Occasionally when I pick up the link to add at the bottom of my post for the same day two years ago, I will give the post a quick scan to see for myself what was happening then, today’s answered a question I was wondering about just the other day. It is now a full two years since I was able to lie in bed in any other position than flat on my back, without even letting my hands touch me in any way. I knew it was quite a long time, but two years, without being able to move into any other position, that does surprise me. I guess the odd phenomena of time moving faster as we age, isn’t affected by being housebound as many might expect it to be and that included me. I honestly used to fear being stuck in my home every day and not being able to live the life I once had would mean that time would hang heavy and that I would more and more miss the life I once had, but it doesn’t seem to work that way at all. I have come across many people who haven’t been able to adapt to their life now that they are chronically ill and I truly wish that I could pin point what it was in myself, that has made the process seem to have worked for me, as I would love to be able to help them. Even yesterday I received yet another tweet from someone who was struggling and I felt so bad as all I could do for them was to send what I felt was bland encouragement. I can only think that it has to do with being able to let go of the past and to try and look forwards not backwards. That doesn’t mean I have forgotten my life before, read back a few posts and that will be clear, but I have managed to let go of it and to have built a new not just life, but world that works for me.
Just weeks before their 25th wedding anniversary, my father announced that he was leaving my mother to live with his secretary. I watched my mother turn from a busy housewife with 2 kids still at home and happy and secure in her world of being a housewife and mother, turn into a half dead person who did nothing with her life from that point on. She is still alive and in an old people’s home now, having done nothing other than exist from that day on. What I saw as a kid, built in me a determination to never stop living, that may be what the difference is, the determination to not let anything or anyone stop me from doing what I want, but I learned to be that way, so I believe that anyone can also learn to do the same. Like almost everything in life, even surviving chronic illness is down to us, no one else can do it for us. I haven’t been able to change the course of my illness, but what I have been able to do is to stop it from destroying me as a person and found yet another life to live, totally built by me, for me and in a way that would work for me at every step. It is hard when every time you think you have things sorted, to find that in a short period of time, you have to start all over again because your health has changed again, but it is the only way I have been able to get this far. Survival has to come from inside us, doctors can keep our bodies alive, we have to keep the living.
Yesterdays dramas with the internet was actually fixed very quickly, I was hopeful when they said it might be 72 hrs, that they were just covering their backs and they were, it was all fixed before 1 pm. I did eventually catch up with everything I had to do, but it did leave me somewhat drained of the very little I have at the moment. Nothing has really changed in the last few days in any positive direction, but that hasn’t been helped by all the things outwith my control not going smoothly either. It has though been a great example of how I have changed from a competent person who ran huge systems for a company, into someone who can’t manage one minor glitch with broadband service or a delivery arriving late. It is one of that hardest parts of managing an illness that thrives on stress, creating a stress-free environment works well until the outside world smashes into it. I made a discovery last night that upped my levels again, perfectly timed of course as I was just heading for bed. Adam pointed out to me that I didn’t have any morphine tablet left in the bedroom, so I headed into the kitchen to pick up a new strip of them. When I opened the box I was horrified to find there wasn’t a whole strip left in it, all that was there were two tablets sitting at the very bottom of the box, behind the leaflet that comes with them. I am not just shocked that I only have those two and two here in the living room, but I don’t think I have completed the full box of boosters since November, so I will have started this month with several more tablets than I really needed. I knew well enough that I had taken a lot of them this month, but nothing like that many, it just shows just how much pain I have been in. This now of course means that I have to make the four tablets I have last until Tuesday or possibly even Wednesday, as I can’t call the surgery until Monday and they have to post the prescription to me as I haven’t set up the new service yet. I have always been really careful about taking booster pills, it isn’t as though I just take them at a drop of a hat, I usually wait for at least an hour to see if it will settle for itself, other than at night, I admit I am bit more likely to take them after a much shorter time. Almost every time I have spoken to my GP in the last couple of months, I have been thinking about talking to him about my Morphine levels, but I didn’t, I wanted to see if getting my bowels under better control, would actually help to reduce all my pain levels again as they do seem to feed off each other. They still aren’t under control and if I am honest, right at this second I have pain across the front of my just below my ribs again, not bad enough for me to even think about a booster, but bad enough for me to be aware of it and to know it is already starting to make me sit oddly and to find taking a deep breath uncomfortable.
