Pain and communication: effort for friends, for CFS/M.E./Fibro

I found out today is Fibro/CFS/M.E. Day (May 12th), I was away at medical appointments and doctors for so many hours today I didn’t find out until now. I came on to explain that my 'real' post will be delayed. It is on my “Brain Board” and how I am able to function without a functioning memory of certain kinds. I will try to write it tomorrow or a bit on because I am in too much pain to articulate words. Or articulate clearly. Or think clearly.

This is not a sympathy or pity thing, this is just a description as best I can of what is. I woke this morning after five hours sleep from the pain, and pushed a bit more painkiller, dancing on the edge of what my liver may or may not be able to handle (if I am wrong, organ failure). But with that and sedative I was in and out of consciousness, pain in dreams and life.

There is a feeling of being pushing into a vat of something like Jello but it goes through the skin and the muscles, tendons and nerves just scream in pain, and yet you are just lying there. I made the picture cute because in reality, it is why horror films are comedy to me. Impaled on a stake for hours, oh yes, I know that feeling. That's one of the less painful ones. You just lie there, no way to escape, nothing you can do. And you get dreams no sane person should get.

I got up due to a blaring clock alarm to prepare for my first medical/medico of the day which took three hours plus and left me trying to vomit up whatever was making my nerve hum like when you hear scratching on the blackboard or touch something with electricity. My fingers were blue and purple. This is when I found out that I had another appointment after I got home and ate. Since I hadn’t showered in a few days with greasy hair, not so high on self esteem. But gotta do what you gotta do. I went to the walk-in clinic because we haven’t explained as yet to the owner that a person whose baseline is right on the live/die line and who has to be brought BACK from dying a few times a week, like I will tonight or tomorrow likely, does not do well in a walk-in and wait clinic. The times I need care or medicine most, I cannot come down. If they can’t accept the legal authorization of Linda then should I have the two Ambulance People who bring me down in the rig and I wait in little waiting room on the transport bed wait inside or out? Because when I NEED, as I did today, a medicine which is a ‘temporary measure’ for my heart until the pacemaker (once we have the little things like the thyroid and anemia fixed) runs out, I HAVE to go to ER.

But I sat there with my portable oxygen on my lap looking three shades from death and when we got into the room, we saw a NEW doctor, who turned out to be ex-military and a few other things. I will have to say this for the Canadian Military; they are support military and have been for many decades. So a military engineer who did my crown lengthening had built bridges on permafrost, on sand, on every surface and he had 16 certificates of education on his wall, and so if he said it will hold, it has held. Canadian support know, if you need X - take twice that just in case. So today, the doctor understood that terminal patients who can only go out once a week can’t do the ‘monthly refill’ game when I have literally small CUPS of pills I have to take four times a day.

He gave us six MONTHS supply of the three pills we requested. He got that if I go to Sakura-con and I need 27 pills, I take 40, because I don’t know what could happen. He gave a heart med and ativan for seizures and diazapam for sleep and then asked me if I was depressed. I told him that yes, when the head of a specialist clinic who sees thousand of people with autonomic failure tells you that she is going to find the name of ANOTHER specialist for you to see who can tell me why I have central AND peripheral autonomic failure AND peripheral neuropathy. And when she comes back with NO NAME, I realize, eventually, that this is IT, that I am just ‘life shortened.’ In fact, facing this Canadian doctor I felt like saying, “What am I doing here, medicine is about getting BETTER, and there is NO WAY FOR ME TO GET BETTER!” But instead I told him yeah, facing that makes me depressed at times. Linda chimed in saying that SHE gives out the drugs. He said that if I had NOT said I was depressed, he probably wouldn’t have given the pills to me as someone facing what I am, how could I not be depressed, it is only human? (Wait? No lecture on how 10 Ativan for seizure cycles is going to make me an addict? Assuming I am a rational human? Quit that and come back here and act like a Doctor!)

In the elevator, at home, a hour later, prescriptions filled, mission finished, I remembered that and I started crying and cried for 10 minutes because that was the first time that a doctor had asked me, seriously asked me, how I was doing? How this was effecting me emotionally? Expected me to have feelings. Basically, the FIRST time a doctor had indicated they gave a damn about ME.

