Tuesday, 16 April 2013
Blog Fog
This is an apology. I might not be blogging for a while, or at least not with the clarity and fluency that I usually am. My health has taken a turn for the worst and my brain-fog is wreaking havoc on my creativity. Stringing sentences together is exhausting and I've retyped this three times already. I feel like a huge let down for you guys because I really enjoy writing it's just too much at the moment. I'm going to miss you guys, but I know you'll still be here when I get back. Until then, take care. I hope you're all as well as possible. Peace out! Alice <3
© Alice Daley 2013
Sunday, 14 April 2013
It's kind of a funny story
So I watched a film this evening that really made me feel things that I haven't felt before. Well at least not for a long time. The film 'It's kind of a funny story,' tells the story of a depressed sixteen year old who admits himself into a psychiatric ward after having serious thoughts of suicide. Our protagonist (I learnt a new word today and felt the need to use it) Craig is admitted to the adult ward as the teen ward is conveniently for the plot line undergoing renovation. Surrounded by mentally ill patients who seem to roam free about the ward unless they are confined to bed like Muqtada, he is befriended by Bobby; someone who we never find out much about, but who is apparently depressed and has fits of rage as well. He also meets Noelle, a serious self harmer, who is witty as well as beautiful, who Craig obviously finds himself drawn to and falls in love with in a soppy scene on the roof of the hospital. (Nobody tried to kill themselves, though all through that scene I was waiting for one of them to attempt it...) Bobby, Noelle and the other patients work together to make Craig see that he can face life again, and he discovers new talents as an artist. By the end of the 101 minute film, everyone seems to be happy and dancing again and Craig starts his new life with a fresh outlook and a bright future along with his glistening new relationship with Noelle. Sickening, isn't it? All through the film I was feeling angry about what an unrealistic portrayal of mental illness it was. I know that's it's not the point, it was a comedy after all; a feel good film. But I was left with a bitter taste in my mouth, because unless you are living in a movie set, life really isn't like that. Depression is a long relentless slog, akin to towing a articulated lorry in a thunderstorm with a barbed wire harness around your waist and two broken legs. (Yes, I am getting better at analogies thanks to my Jacob whose rants are full of them!)
It isn't attention seeking, or 'just feeling a bit down,' it isn't romantic or kind or anything good. It is a medical illness, the same as diabetes or cancer or anything, and can be as debilitating as those.
Depression isn't something that should be trivialised and made light of. Neither is self harm. Self harm, even in the 'attention seeking,' cases is a cry for help. Though not always consciously. I've self harmed for a good many years now and it's an addiction I am still learning to control. Personally I didn't self harm to cry for help, mine stemmed from a sense of needing to be punished whenever I wasn't good enough, which was all the time. I won't go into what caused this inferiority complex; It'll make a good post somewhere along the line. But there it was, and I loathed myself. I still do to a certain extent, although now I can appreciate that not everyone else hates me, even if I don't understand why. I scratched myself once with a hair clip, and it felt so right I just did it over and over until my arm was covered in scratches. It got worse and worse and I've got some pretty bad scars but the pain never left, it just grew stronger.
I just want to tell you, if you've cut before but especially if you've never cut before but thought about it, please don't. You are beautiful and precious and really, really, really not as bad as you think. And even if you are, a horrible loathsome person like me, cutting will make you feel worse. You get a quick fix, then the pain comes back but worse, and the next time you have to cut deeper because you feel so numb inside. Please, email me. Before you make that first burn, scratch or cut, email me. My email address is daleymaid@gmail.com and I will try to reply as soon as I can. You don't have to suffer this alone. I am here for each and every one of you. I love you.
Peace
Alice
xxxx
© Alice Daley 2013
Friday, 12 April 2013
An inspiration?
A lot of people have been telling me that they find my posts inspirational. I've received some envy from fellow writers that my statistics are doing quite well; nearly 3000 views now. I am really pleased for myself, of course, but I can't help but feel a bit guilty that others haven't shared in the pleasure of success. There are so many good writers out there, many of them much better than me, but I suppose I write things that people want to hear. I make people feel safe and good about themselves, I tell them it's okay to hurt and cry. Reading this blog is like getting a hug, it's reassuring and comforting; at least I like to think so, I certainly get comfort out of writing it.
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Others' writing may be more specialised, about certain topics or just a different style. But it's good quality writing, it's good to read and should get just as much traffic as my foggy ramblings. I don't feel justified in having this much success because I'm really nothing special. I just speak from my experiences and from my heart. I'm not a counsellor, or a mental health professional, but I've survived a lot of pain, and I have a lot of empathy; sometimes too much. I can feel other people's pain, sometimes even more than they can. Suffering makes me hurt and I feel so powerless to help most of the time.
But I'm going to keep writing if it helps people, because that makes it all worthwhile. If I can get through to one lonely, broken or unhappy person, and give them hope, then my work here is done. Helping people is all I want to do, but at the moment I can barely help myself. I feel like I'm falling again, back into the black slimy pit of depression. Depression is evil, and for me it's sort of worse than having M.E. I know a lot of M.E. sufferers do get depression as a result of their illness, after all becoming so severely ill can trigger a grieving process in itself. The loss of independence and health is so extreme, and for post people who get M.E. they are highly independent and hard-working people, I certainly was, and M.E. robs you of that.
Part of my problem, however, is that before I was diagnosed as having M.E. I was diagnosed as having depression. Now I'm not sure whether this was a correct or incorrect diagnosis, but whichever it was, it really didn't help when it came to getting help for my M.E. which is completely separate from any depression I may or may not have had. Another problem here is that clinical depression and M.E. can have a lot of the same symptoms, but the treatment is the complete opposite. For someone with clinical depression, getting up and going out for a walk makes them feel much better. But for someone with M.E. that would make them feel a lot more ill and fatigued.
