The pain makes me sad

Disability and illness

When I have a pain flare up, which often coincidences with PEM (Post-exertional malaise – the increased symptoms that comes after an activity when you have ME), it takes so much energy and leaves me lethargic and weepy. I try to think positive, but it’s like I’m always at the brink of tears. Like I carry a great sadness, my whole body just feels sad. 

It’s tough to keep my nose above the water these days, especially as I can’t do anything to cheer myself up. The stress of all the things I need to do that I’m unable to because of my health is immense. I try to let go, as I can’t do anything about it, but I constantly feel as if I should just try more. 

Some days this chronic illness thing sucks more than others. 

Anxiety

Disability and illness, Medical health professionals

Everyone seem to think that mindfulness and breathing exercises can cure all sorts of anxiety and sleeping problems. They’re wrong.
For me, the a anxiety sits like a ball in the chest. You know how nervousness sometimes is said to be like butterflies in your stomach? Anxiety is more like a yarn of cockroaches in your chest. Crawling, running, cluttering… Causing your skin to crawl, gives you a feeling of disgust and the flight mechanism kicks in.
You try to breath in calm and breath out anxiety but then you realise; the anxiety is not in your breath, it’s not in the oxygen – it’s in your blood stream. Pumping around in your veins like poison.

I’m frankly quite annoyed with all the mindfulness and breathing, presented as a solution to everyone, regardless of circumstances. I don’t want to be in my body, I don’t want to feel my every detail. Because it all hurts. All of me, every millimetre, hurts. And adding to that, I get spasms. You try focusing on your breath when your body is jerking you around. Not very calming.

So, how do I present this to my new shrink, who had a mindfulness session with me last time?
Cause all health care professionals knows best, and if the patient objects, they are being ”difficult”. I’m already known as that patient I think. Among the nurses and certainly by the occupational therapist, demanding doctor’s appointments and a wheelchair fitted to my needs etc. Must be super annoying to have a patient wanting you to do your job and help them!

Deep, deep sighs…

Painsomnia deluxe

Disability and illness

I don’t think anyone can understand the frustration of the many symptoms of a chronic disease. Painsomnia is one of the more common ones, which I think a lot of people have experienced at least once in their life. It simply means that you’re in too much pain to go to sleep. Comes from pain and insomnia, obviously. For me, my current insomnia period is a bit more complex.

It’s not only the pain that keeps me awake, but my spasms and the fact that I always, every night, dream a lot, dreams I remember in the morning. I guess this translates to not being able to get in to proper REM sleep cycles which normally comes after dream sleep and is when you forget your dreams. If I remember correctly! Anyway, dreaming so much, for over 6 years now, and a lot of it nightmares, is making me a bit scared of falling asleep. I know that I’m not in for a relaxing nights sleep, but a lot of fleeing murderers and such.

At the moment, I’m also quite stressed and anxious about my situation. That makes my head spinn and the anxiety is really messing up the going to sleep part. Even if you manage to stop thinking and try to do breathing exercises, the anxiety is there, gripping your heart with an ice cold hand, putting a weight on your chest, pit in your stomach and lump in your throat. It’s like your whole body is ready for disaster.
I’ve had problems with panic/anxiety attacks earlier in life, and it takes all my strength to not hyperventilate from the overwhelming feeling of impending doom.

I’m trying guided meditations with an app (called Calm) and tonight I tried one for ”deep sleep”. Should be good right? Just what I need.
Except it did the opposite. It entailed an exercise of tensing your muscles to make them relax (faster? easier?) but unfortunately, with M.E. and faulty mitochondria that was a big mistake. First of all, I got rushes of lactic acid straight away, and that still hasn’t gone away, 1.5 hours later. Secondly, it made the spasms ten times worse. I’ve been flopping around like a fish on dry land, every time I relax a little, or forget to keep my body in check. Sometimes I can’t stop them no matter how hard I try either, and at this time of night it’s mostly impossible.

Imagine trying to sleep and have your body jerking you around. Now imagine everything in your body, from the muscles to the joints, hurting. Then combine the two so the spasms is like getting punched where you have a bruise.
Sometimes, I hate being sick more than others. Being constantly exhausted, and then get spasms and stuff stopping you from going to sleep, is torture.