So, yesterday I felt well enough to go to visit my friends, and we have a marathon game of Buzz!, which, for those of you who don't know, is a PlayStation game, where you're given questions according to which game it is (ie, Hollywood, Music, General Knowlegde) and play against each other. It was great fun, and good to get out of the house. I'm completely knackered today, but nice!
Everything is still rather crazy, I've managed to hold off making my decision about Roedean until next week, because I'm seeing the specialst on Wednesday, and I'll run it past him. Its incredably confusing, and although I know that no one who cares about me will mind what I do, I know I will!!
My parents have said if I want to drop out because it will be too much for me, I can do any home study course I want, and also do an evening course so I still have the social aspect of school, which I know I'll miss.
My joints are incredably achey today, and movement is difficult and limited. My brain feels quite fuzzy, and the tiredness is overwhelming! Had to litterally drag myself out of bed ... But, at least I did so.
Saturday, 19 July 2008
Thursday, 10 July 2008
I'm leaving, on a jet plane ... Don't know when I'll be back again ...
Wow ... Today, its like I've lost completely, any composure I had retained up till this point. Everything feels incredably bad and confusing.
September is months away, but I have under a week to make my decision. I don't know what to do, I'm so confused! I wish I could, to be honest, just run away from it all so I don't have to face it, come back in a couple of weeks, and have someone decided everything for me. Or even better, to just go somewhere completely new, and start over, not have to think about all this, or come back until I feel able to face it. I swear, being here isn't helping me at all. Surrounded by people I don't want to see, in a place I don't want to be ... Its making everything so much more complicated.
But then again, even if I had the physical strength to go anywhere, where would I go?!
I'm not normally one to run from my problems - I have learnt from experience that it is not a good idea. But I really don't know how to make everything work here, anymore.
My legs, head, and generally tiredness levels were so bad today, I couldn't go to hospital. So I missed out on the trip to Blood Brothers, and saying goodbye to Charlotte.
September is a terrifying prospect to me at the moment. I have always enjoyed study, for pleasure and for school, but recently it scares me so much, I am wondering, seriously thinking, is it worth it?
Could I bear to take another year out?
I don't want to, but can I deal with the feeling of failure if I have to drop out again instead?
I'm so tired today, just from walking round school yesterday. How on earth will I mange that five days a week - let alone going to lessons, and doing prep.?
I'm worried if I return anywhere, I'll make myself worse, and yet sitting around waiting to recover never helped anyone. If anything it makes them feel worse, because they end up doing nothing, and feeling even more low than normal. I don't think I could live with myself being like that.
So - what do I do? Do I risk making myself worse, and risk the bone-leveling sense of failure it it goes wrong? Or is it simply taking a chance, and perserveing?
Or - do I take another year? Or not return to education all together, prehaphs doing some home study courses. What is best for me?
Simple answer - I have no idea.
September is months away, but I have under a week to make my decision. I don't know what to do, I'm so confused! I wish I could, to be honest, just run away from it all so I don't have to face it, come back in a couple of weeks, and have someone decided everything for me. Or even better, to just go somewhere completely new, and start over, not have to think about all this, or come back until I feel able to face it. I swear, being here isn't helping me at all. Surrounded by people I don't want to see, in a place I don't want to be ... Its making everything so much more complicated.
But then again, even if I had the physical strength to go anywhere, where would I go?!
I'm not normally one to run from my problems - I have learnt from experience that it is not a good idea. But I really don't know how to make everything work here, anymore.
My legs, head, and generally tiredness levels were so bad today, I couldn't go to hospital. So I missed out on the trip to Blood Brothers, and saying goodbye to Charlotte.
September is a terrifying prospect to me at the moment. I have always enjoyed study, for pleasure and for school, but recently it scares me so much, I am wondering, seriously thinking, is it worth it?
Could I bear to take another year out?
I don't want to, but can I deal with the feeling of failure if I have to drop out again instead?
I'm so tired today, just from walking round school yesterday. How on earth will I mange that five days a week - let alone going to lessons, and doing prep.?
