Hello! So first of all, I apologize for not updating my blog in so long! It's not been a great couple of months to be honest. For example, over the past weekend, I spent around 30/48 hours lying down on my bed! This week, I'm really trying to push myself (not too much) so be slightly more active. It's easier said than done as I'm sure you all know...
It's not a great start to the week, as you can see in the title I had to attend the WRAG group for a 2nd time. If you scroll back a bit, you'll see I posted after the 1st session. Tomorrow I'm at hospital for therapy so it's a very tiring couple of days!
So... WRAG group... well, I went along, waited about 10 minutes, spoke to the person I saw for about 5 minutes and then sat for around 20 minutes whilst they were typing on the computer.
What did we talk about for those 5 minutes bearing in mind it's meant to be an hour long session? (though I'm not complaining!) Well... very little actually. They were asking me what sort of work I wanted to be doing and of course, the answer is the same as it always has been. The thing I'm qualified in called Personal Training! I can't get my head around the next bit... They asked me if I'd heard of a group, something like active for life?! Anyway, it's something you ask your doctor and it's basically going along to see a trainer in a special gym who will personalize a program for you to help you get back to full fitness. ??????!!!!!!!! Not only did I find this insulting but I found it ridiculous. 1st of all, I'm a Personal Trainer! Why on earth would I want to be trained by someone else who is no more qualified than I am?! 2nd of all, working out with moderate M.E... I don't think so... Unless of course I want to make myself worse. I do very little at home and even that is pushing it, never mind a full gym workout!
Not for 1 minute am I blaming the person I saw, she even said that the Job Centre are on their backs asking what they're doing with these people in the WRAG group.
Anyway, the conclusion of our 'meeting' was that I'm going back in 2 weeks to complete my C.V. even though they said the one I gave them was fine, just needed to be adjusted for their purposes!
Also, when I'm at the hospital tomorrow, I need a report from my OT to state what they're doing with me just so when I have my next WRAG group meeting, they know what I can and can't do... in writing as they can't take my word for it...
So... if anyone else has any experiences of WRAG groups then leave a comment!
Thanks for reading...
Barry x
Monday, 14 April 2014
Friday, 21 February 2014
My Nominations for the First ME CFS FMS Blog Awards (2)
Hello all!
So basically, this is a continuation from yesterdays post. I've just taken some painkillers so I'm hoping my headache will ease a bit whilst I'm doing this.
Yesterday, I explained the rules of the Blog Awards started by Sally. It's a great idea and as I want to try and raise as much awareness as possible, I'm going to share with you 6 others blogs. I shared 4 with you yesterday and I thought I'd take the tally up to 10!
Here goes...
This is Megan with "my chronic life journey".
http://mychroniclifejourney.com/
Megan was diagnosed last April after being rushed to hospital with extreme stomach cramps. A lot of Megan's posts provide useful tips for those suffering with M.E. She has also started up the "Foggy Frog and the Pain Gang Campaign" which you should check out.
Next up is Ali with "All about ME!".
http://beingamummywithme.blogspot.co.uk/
Ali suffers with severe M.E. and gives us a great insight into what it's like to be a mum whilst suffering with the illness. From the preparations through to the pregnancy, this is a must read for any mums to be.
Next up is Cort Johnson with his blog on the "Health Rising" website.
http://www.cortjohnson.org/blog/author/Cortttt/
Cort writes many articles based on facts and reports. It's a must read for those who are into statistics and for those looking to help find a cure to this illness. The article "What stops you from trying to get better? An ME/CFS and Fibromyalgia community report" may be of particular interest to you. http://www.cortjohnson.org/blog/2014/02/10/stops-trying-get-better-me-cfs-fibromyalgia-community-report/
Next up is Cari with her blog on the "Heal Click" website.
http://blog.healclick.com/author/cari
Cari's blog is very much like Cort's blog as she writes many articles based on facts and reports. "Sensory Overload & Lack of Inhibition in Fibromyalgia & MECFS may interest you in particular: http://blog.healclick.com/fibromyalgia/sensory-overload-in-fibromyalgia-mecfs
Next up is Leigh with "a Path Through the Valley".
http://apaththroughthevalley.wordpress.com/
Leigh has suffered with M.E. since the age of 15. In this blog, a variety of topics are talked about including "Bible/theology, UK politics/poverty and disability/chronic illness". It provides a great insight into Leigh's life with M.E. and in particular I thought you may like to see this post: http://apaththroughthevalley.wordpress.com/2013/05/06/being-there/ Leigh set this up for M.E. Awareness week last year when a few of us wrote about a different topic on our blogs each day, it also has links to the other blogs as well as my Youtube channel.
