My latest #spoonie vlog with a few minute ramble about diet!
Showing posts with label myalgic encephalomyelitis. Show all posts
Showing posts with label myalgic encephalomyelitis. Show all posts
Friday, 22 April 2016
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
Thursday, 25 February 2016
Bringing myself back down to earth...
Hello everyone!
Well it's February already!? Having said that I've done quite a bit this year...
I'm going to focus this post on getting carried away, a lot of us do it when we're having a good spell. I actually used to be very good at taking things very slowly and being patient but I find that after a few years I'm losing that patience a bit, mainly because I'm approaching 25 and my 20's are becoming a nightmare when they should be the "most fun years of my life", other than school of course... which I despised more than anything!
Some of you will know that I've been keeping an "ME Positivity Vlog" which I update after I've had a few positive things going on. I've vlogged a lot about how my M.E. symptoms affect me and it becomes a bit tedious after a while so I really like the idea of focusing my vlogs purely on positive happenings.
Here's my latest Vlog: https://www.youtube.com/watch?v=uxEpnHzn9hQ
Usually I like them to be a bit shorter but I had a lot to cover here as I hadn't updated it in a while.
The latter part of January and beginning of February was extremely positive for me. I've had a few outings, got more involved in things but then I've forgotten about what limits I've had over the past 3 years and pushed myself.
One thing I'd been working very hard at is my singing, I'd spent a lot of time practicing for my exam which was last week. I record the exam on my phone and listened back to it afterwards, overall I was pleased with how it went.
Here's one of the songs from the exam: https://www.youtube.com/watch?v=6l0P1QmdINU&list=PLvX-06vtGjR4Nks2KGGAgC8JCdWUslCBi
Another positive thing is that I've started to become more involved with the church. It's been difficult for me but not because my faith has been lacking. I find big crowds difficult and overbearing a lot of the time. My concentration from brain fog also leaves a lot to be desired so actually listening to a sermon is hard, there's a lot that doesn't go in and it's very frustrating. Prayer meetings have been difficult but I've attending a few recently, sitting still for a long period of time I find very challenging. On top of that, the parking is always a problem as there's always a short walk involved, not a big one but on top of the other difficulties it adds to the stress.
I already help out with the young kids sometimes on a Sunday morning and I've put myself forward to help at one of the older kids clubs on a Friday. It's big progress for me but then I forgot my boundaries and an opportunity to go on a mission trip came up. It's something I'd previously prayed about and my heart was in it, so of course I was very keen on the idea. In the end I just knew it wouldn't be fair on the team and also a massive risk on my part.
It was only when I actually broke down into bits what I was capable of each day that I realised just how far away I am from the "typical" healthy life.
I see spending 15 hours a day in bed as good. That's not normal but it's become the norm for me. Let's take church for example, after a Sunday service I will have my lunch when I get home and then go to bed until tea time. I don't sleep all of that time but I feel too weak to start walking around the house continuously or actually leaving it.
A couple of days ago I went to play a couple of games of snooker. My co-ordination was going quickly during the second game and the rest of that day I found it hard even walking properly around the house.
Yesterday I met up with a friend and did a small amount of walking, I ended up taking 3 tramadol tablets because it triggered off the pain in my legs which then spread.
These aren't big tasks, these are things that the average person wouldn't think twice about and just do it. It reminded me how careful I have to be.
I think also that the climax of my singing exam hit me pretty hard, I'd practiced a lot and the stress of it all wasn't great for my health, especially with the weekly lessons. Luckily I was allowed to sit down for the duration of the exam. It doesn't help that I've still got a lot of coursework to do with not much time left. I'll feel a great weight being lifted from my shoulders when that's done.
I have to remember that I am gradually heading in the right direction, I've got to make the most of what I've got and stop comparing my activities to the average persons. I even keep beating myself up over the fact I've got a very small belly pouch despite eating ultra healthy and doing what bit of exercise I can... thinking about it I'm lucky I'm not obese from the severe lack of activity I get!
I've got my 3 night trip to Madrid in a few weeks for my mum's 60th. It's going to be a big ask but careful planning should see me through, I have to try out new things and to an extent push my limits. I'm going to get set backs but then I'd rather that than having never tried... I'm also hoping to attend a Christian event called Word Alive in April which isn't long after the Madrid trip. The good thing is that the different events their are optional so there's no pressure. I have to remember too that completing my singing exam is a massive step too considering it's something I've been working towards for over 2 and a half years!
I have been pretty occupied and therefore I've found it difficult to keep up to date with contacting everyone so I apologise for that but then I know you all understand...
I hope you're all having a good year so far and remember to keep grounded!!!
Well it's February already!? Having said that I've done quite a bit this year...