I'm worried if I return anywhere, I'll make myself worse, and yet sitting around waiting to recover never helped anyone. If anything it makes them feel worse, because they end up doing nothing, and feeling even more low than normal. I don't think I could live with myself being like that.
So - what do I do? Do I risk making myself worse, and risk the bone-leveling sense of failure it it goes wrong? Or is it simply taking a chance, and perserveing?
Or - do I take another year? Or not return to education all together, prehaphs doing some home study courses. What is best for me?
Simple answer - I have no idea.
Wednesday, 9 July 2008
Ahhhhhhhhhh!
Always feel better after I've had a scream :)
Anyway ... Had a bad couple of days, my legs have been rather shakey and I'm incredably tired. And at my meeting with the headmistress today my confusion maanged to prove itself soooo much.
What she was saying wasn't complicated.
But I couldn't follow it.
She could have just been speaking jibberish for as much as I could take in. The bits I did understand, I felt were patronising, and laced oh-so-nicely with arrogance.
Its all so very difficult, and people asking how I'm feeling, or, even better, telling me they know how I'm feeling, really doesn't help in any way, shape or form.
My head is very ... fluffy ... today, and its difficult to hold down a conversation, because I'm loosing track of what I'm saying, and forgetting my words. Its embarssing and frustrating. I've always been a walking, talking dictionary before all this, and to now not be able to string together a sentence is very trying.
Earlier, talking to two of the other girls at the hospital, we all felt the same - like we wanted to have someone elses life for a little bit, just to be able to be normal, and to remember what that is like, without all these horrible set backs.
Not that I would wish my situation on anyone. I never imagined it took effort to think, breathe, talk, chew ... Let alone walk! All basic things that most people never have to consider, and I hope never will.
It makes having to come to a decision difficult, not only because there are lots of factors to take into consideration, but because the thinking itself is hard ...
So ... A nice little rambling post, because I think its important for my difficulties to show in this as well as my "coolness".
Love and spoons.
x
Anyway ... Had a bad couple of days, my legs have been rather shakey and I'm incredably tired. And at my meeting with the headmistress today my confusion maanged to prove itself soooo much.
What she was saying wasn't complicated.
But I couldn't follow it.
She could have just been speaking jibberish for as much as I could take in. The bits I did understand, I felt were patronising, and laced oh-so-nicely with arrogance.
Its all so very difficult, and people asking how I'm feeling, or, even better, telling me they know how I'm feeling, really doesn't help in any way, shape or form.
My head is very ... fluffy ... today, and its difficult to hold down a conversation, because I'm loosing track of what I'm saying, and forgetting my words. Its embarssing and frustrating. I've always been a walking, talking dictionary before all this, and to now not be able to string together a sentence is very trying.
Earlier, talking to two of the other girls at the hospital, we all felt the same - like we wanted to have someone elses life for a little bit, just to be able to be normal, and to remember what that is like, without all these horrible set backs.
Not that I would wish my situation on anyone. I never imagined it took effort to think, breathe, talk, chew ... Let alone walk! All basic things that most people never have to consider, and I hope never will.
It makes having to come to a decision difficult, not only because there are lots of factors to take into consideration, but because the thinking itself is hard ...
So ... A nice little rambling post, because I think its important for my difficulties to show in this as well as my "coolness".
Love and spoons.
x
Saturday, 5 July 2008
I would like to be under the sea, in an octopus' garden, in the shade
That is offically one of my new favorite songs. It made me laugh so much yesterday.
Anyway, I was helping conduct interviews for CAMHS yesterday, something I did the other week as well, and I enjoy doing, as it feels Im being helpful, and doing something productive. Yesterday, Im not sure exactly what position it was to be perfectly honest, but was some kind of mangament position. There were four people who applied for the place: the first one we saw, it must be said, was the best out of the four in my opinion, and the second came in close (think there was only one points difference on the points sheets) but didn't have the same kind of flare that we all like in the first. The last person who came in to see us was rather brief, and refered to young people as "they", despite the fact there were three perfect specimins sat in front, asking the questions. So they didn't really like him.
However, it was the third person that I really wish to discuss.