That was partly when I noticed the change, aside from the riding accident and the Glandular fever type virus, was that my usual 'get up and go' attitude was making me worse instead of better like it usually did. Before M.E. struck, a walk to the park would lift my mood and my well-being, a ride through the woods tenfold. But after that, I tried to go back to the gym, I tried to exercise, get out of the house, do all the right things for depression. It made me so ill, but I kept going. I didn't want to be weak and I didn't want to let anyone down. It caught up with me in the end, I began having falls and faints, and just feeling terrible. I started having to take days off and it seems so quick that I've ended up pretty much bed-bound and very reliant on others to care for even my basic needs.
But with this rapid decline in physical health, my mental health has suffered a great deal too. I had to stop attending counselling because I was housebound, and still haven't found a counsellor who will come out to me. I've had to spend a lot of time alone, and with the current danger of me being alone, I've become very anxious. My separation anxiety from my boyfriend is doing neither of us any good and I'm slipping back into depression again. I've tried to fight it because the moment you admit to any GP treating you for M.E. that you're feeling a bit down they instantly label you psychosomatic and ship you off to the looney bin. (Well not quite that extreme but most doctors seem to think that a neurological illness like M.E. cannot coexist with a mental illness like depression, when in fact the former can lead to the latter.)
I want to get my physical health sorted first, I have a severe, chronic, neurological illness that needs proper treatment; none of this silly CBT/GET nonsense. But if I mention the depression and anxiety to the doctor, he'll make that the priority and forget about my physical problems. It's such a battle getting treatment for M.E. as it is, so I refuse to give the Dr a foothold by telling him I'm feeling increasingly lost in my own head, like I'm at the bottom of a dark pit, and that any time I am alone I just cry for hours with anxiety and despair. I will sort out seeing the counsellor again, if they can make it out to see me. I have nothing against counsellors as long as they aren't CBT counsellors.
I do not respond to CBT as it is too aggressive. I am very very fragile and don't react well to being told what I'm feeling is wrong. When I had CBT before, I was treated awfully and it made me much more unstable. I went in depressed and left suicidal. I vowed then to never trust CBT again and I never will. There are other types of counselling though, and they've helped me in the past so I'm willing to attempt it again, health allowing.
I'm sorry this post hasn't been my usual fluffy self, I guess I just wanted to say that the reason I write such 'inspirational,' stuff is because like all of you, I'm going through a lot at the moment. I know what you're feeling and I'm here for you, because I love you, and I don't want to see you hurting.
*big hugs*
Alice xxxx
© Alice Daley 2013
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But I'm going to keep writing if it helps people, because that makes it all worthwhile. If I can get through to one lonely, broken or unhappy person, and give them hope, then my work here is done. Helping people is all I want to do, but at the moment I can barely help myself. I feel like I'm falling again, back into the black slimy pit of depression. Depression is evil, and for me it's sort of worse than having M.E. I know a lot of M.E. sufferers do get depression as a result of their illness, after all becoming so severely ill can trigger a grieving process in itself. The loss of independence and health is so extreme, and for post people who get M.E. they are highly independent and hard-working people, I certainly was, and M.E. robs you of that.
Part of my problem, however, is that before I was diagnosed as having M.E. I was diagnosed as having depression. Now I'm not sure whether this was a correct or incorrect diagnosis, but whichever it was, it really didn't help when it came to getting help for my M.E. which is completely separate from any depression I may or may not have had. Another problem here is that clinical depression and M.E. can have a lot of the same symptoms, but the treatment is the complete opposite. For someone with clinical depression, getting up and going out for a walk makes them feel much better. But for someone with M.E. that would make them feel a lot more ill and fatigued.
That was partly when I noticed the change, aside from the riding accident and the Glandular fever type virus, was that my usual 'get up and go' attitude was making me worse instead of better like it usually did. Before M.E. struck, a walk to the park would lift my mood and my well-being, a ride through the woods tenfold. But after that, I tried to go back to the gym, I tried to exercise, get out of the house, do all the right things for depression. It made me so ill, but I kept going. I didn't want to be weak and I didn't want to let anyone down. It caught up with me in the end, I began having falls and faints, and just feeling terrible. I started having to take days off and it seems so quick that I've ended up pretty much bed-bound and very reliant on others to care for even my basic needs.
But with this rapid decline in physical health, my mental health has suffered a great deal too. I had to stop attending counselling because I was housebound, and still haven't found a counsellor who will come out to me. I've had to spend a lot of time alone, and with the current danger of me being alone, I've become very anxious. My separation anxiety from my boyfriend is doing neither of us any good and I'm slipping back into depression again. I've tried to fight it because the moment you admit to any GP treating you for M.E. that you're feeling a bit down they instantly label you psychosomatic and ship you off to the looney bin. (Well not quite that extreme but most doctors seem to think that a neurological illness like M.E. cannot coexist with a mental illness like depression, when in fact the former can lead to the latter.)
I want to get my physical health sorted first, I have a severe, chronic, neurological illness that needs proper treatment; none of this silly CBT/GET nonsense. But if I mention the depression and anxiety to the doctor, he'll make that the priority and forget about my physical problems. It's such a battle getting treatment for M.E. as it is, so I refuse to give the Dr a foothold by telling him I'm feeling increasingly lost in my own head, like I'm at the bottom of a dark pit, and that any time I am alone I just cry for hours with anxiety and despair. I will sort out seeing the counsellor again, if they can make it out to see me. I have nothing against counsellors as long as they aren't CBT counsellors.
