Family and friends
I have a chronic illness
My days are long and hard.
I don't look sick, but I am.
I want you to know I
Am trying my best, I have
Days I can do some things
And I have Days I can't.
I want to work, socialize,
And participate in my life
I want you to know that I
Am not lazy or crazy. I am
Not looking for sympathy or
Pity, I just need your support.
Me: except the crazy part, I can be a little bit crazy, I own that!
The frustrating part of having a terminal illness is that you want to make the most of the time you have left and live life to the fullest, however, your body refuses to co-operate!
I find that many people tell me how good I look and that if I were sitting down they couldn't even tell that I have ALS. But the truth is, I am probably seeing you after having a full day of rest. In fact, there was a point when I was too scared to make any plans, not sure how I would feel on the day. ALS is a disease that brings good days and bad, although I'm getting progressively weaker, some days I feel stronger than usual. My good friend Jeannie once told me to always make plans, regardless of whether or not I'll be able to show up, because the alternative is not doing anything at all, and that's just not me. The difficult part is that the guilt of cancelling eats me up, I've always been the type of person who does what she says she's going to do. As my dad would say, I'm a "doer" not a "talker", and I was proud of that. Another aspect of my life that ALS is stealing from me. So to try to assuage my guilt, I am letting you know, that if I cancel my plans with you, it's not you, it's me! I try to avoid this by planning rest days before and after events, and not planning anything that takes over 4 hours. If I don't, I pay the consequences with what I call a "crash". To me, a crash is when I've overdone it, so my body breaks down, cramping and pain sets in, nothing works, and my mind turns to mush for about 24 to 48 hours.
Traveling often causes a crash, so I have learned a few lessons. Travel days are rest days, plan nothing else. Plan a rest day before and after traveling. Do NOT plan a stopover in the US. Only direct flights, or a stopover in Canada. Try to get extra legroom seating. No matter how much a pain in the butt it is to go to the bathroom when you are in a wheelchair, do not wait for more than six hours before going or you will get a UTI. And throw all of that advice out the window because no matter what you do, travelling will cause a crash. Just deal with it and keep living your life to the best of your ability!
Travis and I have been making the most of my good days by taking a mini-break in Algonquin Park, thanks to my Granny, and we named the sweet chipmunk Granny and the cheeky chipmunk Grampa. Mike & Wendy came to visit, Travis is growing a forest on our balcony, and we went to see Dunkirk with mom & dad. We've been seeing friends and family and have plenty to look forward to. We are heading to Summerland for a true Canadian vacation as we are there during "Peachfest"! And Travis's parents are coming to visit for the month of September!
I hope you are enjoying your summer and appreciating every minute you can!
For those who are interested, I have posted the 2016 ALS Canada Annual Report on my gallery page, you may see some familiar faces! Or you can read it by clicking on the button below.