The past week or so has been rough. Twice I’ve gotten super sick while out on short trips and had to lay down in the backseat and pray I didn’t throw up till we got home. When getting out of the car I was so dizzy I almost collapsed against the car. Chronic vestibular migraines are no joke. Feeling pretty low but hanging in there. I wish the depression and isolation didn’t set in during flare ups like this…honestly that can almost be as bad as the illness itself.
A few posts ago, I shared some information about an Asexual Book Club I started on Facebook. Well, I enjoyed it so much, I decided to start another Facebook group book club centered on the subject of living with disabilities.
The Living with Disabilities Book Club will be reading and discussing a book (fiction or nonfiction) every month about someone who lives with a disability (physical or mental). Please join if this sounds interesting to you! Our first book will be for February and has already been chosen: “Ido in Autismland – Climbing Out of Autism’s Silent Prison” by Ido Kedar.
This morning I woke up thinking about my online reputation and what I would like it to be. When others read my poetry and personal blog posts (especially the ones having to do with mental illness, autism, or chronic pain/chronic illness) the things I strive to represent are honesty, openness, relatable vulnerability, realistic hope when possible, comforting solidarity, the healing power of sharing our pain, and the courage and inspiration to keep going, even when things feel hopeless.
However, since I myself struggle from mental illness and chronic pain, being transparent and honest means that often my viewpoint comes across as dark and bleak. I don’t try to hide that or tone it down when it happens, because to me, that is part of being honest and vulnerable enough to share what the experience of dealing with those issues is like on a daily basis. Putting a happy face on it would be lying.
My only worry is that sometimes the reality of dealing with daily mental and physical pain is that you can start to sound whiny. Part of me says, “well, of course, you are going to sound whiny now and then if you are in pain all the time! No shit!”, but for some reason our culture makes whining out to be such a negative thing that most of us want to avoid that look at all costs.
Maybe we as readers and audiences have to decide rather we really want full honesty and openness (even if it includes some whining and negativity) or if we pretend to want the truth, but in reality just want a short, scrubbed clean, feel good version of life. I know which I prefer, but I guess everyone has to decide for themselves.
Just 17 days after my last ER visit for the same reason, I had to pay another visit this past Sunday because I had yet another migraine lasting 3 days or longer. This is getting to be a habit and that is really not a good thing. Some of these migraines are lasting longer than 72 hours which puts them into a dangerous category that less than 1% of migraine sufferers have called status migrainosus. Reportedly this is one of the 4 ways that migraines can actually kill.
Needless to say, this is not reassuring. I am meeting with my doctor to reevaluate my meds and hopefully that will help, but who knows. I’m afraid to get my hopes up at this point. If I’m not as active on WP, please don’t think it is because I am ignoring you all, I am just not up for much right now.
Three days straight of migraines that won’t go away. They’ll ease up a bit when I take migraine medicine, but then they come back. Sadly, my migraine medicine (Sumatriptan) is one that you aren’t supposed to take more than 4 pills a week, so I don’t know what I’m going to do if they keep coming back. Please keep me in your thoughts and prayers. If I’m not very active on WP, you’ll understand why.
This week has been stressful. First off, I have a sick kitty that has recently cost us over $700 in vet bills (for severe diarrhea) and even after spending all that money and giving him antibiotics and treating him for parasites just in case, he isn’t any better. The clean up hasn’t been any fun at all either.
I’m not sure if he is not any better because something else is wrong with him or because we had a hell of a time getting him to eat the food with his medicine in it. I don’t know how much of the medicine he even got down. He has a follow up with the vet this Friday, so we’ll see what they say. Maybe they’ll give us another way to give him the meds or run more tests to see what is going on. Either way, more $.
I have also been struggling with exhaustion, full body achiness, and general malaise since our trip on my birthday near the end of October. My CFS/ME is flaring big time. Chronic fatigue syndrome sucks and the name is misleading, because it is so much more than fatigue. It is more like the worst flu that keeps on going and going and coming back again and again.
Wish I had better things to report, but that’s the truth, and I always try to be honest with you all.
Yesterday I had my regular neurologist visit to follow up about my migraines and while there I was also diagnosed with Essential Tremor, a genetic condition that is often confused with Parkinson’s from the symptoms. It most commonly affects the hands, head, and voice, but can affect any body part. It can also affect balance, mood, and possibly memory.
My balance, hands and voice are already affected pretty bad at times which scares me since it can be a degenerative condition and it can eventually become hard to speak, eat, write, or in my case, make art, since I am an artist.
My tremors started out in both hands a few years ago and have definitely worsened. At first, I only noticed that I could never take a good picture because I couldn’t keep the camera steady enough to take one. It has worsened since then and affects more daily activities, such as writing, typing, pouring/drinking liquids, dropping almost everything, etc. I noticed the voice tremors starting probably a year or two after the hands.
My balance has noticeably worsened to the point that I often start to fall over while just walking around the house or even standing still. It isn’t unusual for my husband to push me back up as I start to fall over like the Leaning Tower of Pisa.
For a long time I tried to dismiss it because I didn’t want to think something might really be wrong. I tried to blame it on anxiety or weird medicine side effects. I am glad that I don’t have MS or Parkinson’s which I feared sometimes. What finally made me bring it up with the neurologist is that the geneticist I saw for my Ehlers Danlos testing a few months ago seemed concerned by how much my hands shook.
The last thing I want to do is take yet more prescription medicines, but I am considering it in hopes that it might slow down the progression and alleviate the symptoms a bit. The only bad thing is that all the meds they use to treat this condition can worsen my depression, so the neurologist wants me to get the ok from my psychiatrist before we decide on a med to try.
Well, my back is no better after 5 days, so I ended up visiting the ER last night. They gave me a steroid shot and 2 trigger point injections. It was the first time I’ve had trigger point injections and they hurt like hell! Luckily, the pain is brief, but I couldn’t help yelling out a bit in pain and squeezing my husband’s hand like a stress ball during the procedure.
Unfortunately, the shots didn’t seem to work. I’m not any better than I was before going to the ER. That makes me think that it is probably my spine causing the issue – either my degenerative disc disease or my bulging discs. At the ER doc’s suggestion, I also bought a TENS unit and have tried it out a couple times. I’m not sure it is helping either, but I figure at this point I’ll try anything.
I’m so very tired of this constant pain. This is enough to drive a person crazy.
Sorry I haven’t written in a few days. I threw my back/neck out again and it has been bad. Probably the worst it has ever been. I have been constantly downing pain killers and muscle relaxers and still no change. Usually the worst only lasts a day or two during these flareups, but now I’m on day 3 and it still hurts to move in any direction.
Naturally, this has me rather depressed too. I had appointments and fun plans this weekend that I had to cancel due to the pain. I feel like it doesn’t matter how hard I try to be social or how much I try to take good care of myself, my efforts always end up jinxed.
This is why I normally end up isolating myself, because I feel like all my health issues make me unreliable. It feels like no matter how understanding other people are, when I have to call off at the last minute several times, they start to get frustrated (and understandably so).
I just wish this horrible pain would pass.