My latest #spoonie vlog with a few minute ramble about diet!
Showing posts with label spoonie. Show all posts
Showing posts with label spoonie. Show all posts
Friday, 22 April 2016
Monday, 18 April 2016
#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
Here's the playlist: https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Tuesday, 12 April 2016
#Spoonie Virus - 4
Thanks everyone for the lovely comments and support re my latest vlogs. I am aware there's people who have messaged me and I promise I will get back to you but it's been a very stressful week that's been taken over with coursework, hence no vlog yesterday trying to get it done ASAP! Hope you're all having a pain free day x
Here's the playlist: https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Here's the playlist: https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Sunday, 10 April 2016
#Spoonie Sleep - 3
This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.
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.
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.
Saturday, 9 April 2016
#Spoonie Relationships - 2
This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.
https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Friday, 8 April 2016
#Spoonie Birthday's - 1
This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.
Monday, 4 April 2016
Saturday, 2 April 2016
Friday, 1 January 2016
Happy New Year everyone: A review of 2015!
Hello everyone!
It's the New Year and 1 of my resolutions is to keep on top of my blogs, it's a way to track my progress with various things and it's also a way to let my friends what's going on.
2015 wasn't a great year but I'm going to focus on the positives and focusing on the negatives never gets you anywhere! It didn't get off to a good start and took me a long while to get over various things.
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
Tuesday, 16 June 2015
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
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
Monday, 13 April 2015
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 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
Wednesday, 1 April 2015
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
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
Tuesday, 3 March 2015
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...
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.
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
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
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
Friday, 19 December 2014
'DOMS' - A bad day...
Hello everyone,
I seem to have phases, one minute I update a blog a few times in a week and the next I haven't updated it in months! I guess I just update it when I feel I've got something mildly interesting to talk about...
Today has been a very bad day and it's followed a very particular pattern. I'm experiencing what is called 'DOMS', also known as delayed onset muscle soreness. I've not heard the term used much when relating to M.E. but it's a term I use a lot when talking about Personal Training though M.E. 'DOMS' is totally different...
For a start, the muscle pain is much more intense and to an extent, crippling. 'DOMS' experienced after a weights session at the gym doesn't mean you have to alter anything in your routine. You may feel a little sore in places but it's a good soreness and something you can work through.
When I experienced 'DOMS' after a weights session (before I had M.E.), I could still attend university lectures or an 8 hour shift at the pub shortly afterwards with no problem. Today, I've felt almost paralysed. The fatigue and muscle soreness has been so bad that I've not left my bed all day other than eating food.
Wednesday, my car wouldn't start which was very unfortunate. It's a mobility aid for me, I can't walk very far at all so this is the 3rd day I've been housebound now. I've been walking more without mobility aids but the after effects haven't gone away. There is still stiffness, pain and fatigue after any amount of walking. Anyway, my neighbour brought her car over on Thursday morning so I could use my jump leads and hopefully get the car going. The only problem was that for it to be possible, I had to turn my car around completely to get it in the right position. I knew I was doing far too much but there was no way round it, my mum wasn't strong enough to move the car and I could run off adrenaline for a short time. It took well over an hour and I could hardly walk afterwards.
I knew it was a silly thing to do and I did very little on Thursday, I still didn't feel 'terrible' but I wasn't well enough to be doing any jobs around the house, I took it very easy. Today however is a completely different story. I had a good 8 hours sleep and woke up with tingling pains all over, I've felt like this all day even after taking pain relief (don't think they've ever really had an effect) and even typing this is hurting the joints and muscles in my arms.
I've not been able to write any more on my new book and it's definitely going to be the new year that it'll be published. I want to make extra effort on this book as my grammar has been criticized a little in my last book and deservedly so. It's the content that matters after all though... my writing may seem disjointed but then so is my mind so it's a true reflection!
Anyway, I have to endure a 40 minute bus journey tomorrow to go and get my car, then it's a 20 minute drive home. Not good. My great great aunty is also in and out of hospital and I will be visiting her on Sunday after the church carol service. The overloaded schedule can't be helped but this is all a prime example of why I struggle at Christmas. Too much to do when you're limited.