I do not respond to CBT as it is too aggressive. I am very very fragile and don't react well to being told what I'm feeling is wrong. When I had CBT before, I was treated awfully and it made me much more unstable. I went in depressed and left suicidal. I vowed then to never trust CBT again and I never will. There are other types of counselling though, and they've helped me in the past so I'm willing to attempt it again, health allowing.
I'm sorry this post hasn't been my usual fluffy self, I guess I just wanted to say that the reason I write such 'inspirational,' stuff is because like all of you, I'm going through a lot at the moment. I know what you're feeling and I'm here for you, because I love you, and I don't want to see you hurting.
*big hugs*
Alice xxxx
© Alice Daley 2013
Wibbly wobbly timey wimey stuff
Strangely enough this post is kind of about Dr Who. I'd never really watched much Dr Who as a kid, it just wasn't something I was in to- didn't watch much television full stop really. But with the new series starting and all, and due to the fact that the full set of the new (Christopher Eccleston onwards) series' are on my house-mate's LoveFilm, as well as my boyfriend being a fan, I decided to start watching them. So far I've really enjoyed them, skipping the few scarier episodes because I'm a wimp, I've watched up until the first few in David Tennant's first series.
I'm torn between Eccleston and Tennant really, but they are all so different. My problem with Matt Smith isn't Moffat's writing, though that does irritate me; it's his apparent 'randomness,' which isn't all that random at all. He's a bit too awkward and excitable for my liking, but everybody has different preferences I guess. However I'm here to talk about time, more than anything.
We all have a past, a present and a future; that's kind of how life works. There's a quote that I first heard in Kung Fu Panda (though I don't think that's where it came from originally) which I really like:
And that brings me on the the present. Right now, I am laying on a sofa bed in my onesie, my eyes are aching and my nose is running; I've been sobbing for most of the evening. I'm exhausted but not sleepy, and sleep will not come. I know that when I fall asleep, I will have a nightmare, but right now I'm happy to be awake. I'm trying to write this and write something worthwhile for you all, at the same time I'm feeling guilty because my boyfriend's blog hasn't got nearly as much traffic as mine, despite the fact he is a much better writer than me and deserves more fame than I do. Speaking of which, you should really go check out his blog! It's great! Really funny and topical rants about the modern world: Old Man Wolfe Rants
So, we can't dwell on the past, and it's pointless to worry about the future. Make the most of your present, treasure it. Don't waste a moment, because life is precious, and you only get one shot at it; you aren't a time lord. Treat each encounter with those you love like you'll never see them again. Don't waste time on petty arguments and feuds, never hurt those you love, and forgive quickly. Life is short, too short for some, and your legacy will be in your character. Not how much you earned or what car you drove or how cool you looked, your nature; kindness, compassion, love.
Peace out
Alice xxxx
© Alice Daley 2013
I'm torn between Eccleston and Tennant really, but they are all so different. My problem with Matt Smith isn't Moffat's writing, though that does irritate me; it's his apparent 'randomness,' which isn't all that random at all. He's a bit too awkward and excitable for my liking, but everybody has different preferences I guess. However I'm here to talk about time, more than anything.
We all have a past, a present and a future; that's kind of how life works. There's a quote that I first heard in Kung Fu Panda (though I don't think that's where it came from originally) which I really like:
'You are too concerned with what was, and what will be. There's a saying; yesterday is history, tomorrow is a mystery but today is a gift, that is why it is called the present.'
My past is full of hurt and scars. So many things I've only told a handful of people, so many things I've told nobody. My past makes me sad and scared and hurt inside. But no matter how torn up it makes me feel, I can't go back and change it. Yes, it hurt at the time and the memories live on, I still get flashbacks and nightmares, and my past has a lot to do with my non-epileptic attacks, and my anxiety too. But there's nothing I can do to make it better, it won't go away and I have to learn to live with that. And that's okay, or at least it will be, with time. My friend Chloe is currently working through her own past, and documenting her progress in a really inspiring blog: Healing My Hidden Life
My future in uncertain to say the least. This illness can last between a year and lifelong. I'm getting worse every day instead of better, I'm going to finish college this year with 2 AS levels and 2 A levels, all of which are terrible grades because I've missed over half of this year and some of last year too. I am able to resit the year in September but what if I'm still too ill? I can't go back to college aged 30 can I? I want to get married, have children, have a career and a future, but at the moment I can't see past the end of the bed; literally. I feel like a big ball and chain around my boyfriend's leg, I'm holding him back from his full potential, and that's not okay with me. People keep saying 'it'll get better,' 'this isn't forever,' and the like, but the truth is, it might not. For some it does, but it's the uncertainty that's the hardest. In some people, it lasts 6 months, and others have died from it.
I'm scared. I'm scared that I won't get better, and that because of the NHS's approach to treating M.E. (basically non-existent) that it'll take my whole future away from me. I don't want a lot, I don't want to be rich or famous or successful. The only thing that I want is to be independent, and to have a family of my own. I just wish a doctor somewhere could give me a piece of paper telling me how long it's going to last, and what I can do to get better. But M.E. isn't like that, it's different from case to case. I just feel like I've put my life on hold until I'm better, and that really sucks. I feel so lost at the moment, hearing all my friends plans for the coming year makes me feel so little. I'm reminded of how I felt when my big sisters left for university, left behind, never to 'grow up' like them. I've got my opportunity now, I'm an adult and yet I've been reduced to almost infancy by this wretched illness. I want my future and I want my health. It's not fair. But I can't worry about the future, as it's not happened yet. It says in the bible:
'Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.' Matthew 6:34
And that brings me on the the present. Right now, I am laying on a sofa bed in my onesie, my eyes are aching and my nose is running; I've been sobbing for most of the evening. I'm exhausted but not sleepy, and sleep will not come. I know that when I fall asleep, I will have a nightmare, but right now I'm happy to be awake. I'm trying to write this and write something worthwhile for you all, at the same time I'm feeling guilty because my boyfriend's blog hasn't got nearly as much traffic as mine, despite the fact he is a much better writer than me and deserves more fame than I do. Speaking of which, you should really go check out his blog! It's great! Really funny and topical rants about the modern world: Old Man Wolfe Rants
So, we can't dwell on the past, and it's pointless to worry about the future. Make the most of your present, treasure it. Don't waste a moment, because life is precious, and you only get one shot at it; you aren't a time lord. Treat each encounter with those you love like you'll never see them again. Don't waste time on petty arguments and feuds, never hurt those you love, and forgive quickly. Life is short, too short for some, and your legacy will be in your character. Not how much you earned or what car you drove or how cool you looked, your nature; kindness, compassion, love.