Linda and I both knew that I would be paying with pain and body function loss for those two visits: today, tomorrow, for some time to come. I slept, then woke because of the pain. Pain from every part of my body that can send signals, from muscles, from tendons, from bones it seemed though they say that is impossible. Linda helped me from my bed to here, in front of the computer and so I am trying to say that I can’t write today. Haha (takes 700 words to say that). I can think a few words at a time. The sounds of the air pump which is keeping my purple hands typing and me not passed out is unbearable, wheeze/hiss; wheeze/hiss – it is the quietest one on the market and yet just the sound hurts me. The pain has literally exploded within me, ripping me open, leaving jagged marks…….leaving no marks at all, because it will happen all over again.

I think this is a feeling people with Fibro/CFS/M.E. know, because we take the same drugs. I take the same pain meds and probably we both feel at times that it is a joke, to have medication and yet be in so much pain that to type hurts so bad you have to grit your teeth, and blink the tears as a wave hits. I think maybe this is the pain of part of me dying, of nerves dying, but maybe it is just the pain of some unknown disease that tells the nerves in muscles, and tendons and fingernails to scream (yes, I wish I jested, but the tips, the middle, the bottom of my fingernails or the skin under them ache and throb). How is it possible for that to be and for all my tendons to hurt and for all my muscles to hurt and to still be sane? I don’t know, I don’t think it is. To me, right now, the pain is not a cloud or a cloak I wear, it is a contained explosion, a nuclear reactor, burning on and on.

I think of the Halifax Explosion, which to those of Canadian History will know and those who don’t here it is, in Dec. 1917 a french ship carrying munitions caught fire. At 8:50, one of the people who knew what the ship on Pier 6 was carrying told the telegraph operators that the Mont Blanc was full of ammunition and on fire and to evacuate. At 9:05, the ship blew and everything in Halifax on this side of the hill simply disappeared. A city gone. Many of the buildings, trains and ships near the pier were literally vaporized, while those further up the hill managed to retain some shape. People killed: 2000; injured 9,000 – this was 1917, it was December 6th and there was a snowstorm the next night.

I mention that because to me, people WITH fibro/CFS/M.E. who do grit the teeth and somehow make the words come, one after another, are fighting. And that fight is not just to get out of bed or articulate but fighting to save, to hold on and refuse to give up part of themselves; part of humanity. I am reminded of Vincent Coleman who was a Railway dispatcher and had been told to evacuate, and others in the office, including his own boss, left. He return to his station because the #10, an overnighter from St. John’s, a train carrying hundreds of people, would pass the pier. It was due at 8:55. He sent out this message:

Hold up the train. Ammunition ship afire in harbor making for Pier 6 and will explode. Guess this will be my last message. Good-bye boys.

Coleman was less than 800 feet from the ship and was obliterated, in the explosion, his watch found later had no hands on it, smashed flat. However, every station on that train line which received that message instantly had the semaphore switch from All Clear to Stop. All down the line they changed, BANG,BANG, BANG all the way to Truro every Halifax train was stopped. This is the recovered telegraph key that Coleman used to send out his last message.
I told you that because it isn’t just history, every time a person with Fibro/CFS/M.E. fights to get up, fights to communicate, fights to be out for an evening they know the cost they will pay. And yet, no one else does. Fighting to be visable, the payment, contained explosion of suffering behind closed doors and windows. Coleman was not even the head of the station, just another operator of the telegraph. Coleman, in his message saved hundreds to thousands more as relief and aid trains were dispatched to Halifax; six trains that day with doctors, supplies, firefighters, nurses and other help.

I have no choice about the pain, it creates a static which can block out my ability to communicate, to help myself. The pain is a bridge I walk alone, tenuous, difficult, requiring complete commitment and concentration and yet, also knowing when to rest, or I will fall.

Today, the message got through: I have blood test orders which if they come up as expected will result in synthoid and I hope a blood transfusion to deal immediately with the anemia. As well as six months of pills for three of my prescriptions and a doctor who will look up my disease, and who believes that medicine is art and science, that it requires treatment to expect results. The message got through. But now I must pay the price. The body burns. I don’t know for how long.

I will try to return when I am able but you are my friends. I cannot, simply cannot contact everyone individually but I wanted you to know I have not abandoned you, or caring, or left. Now I must stop now, because I have done too much for too long and even fighting the pain, with the maximum of pain killers, I know that every 20 minutes adds another few hours of immobile pain to my future.

Rachel Creative tells the life with the minimum of words using her art and combining them with brilliance at her blog post here. I recommend viewing it because it is something that needs to be seen; if I could I would put it on billboards or on underpasses, on pavement, so people could experience it step by step.

Unlike Coleman, I WILL return.