Thursday, 24 January 2013

Musings on Madness

So I kind of have a lot to say in this post. And very little of it is to do with M.E. It's things about life. This probably won't be well written, as I am brain-foggy, but it will be from the heart. Also, I am not a psychologist, and this is my opinion formed from my own experiences, it is not fact.


I think we're all mad. Genuinely. For the last few months I've been convinced that I am going mental, which is apparently a sign that I'm not going mental, but who cares? I cry, I scream, I have panic attacks and start shaking. There are times I don't recognise my own boyfriend, sometimes I scream and think he's going to hurt me, and occasionally I sit in the middle of the floor and cry whilst I cut my legs to shreds with a razor blade. Now this raised concerns, am I mad, psychotic or depressed? Do I have an anxiety disorder? What about my seizures, are they a mental health issue? I don't know. But there's one thing I will say, people react to trauma in different ways. Some people become emotionless, mechanical, and just seem to carry on with their lives, just with less vigour than they used to. Others scream and cry and throw things and generally create drama. Some people cut themselves, others starve or burn or hit themselves. Many people like to talk about it, many don't. Some people shut themselves off, become isolated and develop non-conformist habits. Other people seem to carry on leading a perfectly 'normal' life.

But this in itself raises questions. What is trauma? The online dictionary defines it as:
1. A serious injury or shock to the body, as from violence or an accident.
2. An emotional wound or shock that creates substantial, lasting damage to the psychological development of a person, often leading to neurosis
3. An event or situation that causes great distress and disruption.

Physical trauma, to my mind, changes meaning as we age. For example, a young child who falls in the playground, and grazes their knees for the first time, is entitled to cry as much as he likes, as this is probably the most traumatic thing that has occurred in his life so far.
(On a side note this is why doctor's "pain scales" annoy me.
Pain is relative to how much or little pain you've experienced before. That child would rate their knees as a 9 or 10 on the pain scale, simply because it's the worst pain they've ever felt. However an older child with something like appendicitis, would rate their pain as a 9 or 10, and the grazed knees as maybe a 2 or 3. Does that invalidate the first child's feelings of pain? Of course not, it is simply that the older child has had more experience of pain, and therefore is able to put things into perspective.)

So by physical trauma, I mean every pain or illness you've ever had. No matter how seemingly insignificant. You are entitled to your pain, and nobody else is justified to tell you that your pain is not how you say it is, just because theirs is 'worse.' In the same way, you are not entitled to belittle someone else's pain, because you're having a 'worse' time. This is something I truly believe in. 


Emotional trauma, again, can be any event that unsettled someone, from missing the bus, to the loss of a loved one, from losing your keys to being assaulted. Now I realise there seem hugely disproportionate, however, consider this scenario:
'Katie stepped off the bus, knowing she would be home alone tonight, she fumbled in her pockets for her house key. Empty. Panic washed over her, she felt sick and dizzy. Then she remembered the bag slung over her shoulder, and began emptying it frantically onto the icy front path. Her numb fingers started to shake as her key was nowhere to be seen, what could she do?'

How would you like it if you were Katie, and someone told you that you had no right to feel upset or panicked, because their grandfather has just passed away. Their trauma, as much as it is valid and deeply saddening, does not actually help you to feel better. You're still locked out of the house in the cold.
Emotional trauma is considered to be the most common trigger for 'madness,' and this is hardly surprising. Our brains are good at dealing with physical pain. Okay it hurts, sometimes a lot, and sometimes for a long time, but it's obvious to our brain what the problem is; the brain can think 'my arm hurts, better not move it' or 'my tooth hurts, better not eat toffees.' Our brain can protect us from further injuring our bodies, because it can recognise where and how it hurts. The brain however, is not so good at dealing with emotional pain. It struggles to compute feelings of fear, hate, guilt etc. It doesn't know what to do with these electrical impulses a lot of the time, and therefore we can behave irrationally. For some people, the effect of the trauma is amplified, for others, well the lucky sods seem to deal with it pretty well. I don't know why certain people act within the norm as a response to trauma, and others don't, but I believe since we are all uniquely crafted, everyone is truly different. (Yes, even you identical twins.)
I like the third definition of trauma the best. Any event or situation that causes you great distress and disruption can be considered trauma, as far as I'm concerned. Nobody lives a life that resembles skipping from cloud to cloud surrounded by sunshine, butterflies and pink ponies. Reality just isn't like that. The human race is screwed up, and we live in a screwed up world. It is sometimes an appropriate response to reality to go insane. Your trauma can affect you in so many different ways, and you're entitled to be effected by it, in whichever way it manifests itself. Though if you're able to channel the trauma into less destructive outworking's, it's probably not advisable you don't go around beating people up, and claiming that 'I had a deeply traumatic life, therefore I am justified to punch you in the face.' Combating trauma with trauma only makes the effect of your trauma go further. At some point I shall watch 'The Butterfly Effect' and write a blog post about this concept, but that's for another time.