I'm going to focus this post on getting carried away, a lot of us do it when we're having a good spell. I actually used to be very good at taking things very slowly and being patient but I find that after a few years I'm losing that patience a bit, mainly because I'm approaching 25 and my 20's are becoming a nightmare when they should be the "most fun years of my life", other than school of course... which I despised more than anything!
Positivity
Some of you will know that I've been keeping an "ME Positivity Vlog" which I update after I've had a few positive things going on. I've vlogged a lot about how my M.E. symptoms affect me and it becomes a bit tedious after a while so I really like the idea of focusing my vlogs purely on positive happenings.
Here's my latest Vlog: https://www.youtube.com/watch?v=uxEpnHzn9hQ
Usually I like them to be a bit shorter but I had a lot to cover here as I hadn't updated it in a while.
The latter part of January and beginning of February was extremely positive for me. I've had a few outings, got more involved in things but then I've forgotten about what limits I've had over the past 3 years and pushed myself.
One thing I'd been working very hard at is my singing, I'd spent a lot of time practicing for my exam which was last week. I record the exam on my phone and listened back to it afterwards, overall I was pleased with how it went.
Here's one of the songs from the exam: https://www.youtube.com/watch?v=6l0P1QmdINU&list=PLvX-06vtGjR4Nks2KGGAgC8JCdWUslCBi
Another positive thing is that I've started to become more involved with the church. It's been difficult for me but not because my faith has been lacking. I find big crowds difficult and overbearing a lot of the time. My concentration from brain fog also leaves a lot to be desired so actually listening to a sermon is hard, there's a lot that doesn't go in and it's very frustrating. Prayer meetings have been difficult but I've attending a few recently, sitting still for a long period of time I find very challenging. On top of that, the parking is always a problem as there's always a short walk involved, not a big one but on top of the other difficulties it adds to the stress.
I already help out with the young kids sometimes on a Sunday morning and I've put myself forward to help at one of the older kids clubs on a Friday. It's big progress for me but then I forgot my boundaries and an opportunity to go on a mission trip came up. It's something I'd previously prayed about and my heart was in it, so of course I was very keen on the idea. In the end I just knew it wouldn't be fair on the team and also a massive risk on my part.
Everyday
It was only when I actually broke down into bits what I was capable of each day that I realised just how far away I am from the "typical" healthy life.
I see spending 15 hours a day in bed as good. That's not normal but it's become the norm for me. Let's take church for example, after a Sunday service I will have my lunch when I get home and then go to bed until tea time. I don't sleep all of that time but I feel too weak to start walking around the house continuously or actually leaving it.
A couple of days ago I went to play a couple of games of snooker. My co-ordination was going quickly during the second game and the rest of that day I found it hard even walking properly around the house.
Yesterday I met up with a friend and did a small amount of walking, I ended up taking 3 tramadol tablets because it triggered off the pain in my legs which then spread.
These aren't big tasks, these are things that the average person wouldn't think twice about and just do it. It reminded me how careful I have to be.
I think also that the climax of my singing exam hit me pretty hard, I'd practiced a lot and the stress of it all wasn't great for my health, especially with the weekly lessons. Luckily I was allowed to sit down for the duration of the exam. It doesn't help that I've still got a lot of coursework to do with not much time left. I'll feel a great weight being lifted from my shoulders when that's done.
Realism
I have to remember that I am gradually heading in the right direction, I've got to make the most of what I've got and stop comparing my activities to the average persons. I even keep beating myself up over the fact I've got a very small belly pouch despite eating ultra healthy and doing what bit of exercise I can... thinking about it I'm lucky I'm not obese from the severe lack of activity I get!
I've got my 3 night trip to Madrid in a few weeks for my mum's 60th. It's going to be a big ask but careful planning should see me through, I have to try out new things and to an extent push my limits. I'm going to get set backs but then I'd rather that than having never tried... I'm also hoping to attend a Christian event called Word Alive in April which isn't long after the Madrid trip. The good thing is that the different events their are optional so there's no pressure. I have to remember too that completing my singing exam is a massive step too considering it's something I've been working towards for over 2 and a half years!
I have been pretty occupied and therefore I've found it difficult to keep up to date with contacting everyone so I apologise for that but then I know you all understand...
I hope you're all having a good year so far and remember to keep grounded!!!
Barry x
 |
| Dahlia keeping me company the night I posted this! <3 |
Friday, 20 November 2015
Movember post for Invest In ME
Hello everyone!
First of all I’d like to thank Jo Best for asking me to contribute to this months Movember for Invest In ME. Second of all I’ve always struggled with growing a beard so mine would look pretty much the same after 4-5 weeks of growing! So I thought I’d share a recent pic of when I let it grow long (for me).