Obviously, I am bound by confidentiality etc, but this person actually really upset and offended me, and it is relevent to the point of this.
I will refer to them as person A.
When A came into the room, they poured themself some water, and then sat down. We then began asking A the questions we had prepared previously. A's answers were all incredably brief, and A came across in a very curt and clipped manner. One of the questions refered to personal and professional experience of mental health.
A replied that, obviously, they had not themselves suffered from any mental health concerns, (Obviously? Right ... so, mental health is abnormal?) although of course they did sometimes get stressed and cry.
Another question asked about defining mental health. A started off well, by saying it was a spectrum. But they then messed up big time, by saying that some people JUST had low self-esteem, or JUST had depression.
JUST depression, I wanted to shout? JUST depression? That level of insensitivity I am used in encountering from people every now and again, who are either unaccustomed to mental health, or do not know me. But coming from someone who was applying for a job within the mental helth service, and who would be looking after young people, and should be therefore looking out for them, and at least aware to some degree how hard things are, I thought it was appalling. Depression has affected my life in so many ways.
I felt like A was putting us into boxes, and saying that some people are more ill than others. This is not right. A also seemed to almost pity people suffering from mental health conditions. I was genuinally upset when we were feeding back to the other interving board, and had writen some things down on the back of my score sheet to read out to them. I manage, normally, to say quite detached from these kind of things, as I think only with an objective frame can you aquire the point of view and therefore the results that you need. But listening to what A was saying was rather painful and rather shocking.
It wasn't just me taking it personally either, as we all felt the same when we compared results after A had left the room. Even the member of staff who was in with us, but not saying anything, had been shocked by her manner towards us and towards mental health.
I thought it was important to share this, because I was completly unprepared for this encounter, mainly because of the situation we were in. I think maybe, now, I will be more aware of how judgemental every single person can be, which, in some ways, is rather sad, as I am paranoid enough as it is. The fact that A was applying for the type of job they were, and still managed to maintain such an arrogant and cruel opinion, was very suprising, and very upsetting. It gives "don't judge a book by its cover" a whole new meaning.
Anyway, I was helping conduct interviews for CAMHS yesterday, something I did the other week as well, and I enjoy doing, as it feels Im being helpful, and doing something productive. Yesterday, Im not sure exactly what position it was to be perfectly honest, but was some kind of mangament position. There were four people who applied for the place: the first one we saw, it must be said, was the best out of the four in my opinion, and the second came in close (think there was only one points difference on the points sheets) but didn't have the same kind of flare that we all like in the first. The last person who came in to see us was rather brief, and refered to young people as "they", despite the fact there were three perfect specimins sat in front, asking the questions. So they didn't really like him.
However, it was the third person that I really wish to discuss.
Obviously, I am bound by confidentiality etc, but this person actually really upset and offended me, and it is relevent to the point of this.
I will refer to them as person A.
When A came into the room, they poured themself some water, and then sat down. We then began asking A the questions we had prepared previously. A's answers were all incredably brief, and A came across in a very curt and clipped manner. One of the questions refered to personal and professional experience of mental health.
A replied that, obviously, they had not themselves suffered from any mental health concerns, (Obviously? Right ... so, mental health is abnormal?) although of course they did sometimes get stressed and cry.
Another question asked about defining mental health. A started off well, by saying it was a spectrum. But they then messed up big time, by saying that some people JUST had low self-esteem, or JUST had depression.
JUST depression, I wanted to shout? JUST depression? That level of insensitivity I am used in encountering from people every now and again, who are either unaccustomed to mental health, or do not know me. But coming from someone who was applying for a job within the mental helth service, and who would be looking after young people, and should be therefore looking out for them, and at least aware to some degree how hard things are, I thought it was appalling. Depression has affected my life in so many ways.
I felt like A was putting us into boxes, and saying that some people are more ill than others. This is not right. A also seemed to almost pity people suffering from mental health conditions. I was genuinally upset when we were feeding back to the other interving board, and had writen some things down on the back of my score sheet to read out to them. I manage, normally, to say quite detached from these kind of things, as I think only with an objective frame can you aquire the point of view and therefore the results that you need. But listening to what A was saying was rather painful and rather shocking.
