn't happy but I wasn't going to let her continue driving either, she didn't want to after that anyway. So... after a bit of going back and forth and not sure what was happening, my brother was dropped off and me and my mum were on our way back home. Soon after we'd set off back home the engine light had appeared on the dashboard. There was obviously something wrong so I pulled up in the hard shoulder and opened up the bonnet. I was nearly falling over due to the cars driving past at very high speeds. I came to the conclusion that the engine was overheated so I filled up the coolant cap with some water as I thought that would cool it. After over 30 minutes the light was still there and I decided to just risk it and go to the nearest services. After a while at services the light was still on but I decided to keep driving as I had no breakdown cover and didn't want to pay for them to come out. The same thing happened after the 2nd services and so I started driving again... this time I was so tired I was swerving off the motorway into the hard shoulder. I got flashed so had to stop again. Anyway... after 3 service stops and a trip to the garage it somehow ended up that we got back home at 9:30 am the previous morning. We'd been out for 13 hours... I wasn't able to sleep though because I had a medical at 11 am...

MEDICAL

This medical was about an hours drive away from where I lived so I had very little time at home before. I was nearly falling over and felt so ill. The actual medical was for PIP and I don't think it went too well... The woman I saw didn't ask me anything about my Aspergers and kept asking about what happened when I was first diagnosed with MECFS. She also got me to perform different arm and leg movements which we all know has nothing to do with this illness at all so it was a big waste of time. No doubt I'll end up having to go through another appeal process. Having said that, I didn't have to appeal this time for ESA which was a massive relief.

PAST FEW DAYS

I've literally done nothing these past few days. I've been sleeping mainly and I'm still recovering from the all nighter! Hence why I've been very quiet.

OVERALL

Overall, I'm still struggling a bit... I'm not afraid to admit that. I have my mum who is a massive help and I'm a Christian which helps me... but there's a void and that's friends... I have a firm belief that I will meet the right people sooner or later... I've been surrounded by the wrong people for far too long. I've never felt I could be completely myself and it's only this past year where I've felt like I've been a lot more like who I am. It's not going to be easy but patience is a virtue. I'm focusing my attention onto study now, I have an advanced nutrition course and a theology course too that I need to get stuck into. I also have a singing exam this summer so I need to get practicing for that!

Hope this all makes sense and I'll try not to leave it as long next time before I next post!

Barry

Thought-provoking problems. What's to come?

Hello everyone, a little soon to be posting after my previous post but I'm going to go into a little more detail here. I also would appreciate others thoughts regarding their own experiences after I've written this entry.

A lot of you will know it's been a tough time for me. My great great aunt passed on Friday which was sad. I also lost my remaining 2 girl rats who were very special to me. I've mentioned before a few times about losing someone I love so I don't need to say any more on that matter. I feel I've been treated unfairly after all I've done but rather than hate, I pray because I know they have a lot of issues going on. Then there's the usual frustrations which were playing on my mind as I realised I was a year older last Wednesday when I turned 24!

So regarding my aunts death, we (my mum and brother) were present as she died. She was unconscious when we got there and it was a strange experience as I'd never been present at something like that before. We didn't see her that often but we were the only family that visited. The night before Gracie (rat) was put to sleep and the same night as my aunt dying, Mags (rat) was put to sleep. I needed to rest on Saturday but ended up visiting the nursing home where my aunt was to sort her room. I needed to rest Sunday but was on the rota to help out with the young kids. It went well and I enjoyed it like I always do, but still no rest. Monday is here now and it's been relatively quiet, the funeral has been arranged and everything is going smoothly though tomorrow I'm driving out of town to register her death before the funeral next Tuesday. I had to get a shower today as I hadn't had 1 in 4 days, my skin starts to go very dry and irritable. It took a lot of effort but it needed to be done.

I also mentioned at some point that my GP wouldn't give me any more pain relief. She would, but she'd only put me back on what already didn't work for me. She needs 3 weeks to get a letter from my OT (who discharged me) which says I should be referred to a pain clinic. However, there's lots of forms to be filled out too totally unrelated to that. My ESA medical is coming up at the end of the month and the PIP forms need to be filled out. I'm sure there's more but I can't think at the minute. My doctor knows nothing about ME and is therefore not very good about the illness. She refuses to write support letters too and my OT was the only 1 who would do that.