I’d like to now share my story of my journey with this terrible illness. I was previously a very active person who enjoyed all sorts of sports varying from football to wrestling to ice skating, I’ve always been very ambitious setting high targets for myself.
I’d never heard of ME before the summer of 2012. My friend at the time had this illness which I’d never heard of, in fact I didn’t know she had it until I started meeting up with her. I began to ask her questions out of curiosity and because I always try to show empathy towards others. she starting describing her symptoms and it made me stop and think, I instantly knew that this was what I could be suffering with. Throughout my studying years I always struggled with fatigue. I would need to sleep during the day as well as night, my concentration levels were non-existent however hard I tried and there was always discomfort in my muscles which I never took any notice of. I’d been to the doctors many times about these things but every time I was turned away made to feel like a hypochondriac. A lot of it was either put down to my diagnosis of Asperger Syndrome or depression which I’d struggled with after leaving high school. However, I always knew that it was something more than that.
After I had graduated university in 2012 I went straight to a personal training academy for 6 weeks. In the midst of this I had been to the doctor and she agreed to refer me to a consultant at the Liverpool Royal Hospital. I was exhausted by this point but in the back of my mind I thought I would be ok as I’d managed to cope with fatigue for many years, plus I didn’t want to lose for money I’d paid to enrol on the course. I went ahead with it and very quickly I knew it wasn’t the right thing for me. I really struggled with the practical side of the assessments despite having been a gym goer since the age of 14. The discomfort in my muscles increased each day and it got to the point where I couldn’t do any aerobic activity without a lot of pain. The theory side of the course was incredibly difficult too, my concentration levels were deteriorating by the day but I persisted with it. It all felt like a massive coincidence and that it was probably a phase that would pass.
I started working as a Personal Trainer very shortly after my course and only lasted for 3 weeks. I had to go into hospital as my leg pains had gotten to the point where I couldn’t function properly because it was so overpowering. A few days later I was taken back in with gastroenteritis where I had to stay in hospital overnight, I’d lost a lot of weight and blood and never returned to work after this.
That was at the end of 2012. We’re now at the end of 2015 and I haven’t been able to work for the past 3 years. My ME has gone from mild to moderate and I’m at the point where I feel lucky if I have 2-3 good days a week, by this I mean the average chilled out day of a “normal” person with nothing too strenuous. Some weeks I’m only able to get 1 shower and some week I spend the majority of my time in bed. I attend Cognitive Behavioural Therapy at Broad Green hospital for a couple of years though there's only so much it can do. I was recently discharged and I've not long had my first session at a local pain clinic.
I could go on for hours about my daily struggles but then I know the majority of people reading this will be going through very similar things. I’m 24 and day by day it feels like my hopes are fading away. However, I know that life won’t always be like this and I (try to) remain positive about the future. Smiling hasn’t always been a strong trait of mine but I’ve been told it’s infectious so here it is…
During the last 3 years there are positives to be taken from it. I discovered a new hobby in singing which I wouldn’t have found without this diagnosis. I’m currently working towards my grade 3 and slowly but surely I’ll get there. On and off for long periods I’ve been studying theology which is a big personal interest for me as my faith has kept me going through these difficult times. I’ve also managed to write a couple of books about my experiences to try and help others. I’m not the best writer in the world and I can’t see myself ever making a career out of it but it’s been a very positive thing for me and I’ve met some amazing people through it. My first book “A New ME” has raised £175 for this charity which I’m very proud of. I also have a blog which I update when I can which focuses on my journey: http://barrysme.blogspot.co.uk
Thanks for reading and if you'd like to check out the charity then click here: http://www.investinme.org/about.htm
Barry x
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
Friday, 10 April 2015
A Rambling Speech
Hello everyone... I know we're in the first couple of weeks in April but I'm calling it March's update anyway as I usually struggle with title names for these posts!
First of all, you can see a lot of my recent thoughts expressed in my last video blog:
https://www.youtube.com/watch?v=BCJnBTI_q-s
The main theme here is FRUSTRATION!!! With some hurt too...
It's been difficult, I turned 24 a couple of days ago and rather than celebrating, I just wanted to hide in a corner. A few years ago I was hoping to have my own place and being relatively successful in my job. It's just not happened. My health hasn't enabled me to fulfill my ambitions.
I actually wrote a good few lines on something I've briefed over in my last couple of videos but I decided to take it out. I think sometimes it's good to get things off our chest but not when there's a potential backlash. It doesn't matter even if you're right and feel like you need a bit of support, some things aren't worth the stress. All we can do is pray which is what I do a lot of.
I'm sat here in Costa writing this, have been here about an hour but leaving soon. I had a doctors appointment at 8:30am which was a waste of time. I can't really concentrate due to background noise so my writing may be a little disjointed and not as smooth.
