Last night after posting, my pain increased to the point that even taking the pain pills I was allowed I was unable to sit up, body shaking. So I decided to go to bed, only to find that my heavy night pain pill (which I need to take 30 minutes before sleeping) wasn’t there. Linda was sleeping and my overnight caregiver was in my bedroom. In my bedroom the air conditioner was going because of a heat wave. She couldn’t hear my call for help.
I managed to transfer to my wheelchair, and got to the door. After a number of tries (pain really messes with coordination!) opened the door, calling for help. Linda and my night worker, F., came. They helped me back to my desk chair which has body support. As Linda was going for the pill, a partial seizure, started to spasm in half of my body, flowing from my arm out, up and down.
The pain by this time was so extreme I was trying to stop myself from screaming, from moaning full voice and failing and first the caregiver and then Linda had to try and hold me still. A line of pain, like a lit dynamite fuse ran up my neck and into the lower side of my head. Then, like a grenade going off in a steel box, the back of my head exploded. That apparently turned me into a full Grand Mal (This is where I passed out). And Grand Mal or a Tonic Clonic (or Clonic Tonic, I can never keep them straight) is where your electrical signals have jumped the fence. Only they have not only gotten that part of the brain misfiring, but like a bush fire have spread, signal to signal until they jump to the other hemisphere of the brain, sending the entire brain and the entire body into electrical firings so fast they can’t be replicated.
This means that up to every single muscle in your limbs is individually clenching, releasing, clenching and releasing so fast that your limbs flail about. It apparently catapulted me out of the chair where Linda and the worker where holding me. They tried to get me down on the ground with some of my limbs facing the same way, while the limbs were still going off, flailing. If this type of seizure goes beyond five minutes or if you get repeat seizures again and again you have to go to hospital because you are risking brain damage and/or death. There was, it seems, another seizure after this, and then a period of time, about 50 minutes from the first seizure until I had sufficient control of both sides of my face to swallow the pain pill I was originally looking for (in an earlier attempt at 40 minutes I aspirated the liquid from the straw, meaning it went into my lungs, not the best way to process pain pills).
Because of the repeated seizures Linda said that if I had entered another she would have called 911. Which would have made waking up someplace else (in this case the floor, in THAT case an ambulance) more confusing.
The night care worker gave me the pain pill every four hours through the night. This morning I woke in such extreme pain that though I made it into my chair and got a Poweraid from the fridge, I could not open it in order to take a pain pill, that is how bad my hands were shaking. I couldn’t sit up. Also, when I did manage to sit up to take my blood pressure, my heart was having about 30% or more erratic beats. So I couldn’t do anything but sit there and quiver, shaking in my arms, my hands, my torso, for 40-50 minutes until my care worker came in and opened the bottle for me. She helped me take the pill, stayed with me, as I, pasty faced talked to try and ignore the pain until enough of the edge came off that I could have a clear thought.
Pain wise, I would say the closest I can compare it is when you have a burn from a pan or hot water, which blisters right away. It was like that for my spine, my entire torso and arms, and if I had feeling it would have been that for my legs too. For over 40 minutes, I felt that I was literally on fire. When my care worker tried to grab my arm/hand to steady it for drinking, I passed out a little, from the overload of pain.
Before you ask, my GP will not prescribe any stronger painkiller because he is waiting for the pain specialist. But he forgot to talk to him in the last several weeks and when he called earlier this week found the specialist was on holiday until the 19th, so when the specialist returns, he will book me an appointment. Which will be a month from the 19th, if I am lucky.
After the pain killer kicked in it felt like I had one of those sunburns on my skin where the liquid of white blood cells and mucus forms under your skin, it was so bad, so painful. I could not turn my head to speak, I sometimes just sat. I talked to the worker to distract myself, to make another minute pass. I thought of a friend who said that once her pain reached a certain level she started making plans, if it was at that level in X months, she would kill herself because she couldn’t live like this. On the one hand, I could understand her, on the other, I couldn’t understand how she could wait SIX MONTHS. But then, by afternoon, I had my second wind, my "piss off" attitude and was like, “What, you think pure agonizing PAIN is going to stop me?” I was actually trying to look up 5K and 10K races for this weekend, like Saturday merely on the basis that if I am in so much pain I am screaming ANYWAY, why not get some racing/socializing in?
I was contacted this afternoon by the Epilepsy RN for BC, and found out lots of not great things. That since the seizures seem to be a part of my larger condition, the increase in them (degeneration) is likely not going to be reversed, or eliminated. But that the right drugs might cut the number down (My GP has decided until the specialist Neurologist consults, he is not going to prescribe but wants me to write up a list of all the different types of pain I have). The RN said is a voice of horror, “Your GP SAW you having a seizure in his office and isn’t treating you? But that sounds like they just want to keep watching you to see how many and how many different strokes you have?”
“Yeah, that’s about it.” I said, “And just in case you didn’t know this already, the seizures HURT.” She did know actually.
Well, it seems if they use the wrong drug, my seizures can INCREASE. I am pushing for a drug called Lyrica because it not only acts as an anti-seizure med, basically stopping partials from becoming Grand Mals (this is GOOD!), but is also an anti-nerve pain medication used for all sorts of nerve pain including Fibro (less seizures AND less pain - I am FOR THAT!). The not so good news is that because I have seizures while asleep, I am not supposed (the word “can’t” was used) to sleep alone. Because now the seizures could cause brain damage or death while I am sleeping. Yum!
So I wasn’t really productive today unless thinking or saying, “Oh God let it end!” about a thousand times is productive? So that was the “not great” news.
On the OTHER hand, I did get a present today, one I bought myself online. It is a notebook from the animators of Air TV, and Kanon 2006, and it has sparkles in the hair and lots of cute rabbits, it is 10.5 inches by 8 or so (Kawaii!). While I can’t imagine I am about to write a “pash” diary about how in Bio Class today Sandi flipped her hair and she is SO cool and how come she never notices ME! And then use hearts instead of dots on my I’s, I am sure I will find SOME use for it.
I also worked on postcards which by now people are probably going, “Yeah, we KNOW, you do every day!” Okay, I will put a longer post on my Postcard Project blog but I processed a lot of cards up to stage three in hopes they or many will be ready to head out Saturday! Here is a selection of some of the cards going out. I like the cat in the lower left very much, because not only has he, like most cats taken completely over, but is also complaining about the quality of the tea/coffee he is getting. Just seems very cat like. Also like girl with flute...Linda has a wooden flute.
I also got to play with some new block prints, and now I have a “bloody thumb print” and a train to add to my collection of fun things to put on postcards. Okay, yes, I am a little obsessed with the cards but hey, people seem to like them and if they don’t…well, I am convinced like a form of fungus, the joy of it will start to grow on them.
So ending the day still in immense massive pain BUT worked on 18 postcards, AND did some more work on certain “surprises” I am trying to get done. So that is where I am at. Now I am going to go stare at my notebook for a while and see if the pain drops at all. I sure hope it does!
3 hours ago