Next up is Jess with "My Journey Thru M.E.".
http://myjourneythrume.wordpress.com/
Jess was a solicitor who came down with M.E. just a couple of years ago whilst in her 20's. Her blog tells the story of her life through this horrible illness. As well as giving us an insight into her life with ME, Jess also provides links, remedies and her own strategy regarding M.E.
So there we go, there's my last 6!
I'm very tired now and my headache has come back, it's 21:14pm and I need to put my tea on!
Thanks for reading everyone and continue to raise awareness for this terrible illness.
For the rules concerning nominations, check out my last post. :)
Barry x
So basically, this is a continuation from yesterdays post. I've just taken some painkillers so I'm hoping my headache will ease a bit whilst I'm doing this.
Yesterday, I explained the rules of the Blog Awards started by Sally. It's a great idea and as I want to try and raise as much awareness as possible, I'm going to share with you 6 others blogs. I shared 4 with you yesterday and I thought I'd take the tally up to 10!
Here goes...
This is Megan with "my chronic life journey".
http://mychroniclifejourney.com/
Megan was diagnosed last April after being rushed to hospital with extreme stomach cramps. A lot of Megan's posts provide useful tips for those suffering with M.E. She has also started up the "Foggy Frog and the Pain Gang Campaign" which you should check out.
Next up is Ali with "All about ME!".
http://beingamummywithme.blogspot.co.uk/
Ali suffers with severe M.E. and gives us a great insight into what it's like to be a mum whilst suffering with the illness. From the preparations through to the pregnancy, this is a must read for any mums to be.
Next up is Cort Johnson with his blog on the "Health Rising" website.
http://www.cortjohnson.org/blog/author/Cortttt/
Cort writes many articles based on facts and reports. It's a must read for those who are into statistics and for those looking to help find a cure to this illness. The article "What stops you from trying to get better? An ME/CFS and Fibromyalgia community report" may be of particular interest to you. http://www.cortjohnson.org/blog/2014/02/10/stops-trying-get-better-me-cfs-fibromyalgia-community-report/
Next up is Cari with her blog on the "Heal Click" website.
http://blog.healclick.com/author/cari
Cari's blog is very much like Cort's blog as she writes many articles based on facts and reports. "Sensory Overload & Lack of Inhibition in Fibromyalgia & MECFS may interest you in particular: http://blog.healclick.com/fibromyalgia/sensory-overload-in-fibromyalgia-mecfs
Next up is Leigh with "a Path Through the Valley".
http://apaththroughthevalley.wordpress.com/
Leigh has suffered with M.E. since the age of 15. In this blog, a variety of topics are talked about including "Bible/theology, UK politics/poverty and disability/chronic illness". It provides a great insight into Leigh's life with M.E. and in particular I thought you may like to see this post: http://apaththroughthevalley.wordpress.com/2013/05/06/being-there/ Leigh set this up for M.E. Awareness week last year when a few of us wrote about a different topic on our blogs each day, it also has links to the other blogs as well as my Youtube channel.
Next up is Jess with "My Journey Thru M.E.".
http://myjourneythrume.wordpress.com/
Jess was a solicitor who came down with M.E. just a couple of years ago whilst in her 20's. Her blog tells the story of her life through this horrible illness. As well as giving us an insight into her life with ME, Jess also provides links, remedies and her own strategy regarding M.E.
So there we go, there's my last 6!
I'm very tired now and my headache has come back, it's 21:14pm and I need to put my tea on!
Thanks for reading everyone and continue to raise awareness for this terrible illness.
