Dear Friends,

I cannot believe it has been over a year since I wrote last. I apologize for my absence. I honestly wasn't sure if others were reading my posts. (That's my old companion insecurity popping up over my shoulder. I'm sure many of you know him.) Then, life happened and I got caught up in it. Not to mention that I forgot my darn password AGAIN!😧 I was embarrassed asking for help changing it, AGAIN. Silly me. Then, at the beginning of the summer, I had a major medical emergency and I'm just now getting a more regular schedule-ish; well, as regular as possible since the recent complications. (I will reflect on the medical emergency in another blog. It had a profound effect on me.)

It's odd how living with a complex medical situation for the past ten years or so has changed me. Now, knowing what I know about my Autism and CMT, I look back on my childhood, teen years and my twenties and I see how these conditions effected me. I was considered awkward, socially inept with group dynamics and mainly, just weird. I didn't understand a lot of games kids played, or I wasn't asked to join. I didn't know the words to a lot of songs, because I had auditory processing issues. I dressed strangely. My hair was out of date, etc. Of course I am still odd, but now I've grown old enough to be eccentric. Whoo-hoo! 🙃 Now, being ill and looking different from most "normal" people due to the CMT atrophy, I now fit into this other category: I am severly disabled.

I was often completely ignorant of the effects of my Autism. Once, a boss got upset at me for suggesting something that made sense to me, I thought I was helping, but in her mind it was overstepping a boundary. Apparenly it was something very obvious to most people, but not me. So, I was "spoken to," but I just didn't understand what I had done that made her so uncomfortable with me. She wouldn't talk to me; she seemed freaked out by me. I was so confused and the issue was never resolved in my mind. We were put on different shifts and if ever we crossed paths, she looked the other way.
I remember people misunderstanding me in college, or saying I was being rude. I learnt from someone close to me later on that lots of people didn't like me, because they thought I was stuck up. I was shocked and confused. Why? I thought. I suddenly felt so strange, and hurt too. I couldn't understand why no one had approached me about this; apparently most people don't do that. Perhaps my feelings of insecirity weren't completely unfounded. Perhaps I am better off alone, or so I thought...

Then there's the CMT. I remember being clumsy, but I could dance. (I would rehearse myself silly to be perfect at the next class, only to have something new thrown at me.) I improved, but it was exhausting and I was not as strong as others my age. I was tripping more than any other girls, so I stood out. My ankles got injured often. My feet were too flat. My arms got tired. At school I nearly passed out during choir, because I locked my knees to keep myself upright. Why? I couldn't stand as long as everyone else without my legs getting wobbly and weak. I thought I was just weak and clumsy. It turns out I had a disease. Would this have changed anything had I known? I don't know. It's the past, so I don't think it's worth upsetting myself over could've, should've, would've, but it is interesting...

So, here I am years later. Not only do I have Autism and CMT, but also a host of other fun medical issues: aphasia, chronic pain, chemical sensitivity, food sensitivity, tinnitus, vertigo, CRPS, FMS, seizures, bowel&urinary urgency&incontinence, etc. Many of you probably have a number of these lovely gifts as well. My days are consumed with ADL's, and IADL's when I can get to them. It takes me 3 hours just to get up, do my bathroom routine, clean up, get my service dog set, make tea and breakfast, and eat. By then I am exhausted, and when I finish? I have to make another trip to the bathroom, take care of my baby girl again, and if I have the energy, I get dressed for the day. Then I have to make sure the next load of laundry is in the wash so we can have clean towels and clothing, and get my feet up again. Just getting in and out of bed and situated where I sit, takes about 15-20 minutes, each time. By the time I finish breakfast and use the loo, it's nearly the end of the day!

I remember a time when planning outings or holidays was fun, but as my conditions change, going out is more of a chore and less fun. The thing is, I don't remember when life changed so drastically for me; was it abrupt or slowly progressive, like my CMT? I am not sure, and it's not really important. However, when I went to look at the last time I wrote here, it became blatantly apparent how drastically life has changed even just this past year...

I am not sure if I've already said this, but I don't think of myself as disabled, as odd as that may sound to some. I mean, I don't wake up and think, "Oh, poor me. I am disabled. I am going to have to get in my darn wheelchair in order to do anything, and I have to put on Gloves for Life in order to get into my chair and accomplish tasks other than sleeping..." In fact, I don't even think of myself as ill; I do not have the time, because I am too consumed living my life.

My life completely revolves around getting through each day; that takes up ALL of my time and energy. It has become clear to me most recently since the changes this summer and as my conditions continue to effect my body and I slowly deteriorate, that I am indeed disabled, severely disabled. In fact, not only am I silently shunned or stared at by many "able-bodied" individuals, but also by others in chairs. Someone told me it may be because they see in me what could happen to them and it is scary. Perhaps, I do not know. I do know that this life, my life has not been easy, and it is getting harder every year. I worry about losing my independence. I worry about losing loves ones. I worry about a lot...

Still, if I get enough sleep, which is 12-14 hours now, and I am just at home doing my thing, my ADL's, I am okay. I am extremely grateful for the few in my life who TRULY love me. You know, the ones who get me as I am, accept me and take time to actually visit. (I have one friend who visits when she can, but I know that is one more than some others.) I get pissed off and I scream and I yell, but I also cherish the small, quiet moments. Last night after a LONG day out, I looked up to see the crescent moon and it was beautiful. As tired as we were, my niece is visiting, we watched it and wondered at its beauty before heading inside.

I have always known that life would go by quickly. Adults would scoff when I told them at five and six years old that I was scared of how fast life went, because they said, "You have PLENTY" of time left to live. Your life is only beginning. I don't know how, but I just knew they were wrong, so I felt they were lying to me. Maybe they were, or maybe they truly believed I had a long, happy, healthy life ahead of doesn't matter now.

Now, what matters most to me is living whatever life I have to the best of my ability; I know this is different for everyone. Do I wish I could work? Absolutely. Am I physically and psychologically able to do this? No. In fact, I have exhausted myself typing this out. I am in excruciating pain, I am thirsty, I am shaky and my bed sore needs redressing. I need rest. I need to remember to take care of myself; we ALL need to do this.

For me and those of you like me in some way, life is different; it is slower and more primal. So, I hope and pray we can each remember to cherish those special LIFE moments: snuggling with your loved ones, enjoying a hot cup of tea/coffee, watching the moon/sun rise, reading a picture book, laughing when you can, telling the ones you love that you love them, passing on what you've learnt to those who will listen, and listening and learning from others.

That's me signing off for now. I need to go take my meds and snuggle with my bed buddies whilst they are here. I really do not know what tomorrow may bring, this summer taught me that. So, I do my best to live in the now.

Peaceful Blessings to All who read this and thank you. Namaste