Peace out
Alice xxxx
© Alice Daley 2013
Saturday, 6 April 2013
Some of my scarier symptoms
Hello again,
Today I'd like to talk to you about some of the really scary bits of having severe M.E. These symptoms come and go, but often with no warning and can fluctuate in severity. I can find them quite unsettling, but I know that they'll go away again with time, and are usually a sign of me overdoing it.
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The first of these is paralysis. This is a fairly recent addition to the family of ailments that seem to plague my body, but in the short time it's been around, it's already made a bad impression. Most of the time it's just my legs but sometimes it can be my whole body, speech included. First I get pins and needles and shooting pains. The pain radiates from my neck and spine, down each of my limbs, leaving a trail of tingling as it goes. It doesn't leave, just gets worse; and as it worsens I lose the feeling and the movement there. I don't like it one bit, but it passes, eventually. Sometimes it lasts a few minutes, other times it can take hours. At times it comes on very suddenly with a sudden pain in my head, stomach or chest.
Speaking of chest pains, this is my second scary symptom. I am asthmatic so I have to be careful about these; have to decipher if it's my M.E. or my asthma and take the appropriate action. However, it can be awfully unnerving, I can get short of breath and sometimes it feels like my heart is beating oddly- I think that's called palpitations? I try not to let them worry me, as anxiety obviously makes all the pain worse. It does pass, eventually, but when it's happening it isn't pleasant. I find that breathing exercises can help to settle it a bit, though not all together. Very occasionally, they can result in me collapsing, but thankfully not too often.
Collapse, that's another one. Sometimes I just get too weak to sit up and just flop sideways onto the bed or off whatever I'm sitting on. I also get acute dizzy and faint spells if I have to sit up for too long, or if I change position too quickly. It's kind of like being travel sick I suppose but about a hundred times worse, as if the vehicle making you travel sick was also spinning and travelling across the hyperspace barrier. Horizontal is the best position for me though sometimes I'm not sure where 'horizontal' is! Today the dizziness has been particularly bad, though that could just be that I've had a very long day and was sick this morning. Some people with M.E. suffer with postural orthostatic tachycardia syndrome, or POTS; symptoms of which include faintness, dizziness and fatigue. I'm unsure whether this could be causing my fainting spells, as the symptoms do fit quite well.
One thing I really struggle with, is knowing when a symptom is new, or just an M.E. flare up. This can be really difficult with accidents or injuries, as some symptoms that suggest more serious injury, could just be M.E. symptoms. For example, severe headache, brain fog (confusion), nausea and dizziness are all symptoms of a head injury- however, they are also normal symptoms for me. Being able to tell the difference is sometimes very tricky, though I suppose it's better to be safe than sorry.
Take care friends, Alice xxx
© Alice Daley 2013
Today I'd like to talk to you about some of the really scary bits of having severe M.E. These symptoms come and go, but often with no warning and can fluctuate in severity. I can find them quite unsettling, but I know that they'll go away again with time, and are usually a sign of me overdoing it.
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The first of these is paralysis. This is a fairly recent addition to the family of ailments that seem to plague my body, but in the short time it's been around, it's already made a bad impression. Most of the time it's just my legs but sometimes it can be my whole body, speech included. First I get pins and needles and shooting pains. The pain radiates from my neck and spine, down each of my limbs, leaving a trail of tingling as it goes. It doesn't leave, just gets worse; and as it worsens I lose the feeling and the movement there. I don't like it one bit, but it passes, eventually. Sometimes it lasts a few minutes, other times it can take hours. At times it comes on very suddenly with a sudden pain in my head, stomach or chest.
Speaking of chest pains, this is my second scary symptom. I am asthmatic so I have to be careful about these; have to decipher if it's my M.E. or my asthma and take the appropriate action. However, it can be awfully unnerving, I can get short of breath and sometimes it feels like my heart is beating oddly- I think that's called palpitations? I try not to let them worry me, as anxiety obviously makes all the pain worse. It does pass, eventually, but when it's happening it isn't pleasant. I find that breathing exercises can help to settle it a bit, though not all together. Very occasionally, they can result in me collapsing, but thankfully not too often.
Collapse, that's another one. Sometimes I just get too weak to sit up and just flop sideways onto the bed or off whatever I'm sitting on. I also get acute dizzy and faint spells if I have to sit up for too long, or if I change position too quickly. It's kind of like being travel sick I suppose but about a hundred times worse, as if the vehicle making you travel sick was also spinning and travelling across the hyperspace barrier. Horizontal is the best position for me though sometimes I'm not sure where 'horizontal' is! Today the dizziness has been particularly bad, though that could just be that I've had a very long day and was sick this morning. Some people with M.E. suffer with postural orthostatic tachycardia syndrome, or POTS; symptoms of which include faintness, dizziness and fatigue. I'm unsure whether this could be causing my fainting spells, as the symptoms do fit quite well.