Happy Christmas and bring on the New Year! I think...
Barry x
I seem to have phases, one minute I update a blog a few times in a week and the next I haven't updated it in months! I guess I just update it when I feel I've got something mildly interesting to talk about...
Today has been a very bad day and it's followed a very particular pattern. I'm experiencing what is called 'DOMS', also known as delayed onset muscle soreness. I've not heard the term used much when relating to M.E. but it's a term I use a lot when talking about Personal Training though M.E. 'DOMS' is totally different...
For a start, the muscle pain is much more intense and to an extent, crippling. 'DOMS' experienced after a weights session at the gym doesn't mean you have to alter anything in your routine. You may feel a little sore in places but it's a good soreness and something you can work through.
When I experienced 'DOMS' after a weights session (before I had M.E.), I could still attend university lectures or an 8 hour shift at the pub shortly afterwards with no problem. Today, I've felt almost paralysed. The fatigue and muscle soreness has been so bad that I've not left my bed all day other than eating food.
Wednesday, my car wouldn't start which was very unfortunate. It's a mobility aid for me, I can't walk very far at all so this is the 3rd day I've been housebound now. I've been walking more without mobility aids but the after effects haven't gone away. There is still stiffness, pain and fatigue after any amount of walking. Anyway, my neighbour brought her car over on Thursday morning so I could use my jump leads and hopefully get the car going. The only problem was that for it to be possible, I had to turn my car around completely to get it in the right position. I knew I was doing far too much but there was no way round it, my mum wasn't strong enough to move the car and I could run off adrenaline for a short time. It took well over an hour and I could hardly walk afterwards.
I knew it was a silly thing to do and I did very little on Thursday, I still didn't feel 'terrible' but I wasn't well enough to be doing any jobs around the house, I took it very easy. Today however is a completely different story. I had a good 8 hours sleep and woke up with tingling pains all over, I've felt like this all day even after taking pain relief (don't think they've ever really had an effect) and even typing this is hurting the joints and muscles in my arms.
I've not been able to write any more on my new book and it's definitely going to be the new year that it'll be published. I want to make extra effort on this book as my grammar has been criticized a little in my last book and deservedly so. It's the content that matters after all though... my writing may seem disjointed but then so is my mind so it's a true reflection!
Anyway, I have to endure a 40 minute bus journey tomorrow to go and get my car, then it's a 20 minute drive home. Not good. My great great aunty is also in and out of hospital and I will be visiting her on Sunday after the church carol service. The overloaded schedule can't be helped but this is all a prime example of why I struggle at Christmas. Too much to do when you're limited.
Happy Christmas and bring on the New Year! I think...
Barry x
Thursday, 27 November 2014
Donation update + I need help - details inside!
Hello everyone, thank you all for the incredible response to my latest offer on my book "A New ME".
I apologise that this post is late but here it is copied and pasted from my facebook page...
Hello, most of you will know I've been running an offer for kindle users for the past 5 days (Sunday - Thursday). It was free for those 5 days and for every copy downloaded I would personally donate 10p to "Invest in ME". The offer has now ended and 387 copies were sold taking the overall sales number to 517. This means that £38.70 was raised, this number was then rounded up to the next 0 (like I always do) taking the amount up to £40. Then £3 was added to this amount as that is the amount raised for the months September and October when just 10% went to charity. Still with me? We're at £43... this was then rounded up to £50 so that is the amount donated plus a £12.50 gift aid taking the amount raised to...
£62.50!!!
My last offer in August/September had raised £87.50 altogether so now my book has raised an overall amount of...
£150 for the charity...
Thanks everyone!
Secondly, I'm sure a lot of you know by now that I'm writing a new book called "Life is Complicated: My journey with Asperger Syndrome". It's coming along well but there's 1 chapter I'd like a bit of help with... you can be that help!