For the rules concerning nominations, check out my last post. :)
Barry x
Thursday, 20 February 2014
My Nominations for the First ME CFS FMS Blog Awards
Hello!
First of all, I'd like to apologise for the fact I haven't updated this for a bit, I'm coming down with an upper respiratory infection making my M.E. symptoms twice as bad. It's funny, when I was previously very fit and athletic, I was pretty much immune from any infections and very rarely caught them but now it's a different story...
So, the title of this post? I was very kindly nominated for the 'First ME CFS FMS Blog Awards' by Sally Burch with a very kind few sentences explaining what my blog is about:
"This is a very new, but perceptive blog written by a young man suffering with ME. This post on Deteriorating Friendships is likely to resonate with many ME and Fibro patients. And it's not just this post, throughout his blog Barry shows clear insight into what it is like to live with a disabling illness like ME, at a time when the world just expects us all to keep going".
I think it's a great idea to raise awareness and as Sally said, to "reward diligent bloggers, and to help us all to seek out new and interesting blogs".
Before explaining the rules of the nominations, I'm going to pick out a few blogs to write a few lines about...
1st of all, I'd like to share with you Sally's blog "Just ME"
http://sallyjustme.blogspot.co.uk/
This blog is incredibly well researched, easy to read and very informative. Sally doesn't just write about her own battles with ME, she provides a thorough insight into a variety of things such as doctors opinions, interesting articles and advice based on previous experience. Lastly, here is Sally's "ME Backstory" http://sallyjustme.blogspot.co.uk/2013/12/my-me-backstory.html
For the rest of my nominations, I am going to pick out different blogs to those that Sally has nominated, this is to make sure that as much awareness is raised as possible. As I'm new to this blogging, I'm only familiar with a few blogs so here goes...
My next nomination is Clare Wood with "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" and "A life Within an Illness"
http://lifewithmedoingadegree.blogspot.co.uk/
http://alifewithinanillness.blogspot.co.uk/
Clare has had a difficult start to life, she was diagnosed with M.E. at the start of secondary school and was bed bound for 3-4 years whilst studying for her GCSE's. Clare improved for a couple of years after that but deteriorated again after that. Despite this, she has the added pressure of doing her degree. Clare's blogs offer a thorough insight into her life bit by bit. In particular, "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" shows the struggles that occur whilst studying and is something students with M.E. can relate to.
My next nomination is Kealie Mardell with "Seeing is Believing: Canary in a Coalmine"
http://www.kealiemardell.co.uk/2014/01/seeing-is-believing-canary-in-coalmine.html
Kealie recently shared this link with me which I was very grateful for. Kealie is a Mass Communications undergraduate studying in California. She writes about many things and her post about M.E. is incredibly well written. "Canary in a Coalmine" is a documentary to help raise awareness for M.E. This post provides many quotes and a very realistic insight into how it feels to have M.E. It also provides several facts, quotes and is very informative in relation to the documentary.
My next nomination is Nigel & Miranda Brewster with "Dozy Dayz"
http://dozydayz.co.uk/index.html
Nigel & Miranda both suffer with severe M.E. Nigel has suffered for 20 years, Miranda has suffered for 11 years and they've both been bed bound for long periods. "Dozy Dayz" is a website providing tips, books reviews, surveys and videos. The videos http://dozydayz.co.uk/video.html provide good tips as well as personal experiences. They do a lot to raise awareness for M.E. and do a great job of it.
I will probably share a few more tomorrow but I'm very tired now!
And finally...
*************
ME & CFS & FMS BLOGGER AWARDS:
Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia (FMS).
The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.
It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves. No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.
HOW IT WORKS:
1, On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award. The page will also include this set of instructions and the two award images.
2. Please note, you do not need accept the award. The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.
3. To claim your award:
a) Create a new post on your blog, in which you thank the individual who gave you the award (remember to include a link back to their blog). You can then copy the images to your blog post and/or side bar as you wish.
You may need to click on the image and download it, before putting it into your own post.
