Of course I had this beautiful idea in my head of what I was going to say, but since I’ve had the experience of going through meningitis (according to my neurologist), it has completely left me from just 2 minutes ago. Forgetfulness and terrible headache seem to be my lasting symptoms!
I know when I had stem cell injections 2 months and 1 day ago, I never really identified as a sick person. I clearly was. I’m on disability. There’s no chance I could work a full time job as much as I wish I could and desire to. I just kept thinking I would be well. I was given stem cells along with the hope of a perfectly healthy life. I know the medical provider believed it would be true. I was so hopeful.
Before I move into the acceptance part, I will say, the stem cell process has been far from perfect, but I did regain the use of my right hand. For me that’s a miracle. I won’t get into all the details of it, my right hand was slightly functional to an outside observer, but it was actually useless. I was grieving that I was going to have to give up writing as I couldn’t master voice recognition software. My right hand is wonderful and useful and love not even second guessing if it will work or not.
I have had strange illnesses, symptoms for a lifetime. Most people might have been in a medical hospital once, had a surgery, maybe at my age of 43. It’s more likely, you’ve had a visit to the emergency room or a handful. I’ve been admitted to the medical hospital more times in my adult life than I can even remember. It’s mostly been because some respiratory infection, stomach bug, or cold went really bad and had to be there for a week to get stable.
Even with having an actual diagnosis (which is among many), I’m realizing I am sick. I will continue to take great care of myself in the best ways I possibly can. Yesterday, I was determined to go back to my regular iyengar yoga class even with my severe headache as it would be 2 months since I had gone to something that was once an integral part of my life and healing. One particular classmate made a poignant effort to check in on me via email. When I showed up, I was met with lots of smiles and huge hugs. My teacher smiled too and said, “see, we are like a little family”. People probably wrote off the comment, but for someone without family, to have disappeared for 2 months and be met with such joy is family enough for me right now.
You might not care, but I have what’s called an “orphan” disease and basically means it’s so rare that very little is known about it. It’s called CMT4J. I had the wonderful opportunity to talk to a woman on the east coast who knows a lot about this disease. She normalized a few things for me, but it’s primarily been studied in children. While I had symptoms as a child, my symptoms have exploded as an adult like having the immune dysfunction of getting so sick from seemingly minor things.
In not having the stem cells be a miracle cure came a ton of grief, but there was also a ton of acceptance in that I won’t be well—ever. As I sat on my second day of steroid infusions and had painfully bumped my arm as they keep the IV in, I realized healthy people don’t have IVs in their arms for days. This wasn’t a one time thing. I do this every month with my IVIG with an IV in my arm, but I somehow still didn’t feel “sick”. I have bad veins, and the infusion nurses had mentioned possibly getting a port placed. Yeah, healthy people don’t get ports I’m thinking?
So acceptance for me brings peace. Doing that above, chaotic painting about my experience of meningitis of being pretty clear in my mind, but I couldn’t talk as it came out a jumbled mess of slurred nonsense was confusing. My emotions took a big hit. My writing stayed clear, so I think for some, it was hard to understand how sick I was making me not understand how sick I was as I would get a moment of clarity. After my IVIG infusion during that time, I had two glorious days where I had energy to go outside. My head still felt like an atomic bomb inside but being in the middle of nowhere felt more peaceful than home.
It was funny as leaving yoga, which tends to be a class of people with various aches pains or joint problems, I overheard a lady say to another, “I did a weird thing yesterday, I stayed in bed all day. I’m so stiff”. It’s where my acceptance of being a sick person really hit me as even in my best times, I HAVE to figure in 2-3 days a week where I stay home in bed as my body won’t function without that kind of rest. Am I just doing nothing? No. I usually get a bit of stretching in, I read my books, sometimes I do a project, I write, I’ll make aromatherapy blends for people, I attempt to reach out.
I love people. Being social is like food for me. I also know that with what I’m managing that being able to do that with any kind of regularity is dwindling. A lot of people I know are very committed to many things, and I love that for them. I realize I kind of live life from the outside looking in. I make lots and lots of observations about how the world around me operates and how I once lived that way too. I’ve wasted a lot of energy the past couple months trying to check in on people, who probably do care about me, but they don’t have an investment in me. I can appreciate the care. I also know my energy is precious and have been saying forever I have to budget it more wisely than money. I’m going to finally honor that and stop pursuing dead end friendships. I had a chronically ill friend when I was in better shape that I was willing to travel to go see when I knew she couldn’t get to me. I didn’t totally understand what was going on just as people don’t understand what is going on with me. I’m ok with it. She got very angry at my not understanding. I’m not angry, I just understand actions speak louder than words. I’ve been trying for months. Acceptance.
I’ll get to a place where people will come by and check in on me without it being a hassle and get to really enjoy my company when I can go out. As the counselor pointed out, I have lots to offer people. I’m also strange in that I don’t watch TV and would prefer a book and to sit lost thinking about my observations about the world that rushes around me and how I can organize myself to get some of my more lofty goals met. Thats where my energy has to be focused right now. I have a book to finish. I was encouraged to do some speaking. Someone is trying to get me into a yoga teacher training school. Why would I spend my energy on friendships that don’t exist? Acceptance.
And true acceptance of being sick comes when you spend time looking on amazon for chemical free disposable bath wipes and dry shampoo as you recognize that you want to get out of the house, but showering everyday is too much energy. If I shower, I can’t go out! Acceptance.
I always thank the supporters of my blog and supporters of me whether you never have time and you just think about me, I see you occasionally, or you are my designated “stream of consciousness person” or somewhere in that spectrum. I know without some sort of community even with as lonely as it can be as a self identified extrovert, plenty of people wouldn’t be thinking of me or I wouldn’t still be gimping or wheeling along depending if I’m using my forearm crutches or wheelchair.