One thing I really struggle with, is knowing when a symptom is new, or just an M.E. flare up. This can be really difficult with accidents or injuries, as some symptoms that suggest more serious injury, could just be M.E. symptoms. For example, severe headache, brain fog (confusion), nausea and dizziness are all symptoms of a head injury- however, they are also normal symptoms for me. Being able to tell the difference is sometimes very tricky, though I suppose it's better to be safe than sorry.
Take care friends, Alice xxx
© Alice Daley 2013
Thursday, 4 April 2013
The light at the end of the Tunnel
I think life trials can be a bit like that, like walking along a narrow bumpy path through a dark, damp tunnel. Sometimes there are scary noises, sometimes the dank water drips right down your neck. And at times, it can be pitch black. You feel like it's never going to end, and you freeze; feet stuck to the ground, can't go forwards, can't go back. Can't see the light because you're so scared you have your eyes closed. Open your eyes. Focus on that tiny splinter of light, far away in the distance. Get up, stand tall, and just take one step. The path will hold under your feet, and if you keep putting one foot forward, you'll get there. The light will get brighter and bigger as you walk, closer and closer to the exit. The handrail; your friends and family, those who support you, will guide you forward, making sure you are secure and safe. And when you take that glorious step out into the sunshine, treasure it. Let it bathe you in its warmth, it's beautiful warmth. You might want to run or dance or sing in the light, because you've been stuck in the dark for so long. And you never know, around the next bend there might be another tunnel, but you know you can get through it, because you've been through the last one. You can turn back, and shout to the others still in the tunnel, that it's okay because there's a way through, and they'll get through too.
So, have hope, have faith, there is light at the end of the tunnel.
© Alice Daley 2013
Tuesday, 2 April 2013
A Band-aid on a Bullet Wound (part one)
Hello Friends,
I'm here today to talk about the approach of the NHS on M.E. patients. I personally think that it's utterly ridiculous, inadequate and it makes me really angry. I went to the doctors today, and although he was more helpful, and finally agrees that I have a physical illness with some mental/emotional symptoms rather than a mental illness with physical symptoms. Which I consider a massive breakthrough. He wants to speak to the 'Enablement Team' where my occupational therapist is based, as she has a better picture of my condition than he does, which is fair enough. He is going to wait before trying any new pain killers as he thinks 'pain-modifiers' may be more effective.
The term 'chronic fatigue syndrome' is the first thing I want to flag up. This umbrella term for several illnesses where persistent fatigue is one of (but nowhere near the only) the symptoms. Since the term came into common use by medical professionals, people with myalgic encephalomyelitis (M.E.) have been mistreated, misdiagnosed and even tortured in some cases, because of the apparent confusion between the terms M.E. and CFS. The problem with the term CFS is that it's like calling Alzheimer's 'chronic forgetfulness syndrome,' it's naming an illness, or group of illnesses after one of it's main symptoms, not taking into account the organic properties and many other, disabling symptoms. M.E. is a distinct neurological illness, rather than a medically unexplained fatigue state; as is portrayed by the term CFS. This bogus category doesn't just affect those with M.E. though; anyone who's had the misdiagnosis of CFS will be mistreated; people with MS, cancer, and many other illnesses where fatigue is one of the predominant symptoms. M.E. is to fatigue, what a nuclear bomb is to a match.
When someone with M.E. is misdiagnosed as having CFS, the treatment (or lack thereof) they receive is inappropriate and makes them a lot more ill, in some cases causing death. The two main treatments for CFS in this country are graded exercise therapy and cognitive behavioural therapy. Graded exercise therapy focuses on increasing the activity one does over time, regardless of your relapses, M.E. symptoms and limitations. Cognitive behavioural therapy focuses on changing your thought processes in order to 'break the negative cycle.' The problem with CBT is that it gives the impression that M.E. is a psychiatric illness, and that patients need to 'snap out of it.' I will write a more detailed blog post about how damaging CBT is to M.E. patients.
I am too fatigued to finish this post, but I will write a part two when I have the energy.
Love, Alice xxxx
With thanks to The Hummingbird foundation for M.E. and Giles Meehan, their videos helped me write this.
© Alice Daley 2013
The term 'chronic fatigue syndrome' is the first thing I want to flag up. This umbrella term for several illnesses where persistent fatigue is one of (but nowhere near the only) the symptoms. Since the term came into common use by medical professionals, people with myalgic encephalomyelitis (M.E.) have been mistreated, misdiagnosed and even tortured in some cases, because of the apparent confusion between the terms M.E. and CFS. The problem with the term CFS is that it's like calling Alzheimer's 'chronic forgetfulness syndrome,' it's naming an illness, or group of illnesses after one of it's main symptoms, not taking into account the organic properties and many other, disabling symptoms. M.E. is a distinct neurological illness, rather than a medically unexplained fatigue state; as is portrayed by the term CFS. This bogus category doesn't just affect those with M.E. though; anyone who's had the misdiagnosis of CFS will be mistreated; people with MS, cancer, and many other illnesses where fatigue is one of the predominant symptoms. M.E. is to fatigue, what a nuclear bomb is to a match.
When someone with M.E. is misdiagnosed as having CFS, the treatment (or lack thereof) they receive is inappropriate and makes them a lot more ill, in some cases causing death. The two main treatments for CFS in this country are graded exercise therapy and cognitive behavioural therapy. Graded exercise therapy focuses on increasing the activity one does over time, regardless of your relapses, M.E. symptoms and limitations. Cognitive behavioural therapy focuses on changing your thought processes in order to 'break the negative cycle.' The problem with CBT is that it gives the impression that M.E. is a psychiatric illness, and that patients need to 'snap out of it.' I will write a more detailed blog post about how damaging CBT is to M.E. patients.