Below is the code for adding the small image as a link in your blog side bar if you wish to do so:
<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>
b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special. A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.
c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )
d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs. The comment could simply read:
"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. Please visit <insert link to the post you have just created> to collect your Award"
3. Hopefully these awards will spread far and wide. I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.
THANK YOU ALL FOR PARTICIPATING.
Sally
http://sallyjustme.blogspot.co.uk/
First of all, I'd like to apologise for the fact I haven't updated this for a bit, I'm coming down with an upper respiratory infection making my M.E. symptoms twice as bad. It's funny, when I was previously very fit and athletic, I was pretty much immune from any infections and very rarely caught them but now it's a different story...
So, the title of this post? I was very kindly nominated for the 'First ME CFS FMS Blog Awards' by Sally Burch with a very kind few sentences explaining what my blog is about:
"This is a very new, but perceptive blog written by a young man suffering with ME. This post on Deteriorating Friendships is likely to resonate with many ME and Fibro patients. And it's not just this post, throughout his blog Barry shows clear insight into what it is like to live with a disabling illness like ME, at a time when the world just expects us all to keep going".
I think it's a great idea to raise awareness and as Sally said, to "reward diligent bloggers, and to help us all to seek out new and interesting blogs".
Before explaining the rules of the nominations, I'm going to pick out a few blogs to write a few lines about...
1st of all, I'd like to share with you Sally's blog "Just ME"
http://sallyjustme.blogspot.co.uk/
This blog is incredibly well researched, easy to read and very informative. Sally doesn't just write about her own battles with ME, she provides a thorough insight into a variety of things such as doctors opinions, interesting articles and advice based on previous experience. Lastly, here is Sally's "ME Backstory" http://sallyjustme.blogspot.co.uk/2013/12/my-me-backstory.html
For the rest of my nominations, I am going to pick out different blogs to those that Sally has nominated, this is to make sure that as much awareness is raised as possible. As I'm new to this blogging, I'm only familiar with a few blogs so here goes...
My next nomination is Clare Wood with "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" and "A life Within an Illness"
http://lifewithmedoingadegree.blogspot.co.uk/
http://alifewithinanillness.blogspot.co.uk/
Clare has had a difficult start to life, she was diagnosed with M.E. at the start of secondary school and was bed bound for 3-4 years whilst studying for her GCSE's. Clare improved for a couple of years after that but deteriorated again after that. Despite this, she has the added pressure of doing her degree. Clare's blogs offer a thorough insight into her life bit by bit. In particular, "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" shows the struggles that occur whilst studying and is something students with M.E. can relate to.
My next nomination is Kealie Mardell with "Seeing is Believing: Canary in a Coalmine"
http://www.kealiemardell.co.uk/2014/01/seeing-is-believing-canary-in-coalmine.html
Kealie recently shared this link with me which I was very grateful for. Kealie is a Mass Communications undergraduate studying in California. She writes about many things and her post about M.E. is incredibly well written. "Canary in a Coalmine" is a documentary to help raise awareness for M.E. This post provides many quotes and a very realistic insight into how it feels to have M.E. It also provides several facts, quotes and is very informative in relation to the documentary.
My next nomination is Nigel & Miranda Brewster with "Dozy Dayz"
http://dozydayz.co.uk/index.html
Nigel & Miranda both suffer with severe M.E. Nigel has suffered for 20 years, Miranda has suffered for 11 years and they've both been bed bound for long periods. "Dozy Dayz" is a website providing tips, books reviews, surveys and videos. The videos http://dozydayz.co.uk/video.html provide good tips as well as personal experiences. They do a lot to raise awareness for M.E. and do a great job of it.
I will probably share a few more tomorrow but I'm very tired now!
And finally...
*************
ME & CFS & FMS BLOGGER AWARDS:
Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia (FMS).
The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.
It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves. No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.
HOW IT WORKS:
1, On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award. The page will also include this set of instructions and the two award images.
2. Please note, you do not need accept the award. The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.
3. To claim your award:
a) Create a new post on your blog, in which you thank the individual who gave you the award (remember to include a link back to their blog). You can then copy the images to your blog post and/or side bar as you wish.