Nothing is ever easy these days, I have been in so much pain and so tired that I know I am in one of those intertwined spirals, each one feeding the other and making everything harder than they should be. It is the reason why I thought at first that I might actually be in a flare, but then I managed to start separating them and it all made sense, but sense doesn’t mean easier, it just means I can see what is happening. I am beginning to agree with Adam, that it is time that my doctor actually came to see me as there is just too many things that are happening right now. Normally, I am more than happy to keep it to a two minute phone call, quick and over and done with, but not having him here, where I can pinpoint all the different areas of pain and explain how each is different, not involved with each other or clearly part of the same thing, means that I don’t think he is getting the full picture. I will give it one more try on Monday and see what happens, then think it all through again once I have given it a much better attempt at painting the picture for him. I really wish that I had an email address where I could send him a detailed account, that way I could be sure that I am making it totally clear, as vocalisation is one of my PRMS issues, one of the reasons I love to write, as here at least my thoughts seem to flow, even if the hidden truth is it is start, stop, read, read again and rewrite.
Read my blog from 2 years ago today – 7/03/13 – Finding comfort > http://bit.ly/YC3VBQ
I seem to be no longer able to lie on my side in my bed, I used to always go to sleep on my side and then roll to my back where I spent the rest of the night, but lying on either side is either painful of too uncomfortable to stay there for any length of time. The only position now open to me is flat on my back with my arms by my side. I have even given up trying………..
2 WOMEN; AN OCEAN APART, ARE LIVING ((SUFFERING)), THE SAME WAY ,FOR THE SAME REASON, FOR 54 YEARS))WE’VE LIVED THROUGH, BAD MARRIAGE, LOSS OF A CHILD,RE-MARRIED TO YOUNGER MAN FOR SECOND MARRIAGE.WHILE THROUGH ALL OF THAT, WE NEVER COMPLAINED ABOUT PAIN OR SUFFERING. WE TOLD OURSELVES TO KEEP IT IN, NOT TO BE SO WHINNY.DOCTORS TOLD US FOR DECADES ,NOTHING WAS WRONG. SO WE PUT MORE PRESSURE ON OURSELVES TO BE “”NORMAL””.THE TOP DOCTOR/SURGEON TOLD ME IT WAS AGE AND ALL WAS WELL,AFTER A TEST.2 TESTS LATER; AND I BECAME A SUPERSTAR.DOCTOR AFTER DOCTOR GAVE ME MORE AND MORE BAD NEWS.MY FAMILY, WAS UPSET,I WAS NOT.THE LAST TEST WAS THE THE ONE I SHOULD HAVE SAID SOMETHING,BUT HUNDREDS OF FACTS ALL ENDING WITH “YOU WILL DIE”SCARED MY FAMILY INTO A SURGERY, THAT WAS NOT ONLY UNNECESSARY,BUT HAS CRIPPLED MY USELESS BODY EVEN MORE.START WITH ARTHRITIS,THEN D.S.D M.S,C.O.P.D,CROHN’S,HEART ABNORMALITIES,A-TYPICAL BLOOD(COMPLICATED BY SEPTIC BLOOD DISORDERS(TOO MANY TO TYPE),AND FOR GOOD MEASURE THROW IN CERVICAL AND THYROID CANCER.MY DIGESTIVE SYSTEM WORKS WHEN PUSHED AS ALL MY MUSCLES TO SWALLOW AND DIGEST HAVE ULCERS ON TOP OF ULCERS.MY DAY STARTS WITH EXTREME PAIN AND DOESN’T REALLY END,SINCE THE PAIN CAUSES SLEEP APNEA”IT’S REALLY JUST BREAKTHROUGH PAIN),THAT KEEPS ME FROM SLEEPING FOR MORE THAN 4 HOURS.LIKE YOU PAMELA, THERE WAS NOTHING THAT I COULDN’T DO…AND NOW THERE IS NOTHING THAT I ” CAN DO”THE NEXT 48 HOURS WILL BE SPENT TRYING TO TAKE A SHOWER.I KNOW THIS COMMENT IS ABOUT “”ME” BUT IT IS ABOUT BOTH. I AM NOW WAITING FOR A DOCTOR, WHO HAS ENOUGH BALLS TO TREAT ME WITH AT LEAST THE PROPER PAIN MEDICATION. IN CANADA, THE GOVERNMENT DECIDES WHAT YOU NEED.BOTH OF US KNOW THAT UNLESS BLOOD IS POURING FROM OUR EYES AND A LIMB IS RIPPED OFF, THAT YOU GET NO CARE. IF THEY CAN’T SEE IT,THEY DON’T CARE.I TOO AM WAITING TO SEE IF THE DOCTOR SHOWS UP TO WRITE A PRESCRIPTION FOR SOMETHING THAT HAS PROGRESSED TO THE POINT THAT,PAIN IS MAKING MY FRAGILE BRAIN(MENTAL HEALTH PROBLEMS TOO)),WANT TO JUST DO SOMETHING STUPID. IF IT WASN’T PAINFUL I WOULD END IT, BECAUSE THE DOCTORS ARE OF NO HELP.THE SAD THING IS, THAT YOU AND I KNOW THAT PAINKILLERS DON’T HELP,THEY HELP US GET THROUGH,WHAT MOST CAN’T EVEN IMAGINE….NEVI