#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 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

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

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

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)!

ALS Ice Bucket Challenge

Hello all, although this isn't M.E. related, I've decided to make this post because it's important to support all illnesses/conditions. It's also very light hearted but raising awareness for a good cause.

I think there should be something similar for M.E. but not necessarily using ice buckets as although I didn't feel it at the time, I now have a banging headache and blurred vision. I'm actually in bed before 10pm with my electric blanket on full!!!

Here's the video:

https://www.youtube.com/watch?v=yTSQfkIp-28&list=UUCrsPBrO__GVcD3rm8nomjw