#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.

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

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

February's update...

Hello everyone, it's been a month since I last updated this so I thought I'd give you a (fairly) brief update. Some of you will have seen my most recent vlog which still managed to be 8 minutes long! If you want to view that then just click the following link: https://www.youtube.com/watch?v=EcVZ5ViJA-c

It's nice to have such great support from new friends I've made over the past year, a couple of years ago I felt like no-one listened to me but I've been introduced to some of the nicest people I've ever known, in fact THE nicest! It doesn't always matter how often you see someone in the flesh as long as it's genuine. Anyway, back to the update...

I'm quite foggy so I get my dates and times mixed up a lot but I'll do the best I can...

WRAG

The first thing that comes to mind is the dreaded WRAG group. I mentioned this briefly in the video link above but if you haven't seen that then I'll explain here the situation.

When applying for Employment Support Allowance (which I really don't like doing as I want to be able to work as soon as possible) I had to attend a medical a couple of years back. Obviously I failed as a lot of you will know how irrelevant it is to an illness like ME. This is because they don't take into consideration a lot of things like the after effect to overexertion and how the illness fluctuates a lot and isn't 'visible'. Anyway, I had to attend a tribunal the following December (just over a year ago now) and I won the appeal. When you win the appeal you are placed into 1 of 2 groups. The first 1 is the support group and the second one is WRAG. With WRAG (Work Related Assessment Group) it is mandatory that you have appointments with your adviser who keeps a check on your progress and tries to get you back into work.

The above is fair enough but when my health had worsened, my adviser was still pressurizing me to attend workshops and courses. My Occupational Therapist at the hospital even wrote my adviser a letter explaining how I'm unable to attend anything over an hour long as it was likely to worsen my symptoms (fatigue/pain/brain fog amongst many others). The problem is that my adviser just ignored this letter of support from my OT and continued to pressurize me into attending something so that "she could show her boss that she'd done something with me". She actually said that, which basically means she'll do anything to tick the boxes and doesn't care less about a person's health.

I then had a meeting with my local MP who actually wrote a letter to WRAG before my next appointment which was a couple of weeks ago. This letter was ignored too! In fact as I'm writing this my MP STILL hasn't had a response from them. In short, the letter was asking them why they were trying to send me on these courses when they had a medical report in front of them. I had another letter from my MP last week saying he was still waiting for a reply. It beggars belief... And to add insult to injury, this particular course I was being sent on was a 'Psychological Motivation Course'. Something which is totally irrelevant to me...

So it's an ongoing situation and I'm sure some of you can relate to this.

Stress 

 The second thing that comes to mind is mixed emotions with stress being the biggest one. This is over the past couple of weeks in particular, again I explain in the video about this.

Recently, I've had a few animals who have passed away in quick succession. I've been having very bad luck with my rats. There have been over 10 tumours within the past half year on 6 rats. I'm down to 2 now and 1 of them has cancer which is growing by the day. My giant rabbit Harvey also passed away a couple of weeks ago. It's been quite upsetting as with an illness like this, having animals is a great comfort to me.

Also, I mention that there's been a situation going on which has been on my mind a lot but I wouldn't elaborate. Some of you will know what I'm talking about but the reason I'm mentioning this is because it's added to the stress I've already been experiencing recently. It's a very difficult one and I continue to ask my Christian friends to pray about this as that's the only answer at the moment.

I've also come off my pain relief tablets which I didn't think were working but maybe they were as the pain has been almost unbearable the past few days. It's added to the fatigue as well and I literally cannot do as much as I could even a few weeks ago. I'm fighting against it but sometimes your body just drops and you can't move, I hate being in bed but that's the only place I can get some sort of relief at the moment. I've been managing to get out of the house but it's difficult and public places are a daunting prospect with the big crowds, even the slightest noises can make me feel ill so it's a difficult one.

My OT wants to discharge me next time I see her which is a worry as my GP is of little support to me. I applied to join another surgery near to me but it was deemed not local enough to accept me. My OT is the only person who provides me with support letters but she did say that she's referring me to a pain clinic. The only problem is I'd have to attend for full days which is not possible at the moment.

On a positive note, I got to go and see my biggest musical inspirations ever LIVE. Adam Lambert & Queen were amazing, it took a lot out of me and I couldn't even look at the stage in parts due to the flashing lights but I still thoroughly enjoyed it.

Walking is a massive struggle and I struggled with it that night, the furthest I've walked for months is only a matter of yards. I'm not using my crutch/stick as much but I still can't walk a further distance than I could. I've not even been into my town center for the past year because there's nowhere to park. I'm in the process of applying for blue badge but these things take time.