It wasn't just me taking it personally either, as we all felt the same when we compared results after A had left the room. Even the member of staff who was in with us, but not saying anything, had been shocked by her manner towards us and towards mental health.
I thought it was important to share this, because I was completly unprepared for this encounter, mainly because of the situation we were in. I think maybe, now, I will be more aware of how judgemental every single person can be, which, in some ways, is rather sad, as I am paranoid enough as it is. The fact that A was applying for the type of job they were, and still managed to maintain such an arrogant and cruel opinion, was very suprising, and very upsetting. It gives "don't judge a book by its cover" a whole new meaning.
Thursday, 3 July 2008
Dates and free bus travel ...
... Should have been disabled sooner.
Went into Roedean today for the first time since ... Can't remember actually, but for quite a while. Needed to clear out my study of the final bits and bobs before summer starts. They broke up today, and I managed to see a couple of people to say bye to, luckily.
I have a meeting on Wednesday to decide what I'm doing in September. I had a dream last night that told me I should go back to Roedean, but don't think many people will acknowledge a sign from God as well as I will.
I've never been more confused in my life than I have in the past weeks. I don't know what is right for me to do. I don't know what is best either, and I feel they are two seperate things. I'm having to make choices that will decide the lay of my life, possibly, and I'm not sure where each path leads, or which one is the right one for me.
I wrote some pro's / con's lists. The thing is, I can't wait to get better before I start doing things, because no-one knows when thats going to be. It could be months, it could be years, and sitting around waiting to feel better isn't going to speed up the process. Plus, being the type of person I am, I need to be active, doing things, seeing people. Its all part of my mental - and physical - recovery, I accept that now.
Its all crazy, and up in the air, and rediculously hard to even attempt to think logically sometimes. I'm grateful for all I have, and I know how much worse I could be, but it is very difficult sometimes not to wish everything was different. I do hope that doesn't sound too selfish.
My legs are very shakey this evening, and my joints all ache. I've tried using the Iprogel or whatever it is that they gave me when I hurt my neck, but it seems to make no difference really. I have found, though, that raising my legs, and keeping my knees supported, makes them more comfy.
Another M.E. sufferer recommended making Rosary, which I may well try. Its something productive to do, and I would also feel the happiness of spreading comfort into other peoples lives. For, even some Buddists I have spoken to have said that just holding Rosary beads feel comforting and protective. You don't have to be Catholic, you don't even have to believe in God, to feel the presence and support of the beads. They're lovely, and I keep a set of mine next to my pillow when I sleep, so I can reach up and touch them.
I have three sets of beads - one are plain wood, one are silver with red beads, and my third are silver with pearls. The plain wood ones I have had longest, and I tend to take everywhere with me - currently they are looped in a belt loop and tucked into my pocket. The red beads I bought from Canterbury Cathedral and are rather beautiful - they have been blessed by the Bishop also. My final set are my pride and joy; I use them when praying most of the time, even if I am not saying the Rosary, I wrap them round my hand. They were a present from my cousin, and she bought them from the Vatican, so they are incredably special to me.
I do hope this doesn't offend anyone who is reading, because it is not a religious preech. I just wished to share some of the things which i have found benifical since I have been ill.
Singing is still very theraputic. I can do that laying down as well, when I'm stuck in bed. Just singing stupid little nusery rhyemes or whatever is in my head, makes me smile. I have always felt comftable with music, and singing is like weaving a safe, smiley net around myself. I think its always good to find something like that, regardless of what it is, and, actually, regardless of if you're ill or not. Having a little more comfort in the world can never be a bad thing.
I leave this post with a little Ancient Egyptian saying I am fond of -
Live your life, and you will never die
X
Went into Roedean today for the first time since ... Can't remember actually, but for quite a while. Needed to clear out my study of the final bits and bobs before summer starts. They broke up today, and I managed to see a couple of people to say bye to, luckily.
I have a meeting on Wednesday to decide what I'm doing in September. I had a dream last night that told me I should go back to Roedean, but don't think many people will acknowledge a sign from God as well as I will.
