Shortness of breath, pain in my chest and all I want to do is sigh. It must be Tuesday. Be optimistic it, you may have forgotten and it might be Thursday!
After a very productive day filled with manuals, paperwork and more manuals, I am grateful to head home; put up my feet and relax with an old fashioned murder mystery. (I love them, anything from Murder She Wrote to The Clue Movie)
As I am watching Mr. Jones asked what I am watching.
“Miss Fisher of course.” “Haven’t you watched them all already.”
He answers it for me, “You don’t remember.”
Nope. I have holes in the left side of my brain. Small ones but they still let some items squeak out. Most days I remember items like an elephant and others it takes a bit more processing. I am the list queen!
As I mentioned in my previous writing, I have some other issues I deal with. I hate using the word chronic illness as it sounds so definite, even if it is, I do not like that term. It makes me feel like I am so sick, waiting on my death bed. Yes, some days I am sick and others I run like Speedy Gonzales just like everyone else, oh who am I kidding, I pass them smiling and thinking you can’t keep up.
When I was younger much younger I was enjoying the time with my guests and chatting with them in the restaurant. (I was 27). I began to shake so much holding a coffee pot and I figured something was off but thought maybe I was diabetic. It continued.
I had some juice, a rest and felt a bit better. After an many more symptoms and doctors appointments over a bit of time, I went blind in my right eye, I figured yup there is a problem.
It didn’t take long for my mobility to go, my right side of my body especially was affected. Walking was challenging, spasms in the abs happened all day long and never gave me a six pack. I mean that was a ton of work to hold this body up!
The weight came on due to less movements and I spent my time on a cane. You are wondering was there other things? (Lots and this is completely short listed in what I mention) Numbness, headaches, pain, loss of balance (I took quite a few falls, I always told people I shouldn’t drink so early in the morning) loss of speech, loss of bladder (the list seems endless) I felt like a new puppy, but everyday I got up and went to work and pushed and pulled myself to keep going. I cried, I screamed, I forgot.
Milk ended up in the cupboards socks in the fridge. Did I still drive? Yes when I was well, but the car got dented. I honestly did not see that tree backing up. Drugs were prescribed and I felt worse. I could not live like this.
Brave face, a smile and I kept going. Was I depressed? Absolutely, on some days and others I was so grateful because I had my family and they tried so hard to help me and make me feel better. I learned how to adapt. How to be able to cook when I was off. (This is the term I use when things go upside down with me, I am off, like a colour.)
I remember the month well when things began to change. It was December about 8 years ago and I thought about what I wanted. I wanted to be like everyone else, but me. If I wanted to do something I thought, I should have that opportunity. I did not want to limit myself, I didn’t want others to limit me. I didn’t want people to feel sorry for me. I was ready to pick out my chair as I could not walk well then things changed.
Ever see the look on someone’s face, when you tell them what is wrong with you and why you are on a cane. They are mortified, of what they are to say. Should they say they are sorry, glad you are persistent, keep cruising. No. I seem to get the awkward expressions of my friend’s sister died of that or complications. My mum spent her part of her life in a wheelchair and couldn’t do anything. Inside I am screaming thank you for the optimism! But really, people just do not know what to say because it is so unpredictable, but so am I.
They want to know will you be in a wheelchair one day? Maybe. Will you die from it or old age? Flip a coin your guess is as good as mine. Do you actually work? Hell yeah! I’m independent. Most days my mind is amazing, and functions like a new model Apple computer and then on occasion it gets a virus. Run the scan, give it the time and it is purring along again. Just like me. (Normally I would not have used Apple but have heard they now get viruses, what is up with that?)
Ok back to my story.
We bought an elliptical and Mr. Jones would put me on it and give it a twist to get me going. I worked hard or as hard as I could. I was determined. Let’s face it I am one stubborn woman!
Things got better, things got worse, I was just getting more talented at hiding it. I journaled all the issues for years as instructed by my numerous doctor’s, scans and appointments. I tried to be positive and then there were days I couldn’t, and felt sorry for myself as I laid in bed and couldn’t walk. Then felt bad, for feeling sorry for myself. I would lay there and remind myself your body is just trying to tell you something because for heavens sake you just don’t listen! Once up and feeling better, I would go like a bat out of hell.
I have one life to live and I choose to not miss out!
Do I still have symptoms? Yes all the time. Do I still hide them? Totally, but those that know me see it more, as they see my tricks. Mr. Jones he totally sees everything, I cannot hide from him.
Now as time has passed from one particular event, I have to laugh. I was so sick in the early years, he had to take me to the hospital three times one day. He was so upset he couldn’t fix me and punched a hole in our bedroom wall because he was scared. We repaired that hole and I hung a wedding picture on the spot. Why? Because he cared so much and it was part of our vows; in sickness and in health till death do us part. I think he is showing it well. Every now and then I move the picture and point to it and say you really love me. He responds with a yeah, I really do.
Someone asked me once am I mad at God? My answer was simple. No. He gave this to me to burden instead of someone else for a reason. He obviously thought I could handle it. I seem to be proving that logic.
If the time comes that I have to go into a chair, then this is what you will see. Not just a chair, one with an awesome paint job of flames, (oh pink flames), bike tassels on it and the clown horn so I can honk at everyone to get out of my way as I cruise by saying eat my dust wearing red leather gloves. I know you had visual.
If you ask me today how I am, the answer is not bad, a little tired will be what I say, even if that is not quite accurate. Some great sleep will help with it all. Mr. Jones ensured I had a delectable meal, (cuts my steak for me when I can’t, you know that is true love), gave me a nightcap, a Glenmorangie dram, and chocolate to bring out the scotch. Now I will turn in with the amazing adventures of Paddington and see what trouble he can get himself into. Hmm, we seem to have something in common.
“You don’t look sick. I know. I am just that awesome that I can look this way and be chronically ill.” Unknown (but it is something I would so say.)
Love always the stick leg but still walking, slurry talking, numb, leather wearing Woman in Process