Raking grass memory

 I was sitting on my desk in my sterile room.  Desk with empty drawers, plain chair without a cushion.  Bed with one stuffy. Pillows piled perfectly to support lungs.  Mom keeps saying she's going to buy a plastic cover for the mattress, but so far it's just a dust cover, thank goodness. My closet is full of my stuff, but it's taped closed for now. My dresser of clothes is in my sister's room next door. No dust. No allergens. 

I'm sitting on my desk because if I'm up this high I can see my siblings in the backyard. It's Springtime. My worst time of the year. I'll probably be in here for weeks. Usually a month plus. My siblings are supposed to be raking up the thatched grass, and they are, but mostly they are throwing it at each other. 

They're raking it into piles and jumping in and burying themselves. They are filling up the wheelbarrow and riding in it. I'm crying.  Big tears rolling down my cheeks as I watch with envy and self pity.

Then they are called in for dinner.  Everyone is sitting at the dinner table eating. They are complaining bitterly about having to do such a horrible chore. I'm still alone in my room. 

I was telling this story to my Dad the other day, and wondering why I was in there alone. Couldn't one of my siblings been allowed to stay inside and play with me? Did I have to eat alone every meal? I know my Step Dad may it so that we had lots of "Fresh Air" and the doors couldn't have been closed for just me. That he insisted that we have as our only source of heat wood burning stoves. He made the enormous sacrifice of smoking outside. I should feel honored, right?  Too much sarcasm?

If someone was asked to stay behind and play with me, would that have been another chore? Would they have fought over who got to stay in with me? Would they have fought to not have to be with me? Would that have made being sick more or less desirable for me? What if I had my own tv in there when I was sick? What if they were allowed to watch tv with me? There was a tv in the basement and I wasn't supposed to go down there, but maybe my show would have been more desirable to someone? Would I have tried to bribe a sibling with a show?   I'll never know. I never even thought of it. It never occurred to me that I could have anything any different just because I was so limited.

Better name for Munchausen Syndrome is Factitious Disease?!?

 March 2021

Over the last couple of weeks I've really come face to face with my "Munchausen Syndrome" or Factitious Disease.  I started seeing (through video chat) a new doctor.  My sinus specialist referred to him as an asthma god. I'll refer to him as AG. AG told me that if I was using a rescue inhaler I wasn't having my asthma managed properly.  Well, I think I need to be more clear.  He told me that if I was finding it hard to breathe AT ALL I was being seriously mismanaged.  He hopes to get me on some fancy drug that stops inflammation before it starts.  He expects that I won't need to take an inhaler for being short of breath.  I can't even imagine that.  

A few days before I talked to him, I had a conversation with a women from his office.  She told me that he would probably want me to throw my Ventolin out the window.  I laughed, and said that I'd love to, but immediately started to feel anxious. She assured me that I would have it as long as I need it.  It really got me thinking though.  How willing am I to give it up? How much would I give? How hard would I work? It used to be that I wouldn't admit that I liked having it.

When I was in grade 6 or 7 my friend asked me if I would trade something to not have asthma anymore.  I can't remember what I was supposed to trade.  Maybe it was that I would be less attractive on the outside and work better on the outside?  Whatever it was I wasn't willing to trade.  She looked at me shocked and asked why not.  I think I said something about not ever knowing any different. The way she reacted I knew I had said something wrong.  One of the first times I needed to think quickly to cover my tracks. To hide that I was something, or felt something that other people didn't.

I had little desire to be healthy.  How else would I be different? How would I get attention from my Mom?  At that age I wasn't doing anything to make my health worse. Not consciously.  At any given time I was going to be sick at some point in the next couple of months. It was inevitable.  There wasn't much I was missing out on from being sick. I was used to it, and I there were plus sides. 

I rarely felt sick when I was in the hospital. I was pumped up on adult dose steroids. I had room mates to talk to that probably were nicer than my older sister. I had a play room and lovely nurses (mostly) and food brought to my bed. I got visitors and my Mom and Dad would visit me.  It was pretty great. 

Except all the times I was stuck in the hospital for weeks, or stuck in my sterile room for weeks. Or couldn't go to sleepovers because someone had a pet. Or how I missed out on so much. How much I hated it. How much I cursed being born that way.  How much it ended up hurting and sucking, and taking away.

I have to say that I am really and truly so excited to tame my asthma. I'm at the point with my MS that it is in remission, but still hard to live with day to day.  The only flares I have is when my immune system gets triggered.  My asthma getting flared up from allergies, flares up my MS. If I didn't have asthmatic flares, the only thing that could get my MS symptoms is a getting a virus, which is hopefully going to be easier to avoid. 

I've been wondering about getting a proper job again. Maybe even having a real career.  I've started looking into voice work. Maybe I'll start recording audiobooks. Maybe I'll get work clothes on and go to an office and interact with people sometimes!  Maybe I can be in a relationship and not feel as if I don't have enough to offer the other person. 

I've started my new inhaler, Advair.  I've been on it before, but didn't like the side effects.  I think it made me shaky?  We'll see. I hate taking Ventolin since they have changed it, so I might as well try to go on the long lasting inhaler.  The plan is to take the long lasting steroid/ventolin type inhaler twice a day, morning and night. Hopefully that will stop me feeling tight chested most of the time.  

This is the third day I've taken it, although I'm only taking it in the evening right now. I seem to be getting used to it.  I hope this keeps working! I plan to add the second dose in a few days.  

Step one to a new life!!!