It's becoming harder to do anything, 1 bit of exercise is too much which upsets me, even a little singing practice. I have a singing teacher but I can't practice half of the time which frustrates me a lot. There's so much I want to do. It's been very difficult getting my latest book done, I planned to have it out a while ago but it's just not been possible. I feel like half of my body is working but the other half has just totally given up and it's a case of balancing the 2 out!

I think I've covered most things here and I hope it isn't too long for you! I'll be sure to come back if I've missed anything out! Thank you all for reading...

Barry x

January's update...

Hello everyone!

I hope you're all having a wonderful weekend...

Thought I'd give you an update as there's been quite a lot been going on this past few weeks. Unfortunately, one of my rats Pumpkin had to go today. The local vets were closed so she had to endure a 25 minute drive wrapped in a towel. After speaking to the vet over the phone yesterday, the problem was what he expected. An infection of the uterus. She was losing blood and was incredibly lethargic. I actually wondered if she'd developed M.E. !!! She didn't appear to be in any pain but she was very weak and had lost quite a lot of weight. She was meant to be going in tomorrow but I felt another day was just too much for her.

Here's a picture of her in the car on the way to the vets this morning, I felt she knew what was going to happen and I'm just glad she spent the last 3 months of her life in a loving home rather than in a pet shop. She was prone to stress and developed scabs over her eyes which disappeared after a week of living here. She will be buried in North Wales like the others wrapped in 1 of my hooded tops. It's always a hard time visiting my Grandad physically with the journey but it's for a good cause...

RIP Pumpkin xxx

She could also have had a small tumour which would have been impossible to find without operating which she clearly wasn't ready for. It brings me onto the next subject which is my other rat Daisy, she had a tumour removed from her throat just a couple of weeks before. She and Pumpkin developed a real bond which was nice to see.

You can see her wound above, such a warrior. She acted completely normal when I picked her up from the vets and she was just so glad to see me. Unfortunately, just 2 days after her op she has developed another tumour which isn't as likely to be cancerous. It's unlikely to be connected so it's a case of keeping a close eye and as soon as it grows there's the possibility of removing it, so hopefully Daisy will be with us for a bit longer! They all had a nice treat when Daisy came home...



















Moving on...

I've been very up and down physically, mentally I've been fine though it doesn't help seeing the headlines in this weeks papers indicating that M.E. sufferers fear exercise. FEAR?! I've been going to the gym since I was 14 years old and became a fully qualified personal trainer. Why on earth would I be scared of going to the gym? I can't physically handle it anymore and for the past 2 years have been trying to find out ways I can incorporate some exercise without worsening my M.E. symptoms! The sad thing is that people believe what they read in the newspapers... it's an ongoing battle but we won't be defeated! I even bought some kettle bells the other day so I could try something new, I wouldn't have been seen dead with the pink ones a couple of years back but now it would be an achievement to get through a workout with them... However I did have my mum in mind when I bought them, I've started her on a diet and she'll be using these very soon... She's lost 3lbs in her first week so it's working!




 
 I've started her (and myself) on the juices. Only 1 a day though as I firmly believe you need lots of solid foods in your daily diet... the juice is very tasty though!




 

















Anyway, mornings have been very hard for me recently. I've been waking up in quite a bit of pain that worsens if I get up and do my stuff like making breakfast and having a shower. I like to keep clean but showering is a real chore and I need a fair amount of rest after having 1. It's been recommended that I purchase a shower stool but my bath is too small so it's not possible. The mornings aren't helped by having 5 cats waiting for me as soon as I enter the kitchen...



I am actually thinking of coming off my painkillers altogether because they just don't seem to be working. I've been on them for a while and I'm on a high dose. I'm experiencing side effects too so I don't think they'd be too much of a loss...

I'm also thinking of changing my doctor because as nice as she is, she admits that she doesn't really have a clue about what M.E. is and I've heard a few people recommend a good doctor at another surgery local to me so that's the next step...

There's also a lot going on with the renewal of my ESA benefits which I don't really like to talk about but I do just to show how hard they make it and basically to put to bed any doubts about whether I'm "faking" it or not.

I've seen the Welfare Rights team and I learned a lot. I won't go into it but my "adviser" at WRAG (Work-related assessment group) could be in a bit of trouble as 1) she told me I couldn't have anyone go to the appointments with me and 2) she totally dismissed a factual report from the hospital telling her I couldn't participate in any activities. Just to add salt to the wounds, she's told me that it's mandatory I attend a "psychological motivational course". How insulting is that?! This is where my local MP is getting involved... it's been needless stress but it's getting sorted.

What else? My book! Wow time is flying... I am making progress but because my health has been up and down it's been hard to be consistent with my writing. I've also discovered a new word... "voxpopping". Basically I've been invited to go and ask the public in the city for their thoughts and blessings. I'm not entirely sure myself but it's something I'm interested in as it's helping to raise awareness. It'll be a little nerve wracking because I'm not the most social guy but then why not?!

