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. 

Sensory overload

Disability and illness

It still amazes me how affected I am by everything my brain has to process, all the impressions the world brings. My fiancé and I went to a store today and within a minute I had a massive headache and I was so dizzy I felt like I’d fall off the wheelchair and/or vomit. Just by all the colourful merchandise, people going around, smells, noises etc. I am generally better in the summer, (otherwise we couldn’t go on all these errands at all as my fiancé doesn’t have a drivers license) so I thought I wouldn’t get so poorly, and not so fast. It got a bit better when I got used to the environment, only to get worse again as my brain was truly overloaded and my energy levels sunk fast. They’re not exactly big to start with… 

This is certainly not anything that is talked about, and I think it should be. I had no idea that was a symptom of chronic illness, and I don’t think people in general knows or understands how hard it can be, just being outside of your home, or having someone in it.

I wish it would be more known, and that people would take steps to help everyone that suffers from sensitory problems. It’s not just people with chronic illnesses, but people with other disabilities or neuropsychiatric variations as autism or adhd. 

A few things that can make it easier for us to handle the outside world is

  • No music in public buildings.
  • No perfume among other merchandise.
  • People being careful with their use of perfume and perfumated products such as softener (I have on several occasions gotten reactions from softener in other people’s clothes).
  • No blinking signs or window products. 
  • …please do fill in the list in the comments as I can’t remember more right now…!

I was super tired after this ordeal but as I had bought some towel hangers for my mum we went over to her place and invited ourselves to lunch/dinner. A very good exchange for a few towel hangers, all of us thought. My mum had been looking for towel hangers for over a year, so she was happy. My fiancé and I didn’t have to cook and got fresh cod – yummy! – and my parents were happy for the visit, especially since they were a bit bored with bad weather in the middle of their vacation. Win win. 

My brain is so rattled from earlier today it has decided to keep me awake though. Hope I’ll be able to sleep soon cause I am so so tired. 

Loss

Disability and illness

I listen to stories, as I can’t read books anymore due to the mental fatigue that comes with many chronic illnesses. I used to be a real bookworm, almost always had a book with me, and read several books per week since I was five… It’s a huge part of me that’s just disappeared, and I miss it so much. Listening to audiobooks help though, it’s almost like when you were little and your parents read for you. I still miss the reading though, it’s not completely the same. 

Another part of that is my studies. I was at law school when I got diagnosed with ME and fibromyalgia, and even if I tried it became impossible to continue as I got worse. I would have started my last term in a month, and graduated just before my 28th birthday. Just thinking about it makes me want to weep. It’s like an open wound in my soul, and I try to not think of it. 

I tried so hard though. I forced myself to go to school even when I was so tired and in so much pain that I almost threw up on my way to school from the tram stop.  (I didn’t have any pain medication at the time, as the doctors thought that I was ”too young”. Too young for pain relief. I’d like to hit them all over the body with a baseball bat and then deny them pain medication and see how they like it!) The last straw was when I cried of exhaustion already on the tram TO school, and didn’t know how to go on. I asked for advice in a support group and they told me to get on sick leave before I drove myself to get even worse. You can’t keep pushing yourself with ME, it only makes you worse. 

Imagine when you have a really bad flu. Then push yourself by going to work/school, the gym, keep the house clean, keep yourself clean, etc. The effect is the same as with ME: You get worse. With ME, that might be permanent.

That was in December 2013, seven months after my diagnosis. In May that year, I walked 10 km with the dog. By January 2014, after an exhausting Christmas and the time for my body to relax after all my pushing, I was unable to walk even 50 metres. I tried, and broke down in convulsions and fever, basically unconscious for several hours. After that, I listen better to my body.

I still push myself too often, and I pay the price, although not as hard a price as that time. It’s like a kind of hangover, but with the added pain and exhaustion of fibromyalgia and ME, and it goes on for days or weeks, or even months or years! I still can’t walk further than 50 metres on a good day in the summer, 20 in the winter.

These losses, how my body and mind fails me… My illnesses might be invisible, but they still make a huge impact. Not only for me, but for my whole family.

Sick & tired

Disability and illness

I am so exhausted, so tired, so extremely fatigued that I can’t think straight. So what else is new, I have ME, what do I expect? 

I think the big problem is that I need to do certain things, I want to do other things, and don’t have energy for neither. That I’m now in pain, nauseated and dizzy does not help. The fact that I’m not able to sleep will definitely not help. I wish I had som respite. I wish I could just get a week of nothing. A week in coma so my body could catch up a bit. So I’m not constantly ”in debt” to some energy bank, starting each day with less energy than the day before. 

You don’t know what tired is until you’ve been sickly tired for what feels like forever. How did this happen? You never think this will happen to you. I never did. These things happen to other people, not me. I was invincible. Until I wasn’t. 

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…

Passivation and mobility aids

Disability and illness, Medical health professionals

I’ve been thinking a lot on this whole thing that the medical health professionals talk about so much; passivation.
This notion that if I get an aid, like a wheelchair, and is able to go outside of my home and participate more in society, I will be passivated???

So, I can get out of the house = passive
Can’t get out of the house = active?

Please tell me how this makes sense?!

I have heard them, but they don’t hear me. They say I should walk a little, but their ”little” is a marathon for me.

So this is my current situation:
I asked for an electric wheelchair with a joystick and a high back that could recline (so that I could lay down and rest in order to be able to go further after). They gave me a mobility scooter and claimed it was ”better”. When I had objections, they waved them off.
For instance, I said that it was too big and clumsy for grocery shopping. Their answer was that I could drive the scooter to the store and then walk around the grocery store with a trolley as help. Even though they know I can only walk 20 metres, and that I wasn’t even able to do a walking test at the physio because that day I wasn’t able to walk at all.

To ”hang over a trolley” to be able to walk around the grocery store does not help if I a) can’t walk that far with or without trolley as my legs give out and I faint and b) gets a sensory overload by just being in the store! Not to mention getting there, even driving a mobility scooter is exhausting with so limited energy!

The situation is then that I can’t go grocery shopping at all as the aid I was given is not fit to what I need. As a result, I can’t go grocery shopping and thus do not get out at all. Because of this I have once again requested an electric wheelchair, or, if I can’t get that, a better manual wheelchair with an external motor such as a smartdrive.

Apparently, they still don’t understand. They still say that I will be passive if I get a wheelchair that I don’t need to get off to do some things. I don’t know if they think there is superglue in the seats of electric wheelchairs, but they have this idea that once you get one of those, you’re stuck there. Even if you get better, which is ridiculous! They can’t see the forest for all the trees. They are so focused on their objective that they don’t see how it effects me individually, and won’t step out of their box to think in a different way.

If I can walk, I walk! I still walk inside, at home etc. And if I got better, I wouldn’t walk, I would DANCE!

They also say that electric wheelchairs are only for people who are more or less completely paralysed and for older people. Once again the ageism in health care. I know a lot of 80 year olds in better health than I! It’s not age that matters when it comes to illness. Even children get cancer, and none questions that, but a young person with a chronic disease?! No way! ”You’re too young to be sick!” or even ”You’re too young to get pain killers/sleeping aids/referral to a specialist”…

Seriously? Can you stop that?

I’m fighting for my life to get more active, to get the most out of my life as it is, and all I get is an attitude that I’m trying to make myself passive.
I am so incredibly frustrated!

image

Vision aid: A picture of my dog Alizza in our garden

Strangely enough, I actually didn’t get a dog to lay down and die in an electric wheelchair…

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.