You may need to click on the image and download it, before putting it into your own post.
Below is the code for adding the small image as a link in your blog side bar if you wish to do so:
<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>
b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special. A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.
c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )
d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs. The comment could simply read:
"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. Please visit <insert link to the post you have just created> to collect your Award"
3. Hopefully these awards will spread far and wide. I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.
THANK YOU ALL FOR PARTICIPATING.
Sally
http://sallyjustme.blogspot.co.uk/
Wednesday, 12 February 2014
M.E. - Severe revision has ended!
Hello all!
It's been a very draining few days... I had a nutrition resit exam today, it's an exam I haven't taken for around a year due to numerous reasons... mainly because I wasn't fit enough to travel with the added pressure of it being in the morning (my worst time of day). Luckily I passed! The last few days I've made myself worse due to severe revision but I wanted to make sure I got it out of the way...
I got up shortly after 7am and was out of the house just before 8am. It took me just under an hour to drive to the location where I was having the resit and I was home around 11am. When I got home, I watched some t.v. but had to stop after around half an hour as my aches/pains, fatigue and brain fog were becoming very distracting! I had to have a lie down so I went back to bed for around an hour, still feeling achy etc but I felt marginally better than before I went for a lie down.
This afternoon I paid my M.O.T. (received invoice in the post a few days ago) £420 - ouch! I paid for a lifetime subscription with gigajam (the website I use for keyboard lessons) and I'm having a visit late tomorrow morning from the church pastor for a catch up, I haven't been well enough for church a fair few times recently so it will be nice to have a chat and he's always been helpful. :) I'm seeing my dad tomorrow afternoon (if I'm well enough). He worked a lot so I have to fit in with him and usually see him once a week. If I have a nap early afternoon then my symptoms shouldn't be too bad!
No singing or exercise the last few days, certainly not feeling up to that...
Lastly, there's some terrible winds going on outside. I'm sweating in here but I daren't open this window!
Hope you're all safe and wrapped up indoors!
Speak to you all soon x
It's been a very draining few days... I had a nutrition resit exam today, it's an exam I haven't taken for around a year due to numerous reasons... mainly because I wasn't fit enough to travel with the added pressure of it being in the morning (my worst time of day). Luckily I passed! The last few days I've made myself worse due to severe revision but I wanted to make sure I got it out of the way...
I got up shortly after 7am and was out of the house just before 8am. It took me just under an hour to drive to the location where I was having the resit and I was home around 11am. When I got home, I watched some t.v. but had to stop after around half an hour as my aches/pains, fatigue and brain fog were becoming very distracting! I had to have a lie down so I went back to bed for around an hour, still feeling achy etc but I felt marginally better than before I went for a lie down.
This afternoon I paid my M.O.T. (received invoice in the post a few days ago) £420 - ouch! I paid for a lifetime subscription with gigajam (the website I use for keyboard lessons) and I'm having a visit late tomorrow morning from the church pastor for a catch up, I haven't been well enough for church a fair few times recently so it will be nice to have a chat and he's always been helpful. :) I'm seeing my dad tomorrow afternoon (if I'm well enough). He worked a lot so I have to fit in with him and usually see him once a week. If I have a nap early afternoon then my symptoms shouldn't be too bad!
No singing or exercise the last few days, certainly not feeling up to that...
Lastly, there's some terrible winds going on outside. I'm sweating in here but I daren't open this window!
Hope you're all safe and wrapped up indoors!
Speak to you all soon x
Sunday, 9 February 2014
M.E. - Deteriorating Friendships
Sorry I haven't posted in a few days!
Say, as the title says... Deteriorating Friendships...
It's such a common problem with M.E. sufferers or any Chronic Illness sufferers in general. It's not until recently that I've noticed a change.
Since I was diagnosed last January, friends haven't really questioned me and I thought everything was fine. I was a little upset that they didn't ask how I was but appreciate they were still acting as normal and not holding my illness against me. Really, why should I be appreciative? It sounds like I should be honoured that people still want to know me... Surely that's not right?
