I found myself hanging off the back of the bedroom door. Something inside me was screaming, it was one of those moments where everything just suddenly felt too much and I needed to silently scream. I was just stood there with both hands grasped tightly to my dressing gown, with it taking as much of my weight as I dared to set free. All I wanted was to stay where I was my face buried in the soft velvet of my dressing gown, letting that tension escape. I suddenly realised that where I was, was just a little stupid. What if Adam wanted something from the bedroom, half hanging off the door wasn’t exactly a safe place to be, or one that I would be able to explain with ease, or without feeling rather stupid.
The day had started out without issue. I had written my blog, sent out all my tweets and spoken to Jake. Nothing unusual and nothing there to wind me up or steal my energy, a day like any other. I decided to spend my free time trying to find some new sites. Ones that actually had something to say to me, rather than the millions of sites which talk solely to those with Relapse Remitting MS. Read most sites and their truth is that we are all the same, going through a variation of the same thing. That is the first and biggest lie that they all tell. Have any of the three forms that start with the word Progressive, and you are on a totally different journey. To my total surprise, I found one. One with a twist which after my writing how I hate all that Adam has to go through because of my health, was actually fitting as it was written by a carer. It was so well written that I was blown away by it, as it painted perfectly the worst side of what a caregiver reality really is. I had been only able to imagine it before and what I read surprised me as my imagination hadn’t done that bad a job. Donna Steigleder husband is at a later stage of the disease than I am so it was also a picture of my future as well as Adams. Her post was so well written that I forgave her for missing out PRMS, there are so few off us that we are frequently forgotten, especially by the researchers, which explains why there are no treatments for us either.
In so many ways, I both needed and didn’t need to read her words. It hard for me to find the words as to how it feels to read your own future, well parts of it. Clearly there will be differences, but there will be a huge amount that we will share. I’m not stupid, I knew that much of what I read was ahead of us, including Adam feeling as desperate as Donna clearly does at times. Out of our two lives, it is still his that I fear for the most. I am sure that Donna didn’t hand that post to him to read when she felt like that. Or sat down and talked it all through with him, her clearly caring nature tells me that. I don’t want Adam to ever feel that he has to hide all that anger, remorse, pain, guilt, fear and most of all that feeling that somehow he might be failing both of us. Right now I am at the tail end of the scale of MS, somewhere in the later stages of stage 8. Stage 9 is still a way off, I don’t expect to be mainly bedbound anytime soon, but a bad flare could change that tomorrow. Having said that is spending 13 hours a day, partially bed bound? It’s a definition I find hard to work out, as to me you are either bed bound or not, how can you be mainly bedbound? To me, the stages are somewhat unbalanced, stage 8 is met once your life is substantially changed and you are using a wheelchair either full or part time. Seven stages to that point and only two to take you to death, to me, it doesn’t quite add up. I am at the point where yes Adam has to pick up and do the things I can no longer, but his actual caring for my needs is still very limited. As long as my health stays at this level, there is a normality to life that still remains. But I don’t think that either of us are quite prepared for just how much our lives will change as time goes on. It doesn’t matter how well you research your condition, how much you both read and talk, no one knows exactly how you will manage until the point that it actually happens.
I think reading Donna’s post yesterday was a little of a wake-up call. I have spent a lot of my time in the last few years kidding myself that life is going to stay just as it is for many years to come. I admitted a while ago that I had realised that my health had changed more than I thought, or maybe noticed is a better word. I suspect that we all sweep along through life believing nothing has changed. Life has its stage post wake-up points, otherwise know as birthdays. There are no wake-up points when it comes to our health. Yes when I started using my wheelchair, but that was 10 years ago, as I said, how can I still be stuck in stage 8? I know that the mitoxantrone treatment turned back the clock dramatically, but I was never able to step out of my chair. The milestones are spaced so far apart that it is easy to kid yourself that you are doing well. I have been kidding myself that I was fine, that I wasn’t going to fail anytime soon, I think I need to reassess that thought. I’m not saying that life will change tomorrow, but I have to start preparing myself for the fact that it will, something I haven’t been doing. Adam may have been, but if he has he has been doing it alone.
I read yesterday several posts by different people, but the one I have mentioned was the only one that hit me between the eyes and left me reeling. Sometimes things appear for a reason a that time, a reason that we don’t see but feel. Emotionally, it was a kick in the teeth, as I had to say by the end of it, that it was a flag post waving in front of me. A warning that time is passing, my body is failing and the future is getting closer. None of that can I change, but I have to for both of us start to prepare myself for it, just as I prepared for the stages that have brought us this far. If you are mentally prepared for what can’t be changed, when it happens, well you keep going, rather than being stopped dead in the water. I knew and had worked on the possibility of losing the use of one of my hands. When it actually happened, I got dressed and went to work, rather than sitting about feeling like the world had ended. I knew the day might come that I might be housebound, I had worked towards that possibility and changed the way I worked, so I could work from home. Every step worked because I was prepared. Now I have reached the point where I have to face the next stage. I have to work on getting my mind around not being able to do even what I do today. I have to prepare for both stage 9 and stage 10. I have to start seeing it as real, not some distant possibility.
Last night when I headed to bed and stopped at the door, was because inside I was hurting. I was fighting so hard with myself over the fact that reality has been knocking on my door loudly in the last few months and I was waking up to the fact that I can’t ignore it. Donna’s post was the final kick I needed. My body and my life had been dropping clues for months, but I was too stubborn to listen to any of them. Being pigheaded is a wonderful tool to have when you are living with a body that is destroying itself. It can really work for you. Sometimes though it works against you unless you are lucky enough to be woken up to that fact, well it is equally destructive. Thank you, Donna.
Please read my blog from 2 years ago – 28/07/2013 – What next? The web?
For the past 3 or four days I have been plagued once again by edema, I had been expecting to flare in throughout the really hot weather, but there was no sign of it, so what made is appear now, well