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! ;)
Sunday, 9 February 2014
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
Tuesday, 4 February 2014
M.E. - Why do I have to use Walking Aids?!
Good morning! (very early morning)
It's 01:39am and I'm straight off to bed after I've typed this.
So how's today gone? Very well actually...
Very well as in I've stuck to my routine well and got my tasks done, fatigue wise I haven't lay down all day so I shouldn't have much of a problem getting to sleep (hopefully not anyway) though my pains aren't great today. Well, they are great depending on which way you look at it! I had to take painkillers this evening for the 1st time in a while as they got to the point where I didn't the dog to sit on my knee the pains were that bad. Also, despite not being overly physically tired, my eyes were extremely sore this evening to the point where I couldn't open them for a bit. No blurred vision either... anyone experience anything similar?
Anyway... I think the pains in my legs today have been brought on by a couple of things... 1st of all I didn't have my mid afternoon nap and when I don't have that my pains tend to be worse throughout the day. Also, I've done more walking around the house than I usually would, needless trips up and down stairs which take their toll on me without me realizing until afterwards!
I'm still on crutches/walking stick whenever I leave the house - the pains kick in worse if I walk anything over a few minutes (they're always there but they get worse the more I walk). I do think to myself "How long will I be using these walking aids for?", "When will I know when to stop using them?" "I get the impression others feel I shouldn't be using them at all!". These are the thoughts running through my head every time I pick up my walking stick or my crutch(es).
It's got to the point where I feel embarrassed when I go to pick up my stick. I instinctively try to hide it when meeting people I don't know to save any explaining or the dreaded question "What have you done to your leg?"
What is it a "friend" said to me recently? "I can't believe that the NHS pay for that". I gave him the benefit of the doubt because he'd had alcohol but if these are the thoughts of people I'm spending time with then what on earth are people I don't know going to think?! And by the way, the NHS DOES NOT fund my walking aids for me, I DO! I've never really liked him anyway...
When you're ill you can dwell on odd narrow minded comments like that but who's fault is it really? It's all down to a lack of knowledge and a lack of understanding.
Anyway, that's my rant done with for today!
See you all tomorrow x
It's 01:39am and I'm straight off to bed after I've typed this.
So how's today gone? Very well actually...
Very well as in I've stuck to my routine well and got my tasks done, fatigue wise I haven't lay down all day so I shouldn't have much of a problem getting to sleep (hopefully not anyway) though my pains aren't great today. Well, they are great depending on which way you look at it! I had to take painkillers this evening for the 1st time in a while as they got to the point where I didn't the dog to sit on my knee the pains were that bad. Also, despite not being overly physically tired, my eyes were extremely sore this evening to the point where I couldn't open them for a bit. No blurred vision either... anyone experience anything similar?
Anyway... I think the pains in my legs today have been brought on by a couple of things... 1st of all I didn't have my mid afternoon nap and when I don't have that my pains tend to be worse throughout the day. Also, I've done more walking around the house than I usually would, needless trips up and down stairs which take their toll on me without me realizing until afterwards!
I'm still on crutches/walking stick whenever I leave the house - the pains kick in worse if I walk anything over a few minutes (they're always there but they get worse the more I walk). I do think to myself "How long will I be using these walking aids for?", "When will I know when to stop using them?" "I get the impression others feel I shouldn't be using them at all!". These are the thoughts running through my head every time I pick up my walking stick or my crutch(es).
It's got to the point where I feel embarrassed when I go to pick up my stick. I instinctively try to hide it when meeting people I don't know to save any explaining or the dreaded question "What have you done to your leg?"
What is it a "friend" said to me recently? "I can't believe that the NHS pay for that". I gave him the benefit of the doubt because he'd had alcohol but if these are the thoughts of people I'm spending time with then what on earth are people I don't know going to think?! And by the way, the NHS DOES NOT fund my walking aids for me, I DO! I've never really liked him anyway...
When you're ill you can dwell on odd narrow minded comments like that but who's fault is it really? It's all down to a lack of knowledge and a lack of understanding.
Anyway, that's my rant done with for today!
See you all tomorrow x
Monday, 3 February 2014
M.E. - A wasted day: What about my daily tasks?!
Good evening...
I type this as I'm listening to the end of the Manchester City v Chelsea game on the radio!
So, as the title says... A wasted day! Sound familiar?!
I got off to a decent start, by that I mean I was out of bed before 10am with my breakfast...
The time I tend to need a lie down most is shortly after my breakfast so that's what happened...
I woke up at around 2.30pm and had my lunch at 3pm - 2 hours later than I had planned!
After then, another quick lie down followed by a bit of Prime Suspect!
I have a mild form as Asperger Syndrome meaning I am not content unless I have my daily tasks done... all when added up are doable with lots of pacing but realistically too much for someone with M.E. to do.
I like to have my meals at roughly the same time each day. I eat 5 times a day (trying to bulk up a bit after losing some weight). 1st meal starting at 10am and last meal at 11pm.
Before 2 of these lesser meals, I like to have my workout spread out into 2 parts though my body isn't always up to this.