I'm doing a chapter in a Q+A format and I'd liked to be asked questions from a variety of people. There's a few questions I've had from "Autism Mums" and I'd like a few questions from you guys who don't necessarily know much about the condition. I will answer these questions in detail in my book... your questions can be as short or long as you like and don't worry about it being personal or offensive. I'm here to answer all sorts of questions.
Write your questions down in the comments box below, it would be much appreciated...
P.S. What do you think of this new cover? It needs some amendments like the title colour but I'm looking for opinions?
Thanks everyone xxx
I apologise that this post is late but here it is copied and pasted from my facebook page...
Hello, most of you will know I've been running an offer for kindle users for the past 5 days (Sunday - Thursday). It was free for those 5 days and for every copy downloaded I would personally donate 10p to "Invest in ME". The offer has now ended and 387 copies were sold taking the overall sales number to 517. This means that £38.70 was raised, this number was then rounded up to the next 0 (like I always do) taking the amount up to £40. Then £3 was added to this amount as that is the amount raised for the months September and October when just 10% went to charity. Still with me? We're at £43... this was then rounded up to £50 so that is the amount donated plus a £12.50 gift aid taking the amount raised to...
£62.50!!!
My last offer in August/September had raised £87.50 altogether so now my book has raised an overall amount of...
£150 for the charity...
Thanks everyone!
Secondly, I'm sure a lot of you know by now that I'm writing a new book called "Life is Complicated: My journey with Asperger Syndrome". It's coming along well but there's 1 chapter I'd like a bit of help with... you can be that help!
I'm doing a chapter in a Q+A format and I'd liked to be asked questions from a variety of people. There's a few questions I've had from "Autism Mums" and I'd like a few questions from you guys who don't necessarily know much about the condition. I will answer these questions in detail in my book... your questions can be as short or long as you like and don't worry about it being personal or offensive. I'm here to answer all sorts of questions.
Write your questions down in the comments box below, it would be much appreciated...
P.S. What do you think of this new cover? It needs some amendments like the title colour but I'm looking for opinions?
Thanks everyone xxx
Saturday, 20 September 2014
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
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:
Wednesday, 27 August 2014
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".
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)!
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)!
Wednesday, 20 August 2014
M.E. - Wise thoughts with a Chronic Illness.
Ok... I'm in the blogging mood!
Today, I will be talking about occupying the mind. This helps a lot when suffering with a Chronic Illness but the phrase can also contradict itself when relating it to a Chronic Illness.
When every limb is screaming out with pain and every single muscle is just too fatigued to keep up with what your brain is telling you to do, it can be incredibly hard not to fall into some sort of depression.
I've suffered with depression in the past to the point where I wanted to end my life, luckily I was unsuccessful in my attempt but I learned a lot from it. It took me a good few years after that to actually learn from it however.
At just 23 years old, I feel very wise and mature for my age, probably why the majority of my friends are a lot older than me. I don't feel my age. Sure, I can have a good laugh and share things in common with others my age, but I feel I'm more on a wave length with older people. That's why relationship wise I've always been more interested in dating someone up to 20 years older than myself as opposed to someone my own age. Age is just a number at the end of the day. With all these illnesses striking us unexpectedly, surely age is the last thing we should be worrying about?
Anyway, I was saying I have learned a lot from my experience with depression and the link with occupying the mind. There was always a pattern that when my mind was occupied, my depression decreased ever so slightly. Finding new hobbies, even speaking to the right people helped incredibly well. I feel aiming towards goals are vital too whether long-term or short-term.
With M.E., it can be very hard to occupy our minds when we are so limited and so fatigued/energy-less. In myself I have felt better the past few weeks but health wise I've really taken a knock for it because I haven't given myself time to catch up with myself and dwell. When we dwell, we tend to attract negative thoughts... thoughts about the future/personal relationships/health etc etc. I've been hurt a lot in the past by selfish people, whether they be friends/professionals or partners. Dwelling on these bad experiences has previously been my down side. I've been led on, treated like dirt, not taken seriously and at 23 years old, I'm at a stage where I've started to think about myself more for my own benefit. These bullies made me into an incredibly shy/insecure person and I've gradually worked my way up to contentment so why on earth would I let negative influences affect my life?
