It’s amazing, how when you stop just adding two and two together, to make a nice neat four and actually start looking around for the possibility, that there is another two lurking somewhere, that you actually start finding more and more of them. Unfortunately, life is seldom ever just neat little packages. There always seems to be those other strands of thought, that really should be included in the equation. Yesterday’s post really helped me to remember some of those fine lines of self-knowledge that get forgotten over time. I have often wondered if there would be any purpose in my actually going back to the start of my own blog and just reading it all, from start to finish. Part of me says that it is surely pointless, as I have lived it and written it, I know what is there. But there is another part of me, that fully realises that we all change, even in a tiny window like three years. I wonder if I did read it all, would I be surprised or disappointed by the thoughts and conclusions that I drew as I was learning to live this way? I know for sure that there is two thing that I would find. Firstly, disappointment, and amusement, at my learning process of how to write. Secondly, loads of little numbers, all waiting within my thoughts that I missed at the time, just waiting to be swept into my personal equation of life. All too often, I find myself writing when I am wrapped in pain. As you might have noticed, I don’t plan out what I am going to write about. I sit down each morning, come up with an opening line and then empty my brain onto the page. If you do that when you are in pain, the result is often filled with truths, that at the time, you simply don’t pick up on yourself. I know that both of those are true, simply because I have had cause occasionally to read a day from my past.
Despite the fact that the last month has been filled with symptoms running wild in different parts of me, my overall pain level is lower. Apart from moments of intense pain, on the whole, it has been manageable. Even the number of booster tablets I have had to take, have been not just halved, but quartered. I think that alone has added to my soul searching and inability to make sense of what has been happening to me. I know, you would think that with a clearer mind, and a body not in blinding pain, would make life easier. But when extreme pain and Morphine is your daily normality, life without them, feels vast and odd, so odd that I can’t even find the words. Even right now, when I am sat here with a diaphragm that has been in almost constant spasm for the last 48 hrs, if not longer, my pain level isn’t anywhere near where it normally is. I don’t understand it, it is so alien, that I find myself constantly questioning it. I have even found myself prodding at it, trying to trigger normality, but lightly because I don’t really want it back. Just a handful of weeks ago, I was considering phoning the doctor, with a request to raise my control Morphine dose. I was taking so many boosters, that I could only conclude that my twice daily dose of 70mg just wasn’t high enough. Now, I am quite content with them just as they are. The only thing that has changed in the same period of time, is the introduction of my wheelchair, the thief of my legs, and my new lung meds. One, or a combination of them together, has made a huge improvement in my life, but I am completely screwed up by it.
I remember writing a post a long time ago, where I posed a question about suddenly being cured and how I would cope with such a possibility. Clearly, on the surface, it sounds like a wonderful thing and those who have never been iller than a cold, would expect that I would step outside straight away and go and get a job. That is a shallow conclusion. I know for me, without a doubt that being cured, would be just as traumatic as being diagnosed, and a lot of people agreed with me. With a little considered thought, I am sure you will understand why. In some ways, this change in my life is contained in that same thought patterns. Losing the use of my legs is huge, even though they filled my life with danger in every step and I lived my life stressed by it. The fact still remains, we have legs to walk, I have legs for what purpose, two or three steps in safe areas, to complete my transition from one place to another. That’s not legs, that’s an aid. I might have walked nowhere other than around my flat, but I walked. Now, I don’t and that is emotionally painful. As I concluded yesterday, that is a reason to grieve.
So here I am safe, on wheels that I am at one with. That carry me everywhere I want to go, without banging into anything and have given me a new lease of life and freedom. That has reduced my pain levels in my legs, reduced my fatigue levels and seems to be a boon in every regard. Yet, I am still grieving my loss. If you still don’t understand, think of it this way. It’s like buying two puppies and one dies. No matter how much you still love and enjoy the one that lives, you will grieve for the one that died. This is just the same, but I haven’t lost a puppy, I have lost half my body. In the midst of that pain, I have a two huge improvement in my life. First, my chair, but second are the new drugs for my lungs. I actually didn’t think of that one until today. They are keeping my lungs more open. It is only when my PRMS throws one of it’s mad fits and clamps my lungs tightly, that I now find air hard to find. When they are milder, I can feel a change, I can get more air without having to fight with them in the way I did. There also used to be spells when oxygen felt reduced, I can only guess they were caused by smaller deeper and more internal spasms, where pain isn’t registered the same. Although still there, I don’t seem to have so many unaccountable spells of feeling short of oxygen for no reason. One of the inhalers that I use is a steroid. I know there are loads of different steroids and they don’t all do the same, but I can’t help but wonder, if that is somehow helping not just my lungs, but my PRMS in general. Steroids are one of the drugs used when I have a bad flare, it’s just a thought.
Yesterday, I added two and two and it equalled four. Today, I have added and added to that equation, as I said, life doesn’t happen in neat packages, there is always more to it. I am sure, that I if I sat and thought about it for longer, I would add more and more, but they would truly be small and would have nothing like the impact of the others. My normality, has been challenged, ripped apart and left in pieces, no matter how much better life is, when it is so different that it doesn’t even feel like your life, you will be left wanting answers. Questions, have one odd habit, instead of giving you just a goal to head for, they are like rabbits, constantly breeding. You deal with one and another is bound to pop up. I think if I did read my entire blog from the start, that too would be the result, so many questions that I didn’t really answer at the time and disbelief, at some of the ones that I did.
Please read my blog from 2 years ago today – 15/10/2013 – Taking the dream
You can sit all day, wondering and dreaming about what will never be, but it never really gets you anywhere, as dreams come in different shapes and sizes. I even once believed Adam’s dream that a cure would be found….
I UNDERSTAND YOUR GRIEF. LET YOURSELF GRIEVE.
I feel you on the if you were cured thing, id be lost, all over again. I also find myself prodding when symptoms are lessened.
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