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

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

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

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