God's opinion is the only one that matters, he has big plans for me and already I am starting to see some of them unravel before my very eyes. Many have said I cope so well with the illness which is a huge compliment, but that's how God has worked. I read bits of scripture and pray throughout the day that keep me ticking. I'm not "brainwashed" or "unrealistic" by any means, I just have a firm belief which in effect gives me reason to keep going... I know there are better times ahead.
Relating back to short-term and long-term goals, I have lots. M.E. has helped me to discover things I would never have discovered before... what I mean by that is if I didn't have M.E., I would never have explored things that I've found... I'm accepting the illness but I'm working around it. I know people who give in to the illness and I know people that won't accept it, neither ends positively. You need to find that balance which luckily I feel I have. Sure, I'm positive about a full recovery but I'm not waiting around until it happens. For the time being, I'm working around it. My goals... well, I've discovered a love for music... singing! I had never sung anything before I had M.E. and to be honest, I find it hard to keep up as it requires more energy than you think. But it's there for me to keep going back to and I have a teacher to help me work towards my grades. The same goes for playing the keyboard though it hasn't been touched much recently to be completely honest. Theology, I enrolled on an online theology course a year ago, I've only completed 1 module but it's gradual progress, again... it's something I can dip in and out of. There's also the website name I purchased for my personal training plans, it's a gradual process... I'm continually experimenting with exercise too which is going fairly well.
The short of this post is to not let others control your mind! You are in control of what you do and think. Occupy your mind if negative thoughts start to drift in and you'll reap the benefits. Be wise! :)
And... to finish off... here's my lovely boy, Smokey who kept me company after my hospital visit yesterday!
Hope you're all enjoying yourselves x
Today, I will be talking about occupying the mind. This helps a lot when suffering with a Chronic Illness but the phrase can also contradict itself when relating it to a Chronic Illness.
When every limb is screaming out with pain and every single muscle is just too fatigued to keep up with what your brain is telling you to do, it can be incredibly hard not to fall into some sort of depression.
I've suffered with depression in the past to the point where I wanted to end my life, luckily I was unsuccessful in my attempt but I learned a lot from it. It took me a good few years after that to actually learn from it however.
At just 23 years old, I feel very wise and mature for my age, probably why the majority of my friends are a lot older than me. I don't feel my age. Sure, I can have a good laugh and share things in common with others my age, but I feel I'm more on a wave length with older people. That's why relationship wise I've always been more interested in dating someone up to 20 years older than myself as opposed to someone my own age. Age is just a number at the end of the day. With all these illnesses striking us unexpectedly, surely age is the last thing we should be worrying about?
Anyway, I was saying I have learned a lot from my experience with depression and the link with occupying the mind. There was always a pattern that when my mind was occupied, my depression decreased ever so slightly. Finding new hobbies, even speaking to the right people helped incredibly well. I feel aiming towards goals are vital too whether long-term or short-term.
With M.E., it can be very hard to occupy our minds when we are so limited and so fatigued/energy-less. In myself I have felt better the past few weeks but health wise I've really taken a knock for it because I haven't given myself time to catch up with myself and dwell. When we dwell, we tend to attract negative thoughts... thoughts about the future/personal relationships/health etc etc. I've been hurt a lot in the past by selfish people, whether they be friends/professionals or partners. Dwelling on these bad experiences has previously been my down side. I've been led on, treated like dirt, not taken seriously and at 23 years old, I'm at a stage where I've started to think about myself more for my own benefit. These bullies made me into an incredibly shy/insecure person and I've gradually worked my way up to contentment so why on earth would I let negative influences affect my life?
God's opinion is the only one that matters, he has big plans for me and already I am starting to see some of them unravel before my very eyes. Many have said I cope so well with the illness which is a huge compliment, but that's how God has worked. I read bits of scripture and pray throughout the day that keep me ticking. I'm not "brainwashed" or "unrealistic" by any means, I just have a firm belief which in effect gives me reason to keep going... I know there are better times ahead.