I am too fatigued to finish this post, but I will write a part two when I have the energy.
Love, Alice xxxx
With thanks to The Hummingbird foundation for M.E. and Giles Meehan, their videos helped me write this.
© Alice Daley 2013
Saturday, 30 March 2013
Fame and Identity (oh my gosh 1500 views!)
Wow guys!
So I'm averaging out at about 100 views per day, which is crazy! I want to say a great big thank you for all your support and positive feedback, for someone with such low opinions of herself, this has given me a much needed confidence boost :) I hope to be writing more posts, and will try for a new one every/every other day, health dependant. However, for now my well of ideas has run dry. If you've got any ideas of your own I'd be more than happy to write about them, be that a symptom you need some help with or just an aspect of life that's getting you down. I'm here to provide personal, positive insight to all of you out there who are battling this condition, or just need a bit of cheering up, or just want to know how I'm getting on.
Today I want to talk to you about the concept of an 'M.E. identity. I borrowed this from my friend Bree, and she explains her pixie 'Tiffany' really well in this video:
(Yes I like using videos now, deal with it.)
And I decided to create my own M.E. identity. In an earlier post, 'Disability is like having a Gorilla in your house,' I referred to any disability or chronic illness as having a unpredictable and awkward pet gorilla to look after 24/7.
I wasn't sure if I could draw gorillas, though I had a pretty good go. I named her Glenda, and she is my M.E. identity, I think. I don't have the right colours to colour her in yet, but when I can afford it, I'll buy some more felt tips and bring her to life.
So I'm averaging out at about 100 views per day, which is crazy! I want to say a great big thank you for all your support and positive feedback, for someone with such low opinions of herself, this has given me a much needed confidence boost :) I hope to be writing more posts, and will try for a new one every/every other day, health dependant. However, for now my well of ideas has run dry. If you've got any ideas of your own I'd be more than happy to write about them, be that a symptom you need some help with or just an aspect of life that's getting you down. I'm here to provide personal, positive insight to all of you out there who are battling this condition, or just need a bit of cheering up, or just want to know how I'm getting on.
Today I want to talk to you about the concept of an 'M.E. identity. I borrowed this from my friend Bree, and she explains her pixie 'Tiffany' really well in this video:
And I decided to create my own M.E. identity. In an earlier post, 'Disability is like having a Gorilla in your house,' I referred to any disability or chronic illness as having a unpredictable and awkward pet gorilla to look after 24/7.
I wasn't sure if I could draw gorillas, though I had a pretty good go. I named her Glenda, and she is my M.E. identity, I think. I don't have the right colours to colour her in yet, but when I can afford it, I'll buy some more felt tips and bring her to life.
Before I created Glenda, however, I drew Wilbur the whale. He turned out pretty good and was my original M.E. identity. I might still use him, or switch between the two, or use Glenda for my physical symptoms and Wilbur for my mental/emotional symptoms. I may not use either of them, they may become characters in a children's book I plan to write. Who knows? All I know is that I've missed being able to draw, and I'm happy I've been able to do some more drawing recently.
"Wilbur will now be who I blame for any awkward situations arising from my various illnesses. Wilbur is selfish, controlling and generally a pain in the bum. Wilbur the whale was originally going to be Glenda the gorilla, but I can't draw gorillas, and whales are just as inconvenient to have sleeping on top of you etc."
So, I'd encourage you, if you can, to make your own M.E. identity, and blame them for all the inconvenience your illness causes. It's a fun activity to do, and if you 'can't draw,' there are plenty of colouring in pages online you could print off and use!
Peace out,
Alice xxxx© Alice Daley 2013
Peace out,
Alice xxxx© Alice Daley 2013
Friday, 29 March 2013
The notion of 'I'm fine.'
Hello friends,
Now I don't know about you, but I find myself using the phrase 'I'm fine,' at least ten times a day, sometimes more. Not quite as often as I use the word 'sorry,' but still pretty often. This little phrase can get you into, or out of, a lot of trouble with friends, family, spouses, doctors, colleges and just about any one else. They are effective yet dangerous.
The first problem with these two little words, is that they can have so many different meanings. These meanings can vary depending on whether you're male or female, young or old, and what sort of mood you're in. I'm going to stereotype now so do forgive me...
For the average teenage girl who's just gone through a breakup, 'I'm fine,' probably means 'I'm falling apart inside but I don't want to talk about it. Hold me, bring me chocolate and fluffy things.'
For the average middle aged bloke, 'I'm fine,' means 'I'm fine.' As far as I'm concerned men are much less complex than women, they generally mean what they say.
Other meanings of 'I'm fine,' could include:
The second problem here, is that we expect other, flawed human beings, to decode our tone and body language, understand exactly which 'I'm fine,' we mean, and act accordingly. Then when they don't, because guess what? Your best-friend/mother/boyfriend/milkman/dog cannot read your mind, and may, from time to time get things wrong, you get upset because 'NOBODY UNDERSTANDS ME!!'
You're right. Nobody can understand you, because they aren't you. They've not lived your life, felt your feelings, experienced all the things you have. They have a different genetic make up to you, different fingerprints, different families and friends. You will never fully understand them, and they will never fully understand you. You might get close, or so you think, you'll learn each other's thought patterns and mannerisms, but let's be honest, none of us truly understands ourselves, so how can we expect someone else to?
Now I'm Christian, and although I don't believe that waving it in other people's faces does any good, it is an important part of my life. So if you're not 'religious' feel free to scroll on by, but I want to share with you something that I believe is beautiful. I have one friend, who understands me 100%, better than I could understand myself. They know each and every thought before it leaves my neurons, they know the number of cells in my body, and have lived life beside and inside me. They feel my pain as deeply as I do, know my deepest secrets. They are always there, never let me down, never leave my side. That person is Jesus Christ, who died this very day, nearly 2000 years ago, to save us from ourselves. He is my best friend.
