My day and night are upside down. I can not sleep at night. No matter how hard I try, I can not change it. I just have to accept it. Occasionally, it shifts back to normal. I maybe sleeping long hours, but it is not quality sleep. I wake up with exhaustion and can not move for hours.
My fatigue and exhaustion is so bad that my body is paralysed and refuse to move most of the day. Actually, I am starting to realise that the fatigue is coming from neurological disorder and the transient paralyses is one of the symptoms. Whenever I have to get up during this stage, to go to toilet or to let dogs out for their toilet, it is more than a struggle and it needs efforts as if climbing mountains. And I also try not to fall with black out or dizzy spell. And yes, I cried many times because these are just so hard.
It seems like I got another virus infection that is giving me bad head aches, soar throat, muscle aches, nausea, diarrhoea and so on.
My brain is exhausted and I just can not think well or organise things.
Day light or glare on white walls are just too bright and I sometimes wear sun glasses in bed and my ears sometimes aches as if I am in a deep water. When I open window, I smell pollution from cars miles away and feel ill from it. My eyes get dry, itchy or pain and often gets small blisters behind eye lids.
Amazingly, I can start moving from early evening and get okay moments late at night or early in the morning. I use the moments to eat, shower, sweep floor, wash dishes and have quality time with my dogs. I haven’t vacuumed for a very long time as it requires lots of energy. Even during good moments, I need to rest a lots between each activities. I need to drive to Brisbane to pick up the shower chair that I bought on eBay, but I am not sure when I can make it at this stage. I know I shouldn’t have bought it as it was ‘pick up only’. However, the price was hard to resist and I need a decent shower chair rather than huge plastic outdoor chair. As I always do, I still think that I can do most of the things without trouble until I find it hard way. Somewhere in my brain, it is refusing to accept that I am too ill to do even a basic things. I need to do another grocery shopping in couple of days, but I would stretch it to another few days.
People misunderstand ME/CFS sufferers because we do not look ill, and we try to do things when we get rather better moments. They do not see us in bed or see us fighting off stabbing pains. If I try to explain to my neighbour how I am suffering with all the symptoms of ME, they would think I am an attention seeker.
Before I move to women’s shelter due to Domestic Violence (DV), I had an understanding community support by Blue Care. I had a very rare coordinator who understands ME/CFS well and provided me with excellent home assistant. That made them realise that I was suffering from DV and helped me to leave husband. Unfortunately, I had to move outside of their service area because I could not find an accommodation I could afford. It’s been four months since I moved into this house, and I am still waiting for Blue Care in this area to contact me. To be honest, I gave up my hope of getting help in this area.
I should be start packing things as I have to leave this house before the 4th of May. The landlord sold their other house and decided to move back in here. I still have to find a place to live with my two dogs. When I try to think how I am going to organise it, I feel getting panicked and my brain just stop thinking.
Good thing is that summer heat is easing. Heat makes me even more ill and it paralyses my body. Another two or three weeks rest and my will power would give me enough energy to shift to a new place. I am hoping that I would be able to rest for a long time.
Well, I am going to rest now. My brain is exhausted. I can not read or write anymore. I hope this post is making sense.