It can be deeply hurtful to a person to tell them that their problems aren't 'big enough' to warrant help, or that you have bigger issues going on right now. However, it can be helpful to someone suffering in this way, to aid their sense of perspective with a gentle reminder of their own circumstances. Do not dismiss the issues they have, by simply saying 'just think more positively' or 'it can't be that bad.' Instead, support them, let them know that even though you may not understand what they are going through, you are available for them, and you care. Remind them of all the good and wholesome things in their lives; a loving partner, happy family, a good education, and many other things they may or may not have. I do not think there is anybody in this world that has nothing to be thankful for. Even if that something is simple hope. Hope that one day, things will improve.

Now we come onto a slightly broader, bigger question. What is madness? 
I looked at the dictionary definition of insanity, and found it somewhat vague. I also didn't agree that this is the worlds view on madness. None of us is the same. We all possess different quirks, and abnormalities. I used to have a friend who was convinced her teeth were going to fall out. Another of my friends is anxious about dying in clothes they wouldn't want to be buried in. I am scared of glass lifts, electric toothbrushes, and any horror movie ever. I don't like lemon cake or anything slimy, and when I see something cute my entire face implodes. These things make me different from some people. However, I am not the only person in the world with these characteristics. I might be the only person with this combination of anxieties and quirks, but I am not alone in them. Everybody feels like they're going mad sometimes. It's just the way we deal with the things life throws at us every day. 

Now I know there are diagnosis' and hospitals for those with mental illness and psychotherapists and all that, and I am in no way saying that they are irrelevant or unnecessary, some people have very specific and extreme needs, which obviously cannot be ignored. But what I am saying, is that you don't have to feel like there's something wrong with you if you deal with things in an atypical way. There's not. On another note which will become another blog post, not one of us is 'normal,' as the concept of 'normal,' is screwed up. If people aren't observably mad, chances are inside they're planning to murder their little sister's bunny, or something. Besides, I like overtly mad people, they are so much more interesting than those whom attempt to keep up the appearance of being like everyone else. Those sort of people bore me.
So my friends, stay mad. Don't feel you have to hide your insanity from me, wave it around your head, dance around naked with it tattoo'd on your belly, and don't worry, unless you see two men in white coats exiting a van outside your front door.. Then consider worrying a little, maybe.