I've never been more confused in my life than I have in the past weeks. I don't know what is right for me to do. I don't know what is best either, and I feel they are two seperate things. I'm having to make choices that will decide the lay of my life, possibly, and I'm not sure where each path leads, or which one is the right one for me.
I wrote some pro's / con's lists. The thing is, I can't wait to get better before I start doing things, because no-one knows when thats going to be. It could be months, it could be years, and sitting around waiting to feel better isn't going to speed up the process. Plus, being the type of person I am, I need to be active, doing things, seeing people. Its all part of my mental - and physical - recovery, I accept that now.
Its all crazy, and up in the air, and rediculously hard to even attempt to think logically sometimes. I'm grateful for all I have, and I know how much worse I could be, but it is very difficult sometimes not to wish everything was different. I do hope that doesn't sound too selfish.
My legs are very shakey this evening, and my joints all ache. I've tried using the Iprogel or whatever it is that they gave me when I hurt my neck, but it seems to make no difference really. I have found, though, that raising my legs, and keeping my knees supported, makes them more comfy.
Another M.E. sufferer recommended making Rosary, which I may well try. Its something productive to do, and I would also feel the happiness of spreading comfort into other peoples lives. For, even some Buddists I have spoken to have said that just holding Rosary beads feel comforting and protective. You don't have to be Catholic, you don't even have to believe in God, to feel the presence and support of the beads. They're lovely, and I keep a set of mine next to my pillow when I sleep, so I can reach up and touch them.
I have three sets of beads - one are plain wood, one are silver with red beads, and my third are silver with pearls. The plain wood ones I have had longest, and I tend to take everywhere with me - currently they are looped in a belt loop and tucked into my pocket. The red beads I bought from Canterbury Cathedral and are rather beautiful - they have been blessed by the Bishop also. My final set are my pride and joy; I use them when praying most of the time, even if I am not saying the Rosary, I wrap them round my hand. They were a present from my cousin, and she bought them from the Vatican, so they are incredably special to me.
I do hope this doesn't offend anyone who is reading, because it is not a religious preech. I just wished to share some of the things which i have found benifical since I have been ill.
Singing is still very theraputic. I can do that laying down as well, when I'm stuck in bed. Just singing stupid little nusery rhyemes or whatever is in my head, makes me smile. I have always felt comftable with music, and singing is like weaving a safe, smiley net around myself. I think its always good to find something like that, regardless of what it is, and, actually, regardless of if you're ill or not. Having a little more comfort in the world can never be a bad thing.
I leave this post with a little Ancient Egyptian saying I am fond of -
Live your life, and you will never die
X
Monday, 30 June 2008
If you can do it ducky, so can I
It gets very frustrating, being ill, regardless what you suffer from. Even just having a cold is enough to annoy anyone, and quite understandably, I think. Regardless to what degree, it restrains you, and we humans love out freedom.
I keep reminding myself - or try to, at least - how lucky I actually am. I have a home, a crazy but caring family, clothes to wear, food to eat, and, although I'm not rolling in money, I at least have enough to survive. Things, although they do feel crappy, could be so much worse. People starving in Africa blah blah blah ...
Woke up this morning, feeling rather optomistic, it must be said - my legs aren't quite as shakey as they've been for the past week, I have a semi-date thing with a dear friend of mine tonight, and I was mentioned in a letter from the concert the other week as being a "Credit to the Corps", because I had such a lovely manner and smile whilst I was in the chair. Go me!
I'm still completely shattered, but thats a normal occurence now, isn't it, really? I've been asked to go shopping with a bunch of friends from my old school, which would be nice, but I'm worried about keeping up with them. Even with my stick, I walk quite slowly. I don't think they would do it deliberatly, but I would get left behind. Feels a bit as though I'd be holding them back by going. Also, I get even more tired out than normal, in a large group of people.
See, its a delicate balance. Its a very isolating situation and condition, not only because of peoples reactions, but because of ones own feelings. I've been invited out, but know, realistically, its not a good idea. I'll be tired tomorrow, and then the next day, and then Friday. I should use my rest days for resting! But, especially when you're feeling good, like I am today, the temptation is to just go out and do everything. Its a dominio effect, and the more you do, the more dominios you topple over.