I like to do my vocal/breathing workout, a little bit of piano and oh, I have some Theology coursework to do (this rarely gets done if I'm honest).
I'm obviously being too hard on myself but there are many emotions involved here.
Contentment when my tasks aren't done. I have many things in life I want to achieve, if I sit around all day then how am I going to progress?!
Depression - Ok, I use this term lightly here... A better phrase would be "fed up". This occurs when my tasks aren't done!
Obsession - well I can't help this, it's one of Autism's finest traits... At least I'm obsessing over the right things! Or am I?
In my situation, out the top of my head these 3 emotions are probably the most important regarding my daily tasks. If you look at the 3, they all contradict each other to an extent?
Maybe I'm fighting a losing battle but at least I'm fighting... with caution!
Most importantly I listen to my body, only my body can tell me how each day is going to pan out.
Hope you've all had a lovely day x
I type this as I'm listening to the end of the Manchester City v Chelsea game on the radio!
So, as the title says... A wasted day! Sound familiar?!
I got off to a decent start, by that I mean I was out of bed before 10am with my breakfast...
The time I tend to need a lie down most is shortly after my breakfast so that's what happened...
I woke up at around 2.30pm and had my lunch at 3pm - 2 hours later than I had planned!
After then, another quick lie down followed by a bit of Prime Suspect!
I have a mild form as Asperger Syndrome meaning I am not content unless I have my daily tasks done... all when added up are doable with lots of pacing but realistically too much for someone with M.E. to do.
I like to have my meals at roughly the same time each day. I eat 5 times a day (trying to bulk up a bit after losing some weight). 1st meal starting at 10am and last meal at 11pm.
Before 2 of these lesser meals, I like to have my workout spread out into 2 parts though my body isn't always up to this.
I like to do my vocal/breathing workout, a little bit of piano and oh, I have some Theology coursework to do (this rarely gets done if I'm honest).
I'm obviously being too hard on myself but there are many emotions involved here.
Contentment when my tasks aren't done. I have many things in life I want to achieve, if I sit around all day then how am I going to progress?!
Depression - Ok, I use this term lightly here... A better phrase would be "fed up". This occurs when my tasks aren't done!
Obsession - well I can't help this, it's one of Autism's finest traits... At least I'm obsessing over the right things! Or am I?
In my situation, out the top of my head these 3 emotions are probably the most important regarding my daily tasks. If you look at the 3, they all contradict each other to an extent?
Maybe I'm fighting a losing battle but at least I'm fighting... with caution!
Most importantly I listen to my body, only my body can tell me how each day is going to pan out.
Hope you've all had a lovely day x
Sunday, 2 February 2014
M.E. - Who ever though that attending church would be such hard work?!
Hello all...
Continuing from the title of this post... I've done nothing!
Well, that isn't completely true... I made it to church this morning, the usual problems with parking the car meant I had a few minutes walk from my car to church. To the average person, this is no biggy... but when you have M.E. you have to think about:
1. Getting up early is already a killer, typically my worst time of day.
2. Forget a shower, it doesn't even get considered before church anymore! The evening before if I have the energy.
3. Making my breakfast.
4. Brushing my teeth (this isn't including the trips up and down stairs).
5. Stress about leaving my glasses or my walking stick in the house because I'm too forgetful!
6. Over 10 minutes driving.
7. Short walk to church.
As you can see, already there are 6 things I have to take into consideration before even walking from my car to church.
By time I arrive at church, I sit upstairs as I'm late (my own fault but the earlier I'm up, the worse I feel). That's another flight of stairs taken into consideration. Now it's time to stand up for a hymn... No chance, I'm aching all over and my brain fog is so bad I don't know if I can even keep my balance.
Next up, the sermon... Now I can listen and take it all in... Wrong! If you asked me now what the sermon was about this morning, I'd have to be honest and say there's absolutely nothing I can remember. Is that because I'm not interested? Of course not, why am I there in the 1st place?! When brain fog is bad, nothing goes in and I mean NOTHING! My sensitivity to light meant I spent half of the service with my eyes closed to try and get some concentration.
After the last hymn, people often stay for refreshments. I went straight home. I feel extremely anti-social but what can I do? Stay and make myself more ill?
Should I feel guilty? The answer is NO but my answer is YES!
Why do I feel guilty? Well, to start with I'm a devout Christian, I truly don't believe I'd be here without my faith. Everyone has been great to me at church. I don't want people to think I'm anti-social!
Why shouldn't I feel guilty? Easy... because I have M.E. Is that a cop out like many see it? Absolutely not, no-one has said anything negative to me about my illness at church. Paranoia certainly kicks in, generally it's very hit and miss whether the next person you come across will be understanding of your illness or not.
Anyway... Needless to say the rest of my day has been non-productive - no naps but no production!
Here's to hoping we all get off to a good start this coming week! x
Continuing from the title of this post... I've done nothing!