Anyway, over the last few months in particular I've been seeing my friends less and less. I've not been able a lot of the time, bedbound for long periods over Christmas but of course everyone gets lazy over Christmas don't they!! I'm just being lazy, of course I'd rather be in bed than out spending time with friends and getting some fresh air, makes sense doesn't it?! Not...
I mentioned on my last post (or the one before) about some comments made to me on New Years Eve. It upset me but then he's probably just very uneducated about what M.E. is... lets give him the benefit of the doubt, a bit cocky but bite your lip sort of guy...
It turns out a much closer friend doesn't believe I really have M.E. too, of course he hasn't approached me about this. In fact I haven't heard a peep out of him since that night... Shows what a slip of the tongue can do... I didn't hear what he was saying and it could have been misinterpreted sure... but thinking back over the past year, how often has this supposed close friend messaged me/called me to see how I am? I could very easily count that on 1 hand. Innocent remarks that totally disregard my illness. So much more, but why go into it?
M.E. is terrible for thoughts, it enables you to think more than you've ever thought before, that includes dwelling on every comment made to you, becoming an anxious wreck and feeling embarrassed when lagging behind because you can't keep up anymore...
One thing is for sure, M.E. eventually can make you VERY thick skinned, if not then how could you survive? So many against you when you've done nothing wrong. Feelings of guilt because you've fallen ill - it's all our fault isn't it!
I can understand people not wanting to read up about M.E. if you're going to come to conclusions about others who have it, DO YOUR RESEARCH! Stop jumping on the bandwagon and realise how selfish you're coming across...
This isn't a rant, these are thoughts and emotions that I know every Chronic Illness sufferer experiences.
I've said it before and I'll say it again, I have many qualifications, finding a job isn't a problem for me... medical experts have diagnosed me with this illness, are you saying they're wrong? Maybe I faked my appointments but of course medical experts could never see through that could they! Why would I want to fake it?
It's outrageous that the biggest challenge of this illness is trying to get "friends" to understand. If that is your mindset then I really don't want to know you!
Having said all that, I have some very supportive people in my life, they outnumber these narrow minded people without question.
Thanks for reading! ;)
Say, as the title says... Deteriorating Friendships...
It's such a common problem with M.E. sufferers or any Chronic Illness sufferers in general. It's not until recently that I've noticed a change.
Since I was diagnosed last January, friends haven't really questioned me and I thought everything was fine. I was a little upset that they didn't ask how I was but appreciate they were still acting as normal and not holding my illness against me. Really, why should I be appreciative? It sounds like I should be honoured that people still want to know me... Surely that's not right?
Anyway, over the last few months in particular I've been seeing my friends less and less. I've not been able a lot of the time, bedbound for long periods over Christmas but of course everyone gets lazy over Christmas don't they!! I'm just being lazy, of course I'd rather be in bed than out spending time with friends and getting some fresh air, makes sense doesn't it?! Not...
I mentioned on my last post (or the one before) about some comments made to me on New Years Eve. It upset me but then he's probably just very uneducated about what M.E. is... lets give him the benefit of the doubt, a bit cocky but bite your lip sort of guy...
It turns out a much closer friend doesn't believe I really have M.E. too, of course he hasn't approached me about this. In fact I haven't heard a peep out of him since that night... Shows what a slip of the tongue can do... I didn't hear what he was saying and it could have been misinterpreted sure... but thinking back over the past year, how often has this supposed close friend messaged me/called me to see how I am? I could very easily count that on 1 hand. Innocent remarks that totally disregard my illness. So much more, but why go into it?
M.E. is terrible for thoughts, it enables you to think more than you've ever thought before, that includes dwelling on every comment made to you, becoming an anxious wreck and feeling embarrassed when lagging behind because you can't keep up anymore...
One thing is for sure, M.E. eventually can make you VERY thick skinned, if not then how could you survive? So many against you when you've done nothing wrong. Feelings of guilt because you've fallen ill - it's all our fault isn't it!
I can understand people not wanting to read up about M.E. if you're going to come to conclusions about others who have it, DO YOUR RESEARCH! Stop jumping on the bandwagon and realise how selfish you're coming across...