I've mentioned before that I was discharged from the hospital as my OT said there was nothing more she could do. She was going to send a report to my GP and ask her to refer me to a pain clinic. The report hasn't arrived at the surgery yet so I've got to wait another few weeks. My GP said she doesn't think they'll see me at the pain clinic as the pain isn't in 1 particular area. I know this isn't true as lots of ME sufferers attend pain clinics. I also asked about going back on my pain relief medication and she gave me just 2 options, the ones I had already been on and another one. I know a lot who are on Tramadol yet she never mentioned that. In fact I don't think she knows anything when it comes to ME. I really need a new GP.
I've tried to push through the fatigue this past week or so. This situation that has been playing on my mind is eating away at me. If the other person knew this they'd probably be shocked. It's hurtful knowing I may never speak to them again when I feel I've done nothing wrong and I've always put them first before my health. Anyway, I'm at the stage where I just want to do things to occupy my mind. I'm not really thinking about the after effects, I'm 24 and I want to start living my life. I've been deprived of my 20's so far. I feel like I need a new start and only my health is stopping me. My ambitions are still the same but I'm getting fed up of all the same surroundings. I'm finding it hard to trust those around me and feel in some ways I need to start from scratch.
I don't go into detail often about my ambitions because I feel embarrassed about saying the same thing over and over. If I know someone isn't really interested then I'll close up and give nothing away.
In some ways I feel broken but others I feel it's just the start. Which one depends on which path I choose to lead. I can't hang around and maybe deserve a little more respect. In some ways I'm discrediting myself.
I've just decided that I have a new title for this post, very random but my mind is always a little random!
Hope you're all well as can be,
God Bless,
Barry x
First of all, you can see a lot of my recent thoughts expressed in my last video blog:
https://www.youtube.com/watch?v=BCJnBTI_q-s
The main theme here is FRUSTRATION!!! With some hurt too...
It's been difficult, I turned 24 a couple of days ago and rather than celebrating, I just wanted to hide in a corner. A few years ago I was hoping to have my own place and being relatively successful in my job. It's just not happened. My health hasn't enabled me to fulfill my ambitions.
I actually wrote a good few lines on something I've briefed over in my last couple of videos but I decided to take it out. I think sometimes it's good to get things off our chest but not when there's a potential backlash. It doesn't matter even if you're right and feel like you need a bit of support, some things aren't worth the stress. All we can do is pray which is what I do a lot of.
I'm sat here in Costa writing this, have been here about an hour but leaving soon. I had a doctors appointment at 8:30am which was a waste of time. I can't really concentrate due to background noise so my writing may be a little disjointed and not as smooth.
I've mentioned before that I was discharged from the hospital as my OT said there was nothing more she could do. She was going to send a report to my GP and ask her to refer me to a pain clinic. The report hasn't arrived at the surgery yet so I've got to wait another few weeks. My GP said she doesn't think they'll see me at the pain clinic as the pain isn't in 1 particular area. I know this isn't true as lots of ME sufferers attend pain clinics. I also asked about going back on my pain relief medication and she gave me just 2 options, the ones I had already been on and another one. I know a lot who are on Tramadol yet she never mentioned that. In fact I don't think she knows anything when it comes to ME. I really need a new GP.
I've tried to push through the fatigue this past week or so. This situation that has been playing on my mind is eating away at me. If the other person knew this they'd probably be shocked. It's hurtful knowing I may never speak to them again when I feel I've done nothing wrong and I've always put them first before my health. Anyway, I'm at the stage where I just want to do things to occupy my mind. I'm not really thinking about the after effects, I'm 24 and I want to start living my life. I've been deprived of my 20's so far. I feel like I need a new start and only my health is stopping me. My ambitions are still the same but I'm getting fed up of all the same surroundings. I'm finding it hard to trust those around me and feel in some ways I need to start from scratch.
I don't go into detail often about my ambitions because I feel embarrassed about saying the same thing over and over. If I know someone isn't really interested then I'll close up and give nothing away.
In some ways I feel broken but others I feel it's just the start. Which one depends on which path I choose to lead. I can't hang around and maybe deserve a little more respect. In some ways I'm discrediting myself.
I've just decided that I have a new title for this post, very random but my mind is always a little random!
Hope you're all well as can be,
God Bless,
Barry x
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
Sunday, 18 January 2015
January's update...
Hello everyone!
I hope you're all having a wonderful weekend...
Thought I'd give you an update as there's been quite a lot been going on this past few weeks. Unfortunately, one of my rats Pumpkin had to go today. The local vets were closed so she had to endure a 25 minute drive wrapped in a towel. After speaking to the vet over the phone yesterday, the problem was what he expected. An infection of the uterus. She was losing blood and was incredibly lethargic. I actually wondered if she'd developed M.E. !!! She didn't appear to be in any pain but she was very weak and had lost quite a lot of weight. She was meant to be going in tomorrow but I felt another day was just too much for her.