This song describes it perfectly:
Well I appear to have gone off on a tangent, but an important one at that. If you want to know more about what I believe, get in touch with me; I'd be more than happy to share with you.
Anyhow, the point is, that we can't go around wearing the mask of 'I'm fine,' expecting everyone to see behind the mask. Maybe we want people to see, maybe we don't, and regardless of what we want, some people will see, and others won't. Of those that see, some won't respond in case you didn't want them to see, and some will worry endlessly, fussing over you, trying to make it okay again when really there's nothing they can do. Treasure the people with insight, those that see behind the mask, those that knock the walls down or climb over them.
And if you see someone struggling behind a brave face, ask them if there's anything you can do, don't force your presence, some people just want to be left alone, but let them know you're here for them and although you can't understand what they're going through, you know how much life can hurt, and you want to support them no matter what. Don't be disheartened if they push you away, they don't mean to offend, give them some space but don't abandon them. There are some people in this life who you may have to close the door on, for your own sake or the sake of your loved ones. That's okay, I promise you, nobody has just one person they can turn to, and you must always protect yourself first.
When you ask someone 'how are you?' try to be genuine and not superficial; if you have the time to ask how they really are, then ask. If you're asking out of politeness, and everyone does, don't worry. They will meet someone further down the line who will have the time and resources to help. You cannot be everybody's hero, stay true to those you're close to, and only help if you've got the strength and coping strategies to handle it.
I'm not sure how much sense this blog post made, but I hope you get my notion. It's okay to not be okay, and it's okay to tell others that you're not okay.
Stay strong friends, with love,
Alice
© Alice Daley 2013
Now I don't know about you, but I find myself using the phrase 'I'm fine,' at least ten times a day, sometimes more. Not quite as often as I use the word 'sorry,' but still pretty often. This little phrase can get you into, or out of, a lot of trouble with friends, family, spouses, doctors, colleges and just about any one else. They are effective yet dangerous.
The first problem with these two little words, is that they can have so many different meanings. These meanings can vary depending on whether you're male or female, young or old, and what sort of mood you're in. I'm going to stereotype now so do forgive me...
For the average teenage girl who's just gone through a breakup, 'I'm fine,' probably means 'I'm falling apart inside but I don't want to talk about it. Hold me, bring me chocolate and fluffy things.'
For the average middle aged bloke, 'I'm fine,' means 'I'm fine.' As far as I'm concerned men are much less complex than women, they generally mean what they say.
Other meanings of 'I'm fine,' could include:
- I'm not fine at all, but I don't want to worry/upset you
- I'm so-so, but I don't really want to talk to you, go away
- I'm fine, just too tired to think of a more positive response
- I'm not fine, but please leave me alone
- I'm having the worst day, but if I tell you you'll think it's your fault
- I'm far from fine, but I'm putting on a brave face for the world's sake
- I just want you to hold me, because when I'm in your arms, everything's okay again
- I'm not fine right now, but I will be
- You don't really want to know how I am, you just asked to be polite
- I'm fine, no really, I am
- I can't remember what fine feels like any more
- Whatever's going on with me is something I can handle, I don't want to bother you
- Stop worrying about me, I'm fine
The second problem here, is that we expect other, flawed human beings, to decode our tone and body language, understand exactly which 'I'm fine,' we mean, and act accordingly. Then when they don't, because guess what? Your best-friend/mother/boyfriend/milkman/dog cannot read your mind, and may, from time to time get things wrong, you get upset because 'NOBODY UNDERSTANDS ME!!'
You're right. Nobody can understand you, because they aren't you. They've not lived your life, felt your feelings, experienced all the things you have. They have a different genetic make up to you, different fingerprints, different families and friends. You will never fully understand them, and they will never fully understand you. You might get close, or so you think, you'll learn each other's thought patterns and mannerisms, but let's be honest, none of us truly understands ourselves, so how can we expect someone else to?
Now I'm Christian, and although I don't believe that waving it in other people's faces does any good, it is an important part of my life. So if you're not 'religious' feel free to scroll on by, but I want to share with you something that I believe is beautiful. I have one friend, who understands me 100%, better than I could understand myself. They know each and every thought before it leaves my neurons, they know the number of cells in my body, and have lived life beside and inside me. They feel my pain as deeply as I do, know my deepest secrets. They are always there, never let me down, never leave my side. That person is Jesus Christ, who died this very day, nearly 2000 years ago, to save us from ourselves. He is my best friend.
This song describes it perfectly:
Well I appear to have gone off on a tangent, but an important one at that. If you want to know more about what I believe, get in touch with me; I'd be more than happy to share with you.
Anyhow, the point is, that we can't go around wearing the mask of 'I'm fine,' expecting everyone to see behind the mask. Maybe we want people to see, maybe we don't, and regardless of what we want, some people will see, and others won't. Of those that see, some won't respond in case you didn't want them to see, and some will worry endlessly, fussing over you, trying to make it okay again when really there's nothing they can do. Treasure the people with insight, those that see behind the mask, those that knock the walls down or climb over them.
And if you see someone struggling behind a brave face, ask them if there's anything you can do, don't force your presence, some people just want to be left alone, but let them know you're here for them and although you can't understand what they're going through, you know how much life can hurt, and you want to support them no matter what. Don't be disheartened if they push you away, they don't mean to offend, give them some space but don't abandon them. There are some people in this life who you may have to close the door on, for your own sake or the sake of your loved ones. That's okay, I promise you, nobody has just one person they can turn to, and you must always protect yourself first.