Love you all,
Alice

© Alice Daley 2013

Wednesday, 12 September 2012

Hurting and Hapiness



Hey there guys.
Stuck in bed today, realised I hadn't blogged posted in quite some time! Sorry about that.
So today I've finally managed to get a doctor's appointment, with a doctor who was slightly more sympathetic than the others the last time's I've been to the doctors. I really need some answers now, I'm getting impatient, getting sicker, less mobile. It takes me half an hour to crawl to the toilet and back if I'm alone. If I go out I have to use crutches and more often than not my boyfriend ends up mostly carrying me despite the pain. I keep trying to go out, socialise and lead a normal lifestyle but it's just impossible. I started my second year of college last week and I'm scared I won't get to finish it. I have so many plans and dreams I have had to put on hold due to this horrible illness. I want to ride horses again. I miss that so much, so so much. I miss the freedom, the security, the wind blowing through my hair, the leather between my fingers. So cliché  I know, but it was my life. I rode 6 days a week, 2 hours each night and worked at the riding stables 10 hours each Saturday. It was all my free time, and it hurts to be unable to even go and see the horses at all. I am going to try and get up to the stables when I'm a little more mobile, but I'm scared it will just make me miss it even more. Last night, I wanted to go to sleep and not wake up again, the pain is just so unbearable at the moment. I can't use the crutches because my arms and shoulders hurt too much, but at the same time I can't walk because my legs are too weak. A lot of my friends are fed up with me, keep asking when I'll be better, and if there's anything they can do. Some are still asking "what's actually wrong?" a question I still don't have the answer to. If I say M.E. I have to explain it to them, and then explain that I've not been diagnosed yet because of the ambiguity of the doctors. My boyfriend is fantastic, but he's just got a job so he doesn't have all that much time for me any-more, and he wants to keep his social interactions up even if mine are minimal. I am so lonely at the moment, nobody seem's to bother with me any-more. My close friend Rebecca, who's taking me to the doctors, is moving away to university at the end of the month, then I'll be even more alone.
Daily Encouragement


I asked some of my friends, what is happiness?

Happiness is:

· Happiness is infectious - smile and the world smiles back.
· Happiness is being able to define happiness!
· Happiness is when what you think, what you say, and what you do are in harmony.
· Happiness is not something ready made. It comes from your own actions.
· Happiness is having a large, loving, caring, close-knit family in another city.
· Happiness is only real when shared. 
· Happiness is having someone to share it with.
· Happiness is rare.
· Happiness and contentment aren't always the same thing. Contentment is the rare thing. Happiness not so much. Depression aside I'm happy.

Happiness is the meaning and the purpose of life,
the whole aim and end of human existence.
So, what is happiness?

For me, happiness is feeling loved, safe, secure and having hope. Happiness is my cat Mana coming onto my lap when I'm down. Happiness is my boyfriend Jacob stroking my cheek, lulling me into safe, nightmare free sleep. Happiness is enjoying the little things in life. Happiness for me, is a choice. I can choose to be happy despite my circumstances. I am choosing happiness. Are you?

Love you guys, Alice xxxx
© Alice Daley 2012

Friday, 3 August 2012

Symptoms and the Sword

Morning All,
So today I'm going to talk about some of my symptoms and how they effect my daily life. Myalgic Encephalomyelitis is characterised through many different symptoms but the underlying one is total utter exhaustion all the time, exhaustion that doesn't get better with sleep, and that is always completely out of proportion to the level of activity one does. Mental and physical exhaustion, muscle fatigue and feel generally really unwell.


This chronic, severe and debilitating fatigue is not the same as the blanket term CFS, which doesn't really cover the range of really nasty symptoms that accompany those suffering with M.E. I can only talk from my own experiences, and the experiences of others with M.E.

Some symptoms I experience include:
  • Seizures, these aren't very common amongst M.E. sufferers but there is evidence of some others experiencing this too. I am currently undergoing tests to rule out epilepsy but the seizures started about the same time I started getting sick with M.E. so I'm sure they must be related.
  • Severe headaches, sometimes too bad to use a computer screen or even tolerate the smallest amount of noise or light, but more often than not they are moderate headaches which just last a long time.
  • Stomach aches, and cramping pains in the lower abdomen. These often cause me to curl up into a tight ball and scream/cry/whimper until the pain subsides. If Jacob is here I'll get a tummy rub which can ease the pain a little.
  • Ear, throat and glandular pain, not very severe comparatively but I do get pain and discomfort in these areas, sometimes lasting a few days.
  • Sudden unexplained bouts of weight loss, in the last month I've lost about 6kg (about 13lbs) despite eating 3 good meals a day. However I've also been struggling with:
  • Vomiting after meals, my stomach feels enormous after I've eaten, I feel uncomfortable and am often sick. I take anti-sickness tablets before I eat and this often helps me to keep my food down.
  • Nausea, this can be very severe, to the point where I'm gagging on thin air. It's one of the worst feelings, and comes with hot flushes and dizziness, kind of like feeling travel sick, but much worse.
  • Muscle pain and weakness, last but certainly not least, this is a really hard part of M.E., for myself and a lot of other people too. The whole body aches, but my worst areas are my back, hips and neck. Other joints such as knees or wrists experience pain and weakness on a fairly regular basis, and it means I have to walk long distances with a stick.
Daily Encouragement
“Sever the ignorant doubt in their hearts with the sword of self-knowledge. Observe your discipline. Arise.”

