It is clear that I must find and find quickly someone who can help me with my levels of pain. However, I am now taking food and as of today, my urine has color again, which was a mystery (where were all the toxins building up) but also, the retention is back. Weird. But as Linda says, “I don’t want to hear you waking up screaming every morning.” Who does want to hear and watch the person they love like that? 
Once my body is so sensitized or exhausted that any touch is painful (plus I had a seizure which contracted my muscles so much I was almost balancing most of your body weight backwards on my forehead - rib muscles ripped, neck muscles ripped, arms muscles ripped, little half moons cut into my palms) then any touch is too much. Breathing is too much. It hurts to push those lungs out.One of the problems I had this morning was in communication as Linda hates to see me in that pain, can imagine how horrible it must be, but didn’t realize the eventual primitive nature of pain (she does now).
There is a language of pain that only those who have experienced pain which brings you to the edge of sanity can speak
: whether that experience be from migraines, fibro, CFS, a traumatic injury, chronic illness or another form.When you get to the point where language is too hard, there is a fog, a thickening endless white of pain which becomes harder and harder to push through in order to communicate.
People, often people who want to help, don’t understand how much it takes to say a full sentence, don’t understand that the time for a debate on when did you take the last pill is really a countdown until you cannnot push through, cannot get out from the shell of pain. And you rock and moan or lie there trapped trying to escape but the long language of people is gone. Grunts, single words maybe. Mostly at least I need a person who can speak for me, who understand what the pain etched into my face, what my moans mean.At the worst, primal, a person whose reason, whose language skills have been ripped away or hidden beneath the pain, I can only rock and moan or scream or cry out for help in raw sounds
. It is then when someone who understands this can step in, like Cheryl did, as she knows what it is like to be like that. I was grateful and now I think Linda understands better what to do as well.It has been extraordinarily difficult on Linda and I have added, 3 or 4 romance books to the wishlist, most of them one cent plus shipping – two by Erica Orloff (one is rarer and a bit more). Linda said today she hadn’t been able to sit down, relax and read a book for a month, and with me in bad shape this last week, including a fever most of this weekend, I can understand why. My greatest gift to Linda at this point is to be as still as possible
(flowers wouldn't hurt either). Because she had to be there for me, groceries didn’t get bought; because she came right after work for me, other chores and little errands have built up. I need to be stable but I also need to go to sleep at a regular time and give Linda the chance to come home late from work, also to have an evening to herself. We were going away but the builders have delayed construction from 10 to 14 days. So it remains unknown when we are leaving to avoid construction.As for me, I need to sit very still and watch my DVD’s and read manga, and sleep and maybe write some postcards. That is the gift, the NON-self harm I can give myself and Linda now: rest, real rest where I oversleep. Yes, my body is not what it was a week ago, nor are all my systems online. I do feel that, based on how I am and have been, these are the limited times that Linda and I have to clear the backlog of junk so we CAN spend ‘quality time’ together before it is too late.
That would be greatly helped by a new pain medication as the pain I am in every minute is considerable. Does that mean I am going to die right away, I don’t know, I do know that my body and my heart are under significant stress, that I almost had a small stroke (as in unable to speak for days/weeks/months kind of small) this afternoon as my eardrum was pressured by high blood pressure bursts to the breaking point a few times (and also made me deaf on one side). The erratic levels of my heart, are causing structural damage; I know because I wake up hearing it, I go to sleep hearing it – but as the doctor said long ago in ER – there still is enough activity to get oxygen to the brain.Is that the point of hospice, the time when adequate pain medication is the most important thing?
I hope people had good weekend and I will just chalk this last week up to the ‘worst birthday week ever’. I never knew how glad I would be to be back here in the margins, back right on the edge of health and the abyss.
For now, we are worried as we hit our umpteenth day of sun and heat that the air conditioners might not keep up but at least I can wheel myself for most parts of the day. Cheryl wrote a blog post called ‘Fragile, handle with care’
and that sums up how things are for all of us, and give you a medical second opinion if you will of how I look to someone with medical training. Yes, I was and am driven, to make sure that those who have been part of my ‘new life’ of disability/dying realized how much I appreciate them being there, how much I appreciate you being here. I think there were over 30 packages posted out, and 28 postcards.I know people say they would rather have me than a postcard. Unfortunately this isn’t a game where I get to make a selection like that. I might have to face no me, and leaving no word behind, no postcard, or anything to let people know that, yes, it mattered. What they did for Linda and me to create stability really did matter! And that one of the things it did was help me realize how fortunate I am in the people who come and read this. I will try, as strength permits to have something light and humorous up soon, but this is where it is; I still stop breathing daily, I still scream in pain daily, I still struggle and am too weak to drink even at times….DAILY. But I am Not Dead Yet.
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