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