Relating back to short-term and long-term goals, I have lots. M.E. has helped me to discover things I would never have discovered before... what I mean by that is if I didn't have M.E., I would never have explored things that I've found... I'm accepting the illness but I'm working around it. I know people who give in to the illness and I know people that won't accept it, neither ends positively. You need to find that balance which luckily I feel I have. Sure, I'm positive about a full recovery but I'm not waiting around until it happens. For the time being, I'm working around it. My goals... well, I've discovered a love for music... singing! I had never sung anything before I had M.E. and to be honest, I find it hard to keep up as it requires more energy than you think. But it's there for me to keep going back to and I have a teacher to help me work towards my grades. The same goes for playing the keyboard though it hasn't been touched much recently to be completely honest. Theology, I enrolled on an online theology course a year ago, I've only completed 1 module but it's gradual progress, again... it's something I can dip in and out of. There's also the website name I purchased for my personal training plans, it's a gradual process... I'm continually experimenting with exercise too which is going fairly well.
The short of this post is to not let others control your mind! You are in control of what you do and think. Occupy your mind if negative thoughts start to drift in and you'll reap the benefits. Be wise! :)
And... to finish off... here's my lovely boy, Smokey who kept me company after my hospital visit yesterday!
Hope you're all enjoying yourselves x
Monday, 18 August 2014
M.E. - A Work in Progress!
Hello everyone... I'm back... updating my blogs!
I thought I'd keep you all updated with what's been going on...
A few weeks ago I had my worst time ever with M.E. - it was a weekend, mainly Saturday and everywhere was so painful, I could barely move the whole day... couldn't physically go beyond slow motion, I must've lay down at least 20 hours that day... I'd been fairly busy and could see a definitive pattern. It's moments like these when you know it's not in your mind and it's moments like these that reaffirms you that there is something definitely wrong. It's times like these when you wish your family/friends/doctors etc could see how badly affected you really are...
Anyway, I had a pretty good week a couple of weeks later, kept my mind occupied. I try to refrain from falling into the trap of doing absolutely nothing (although not always possible) as my mind wanders. That's when negative thoughts kick in. Thinking about things like your current situation, current relationships and what the future holds... others thoughts!
Spending more time away from the computer definitely helps, I like to go out for coffees as it caters for a change of scenery... somewhere I can park outside without having to walk very far at all. My leg pains now go worse even after a few yards... I had a day out recently and didn't do overly much but was out for a fair bit... I was walking like a snail by the end of it... I couldn't physically move any quicker, my legs were giving up on me...
I'm very pleased to have published my book of course, that was a great achievement for me. I've had very good support and very nice comments about it too. Also, I've made new friends though I'm finding keeping up with messages a little difficult! I wish I could talk to everyone but it's not always possible... especially when you have so little energy.
My next project... a project that will take months and months is my personal training website. I've mentioned it before but gradually I'm collecting bits of information and coming up with new ideas for it. I'm also experimenting with very little exercise and a good diet, I've made decent progress so far considering how little I'm actually doing but again, it's a long project and my goal will probably take at least a year to reach. My body fat has rocketed up since I've had M.E. and I've not got the same muscle mass I once had... I'm a work in progress!
I've purchased a laptop, I'm going to store all my documents and information for the website on there. I'm going to store things like my book manuscript so it's for business really. I can also start taking it to coffee shops which will be good for me.
Singing... it's still a work in progress and I'm improving gradually, obviously I can't practice an awful lot but I'm working towards my grade 2 at the end of the year.
Lastly... WRAG (work-related assessment group)... urgh... they're trying to force me into voluntary work... firstly they wanted me to do a half hour train ride (plus 10 minute walk) then a full day of "motivational course"... and of course the travel back and also to and from the station... and also they wanted me to do this twice a week!!! They accepted it was too much for me in the end but the very thought is exhausting... they're now trying to push me to do 1 day a week fixing clocks for 4 hours! I can't even stay up that long and on the rare occasion I do, the payback is pretty intense. They have no idea. I've had letters from the hospital where I'm having therapy and WRAG just won't accept them... they're great letters explaining thoroughly my limitations but still they don't listen!