I'm also going to a social gathering for a friends birthday, there's going to be a lot there so it's a big deal for me. A few months back I would have said no but I'm determined that I push myself that bit further this year to do more... let's see what my body's capable of and if I've made much progress!

There's lots of little things in the pipeline but as my head has gone very foggy I'll leave the post here. There were a few more pics but I'll share them another time.

Barry x

A very SPECIAL OFFER for KINDLE users helping to raise Awareness for M.E.

Hello everyone... if you're a Kindle user then I have a very special offer for you which starts TOMORROW (Sunday 9th November) and ends on Thursday (13th November).

So what's the offer?

Well my first published book "A New ME" will be available in that time period for FREE!!! Not only that, but for every copy sold during that time period, I will personally donate 10p per purchase. The charity is the same as always, "Invest in ME".

What's the catch? There honestly is no catch although it would be much appreciated if you could leave the book a review on Amazon and even Goodreads if you use that.

Why am I doing this? Well it's not due to lack of sales, it's selling fairly steady at the moment. I'm just feeling kind... also, the more copies that are sold means the higher ranking the book will be on amazon. This is great for ME Awareness so even if you're not really interested in reading the book, purchase it for FREE.

Here are the links:

UK version: http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1415454713

US version:  http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1_twi_2?ie=UTF8&qid=1415454823&sr=8-1&keywords=a+new+me

Lastly, the book is available in ALL COUNTRIES and don't forget that the offer starts TOMORROW!!!

If you could share this post around then that would be great, I'll also be tweeting a lot about it on twitter if you want to follow me @bazmufc8491 and @BJEadvertise

Thanks for all your support!!! XXX

Barry's M.E. Diary - Week 1 plus latest WRAG update!

Hello everyone!

Hope you're all having a fabulous weekend so far...

This post is to tell you about a new series I am doing on youtube... a series that I hope will raise more awareness for this chronic illness...

You can see what it's called in the title of this post! Pretty self explanatory but I'll give you a run down anyway. The series will be updated weekly keeping you all up to date on how my weeks are going M.E. wise including activities I've done and what symptoms I've bee experiencing. Through my new book, I have a growing following on twitter so I see this as a perfect opportunity to get word out there.

Each week I will share the link in this blog. But before I send you the link, I want to update you on what happened at WRAG (Work Related Assessment Group) yesterday. P.S. If my writing isn't as fluent as usual, it's because Lucy rat kept sitting on the keyboard. They've returned to their cage now!

So... WRAG... well, it didn't happen! My appointment was at 9:45am and as soon as I got there I found a piece of paper stuck to the door. Apparently the office was closed! A couple turned up at the same time so I had to take charge of the situation... I led the way to where the piece of paper told us to go which was a few yards away in a different building. We got there and the lady in the office didn't have a clue what I was talking about despite being sent to this place. Anyway, we all returned to the original place where our appointments where meant to be. There was a mobile number which I rung as the couple I was with didn't speak very good English. I hate phone calls but sometimes it's got to be done!!! By this point, a group of around 5 people gathered round waiting for me to come off the phone... talk about pressure! I got the lady who I was meant to be seeing, she said they were in the other place but couldn't carry on with appointments... the keyhole to the office had been filled up with cement so no-one could get in! That meant the workers at a4e had no access to office phones or files. At first I was annoyed but then about a little thought, I found it quite amusing and as bad as this sounds I thought, good for whoever did it! Ha ha... Anyway, that was my amusement for Friday morning! Here's the link to the video:

 

https://www.youtube.com/watch?v=j4-by6Ev-Bc&list=UUCrsPBrO__GVcD3rm8nomjw

A New ME - LIMITED OFFER!

Hello all, so here's the offer I was telling you about!
Considering my book hasn't had any real marketing, it's done pretty well so thank you to those who have bought it.
However, I'd like to raise even more awareness and raise more money for "Invest in ME".

I've decided that for 7 days, both paperback and kindle copies will be cheaper. Not only that, but ALL money made from sales during this period will to go "Invest in ME".
After the 7 days, I will round up the total raised to the nearest "0" and post it on here. I will also screenshot the screen when I make the donation.
I will post again when this offer starts and post around the M.E. groups on here and also on Twitter.
It is available in ALL countries too but here I will post links for the UK & US Amazon:
UK Paperback - £3.94 http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=sr_1_1_bnp_1_pap?ie=UTF8&qid=1409036494&sr=8-1&keywords=a+new+me
UK Kindle - £1.85 http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409036494
US Paperback - $6.55 http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1409037317&sr=8-1
US Kindle - $3.07 http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409037317
Lastly, share this post and tag people who you think would be interested.

Thank you everyone. The 7 days starts now so the offer ends this time next Tuesday (2nd September)!