This isn't a rant, these are thoughts and emotions that I know every Chronic Illness sufferer experiences.
I've said it before and I'll say it again, I have many qualifications, finding a job isn't a problem for me... medical experts have diagnosed me with this illness, are you saying they're wrong? Maybe I faked my appointments but of course medical experts could never see through that could they! Why would I want to fake it?
It's outrageous that the biggest challenge of this illness is trying to get "friends" to understand. If that is your mindset then I really don't want to know you!
Having said all that, I have some very supportive people in my life, they outnumber these narrow minded people without question.
Thanks for reading! ;)
Thursday, 6 February 2014
M.E. - Finding balanced forms of entertainment
Here again... and at least this time it isn't past 3am in the morning! I'll be in bed shortly after 1am... mind you, I was last night! Hopefully I can sleep better tonight...
Today has been a pretty average day in terms of my M.E. I admit, I just had to nap before... not surprising considering I didn't get to sleep till 4.30am yesterday morning... The positive is that it wasn't during the evening! I've managed to stay awake this evening...
You know that feeling when you feel you've wasted the day sat at your computer but you continue to do it anyway? That's me today and something I experience more often than I would like. It sends you into a trance... I'm baffled at how much time passes when I'm on the computer - looking at facebook, football news, general news, twitter, blogger, youtube etc etc - How on earth can these things keep me occupied for hours on end? I don't know, but they do!
I think it's so easy to do because you can sit at your computer even with bad brain fog, it doesn't require a high level of concentration - playing songs on loop, general chit chat that your brain is so used to it becomes 2nd nature and you don't have to think about what you say, not only that but computer chairs can be very comfortable... mine is anyway!
I've banned myself from PC games - Whenever I played Football Manager, I literally played it for hours and knew it was doing me no good. Unfortunately, less time spent on the computer means either television or bed... unless you're having a reasonable day and you can leave the house but most of the time these are the only options we have when we're housebound.
What about reading a book? I've tried to start reading more but not only does my head hurt, information tends not to go in after between 5-10 minutes!
I have my singing but again, it's very energy consuming... correct breathing techniques, listening to your own voice as well as listening to the tune can be exhausting, not to mention all the warming up scales!
I find it's a very frustrating vicious circle that we find ourselves in - evening inviting friends round is incredibly exhausting, making conversation, focusing all your energy on your friends is mentally draining.
The only thing really that we can do is to find that fine line, limiting time spent doing all these things. Finding an even balance - spacing it out which is easier said than done.
Enough waffle from me, I have to drop the dog off to be trimmed at 9am followed by a hair appointment at 10.15am - no doubt I'll be needing that afternoon nap!
See you all tomorrow x
Today has been a pretty average day in terms of my M.E. I admit, I just had to nap before... not surprising considering I didn't get to sleep till 4.30am yesterday morning... The positive is that it wasn't during the evening! I've managed to stay awake this evening...
You know that feeling when you feel you've wasted the day sat at your computer but you continue to do it anyway? That's me today and something I experience more often than I would like. It sends you into a trance... I'm baffled at how much time passes when I'm on the computer - looking at facebook, football news, general news, twitter, blogger, youtube etc etc - How on earth can these things keep me occupied for hours on end? I don't know, but they do!
I think it's so easy to do because you can sit at your computer even with bad brain fog, it doesn't require a high level of concentration - playing songs on loop, general chit chat that your brain is so used to it becomes 2nd nature and you don't have to think about what you say, not only that but computer chairs can be very comfortable... mine is anyway!
I've banned myself from PC games - Whenever I played Football Manager, I literally played it for hours and knew it was doing me no good. Unfortunately, less time spent on the computer means either television or bed... unless you're having a reasonable day and you can leave the house but most of the time these are the only options we have when we're housebound.
What about reading a book? I've tried to start reading more but not only does my head hurt, information tends not to go in after between 5-10 minutes!
I have my singing but again, it's very energy consuming... correct breathing techniques, listening to your own voice as well as listening to the tune can be exhausting, not to mention all the warming up scales!