Anyway, that's what I've been up to!
Thanks for reading...
Keep on fighting!
Barry x
I thought I'd keep you all updated with what's been going on...
A few weeks ago I had my worst time ever with M.E. - it was a weekend, mainly Saturday and everywhere was so painful, I could barely move the whole day... couldn't physically go beyond slow motion, I must've lay down at least 20 hours that day... I'd been fairly busy and could see a definitive pattern. It's moments like these when you know it's not in your mind and it's moments like these that reaffirms you that there is something definitely wrong. It's times like these when you wish your family/friends/doctors etc could see how badly affected you really are...
Anyway, I had a pretty good week a couple of weeks later, kept my mind occupied. I try to refrain from falling into the trap of doing absolutely nothing (although not always possible) as my mind wanders. That's when negative thoughts kick in. Thinking about things like your current situation, current relationships and what the future holds... others thoughts!
Spending more time away from the computer definitely helps, I like to go out for coffees as it caters for a change of scenery... somewhere I can park outside without having to walk very far at all. My leg pains now go worse even after a few yards... I had a day out recently and didn't do overly much but was out for a fair bit... I was walking like a snail by the end of it... I couldn't physically move any quicker, my legs were giving up on me...
I'm very pleased to have published my book of course, that was a great achievement for me. I've had very good support and very nice comments about it too. Also, I've made new friends though I'm finding keeping up with messages a little difficult! I wish I could talk to everyone but it's not always possible... especially when you have so little energy.
My next project... a project that will take months and months is my personal training website. I've mentioned it before but gradually I'm collecting bits of information and coming up with new ideas for it. I'm also experimenting with very little exercise and a good diet, I've made decent progress so far considering how little I'm actually doing but again, it's a long project and my goal will probably take at least a year to reach. My body fat has rocketed up since I've had M.E. and I've not got the same muscle mass I once had... I'm a work in progress!
I've purchased a laptop, I'm going to store all my documents and information for the website on there. I'm going to store things like my book manuscript so it's for business really. I can also start taking it to coffee shops which will be good for me.
Singing... it's still a work in progress and I'm improving gradually, obviously I can't practice an awful lot but I'm working towards my grade 2 at the end of the year.
Lastly... WRAG (work-related assessment group)... urgh... they're trying to force me into voluntary work... firstly they wanted me to do a half hour train ride (plus 10 minute walk) then a full day of "motivational course"... and of course the travel back and also to and from the station... and also they wanted me to do this twice a week!!! They accepted it was too much for me in the end but the very thought is exhausting... they're now trying to push me to do 1 day a week fixing clocks for 4 hours! I can't even stay up that long and on the rare occasion I do, the payback is pretty intense. They have no idea. I've had letters from the hospital where I'm having therapy and WRAG just won't accept them... they're great letters explaining thoroughly my limitations but still they don't listen!
Anyway, that's what I've been up to!
Thanks for reading...
Keep on fighting!
Barry x
Saturday, 21 June 2014
A New ME by Barry John Evans available in paperback and kindle
Hello everyone, I thought you may be interested to hear that I have had a book published! It's about my journey so far with M.E. whilst I also talk about my struggles with autism and depression too. If you'd like to know a bit more then I've recorded a video which you can watch via this link: https://www.youtube.com/watch?v=eG8bCFpbseE
Also, if you'd like to purchase a copy then you can do so through the following links: http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1 - this is the link for UK readers who would like a paperback. It's currently at £5.89
http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me - this is the link for UK readers who prefer to read a kindle. It's currently at £3.06
http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 - this is a link for everyone who lives in the US and would like a paperback. Currently at $8.71
http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040 - Finally, this is a link for everyone in the US who would like a copy on kindle. It's at $5.19.
It's also available in ALL countries and 10% of profits go to the charity "Invest in ME".
Hope you all enjoy!
Barry x
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