Here's a picture of her in the car on the way to the vets this morning, I felt she knew what was going to happen and I'm just glad she spent the last 3 months of her life in a loving home rather than in a pet shop. She was prone to stress and developed scabs over her eyes which disappeared after a week of living here. She will be buried in North Wales like the others wrapped in 1 of my hooded tops. It's always a hard time visiting my Grandad physically with the journey but it's for a good cause...
RIP Pumpkin xxx
She could also have had a small tumour which would have been impossible to find without operating which she clearly wasn't ready for. It brings me onto the next subject which is my other rat Daisy, she had a tumour removed from her throat just a couple of weeks before. She and Pumpkin developed a real bond which was nice to see.
Moving on...
I've been very up and down physically, mentally I've been fine though it doesn't help seeing the headlines in this weeks papers indicating that M.E. sufferers fear exercise. FEAR?! I've been going to the gym since I was 14 years old and became a fully qualified personal trainer. Why on earth would I be scared of going to the gym? I can't physically handle it anymore and for the past 2 years have been trying to find out ways I can incorporate some exercise without worsening my M.E. symptoms! The sad thing is that people believe what they read in the newspapers... it's an ongoing battle but we won't be defeated! I even bought some kettle bells the other day so I could try something new, I wouldn't have been seen dead with the pink ones a couple of years back but now it would be an achievement to get through a workout with them... However I did have my mum in mind when I bought them, I've started her on a diet and she'll be using these very soon... She's lost 3lbs in her first week so it's working!
I've started her (and myself) on the juices. Only 1 a day though as I firmly believe you need lots of solid foods in your daily diet... the juice is very tasty though!
Anyway, mornings have been very hard for me recently. I've been waking up in quite a bit of pain that worsens if I get up and do my stuff like making breakfast and having a shower. I like to keep clean but showering is a real chore and I need a fair amount of rest after having 1. It's been recommended that I purchase a shower stool but my bath is too small so it's not possible. The mornings aren't helped by having 5 cats waiting for me as soon as I enter the kitchen...
I am actually thinking of coming off my painkillers altogether because they just don't seem to be working. I've been on them for a while and I'm on a high dose. I'm experiencing side effects too so I don't think they'd be too much of a loss...I'm also thinking of changing my doctor because as nice as she is, she admits that she doesn't really have a clue about what M.E. is and I've heard a few people recommend a good doctor at another surgery local to me so that's the next step...
There's also a lot going on with the renewal of my ESA benefits which I don't really like to talk about but I do just to show how hard they make it and basically to put to bed any doubts about whether I'm "faking" it or not.
I've seen the Welfare Rights team and I learned a lot. I won't go into it but my "adviser" at WRAG (Work-related assessment group) could be in a bit of trouble as 1) she told me I couldn't have anyone go to the appointments with me and 2) she totally dismissed a factual report from the hospital telling her I couldn't participate in any activities. Just to add salt to the wounds, she's told me that it's mandatory I attend a "psychological motivational course". How insulting is that?! This is where my local MP is getting involved... it's been needless stress but it's getting sorted.
What else? My book! Wow time is flying... I am making progress but because my health has been up and down it's been hard to be consistent with my writing. I've also discovered a new word... "voxpopping". Basically I've been invited to go and ask the public in the city for their thoughts and blessings. I'm not entirely sure myself but it's something I'm interested in as it's helping to raise awareness. It'll be a little nerve wracking because I'm not the most social guy but then why not?!
I'm also going to a social gathering for a friends birthday, there's going to be a lot there so it's a big deal for me. A few months back I would have said no but I'm determined that I push myself that bit further this year to do more... let's see what my body's capable of and if I've made much progress!
There's lots of little things in the pipeline but as my head has gone very foggy I'll leave the post here. There were a few more pics but I'll share them another time.
Barry x
Thursday, 1 January 2015
Life Is Complicated: New Book Announcement!
Hello everyone and a very Happy New Year!
Mine didn't get off to the best start when I woke up just before midday though I must've needed the sleep!
A couple of posts ago I talked about what I wanted to achieve this year so I'm not going to mention my goals in this post.
One thing that is probably a few weeks away from being complete is my new book titled "Life Is Complicated: My journey with Asperger Syndrome". It's been hard writing it but will be very rewarding in the end. I think you'll like it and there's a lot more detail and humour added in. I think too if you're a neutral then you'll most likely prefer reading my 2nd book... that's if you like dry humour!
Here's 10 humorous quotes to keep you amused and these are handpicked from only 3 of the 15 chapters!
