R E C O V E R Y?

I haven’t been writing much lately, which I think is directly related to feeling well.  When I feel well, I find that the last thing in the world that I want to do is think about being sick.  I started really working hard at being well starting in March, in fact, I started thinking a lot about R E C O V E R Y.  This was a big step for me because there isn’t actually a whole lot of information out there about recovery from MCS.  If and when I have come across information about recovery, it is attached to a big promise and a hefty price tag.  

Personally, I think that I have come through a natural progression of recovery because of all of the massive changes and accommodations that I have had to make to my life.  I had to move out of an multi-unit apartment and into a detached home where my partner and I could have control over what was coming into the house.  It took a lot of work, but we created a safe space within our home.  I was working full time and also part time and I had to leave that work because it was no longer an option for me. I decided to go to back to school but then found that I couldn’t manage my full time program and had to switch to part time studies. I stopped going almost everywhere.  My partner and I developed many protocols for managing contamination of the house.  I learned about masks and respirators and how, when, why and which kind to use.  

My immune system was in chaos and I could barely function and in addition to being so extremely sick, we were also making all of these major life changes at exactly the same time.  We moved into our home in late August 2013 and it took about seven months before I stopped having constant reactions and the chaos began to subside.  I couldn’t think about things like “recovery” when my body was in a constant state of chaos.  But things slowly started to improve and by March, I was spending less time in bed and my reactions were not lasting as long.  Like anything, I think we adjust to our new less-able way of being and learn new limits very quickly, although, I wouldn’t say that those months went by quickly.  They were the most isolated months of my entire life.  Time was dragging heavy heels and the days felt like months.  At my worst, I spent 20-25 hours a week living in a bathtub filled with hot water, baking soda and epsom salts because it was the only place I could be where I didn’t feel pain.
Isolation is the hallmark of this illness.

I was never a super social or extroverted person to begin with, but I was employed in the social service sector for over twelve years, so I was accustomed to spending a lot of time with people in my week.  I also had a very active photography career, which came to a grinding halt when I got sick.  I used to be pretty engaged within my community and hosted many art and food parties, which also just stopped.  Everything just stopped, well, I guess I was the only one that stopped because the world went on without me. 

 There is nothing quite like developing an obscure chronic illness that no one has ever heard of, that is hotly contested, poorly understood and grossly misrepresented in the media.  Both my family and my friends were a little confused by all of it and it took a long time for me to be able to communicate about it in a way that made sense to me, let alone to others!
The hardest thing about getting sick has been slowing down and not being able to do all the things that I used to do or go to any of the places I used to go.  I was a busy, independent, strong and active person living a very full and completely blissed out life!  I just don’t have the freedom anymore to just pick up and go anywhere or live with any amount of spontaneity.  I have to plan and strategize every trip outside of the house and I also have to strategize every person’s visit with me inside of my house.  I have to think about everything that I do and how I am going to get it done without being exposed to the triggers that cause my immune system to spiral into chaos.  Even my back up plans have backup plans and evacuation plans and plan Bs and Cs and all the masks to go along with it.  I also have to work extended recovery time into my life because attending one class at school might just leave me bedridden for an hour or two or a week or two or a month or two! Who knows?!  My life has become very small and has made me very dependent on others, which is extremely difficult and frustrating.  I just miss being able to just pick up and go visit someone or go out for supper or take a trip or grab a coffee or go to the library or pick up snacks at the fucking grocery store.  I can’t do any of these things anymore.  

Recovery from this illness is not like recovery from the flu where you wake up one day and all of your symptoms are gone and you feel better.  I have a chronic illness and recovery for me has been a journey. There are good days and there are bad days on this road to wellness and I am learning to be patient, loving, kind and gentle with myself in the process, while managing my expectations.