Five years ago at the time of my diagnosis I still had the things that mattered most to me. My career was taking off, I had a partner, 3 kitties, a few friends and I was looking forward to being able to finally do all the things I had postponed because of a demanding PhD program (I was also working). Little did I know that was never going to happen.
I was able to drive although I was starting to become alarmed because I'd start to feel woozy when sitting in traffic. I had good medical, dental, and vision coverage. I was filled with hope and looking forward to the future. It wasn't without its stresses but I was doing something I loved. I was living out my calling.
Five years later what remains?
Nothing. All three kitties died (2 in the past year), my partner left me, I lost the house, and I'm in an apartment with poor insulation so its freezing in the morning and hot in the afternoon. The heater doesn't work nor does the oven. More importantly I found out the landlord is known for being a 'slum landlord'. He doesn't fix anything. The last tenant didn't have heat or a working oven either. I don't know how long he lived here but I know I won't go through another Winter with no heat.
This disease has taken everything that has mattered to me.
So how do I define my quality of life?
-a sense of meaning (Jung states in his book Memories, Dreams, and Reflections that "the least of things with a meaning is worth more in life than the greatest things without it").
-feeling connecting to a Higher Power/Divine/God
-being able to read Jung and write
-sense of family and community
-being in nature
-having the ability to explore the world
-a sense of being fully independent
-having good medical care
-being treated with respect and care
-being treated as if I matter
-feeling like I have something to offer
How much of what I wrote on the above list do I have?
Only 2 things. 1) I have a dog and a cat but Chelsea is in end stage cirrhosis and 2) I can do a little research on my laptop
I'm doubtful I'll be able to have the other things on my list unless I improve a lot more. I can't concentrate enough to be able to read my Jung books. I can't focus. I read the same line over and over trying to comprehend it but after awhile I just give up.
While I like living alone I'm finding it difficult to keep up with the daily tasks of living. I'm unable to. I'm simply too ill to be able to do the things I thought I'd be able to.
Last month the International Association for CFS/ME (IACFSME) released a primer for clinical practioners. I haven't read through the whole thing closely and there are a few things I disagree with but the authors stated that 25% of ME patients are at the severe level-either bedbound or mostly housebound like I am. And we are mostly left alone to fend for ourselves.
If we had a disease that was recognized by mainstream medicine those of us at the severe level of disease would at least be able to get in home support, etc....I just put an ad on craigslist to find someone to pay to drive me to appointments and to help with cleaning. I also need to have someone close by in case Chelsea needs emergency care. I can't lift her if need be.
When I have a pet who is very ill I'm constantly assessing their quality of life. Can they still do the things that matter most to them? Are they able to enjoy the things they love (i.e. chasing a ball, eating)?
When its clear they have a poor quality of life and there is no hope for improvement we make the painful decision to help our beloved pet transition to the next place. For my kitty Katie we had the vet come to the house. The vet and her assistant were wonderful. We all formed a circle around Katie. My face was close to her body and I was telling her how much I loved her, tears streaming down my face. The vet gave her the shot and she was gone. It was as peaceful as it could get. She was surrounded by people who loved her and she was in no pain when she died.
So why is it so different for people?
I think of the three women in the UK who suffered terribly from ME. One woman begged her mom to give her enough pain pills so she could die. Finally her mom, seeing how much her daughter suffered gave her the pain pills and watched her daughter die. What an intensely painful decision this mother had to make but she loved her daughter enough to make it. She was charged with a crime but later exonerated.
I think of Patrick others (who I won't name because it isn't public information) who's quality of life became too unbearable and they chose to leave this world. There was not one word of judgment from anyone in the ME community. We all understood. There but for the grace of God go I.
I'm one week into what looks like an extended crash. For the first time in months I had trouble standing in the kitchen yesterday and had to repeatedly go lie down so I wouldn't pass out. That occurred a couple times and it scared me.
I remember working at a crises clinic doing assessments. My supervisor told me about a friend of a friend who died in her apartment. She was living alone and wasn't found for a week. I remember thinking that's not how I want it to happen for me.
Those 25% of us at the severe level need support. We need to not be forgotten. We need to be remembered and we need to know that our life matters somehow.