"My facial expressions didn't help either. I could have been singing a very up-tempo song but going by my face you'd think I was singing a ballad at a funeral"
"I love numbers but not the number 4"
"Being given ice cream with a spoon already in the bowl was a nightmare"
"Using my fingers as a gun with the thumb acting as a trigger shouting "bang, you're dead" didn't really get my adrenaline going much"
"A little bit of spit flew out of someone's straw when they were messing about and onto Ronald McDonald in the center of my birthday cake"
"It took me a while to grasp but I went the other way and started doing it all the time like a nodding dog. I was lucky I didn't get whiplash"
"If they're wearing a fluffy animal print coat then it might sway me"
"I made a point of shaking hands and then craftily as I saw down I might rub my hand on the chair or my trouser leg"
"People don't know if I'm being serious or not and that's part of the humour. It gives me that get out of jail card if I say something inappropriate"
"At least my forehead won't need ironing out in 20 years time unless I have a major mid-life crisis"
To help get word about about my new book, I'm giving all kindle users a chance to purchase my first book "A New ME" from the 3rd January to the 7th January for FREE. It's available in ALL countries too!
http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?s=books&ie=UTF8&qid=1420158128&sr=1-1&keywords=a+new+me
Above is the UK link.
http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_2?ie=UTF8&qid=1420158234&sr=8-2&keywords=a+new+me
Above is the US link.
Oh, and don't forget to share and leave a review!
Thank you.... 3rd January everyone!
Happy New Year!
Barry x
Mine didn't get off to the best start when I woke up just before midday though I must've needed the sleep!
A couple of posts ago I talked about what I wanted to achieve this year so I'm not going to mention my goals in this post.
One thing that is probably a few weeks away from being complete is my new book titled "Life Is Complicated: My journey with Asperger Syndrome". It's been hard writing it but will be very rewarding in the end. I think you'll like it and there's a lot more detail and humour added in. I think too if you're a neutral then you'll most likely prefer reading my 2nd book... that's if you like dry humour!
Here's 10 humorous quotes to keep you amused and these are handpicked from only 3 of the 15 chapters!
"My facial expressions didn't help either. I could have been singing a very up-tempo song but going by my face you'd think I was singing a ballad at a funeral"
"I love numbers but not the number 4"
"Being given ice cream with a spoon already in the bowl was a nightmare"
"Using my fingers as a gun with the thumb acting as a trigger shouting "bang, you're dead" didn't really get my adrenaline going much"
"A little bit of spit flew out of someone's straw when they were messing about and onto Ronald McDonald in the center of my birthday cake"
"It took me a while to grasp but I went the other way and started doing it all the time like a nodding dog. I was lucky I didn't get whiplash"
"If they're wearing a fluffy animal print coat then it might sway me"
"I made a point of shaking hands and then craftily as I saw down I might rub my hand on the chair or my trouser leg"
"People don't know if I'm being serious or not and that's part of the humour. It gives me that get out of jail card if I say something inappropriate"
"At least my forehead won't need ironing out in 20 years time unless I have a major mid-life crisis"
To help get word about about my new book, I'm giving all kindle users a chance to purchase my first book "A New ME" from the 3rd January to the 7th January for FREE. It's available in ALL countries too!
http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?s=books&ie=UTF8&qid=1420158128&sr=1-1&keywords=a+new+me
Above is the UK link.
http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_2?ie=UTF8&qid=1420158234&sr=8-2&keywords=a+new+me
Above is the US link.
Oh, and don't forget to share and leave a review!
Thank you.... 3rd January everyone!
Happy New Year!
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
Saturday, 13 December 2014
New Year, Big Plans!
Hello everyone, I hope you're all having a fabulous weekend so far...
The past few months have been pretty up and down for me but I'm going to focus on the ups...
What am I doing at the moment?
Well I've been writing my 2nd book, it's been a lot more difficult than my 1st book. There's more content and my M.E. symptoms have fluctuated a fair bit since I started writing. However, there's not too much more to do on it. I'm going to have it done hopefully before Christmas but the I will be promoting it more in the New Year. This has been my main focus. I've also been practicing the singing when I can, it must seem forever but these things take time. I've also been pretty tied up with my little ratties. I adopted Gracie, Mags and Pumpkin around a month ago and within days I discovered tumours on all 3 of them. They've been operated on now but they've pulled the stitches out of their wounds. Gracie had staples and they came out too leaving a gaping hole in her tummy, she's required extra attention as 2-3 times a day I have to bathe her wound, put gel in it and give her antibiotics. I guess it's good preparation for when I have a kid of my own, I'm talking more about the caring and not the bathing wounds...
What are next years plans for me?
Well this part of the post is the focal point. The most important point. I'm going to briefly summarise this year and then see how next year can be a better one.
Positives gained from this year:
I'm calling these targets as I don't like the word resolutions. I've never known anyone who sticks to them! These targets I've set I see as doable and I really feel that 2015 is the year big changes will occur.
