Post Exertional Malaise (Pay Back) is still going strong
Posted Sep 12 2008 1:30pm
The Post Exertional Malaise (Pay Back) from moving house is still going. It is actually getting worse each day. Pains just started to develop, so are dizziness and nausea. Maybe it is not Pay Back, but just an ordinal severe ME/CFS as Pay Back only lasts couple of days. On the other hand, my ME/CFS progresses gradually unlike most of them gets sudden relapse.
I HATE it. Everything is extremely hard. Everything is struggle. I really do not want to keep going like this. It may ease up one day, but when?
When my condition gets really bad like this, I feel so miserable and depressed. I also become very bitter and I hate myself for that. I really want to be a bigger person and accept any difficulty in life and stay positive all the time. However, when things are this bad, it even hurts trying to be positive. Believe me, I am trying. I am really trying hard. But things happening to me is just too much for my capacity.
People do not know ME/CFS can be terminal. Sufferers die from organ failure, complication of symptoms and so on. Well, it is now official that ME/CFS can kill. But the most scary part is that majority of us commit suicide. (I’m sorry but I can not locate the article which I read about it. But it is very believable.) If you are having my life, you would understand why we want to end our own lives and you would not blame us if we did.
If I didn’t have my dogs, I may not be here anymore. (They are my only family and give me joy.) If I didn’t discover blogging, and if other ME/CFS sufferers did not find me online, I am not sure what would have happened to me. I wished ME/CFS is a terminal illness so that I could see the end of my straggle. I wished I could be strong enough to walk to motor way and wait for a car to run over me. Day in, day out, I imagined a sharp knife slashing my wrist, even I have a phobia like fear to sharp edges. I did not do anything so bad to deserve this much of punishment in my life.
At the moment, I become conscious/awake around mid day. And that moment, even while I am still drowsy, exhaustion reminds me that I am an unable person. I drag myself to open back door for my dogs to go out for toilet. That is all I can do and I drag myself back to bed. I want to have a cup of tea. But it takes another 2 and a half hours before I can drag myself out of bed again. I have tea and feel bit better but I still need to come back to bed. I feel hungry but I can not get up and do not feel like actually eating something. Another 2 and a half hour later, I manage to get out from bed and make another cup of tea. I have biscuits soaked in the tea so that I can eat it. This is how I start my day. Each time I drag myself out of bed is an ordeal and require strong will power… These are such simple tasks and I should not have to use will power and I should not feel they are like climbing mountains.
I spend most of the day in horizontal or near horizontal position. I can not sit up straight or stand straight for long time. When I use laptop, it usually sits on my stomach or on my chest depending on how strong I am at that time. And there are times I can not even lift the laptop at all, or it gets too heavy and suffocates me. Considering my friends, information centre, real estate agent, shopping mall, bank and other necessary functions in everyday life are in my laptop, I shouldn’t feel it is too heavy…
My life does not have enjoyment. My life does not have purpose. Nobody makes me a cup of tea. It is just continuing struggle every day and every day. When I cry uncontrollably because things are just so hard, no body hears me. And I need to constantly remind myself a couple of reasons why I have to keep hanging in there.
If this is your life, what would you do?
I am not suicidal. I am just having really bad days from ME/CFS.