When you ask someone 'how are you?' try to be genuine and not superficial; if you have the time to ask how they really are, then ask. If you're asking out of politeness, and everyone does, don't worry. They will meet someone further down the line who will have the time and resources to help. You cannot be everybody's hero, stay true to those you're close to, and only help if you've got the strength and coping strategies to handle it.
I'm not sure how much sense this blog post made, but I hope you get my notion. It's okay to not be okay, and it's okay to tell others that you're not okay.
Stay strong friends, with love,
Alice
© Alice Daley 2013
Thursday, 28 March 2013
Depression and Doctors
Hello friends,
Recently I've been getting worse, psychologically anyway, as well as physically. I've been having flashbacks, stress triggered seizures, and wild mood swings that leave me chatty and content one minute, then angry and tearful the next. It's been really hard, I feel like there are about 60 different people in my head all shouting different things at me. It's hard to know what's reality and what's in my head; very distressing.
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My boyfriend's been great with me, despite a bit of tension at times where I
get upset and unreasonable and he shouts at me. However, sometimes after having
a seizure, I don't remember being horrible and once he understood how messed up
and out of control I've been feeling, he apologises and we have
cuddles to make it better. I couldn't ask for a kinder, more understand man at
my side. He's stuck with me through so much, through nights of tormented pain,
days of tears and darkness and every other horrible thing that's happened to
me. He's tolerated me lashing out at him when I didn't recognise him, crushing
his fingers whilst in severe pain, spoon feeding me, holding my convulsing body
in his arms. He's still beside me. This amazes me every day; that he loves me
enough to stay at my side through all this pain and hurt. I thank God for him
in my prayers every night.
Cheery title for this post.
I want this to be a place I can
just air my thoughts without too much care for the ill effects, but I'm still a
little nervous about that. There are so many things that people don't know,
that people don't want to know about me. Things that I should or shouldn't have
said or done, but equally things that happened to me that I couldn't change or
control. I have deep hurts.
Recently I've been getting worse, psychologically anyway, as well as physically. I've been having flashbacks, stress triggered seizures, and wild mood swings that leave me chatty and content one minute, then angry and tearful the next. It's been really hard, I feel like there are about 60 different people in my head all shouting different things at me. It's hard to know what's reality and what's in my head; very distressing.
.JPG)
"I am seriously fed up of people letting me down.
Look, I know I've not been the best friend recently- I've been stuck in bed for
most of the time and stuff. But I try, and what I can do, I do without fail.
I'm not tooting my own trumpet, of course not, but I am a little miffed by how
most people I know seem to have forgotten me.
My Jake does a lot, an awful lot, more than he
should do, and more than he can handle. But who else is there? And then during
the moment when I really need him, like REALLY, REALLY need him, he's too tired
or busy to be of any use. Argh! I'm so wound up and frustrated at the moment.
I'm getting more ill each day due to excess stress, over doing it, and a
multitude of other things. But I have no choice, things have to be done, and I
seem to be the only one capable or bothered enough to do them!" -This was part of a separate post but I decided to just inject it into this one. Since I wrote this, some of my friends have gotten in touch and might be coming to stay for a few days, which is nice.
I am a doer. I always have been, hard-working, motivated,
and competent. I am hopeful and like to think I'm somewhat of an optimist, though at times when everything's going to pot I tend to panic and get emotional. This illness has taken so much from me and left me feeling very vulnerable and really down.
Still, not to worry. I've got a double appointment with my GP on April 2nd, with my boyfriend and good friend Debbi present. We're hoping to get some useful stuff out of him, and I spent the best part of today writing out a document detailing my issues and what we want from the doctor, including:
I need some long term, effective pain killers as taking paracetamol and codeine long term isn’t good for you, and my asthma problems means that NSAIDs trigger attacks. I would also like some advice on what medication is best for migraines, as I’ve tried a few OTC treatments to no avail.
Insomnia and night time fevers make sleeping difficult, as well as increased pain and malaise at night time, but some advice would be appreciated.
I think a neurologist would be able to help with the weakness, paralysis and seizures.
I am losing weight and really need help with eating, what to eat and how to keep it down, also with some other digestive difficulties, as again, none of the OTC treatments seem to work.
Just to make sure I’m on the right inhalers, and to crack down on having less attacks.
If any of you have any advice on how to deal with my GP, as he is very unsupportive, and does not believe in ME as a physical illness. We're hoping to change this on Tuesday, but any tips would be really really helpful.
With love, Alice
xxxx
Still, not to worry. I've got a double appointment with my GP on April 2nd, with my boyfriend and good friend Debbi present. We're hoping to get some useful stuff out of him, and I spent the best part of today writing out a document detailing my issues and what we want from the doctor, including:
- Pain Killers
I need some long term, effective pain killers as taking paracetamol and codeine long term isn’t good for you, and my asthma problems means that NSAIDs trigger attacks. I would also like some advice on what medication is best for migraines, as I’ve tried a few OTC treatments to no avail.
- Sleep advice/medication
Insomnia and night time fevers make sleeping difficult, as well as increased pain and malaise at night time, but some advice would be appreciated.
- Neurologist referral
I think a neurologist would be able to help with the weakness, paralysis and seizures.
- Dietician referral
I am losing weight and really need help with eating, what to eat and how to keep it down, also with some other digestive difficulties, as again, none of the OTC treatments seem to work.
- Asthma nurse appointment
Just to make sure I’m on the right inhalers, and to crack down on having less attacks.
If any of you have any advice on how to deal with my GP, as he is very unsupportive, and does not believe in ME as a physical illness. We're hoping to change this on Tuesday, but any tips would be really really helpful.
With love, Alice
xxxx
© Alice Daley 2013
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