I apologize for being absent so often.
I am going to talk about something people with chronic and degenerative diseases have to deal with, and think about WAY too much: taking a shit.
I haven't talked enough about it, but for me, and I think for those with chronic or degenerative neuro-muscular illnesses, the changes and energy needed to avoid impaction makes me think I could have learned to play the violin....if only I hadn't needed to ensure all was good 'in the pipes' as it were.
My ability to be up each day depends on a schedule and I have chased a schedule for over six months now. The three main factors are a) sleep, b) time awake at one time and/or energy spent and c) intestines and bowels. I thought, thanks to a week where everything went well that I had FINALLY solved the problem which kept me up and expending too much energy, a regular and quick dump. A combination of a) prunes, b) lactalose, c) soft fibre, d) flax and e) 2+ liters of water per six hours is what I use. I have cut down on my pain killers because all of the morphine ones cause constipation. That combined with a loss of nerve and muscle function means that to get from the stomach (point A) to the toilet (point B) meant I needed help. Not the right balance, and I get constipated, and end up spending hours on the toilet for no outcome, then lose a day having to sleep 18 hours in order to build back that energy.
Much like having a shower which suddenly turns hot or freezing cold because your neighbor decides to water the plants, it is hard to tell what is the exact problem. But when things in the intestines suddenly stop or go, it quickly changes the comfort, energy and focus of my life.
But a few weeks ago, I told myself I had solved it forever. "Great. Now I can get up, I can go out to eat, I can be up when Linda is awake, and work on getting back to writing and wheeling outside."
Then something turned the tap a wee too much. Suddenly I was on the toilet, with cramps, for two hours, then two days later for four hours. And all I seemed to do in between was sleep. Yes, I was not constipated; but I wasn’t up or full of energy, instead I had IBS or like having a bad giro/burrito food poisoning two to three times a week. And worse, something in my five things I do was creating it. That is how I went from Monday midnight to this morning.
'Whew, this HAS to stop' I told myself. It messes with me, and with Linda.
So a NEW plan. I keep losing time, not just days, but weeks, and months in order to a) make sure my diaphragm is strong enough, b) make sure my heart is beating correct again, c) have a regular schedule so I can plan when to go out, when to see movies or picnics.
The thing I need most is ENERGY. I have no reserves, because I use them up on the toilet, then sleep until I am at a minimum. It is a good way to end up with an infection or go into a organ failure, but not a good way for Beth, who wants to keep fighting in order to live a full life. Linda is working hard doing applications, doing the ‘work assigned’ they give you for the long list, and the two days working on the stuff you have to turn in before the short list. She is working hard but getting those short list interviews and one day we will have things like ‘insurance’ and ‘sick days’ and ‘vacation time’ again, and we too will have joined the recovery, and can start doing adventures together again. But only if I can keep myself going until then AND can improve my health, myself. VIHA, who should be helping Linda when I can’t help her or myself, had a meeting but won’t tell us the outcome, but the VIHA nurses, and the night nurses who come out to assist – they won’t come for us, but they won’t tell us why either. That is something I need to address, but first get better.
So, I decided I need to stop going by the 6 hours up, 2 hour nap, six hours up plan from 2008/2009. I have changed in the last couple years, and I can’t put out the energy I used to. I need to note and mark how much energy and time I can stay awake and then change to that – listen to my body. If that means 7 hours up, three hour nap and 5 hours up, or 5/3/5 or 8/4/4 or whatever it will be, that will be a schedule based on what I CAN do. Then I can do my daily routine of writing while I am strong, going out when I am strong then resting. And I can begin to build reserves so that when I need to, I CAN get up after a 6 hours of sleep in order to go to do a test at the hospital. Because for the last several months, I haven’t been able to do that.
I want to increase my patches to a level where they are changed every three days, not every 2. With me sleeping, it makes it too difficult for everyone if they have to be changed every two days. And if I am not in pain ALL the time, and using only 1 pain medication (the patches) and TWO breakthrough pills (one for small pains, and one for the BAD days). If I ONLY take pain meds when I need a 'breakthrough' then I won't be taking them every day, and won't, when I sleep a day or two, start going through withdrawl (not fun). So off to see the doctor and to set this up. Then I think things will get better.
I’ll let you know how it goes.
9 hours ago