I find it's a very frustrating vicious circle that we find ourselves in - evening inviting friends round is incredibly exhausting, making conversation, focusing all your energy on your friends is mentally draining.
The only thing really that we can do is to find that fine line, limiting time spent doing all these things. Finding an even balance - spacing it out which is easier said than done.
Enough waffle from me, I have to drop the dog off to be trimmed at 9am followed by a hair appointment at 10.15am - no doubt I'll be needing that afternoon nap!
See you all tomorrow x
Wednesday, 5 February 2014
M.E. - Sleep Problems
Morning... It's just turned 3:16am and it's raining pretty heavily outside. Not only that but there's an annoying green light shining through my window (I live behind the back of a shop).
Why can't I get to sleep? To be honest, it's probably because I had an hours nap this evening but something doesn't quite add up.
If I ever nap during the day, I can nap again and again and again but during the evening although I'm tired I just can't get to sleep.
Maybe it's a mixture of things: Anxiety, stress, temperature, thoughts etc etc...
I know a lot will relate to me when I say that night time is when a lot of us will start to conjure up our thoughts and just can't let our minds rest. Maybe a comment someone has said, insecurities, stress created through jobs you know have to be done, the knowledge that when you wake up you have to face another day.
From time to time, these all tend to play a part. A big problem of mine is knowing that when I wake up in the morning that I'm going to be at my worst. Before you know it, afternoon has come along and there's the mad rush to get a few things done then back to square 1 in the evening. There's just not enough hours in the day, or too many depending on your outlook!
At one point, I thought that it could have something to do with the medication I take (anti-depressants) which I've been on for around 5 years now. I've been on the latest lot for around 3 years. I originally took them at night but started taking them in the morning and unsurprisingly for me, it didn't make a difference!
Apparently, spending time on your computer before bed time can have an affect. It makes it hard for our minds to switch off - so why am I writing a blog before getting back into bed?!?!?!
Maybe I eat too late, I admit it wasn't far from 10pm when I had my tea - I fell asleep near 8pm when I was going to put it on and woke up an hour later - took me twice as long to make because I was dazed! Typically though, I eat between 7 and 8 - apparently it's not good to eat after 8pm - again, I admit I don't stick to this, I get too hungry and need my food! I've started having a protein shake between tea and bed - muscles repair when your body is totally relaxed (in your sleep) so it makes sense.
That's enough rambling on from me - I've been writing this post for 18 minutes!
Night x
Why can't I get to sleep? To be honest, it's probably because I had an hours nap this evening but something doesn't quite add up.
If I ever nap during the day, I can nap again and again and again but during the evening although I'm tired I just can't get to sleep.
Maybe it's a mixture of things: Anxiety, stress, temperature, thoughts etc etc...
I know a lot will relate to me when I say that night time is when a lot of us will start to conjure up our thoughts and just can't let our minds rest. Maybe a comment someone has said, insecurities, stress created through jobs you know have to be done, the knowledge that when you wake up you have to face another day.
From time to time, these all tend to play a part. A big problem of mine is knowing that when I wake up in the morning that I'm going to be at my worst. Before you know it, afternoon has come along and there's the mad rush to get a few things done then back to square 1 in the evening. There's just not enough hours in the day, or too many depending on your outlook!
At one point, I thought that it could have something to do with the medication I take (anti-depressants) which I've been on for around 5 years now. I've been on the latest lot for around 3 years. I originally took them at night but started taking them in the morning and unsurprisingly for me, it didn't make a difference!
Apparently, spending time on your computer before bed time can have an affect. It makes it hard for our minds to switch off - so why am I writing a blog before getting back into bed?!?!?!
Maybe I eat too late, I admit it wasn't far from 10pm when I had my tea - I fell asleep near 8pm when I was going to put it on and woke up an hour later - took me twice as long to make because I was dazed! Typically though, I eat between 7 and 8 - apparently it's not good to eat after 8pm - again, I admit I don't stick to this, I get too hungry and need my food! I've started having a protein shake between tea and bed - muscles repair when your body is totally relaxed (in your sleep) so it makes sense.
That's enough rambling on from me - I've been writing this post for 18 minutes!
Night x
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