One problem many M.E. sufferers have to contend with is the doubts of others. Many are told that they're not really ill, it's all in their head and they can just snap out of it. Likewise, many of our friends and family get fed up of us being ill, with comments like 'oh you've still got M.E. then' and 'we all have a bit of M.E. sometimes..' and 'I get tired too.' Things like 'can't you just sleep for a week?' and 'you don't look ill.'

This is where knowing about your illness comes in really useful. Knowledge is the most powerful weapon against the doubters. Read up on M.E, join support groups and get in touch with others with M.E. Find a good doctor, and if your doctor doesn't believe you, change doctors.

Take care all, Love you! xxx
© Alice Daley 2012

Thursday, 2 August 2012

Seizures and Strength

Hi Everybody, Sorry I haven't been around much these last few days. I've been in hospital since Sunday afternoon. Was rushed in with a prolonged and serious seizure, over 10 minutes. Thankfully Jake called the ambulance and they took me in and I was admitted, stayed until I was discharged today.
This is the lovely Jake, by the way, who looks after me immensely well, and stayed at my hospital bedside for 52 solid hours, until the hospital staff finally kicked him out. Everyone was amazed by his devotion and amazing strength.



I have tonic-clonic seizures, which means I feel light-headed and dizzy for a short time before the seizure, which starts with me losing conciousness for a few seconds, all my muscles tense up and I usually fall down or fall off what I'm sitting on. This is the tonic phase of the fit. Then comes the longer, more violent part of the seizure, whereupon I convulse uncontrollably, and sometimes I wet myself, bite my tongue or the inside of my cheeks. As you can imagine these fits are quite scary for anyone standing by. This is the clonic phase. After I stop fitting, I remain unresponsive, drowsy, disorientated and confused for 10-30 minutes. I loose the memory of about an hour or two before the seizure and usually have a pretty bad headache too.

So the hospital did a bunch of blood tests, a head CT, and an MRI scan, and they all seem fine, which is really good. But I've been diagnosed with non-epileptic attack disorder, there's no cure its just treated by avoiding triggers like stress and busy situations.

Daily Encouragement
“In the depth of winter, I finally learned that within me there lay an invincible summer.”

Strength is really important when handling M.E. Particularly emotional strength. Nobody else can do this for you, you have to learn to be strong for yourself, as people will inevitably let you down. Strength isn't about bearing under the strain of this illness, it's about learning to accept that you can't do it all, but not being beaten by inability to carry out tasks. I used to get really frustrated when I couldn't finish a puzzle, or make a cup of tea, or do up my buttons. I would scream out “I'M SO USELESS!!” and break down into tears. Now I am learning to be strong and graceful, and when I can't do something, I try to say “Maybe I can try a bit later, or tomorrow.”
Be strong guys, I love you all! xxxx
© Alice Daley 2012

Saturday, 28 July 2012

Salutations and the Sheild

Hi, Alice here,
I'm seventeen years of age, and am awaiting an M.E. diagnosis. I've been misdiagnosed by doctors who don't understand with C.F.S. and depression, but am almost certain that what I'm suffering from is myalgic encephalopathy. I'm starting this blog to share with you my experiences, encourage others to keep on fighting their own battles, and to track my own progress or (hopefully not) deterioration. Feel free to offer encouragements of your own, advice and general loveliness, but nothing nasty, unhelpful or unkind please!


Daily Encouragement

Don't be afraid of hiding a little, you can't be strong all the time. Allow yourself room to be weak sometimes, and ensure you have a shield to protect you from the world during those times. My shields range from my duvet, to my fantastic boyfriend Jacob, but any sheild that allows you to hide away sometimes, is going to be a help. I'm not telling you to shut yourself out from the world, because that's not healthy, just be real with yourself and allow yourself to be secluded when you need to be.

© Alice Daley 2012