Bloody dominios, knew there was a reason I couldn't play ...
I keep reminding myself - or try to, at least - how lucky I actually am. I have a home, a crazy but caring family, clothes to wear, food to eat, and, although I'm not rolling in money, I at least have enough to survive. Things, although they do feel crappy, could be so much worse. People starving in Africa blah blah blah ...
Woke up this morning, feeling rather optomistic, it must be said - my legs aren't quite as shakey as they've been for the past week, I have a semi-date thing with a dear friend of mine tonight, and I was mentioned in a letter from the concert the other week as being a "Credit to the Corps", because I had such a lovely manner and smile whilst I was in the chair. Go me!
I'm still completely shattered, but thats a normal occurence now, isn't it, really? I've been asked to go shopping with a bunch of friends from my old school, which would be nice, but I'm worried about keeping up with them. Even with my stick, I walk quite slowly. I don't think they would do it deliberatly, but I would get left behind. Feels a bit as though I'd be holding them back by going. Also, I get even more tired out than normal, in a large group of people.
See, its a delicate balance. Its a very isolating situation and condition, not only because of peoples reactions, but because of ones own feelings. I've been invited out, but know, realistically, its not a good idea. I'll be tired tomorrow, and then the next day, and then Friday. I should use my rest days for resting! But, especially when you're feeling good, like I am today, the temptation is to just go out and do everything. Its a dominio effect, and the more you do, the more dominios you topple over.
Bloody dominios, knew there was a reason I couldn't play ...
Friday, 27 June 2008
Well well well ...
Its Friday, and nearly mid-day ... Told myself I should probably get out of bed.
Things have been kinda crazy the past couple of days. Some nasty comments, some painful thoughts ... But, on the upside, I met Dame Vera Lynn (!!!), earned £30 for helping with interviews at the hospital, and have gained a new friend. Isn't it curious the circamstances that can bring people together?
I need to decide what to do about college, and about September in general. Got some very difficult decisions to make. And it is relevent, because the ME is whats making the decisions very difficult to come to! Blasted medical conditions...
Sunday and Monday I was stuck in bed, because I over exerted myself on Friday and Saturday. Was well worth it, though, as far as I'm concered, because the Royal Marines Band were fantastic, and the wedding reception was lovely.
Things like that tire me out so much! Its crazy, thinking about how much I used to do, and how little I can do now. People not understanding, and being cruel about it, really doesn't help, and, nasty as it may sound, I really wish sometimes that they could suffer from all this, just for a week, to see how hard it really is.
I've been invited out to go to a beach party this afternoon - not only is it raining, but how on earth am I supposed to walk across the pebbles?!? Could be a very interesting day, if I decide to go.
I've been advised to send off for Disability Living Allowence. I don't know how I feel about that, really. Don't appricate being told I could be registered disabled. But at the same time, I'm not working, can't get EMA because I'm not at college, and I don't like having to ask my parents for money. So it IS sensible I guess. The form is a mission though - its like 50 pages long!!!
x x x
Things have been kinda crazy the past couple of days. Some nasty comments, some painful thoughts ... But, on the upside, I met Dame Vera Lynn (!!!), earned £30 for helping with interviews at the hospital, and have gained a new friend. Isn't it curious the circamstances that can bring people together?
I need to decide what to do about college, and about September in general. Got some very difficult decisions to make. And it is relevent, because the ME is whats making the decisions very difficult to come to! Blasted medical conditions...
Sunday and Monday I was stuck in bed, because I over exerted myself on Friday and Saturday. Was well worth it, though, as far as I'm concered, because the Royal Marines Band were fantastic, and the wedding reception was lovely.
Things like that tire me out so much! Its crazy, thinking about how much I used to do, and how little I can do now. People not understanding, and being cruel about it, really doesn't help, and, nasty as it may sound, I really wish sometimes that they could suffer from all this, just for a week, to see how hard it really is.
