Winter blues

When you're paralyzed, it's difficult to stay warm. Often times I'll have my heater going full blast in my little room and in a sweater and still feel tingling this pain. A lot of people take a drug called baclofen to help prevent spasms and gabapentin for nerve pain.

However, I stopped taking any sort of medication's other than my bowel movements early on in my recovery because I believe any movement is good movement and my spasms I've gotten more intense but are still manageable. Especially if I am stretched a lot, and keep my days busy doing things that are active, I find that I don't seem to get as many spasms… or if I go on long walks where are my body is being vibrated by the movement of the chair and the wheels on the pavement in the bumps we go over etc..

I did not do any mushrooms today because I am realizing they do seem to affect my bowel program. So for today's nerve pain and restlessness, because I was alone all afternoon because my main caregiver is experiencing signs of premature labor and my other caregiver who is volunteering to work tonight and her stead is only willing to work two hours.… so today I just took some edibles. They do have a calming affect for my spasms whereas when I take mushrooms I experience more movement and increased awareness and spasticity.

I'm so excited for those of you who have scheduled FaceTime calls this week! Bear with me as I look for another caregiver and try not to stress out too much about the situation. Another reason why I love the summertime more! Days spend alone inside mean anxiety and depression and those things equal lack of appetite and lack of appetite equals more fatigued and more malaise and it's a vicious circle. As much as I don't like the cold, getting out in it to shop or go for nature walks is essential for my mental health. As you can see in the video, I can get around quite nicely using my mouth controlled device on my wheelchair which is called a SIP and puff. I've gone about 5 miles total at one time and my goal is to make it all the way to the Reservoir next summer which is 14 miles one way. I think if I was with somebody on a bike I could do it. My mouth and lungs are pretty relentless once I start heading somewhere with a goal!

I am inspired by Ian MacKay who is a Washington native who has literally made Guinness Book of World Records status sipping and puffing thousands of miles. Right after I got out of the ICU I learned about him and ever since I said to myself, if he can do it I can do it. It's the old Annie Oakley healthy competition vibe, anything you can do I can do better ha ha ha. But seriously look him up and give him a follow on social media, I have no idea why he's not World famous yet. 

I might record some audio tonight depending on how I'm feeling because I do want to share more about the medical negligence that happened to me. It just gets overwhelming and triggers my trauma when I try to talk about it all at once so it's better if I tell you in bits and pieces and I'm sorry if that can get confusing. I'll try to be as concise as possible when describing situations because I am aware it is possible other trauma survivors are witnessing my narrative on this platform and certain descriptions may trigger collective trauma and cause internal distress. Which I would like to avoid!

All the love,

e,