It's crazy I even have to consider this but it just shows something needs to be done with regards to treatment for this illness. In fact, understanding is a good start which I'm not getting from the GP. She always refers to it as Chronic Fatigue anyway. ME and Chronic Fatigue are different things!!! I don't just get tired, I get pain, immune problems, intense brain fog, sensitivity to light/sound etc. Anyway... and hear me out before coming to conclusions... the thought to hospitalise myself has come to mind. I don't want to self-harm or overdose. I tried that and have overcome very bad depression. The reason I even have to consider this is because I feel trapped with my GP and her refusal to help me. If I overworked myself to the point where the pain was unbearable then maybe I'd be taken more notice of if I ended up in hospital? Of course I couldn't do it at this moment as it would be selfish considering my aunts funeral is coming up. Her local family probably won't be coming and her other nephew said he couldn't come if it was on Monday as he has to wait in for a phone call from age concern regarding food orders... honestly, I am not joking. This is why I'm so close to my mum, the rest of my family are incredibly selfish and don't care... Anyway, with lots of things coming up I could well end up a lot worse anyway which isn't really avoidable. Would the hospital give me pain relief if I was that bad? Well it's debatable, they wouldn't give me crutches when I had severe leg pains a couple of years back. In fact it wouldn't surprise me if they had the audacity to refer me to a psychologist. How can you win? It's not about winning, it's just about getting the right help you need.

Is it also wrong that I have to sort out my own aids to help me function? I'm having to invest in a shower seat, computer software as excessive typing hurts and a kitchen stool because I find it hard standing up when the pasta is boiling. I had to invest in my own walking sticks and crutches, I once had someone come round to the house to give me a walking stick but I was pretty taken aback by his response when he called round. He made no effort to hide the fact he was shocked it was me he came round to see so I just thought why bother.

I know times will get better and I'm wise enough not to do anything stupid, but there are things I really need to think through. A supportive doctor would make all the difference but the question is where do I find 1?

I'm sure a lot of you (most actually) have had these thoughts and it'd be interesting to see if you've had any solutions or if these problems are still wearing you down?

Thanks,

Barry x

A Rambling Speech

Hello everyone... I know we're in the first couple of weeks in April but I'm calling it March's update anyway as I usually struggle with title names for these posts!

First of all, you can see a lot of my recent thoughts expressed in my last video blog:

https://www.youtube.com/watch?v=BCJnBTI_q-s

The main theme here is FRUSTRATION!!! With some hurt too...

It's been difficult, I turned 24 a couple of days ago and rather than celebrating, I just wanted to hide in a corner. A few years ago I was hoping to have my own place and being relatively successful in my job. It's just not happened. My health hasn't enabled me to fulfill my ambitions.

I actually wrote a good few lines on something I've briefed over in my last couple of videos but I decided to take it out. I think sometimes it's good to get things off our chest but not when there's a potential backlash. It doesn't matter even if you're right and feel like you need a bit of support, some things aren't worth the stress. All we can do is pray which is what I do a lot of.

I'm sat here in Costa writing this, have been here about an hour but leaving soon. I had a doctors appointment at 8:30am which was a waste of time. I can't really concentrate due to background noise so my writing may be a little disjointed and not as smooth.

I've mentioned before that I was discharged from the hospital as my OT said there was nothing more she could do. She was going to send a report to my GP and ask her to refer me to a pain clinic. The report hasn't arrived at the surgery yet so I've got to wait another few weeks. My GP said she doesn't think they'll see me at the pain clinic as the pain isn't in 1 particular area. I know this isn't true as lots of ME sufferers attend pain clinics. I also asked about going back on my pain relief medication and she gave me just 2 options, the ones I had already been on and another one. I know a lot who are on Tramadol yet she never mentioned that. In fact I don't think she knows anything when it comes to ME. I really need a new GP.

I've tried to push through the fatigue this past week or so. This situation that has been playing on my mind is eating away at me. If the other person knew this they'd probably be shocked. It's hurtful knowing I may never speak to them again when I feel I've done nothing wrong and I've always put them first before my health. Anyway, I'm at the stage where I just want to do things to occupy my mind. I'm not really thinking about the after effects, I'm 24 and I want to start living my life. I've been deprived of my 20's so far. I feel like I need a new start and only my health is stopping me. My ambitions are still the same but I'm getting fed up of all the same surroundings. I'm finding it hard to trust those around me and feel in some ways I need to start from scratch.

I don't go into detail often about my ambitions because I feel embarrassed about saying the same thing over and over. If I know someone isn't really interested then I'll close up and give nothing away.

In some ways I feel broken but others I feel it's just the start. Which one depends on which path I choose to lead. I can't hang around and maybe deserve a little more respect. In some ways I'm discrediting myself.

I've just decided that I have a new title for this post, very random but my mind is always a little random!

Hope you're all well as can be,

God Bless,

Barry x

My typical day!

Hello everyone!

I just wanted to share a picture with you that a friend had shared on facebook. I feel like this picture summarises my life at the moment very well.

Every morning is a massive struggle because I'm exhausted. It's the worst time of day for me. The pain is at its worst and my brain is so foggy that my head keeps dropping.

If I've mustered up enough energy to rise and shine in the morning then I'm dying for a nap come afternoon. Having said that, I'm dying to nap even when I haven't had the energy to rise and shine in the morning.

It's impossible to get through the day without some sort of rest which means it's hard to sleep at night. Even when I'm shattered at night I can't sleep.

This pattern recycles itself daily and although some days are better, the pattern is still there.

I'm sure a lot of you can relate to this which is why I've shared it.

Hope you're all having bearable weeks x