Exercise - this has been difficult this year but I'm finding what's working for me. I'm finding very gradually I can do more than I could a few months back though still a long way from the "average" person. I've worked the legs which I couldn't have done just months ago even if the weights are light.
I may sign up to a gym and see how it goes. Getting it done in the morning, getting past that "feel like I've been hit by a bus" feeling in the morning and strengthening my body. It may not work but I feel I'm at a point where I can give it a go. I've also decided I'm going to lose weight, get rid of the excess fat and build the weight back up gradually.
Study - this has been difficult to do during the past year but I'm determined that it needs to be done in order to progress with the things I want to do. I'm currently enrolled on 2 courses. A theology course, the aim is not to put back the deadline like I've been continually doing and dedicating certain times of day to do this. The same goes for the nutrition course I'm signed up to.
Personal Training - those who know me will know that this is something I'm qualified in. I also have a degree in business and management and feel the 2 combined can be a real bonus for me. I purchased a web name a year ago and have never done anything with it. This year, I am determined to actually get the website underway and gradually building it up.
Music - Singing is something I've stuck to and I aim to keep on doing it. I've been lacking with piano practice however and this will change next year. I'm working towards writing my own material which won't be possible if I don't keep practicing the 2 so this is a big target for me.
Writing - Well this is secondary to everything above. I've never considered myself an author yet will have 2 books out by the end of the year. It's been great to get my thoughts out onto paper and help raise awareness for different causes. Blogging also comes into this category, I aim to keep my 7 blogs updated even if each blog has 1 update per week. It's doable with a little organising.
Modelling - again, this is secondary as I can't do this without getting back into shape! When I previously modelled, it was a confidence boost and I met some great people whilst making some friends. It's something I'd like to continue doing which can help with my other targets like website promotion etc.
Fresh air - I say this because I've certainly lacked it this year. I've felt at times I've been turning into a hermit which of course I don't want to happen. I always feel better after I've made a trip out of the house so it's a doable aim which will be beneficial for me.
Conclusion:
I always like a conclusion, I feel I've ended something well if there's a conclusion!
You may look at the above and think that this is not possible for someone with M.E. but this is the year I push myself. I may have setbacks but you don't know until you try. I've had 2 years experience of being cautious and listening to my bodies needs, I know when to stop and when to push myself. It's taken time but I've found roughly the right balance.
This time next year I want to view this blog and see the progress I've made. I never break promises and progress WILL be made.
Post any thought underneath, thank for reading!
Barry x
The past few months have been pretty up and down for me but I'm going to focus on the ups...
- My mobility has improved a lot over the past few months, my walking stick isn't being used as much though I've only been keeping to very short distances. Any more than a few minutes walking and my legs start to stiffen and ache quite rapidly.
- Overall, the mid-day naps aren't occurring as much. Since Winter has arrived, it's been very difficult to keep that up as the colder weather is having a great effect on me fatigue and pain wise.
- I've managed to stick to routines more. Having Asperger's means that routines are a must. This includes things like meals, cleaning, hobbies and anything else that needs doing.
What am I doing at the moment?
Well I've been writing my 2nd book, it's been a lot more difficult than my 1st book. There's more content and my M.E. symptoms have fluctuated a fair bit since I started writing. However, there's not too much more to do on it. I'm going to have it done hopefully before Christmas but the I will be promoting it more in the New Year. This has been my main focus. I've also been practicing the singing when I can, it must seem forever but these things take time. I've also been pretty tied up with my little ratties. I adopted Gracie, Mags and Pumpkin around a month ago and within days I discovered tumours on all 3 of them. They've been operated on now but they've pulled the stitches out of their wounds. Gracie had staples and they came out too leaving a gaping hole in her tummy, she's required extra attention as 2-3 times a day I have to bathe her wound, put gel in it and give her antibiotics. I guess it's good preparation for when I have a kid of my own, I'm talking more about the caring and not the bathing wounds...
What are next years plans for me?
Well this part of the post is the focal point. The most important point. I'm going to briefly summarise this year and then see how next year can be a better one.
Positives gained from this year:
- It's given me more time to adjust to my bodies needs like how to pace and how far I can push myself without receiving too much payback.
- I've become more independent and found it easier coping with others lack of understanding towards the condition.
- I wrote my 1st book which I would never have dreamed of just month ago.
- I've had a year practicing singing and made big improvements thought still a long way to go.
- It's become more clear in my mind what direction I want to go.
I'm calling these targets as I don't like the word resolutions. I've never known anyone who sticks to them! These targets I've set I see as doable and I really feel that 2015 is the year big changes will occur.
