I slept actually pretty well last night. After nearly two months of the onset of meningitis, the full blown attack, and subsequent 3 days of infusions of steroids, I haven’t been doing much sleeping. Last night, I slept nearly 7 hours straight.
It’s been a hard couple months of realities I’ve come to learn that don’t have a lot to do with things I can change, but it’s been leading to bigger fears I never thought I would have to face. I believe I have medical induced PTSD.
I really thought having a difficult time finding community was all about me. I have definitely become excellent at blaming myself for everything even though I feel like a good person who is interesting and has things to offer.
When the overwhelm of chronic illness became too much towards the end of October, I started seeing a counselor who didn’t give me motivational speeches about how “I would heal” or “how strong I was to overcome anything”. Last week as I cried about how awful meningitis has been on me and how the new community I was beginning to connect with seemed to run again, she explained, “Lizzie, your illnesses scare the hell out of people”. When I lamented that I do have good qualities and feel like I have gifts to share, she 100% agreed. She also said she knew people genuinely cared about me, but they just couldn’t manage seeing my reality.
I understand why it’s hard for people to step outside their comfort zone to help someone who seemingly never gets well despite always trying to greet people with a smile as I’mso happy to see anyone. At 43, I’m also facing the reality of figuring out long term care, something usually reserved for retirement age, which I was trying not to future think about. My counselor said this isn’t so much about future thinking, this is my reality.
The tough reality also hit that I have a very rare disease that when it hits hard in adulthood, as it has me, it mimics the progression of ALS or Lou Gehrig’s disease. I have CMT4J. People have had a hard time believing I have been as sick as I am as people understand autoimmune diseases a lot more now, people definitely understand cancer, but when I explain that I have an extremely rare variant of a neurodegenerative muscle wasting disease with an unknown progression, I may as well be speaking the most foreign of foreign languages. I have been misdiagnosed so many times, it’s hard to take me seriously. It was hard to take myself seriously honestly. I can’t really explain what I have. I’m grateful I will be speaking with about the best expert possible Friday morning. I really don’t explain it to people. It’s too hard.
They are searching for a cure. I’m hoping to help in some way to assist in fundraising for that cure. Maybe the cure will come in time for me too.
I’m working hard to appreciate the moments I can write a blog and communicate. I am also grieving a body that is so rare and complex that it’s misunderstood. It’s hit though. I have a big medical problem.
I’m interviewing someone to walk my dogs this afternoon despite someone else promising to do it. I’m realizing that if I’m going to get some practical help, I’m going to have to pay for it. The lady seems promising. A retired jewelry maker from what I can tell. Maybe she will appreciate my weird talents, my life kind of stuck at home… Even if she just comes to pick up the dogs, it will be a simple hello.
There’s a neurology resident who specializes in my disease. How does one fly across the country if you don’t even have the energy to drive a few blocks up the street to get groceries? I can only hope the energy will come or someone will step up to come along.
I’m learning my symptoms can be transient. I’m grateful for an answer. I’m sad and definitely understanding of people who have suffered for many years of misdiagnosis to understand you have something that eating healthy won’t make it go away, or yoga, or meditation, or a ton of hope. I’ll continue to take care of myself, but it’s overwhelming.
I guess I go back to that place of acceptance that in 7 days, I had a lumbar puncture and 5 infusions and there is one person on the planet that checks to make sure I go to and fro safely each day despite being on the other side of the country. I’ve got one. Some people have none. I’ll count that as a blessing even in a mountain of uncertainty. Even with a disease I don’t understand and few do and even few care to.
I get it. It’s an atypical life of a middle aged pets. Being home isn’t fun. Worrying about my future is daunting. Having no clue if I’ll achieve much of anything feels sad. I keep going as that’s what I do, but I’m definitely tired. I look forward to truly connecting with the CMT4J community Friday. We might be scattered and vary in age all over the place, but I will be happy to not feel quite so alone in it!
And I will say the new grocery delivery service I subscribed to has been beyond wonderful (even though I can’t afford it :(. I put a note to just leave my groceries on the porch as I wasn’t feeling well. She went out of her way to pick up a little card to write me a note wishing me a speedy recovery. Tiny acts of kindness are exactly what we all need to keep us all going. Remember those moments.