I've been invited out to go to a beach party this afternoon - not only is it raining, but how on earth am I supposed to walk across the pebbles?!? Could be a very interesting day, if I decide to go.
I've been advised to send off for Disability Living Allowence. I don't know how I feel about that, really. Don't appricate being told I could be registered disabled. But at the same time, I'm not working, can't get EMA because I'm not at college, and I don't like having to ask my parents for money. So it IS sensible I guess. The form is a mission though - its like 50 pages long!!!
x x x
Saturday, 21 June 2008
Hello!
Hello to anyone reading this. My name is Erika-Maye, I'm 17 years old, and live in the South of England. I teach Physical Training and Rowing, have an interest in Ancient History, and have a tendancy to burst into song on many occassions.
Oh, and I have ME.
This is here for anyone who has ME, knows someone who has ME, or simply wishes to expand their understanding of the world, if you will. It is also just to prove I am a completely normal person, regardless of a condition that I am labeled with.
The first thing I would say to anyone in regards to ME is this: It is very real. The painful thing for me, when I first went to see a doctor at the hospital, they couldn't find anything wrong, so OBVIOUSLY it was all in my head. I still struggle with that every day.
I have also been accussed of just being lazy, because I am so tired, find it difficult to read and write, and struggle to walk. It is infuriating and hurtful to hear people I consider to be friends of mine react like that. So! Here's a list of the symptoms that ME/CFS sufferers have to deal with:
Oh, and I have ME.
This is here for anyone who has ME, knows someone who has ME, or simply wishes to expand their understanding of the world, if you will. It is also just to prove I am a completely normal person, regardless of a condition that I am labeled with.
The first thing I would say to anyone in regards to ME is this: It is very real. The painful thing for me, when I first went to see a doctor at the hospital, they couldn't find anything wrong, so OBVIOUSLY it was all in my head. I still struggle with that every day.
I have also been accussed of just being lazy, because I am so tired, find it difficult to read and write, and struggle to walk. It is infuriating and hurtful to hear people I consider to be friends of mine react like that. So! Here's a list of the symptoms that ME/CFS sufferers have to deal with:
- CFS/ME is defined as a condition that involves severe fatigue that usually has a clear starting point, often after a bout of illness, and that doesn't improve after rest. It makes you less able to cope with levels of activity in your work, school and social life that were previously normal for you. CFS/ME isn't the result of over-exercising; even normal physical activity may make you feel very tired.
Common symptoms of CFS/ME include:
- Muscle and joint pain, but with no swelling
- Fatigue that lasts more than 24 hours after exercise or exertion at a level that you normally used to be able to manage without feeling tired
- Forgetfulness, memory loss, confusion, difficulty concentrating - "brain fog"
- Sleep disturbances - waking up feeling tired, or unrested, or having trouble getting to sleep
- Flu-like symptoms which don't seem to clear up
- Palpitations
- Sweating
- Feeling faint, or problems with balance
- Painful glands in your neck and / or armpits
- A sore throat
- Headaches
- Feeling sick
- Panic attacks
- Mood swings
Personally, I also have a lot of trouble reading and writing. I described it to a friend recently as that there was a wall in my brain between what I was reading and what I knew. As an example, I can read Heirogyphics, and I used to be able to translate them without needing to look anything up. Now, if I look at a page full of them, my mind will just not connect with what I know. It can be very frustrating, and has a tendancy to occur during speech and writing as well. I use the wrong word, forget I've said something, or even forget the subject of the conversation! Typing this out, I keep using the wrong word, or forget spellings.
Depression can often, understandably, occur in connection with CFS/ME. But, again, from my own experience, I would like to say that you CAN have both. I was already diagnosed with Depression when I began to suffer from ME. If they tell you that what you are going through is purely related to any mental health condition you suffer from, and you're sure its not - you do know inside yourself, if it is - stand your ground. Many people have a bad idea of anti-depressants, but they are part of the solution, and they may help you. Forget what they are called, and simply accept that as something that could help you get better, or at least come to terms with your condition in a better way.
Right, well rant and introduction over. I'm completely knacked now! Take it easy everyone
x x x
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