Exercise - this has been difficult this year but I'm finding what's working for me. I'm finding very gradually I can do more than I could a few months back though still a long way from the "average" person. I've worked the legs which I couldn't have done just months ago even if the weights are light.
I may sign up to a gym and see how it goes. Getting it done in the morning, getting past that "feel like I've been hit by a bus" feeling in the morning and strengthening my body. It may not work but I feel I'm at a point where I can give it a go. I've also decided I'm going to lose weight, get rid of the excess fat and build the weight back up gradually.
Study - this has been difficult to do during the past year but I'm determined that it needs to be done in order to progress with the things I want to do. I'm currently enrolled on 2 courses. A theology course, the aim is not to put back the deadline like I've been continually doing and dedicating certain times of day to do this. The same goes for the nutrition course I'm signed up to.
Personal Training - those who know me will know that this is something I'm qualified in. I also have a degree in business and management and feel the 2 combined can be a real bonus for me. I purchased a web name a year ago and have never done anything with it. This year, I am determined to actually get the website underway and gradually building it up.
Music - Singing is something I've stuck to and I aim to keep on doing it. I've been lacking with piano practice however and this will change next year. I'm working towards writing my own material which won't be possible if I don't keep practicing the 2 so this is a big target for me.
Writing - Well this is secondary to everything above. I've never considered myself an author yet will have 2 books out by the end of the year. It's been great to get my thoughts out onto paper and help raise awareness for different causes. Blogging also comes into this category, I aim to keep my 7 blogs updated even if each blog has 1 update per week. It's doable with a little organising.
Modelling - again, this is secondary as I can't do this without getting back into shape! When I previously modelled, it was a confidence boost and I met some great people whilst making some friends. It's something I'd like to continue doing which can help with my other targets like website promotion etc.
Fresh air - I say this because I've certainly lacked it this year. I've felt at times I've been turning into a hermit which of course I don't want to happen. I always feel better after I've made a trip out of the house so it's a doable aim which will be beneficial for me.
Conclusion:
I always like a conclusion, I feel I've ended something well if there's a conclusion!
You may look at the above and think that this is not possible for someone with M.E. but this is the year I push myself. I may have setbacks but you don't know until you try. I've had 2 years experience of being cautious and listening to my bodies needs, I know when to stop and when to push myself. It's taken time but I've found roughly the right balance.
This time next year I want to view this blog and see the progress I've made. I never break promises and progress WILL be made.
Post any thought underneath, thank for reading!
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, 8 November 2014
A very SPECIAL OFFER for KINDLE users helping to raise Awareness for M.E.
Hello everyone... if you're a Kindle user then I have a very special offer for you which starts TOMORROW (Sunday 9th November) and ends on Thursday (13th November).
So what's the offer?
Well my first published book "A New ME" will be available in that time period for FREE!!! Not only that, but for every copy sold during that time period, I will personally donate 10p per purchase. The charity is the same as always, "Invest in ME".
What's the catch? There honestly is no catch although it would be much appreciated if you could leave the book a review on Amazon and even Goodreads if you use that.
Why am I doing this? Well it's not due to lack of sales, it's selling fairly steady at the moment. I'm just feeling kind... also, the more copies that are sold means the higher ranking the book will be on amazon. This is great for ME Awareness so even if you're not really interested in reading the book, purchase it for FREE.
Here are the links:
UK version: http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1415454713
US version: http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1_twi_2?ie=UTF8&qid=1415454823&sr=8-1&keywords=a+new+me
Lastly, the book is available in ALL COUNTRIES and don't forget that the offer starts TOMORROW!!!
If you could share this post around then that would be great, I'll also be tweeting a lot about it on twitter if you want to follow me @bazmufc8491 and @BJEadvertise
Thanks for all your support!!! XXX
So what's the offer?
Well my first published book "A New ME" will be available in that time period for FREE!!! Not only that, but for every copy sold during that time period, I will personally donate 10p per purchase. The charity is the same as always, "Invest in ME".
What's the catch? There honestly is no catch although it would be much appreciated if you could leave the book a review on Amazon and even Goodreads if you use that.
Why am I doing this? Well it's not due to lack of sales, it's selling fairly steady at the moment. I'm just feeling kind... also, the more copies that are sold means the higher ranking the book will be on amazon. This is great for ME Awareness so even if you're not really interested in reading the book, purchase it for FREE.
Here are the links:
UK version: http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1415454713
US version: http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1_twi_2?ie=UTF8&qid=1415454823&sr=8-1&keywords=a+new+me
Lastly, the book is available in ALL COUNTRIES and don't forget that the offer starts TOMORROW!!!
If you could share this post around then that would be great, I'll also be tweeting a lot about it on twitter if you want to follow me @bazmufc8491 and @BJEadvertise
Thanks for all your support!!! XXX
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:
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