Well, that isn't completely true... I made it to church this morning, the usual problems with parking the car meant I had a few minutes walk from my car to church. To the average person, this is no biggy... but when you have M.E. you have to think about:
1. Getting up early is already a killer, typically my worst time of day.
2. Forget a shower, it doesn't even get considered before church anymore! The evening before if I have the energy.
3. Making my breakfast.
4. Brushing my teeth (this isn't including the trips up and down stairs).
5. Stress about leaving my glasses or my walking stick in the house because I'm too forgetful!
6. Over 10 minutes driving.
7. Short walk to church.
As you can see, already there are 6 things I have to take into consideration before even walking from my car to church.
By time I arrive at church, I sit upstairs as I'm late (my own fault but the earlier I'm up, the worse I feel). That's another flight of stairs taken into consideration. Now it's time to stand up for a hymn... No chance, I'm aching all over and my brain fog is so bad I don't know if I can even keep my balance.
Next up, the sermon... Now I can listen and take it all in... Wrong! If you asked me now what the sermon was about this morning, I'd have to be honest and say there's absolutely nothing I can remember. Is that because I'm not interested? Of course not, why am I there in the 1st place?! When brain fog is bad, nothing goes in and I mean NOTHING! My sensitivity to light meant I spent half of the service with my eyes closed to try and get some concentration.
After the last hymn, people often stay for refreshments. I went straight home. I feel extremely anti-social but what can I do? Stay and make myself more ill?
Should I feel guilty? The answer is NO but my answer is YES!
Why do I feel guilty? Well, to start with I'm a devout Christian, I truly don't believe I'd be here without my faith. Everyone has been great to me at church. I don't want people to think I'm anti-social!
Why shouldn't I feel guilty? Easy... because I have M.E. Is that a cop out like many see it? Absolutely not, no-one has said anything negative to me about my illness at church. Paranoia certainly kicks in, generally it's very hit and miss whether the next person you come across will be understanding of your illness or not.
Anyway... Needless to say the rest of my day has been non-productive - no naps but no production!
Here's to hoping we all get off to a good start this coming week! x
Saturday, 1 February 2014
M.E. - "One step forward, four steps back!"
Hello!
A quick update before I go to bed... I managed to stay up for 12 hours without going to sleep in between though I have had a couple of lie downs!
As we speak, I'm very tired and my legs are very achy and my brain is functioning pretty slow...
I'm sure most of you will relate to me when I say this.... Regarding each day - There has never been a truer saying than "One step forward, two steps back" although in my case it tends to be "One step forward, four steps back!"
When we have a "good" day we tend to overdo it due to being so excited that we can actually function properly to an extent. In fact it's probably the adrenaline that the excitement brings on that creates payback!
It's a very difficult situation, there are things that "have" to be done despite how good or bad you might feel and especially at a young age you feel like there's so much to do that you might not get the chance to do again...
A bad habit of mines tends to be leaving all my tasks until evening! I genuinely feel unable to do most of these tasks during morning/afternoon - in fact, morning doesn't really exist for me anymore! There's a pattern that has evolved: If I get up before 10am then my fatigue/aches is worse throughout the day. Unfortunately it's not always possible to stay in bed till 10am... I really hate it if I'm honest, I was always an early bird, I love the idea of having a productive morning going into a more relaxing afternoon/evening.
Anyway - I'm rabbiting on and I need some sleep!
Church in the morning... It pains me to say this but I've got to the point where I dread church, not because I dislike it, I'm a devout Christian. The reason I have come to dread Sunday morning is because it involves me getting up earlier, socializing with bad brain fog/aches and by afternoon I have to lie down and next thing I know, it's evening!
Hope you're all having a better weekend than me! ;)
A quick update before I go to bed... I managed to stay up for 12 hours without going to sleep in between though I have had a couple of lie downs!
As we speak, I'm very tired and my legs are very achy and my brain is functioning pretty slow...
I'm sure most of you will relate to me when I say this.... Regarding each day - There has never been a truer saying than "One step forward, two steps back" although in my case it tends to be "One step forward, four steps back!"
When we have a "good" day we tend to overdo it due to being so excited that we can actually function properly to an extent. In fact it's probably the adrenaline that the excitement brings on that creates payback!
It's a very difficult situation, there are things that "have" to be done despite how good or bad you might feel and especially at a young age you feel like there's so much to do that you might not get the chance to do again...
A bad habit of mines tends to be leaving all my tasks until evening! I genuinely feel unable to do most of these tasks during morning/afternoon - in fact, morning doesn't really exist for me anymore! There's a pattern that has evolved: If I get up before 10am then my fatigue/aches is worse throughout the day. Unfortunately it's not always possible to stay in bed till 10am... I really hate it if I'm honest, I was always an early bird, I love the idea of having a productive morning going into a more relaxing afternoon/evening.
Anyway - I'm rabbiting on and I need some sleep!
Church in the morning... It pains me to say this but I've got to the point where I dread church, not because I dislike it, I'm a devout Christian. The reason I have come to dread Sunday morning is because it involves me getting up earlier, socializing with bad brain fog/aches and by afternoon I have to lie down and next thing I know, it's evening!
Hope you're all having a better weekend than me! ;)
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