I am about to be totally mortified again, by the mess in our home. The phone rang almost exactly at 9am, it was the podiatrist saying that she would be here this morning to cut my toe nails, I had this huge rush of oh thank goodness she is coming as I have three toenails that are cutting into my skin, followed by, “No I can’t let her come in here!” Adam hasn’t done any housework in the living room for few weeks and to me it looks like a bomb has hit it, quickly followed by added dust from the plaster disintegrating in disgust. I am sure that Adam would look at it and say it’s OK, but as we know all to well, we are different people when it comes to “housework OK.” I have shifted his stuff that was lying around and tried to straighten out the settee’s but I can do any more, that has knackered me and destroyed my leg muscles. I am sure that the podiatrist has been into far worse houses, but that doesn’t help with my embarrassment. I could have a full blown spasm in my chest and feel less stress than I do about people seeing my home less than perfect, but that has been me for my entire life, I am not going to be able to change, no matter how hard I try. I have learned not to stress about it when it is just Adam and I here, but anyone, even just popping in to read the gas meter, triggers me to feel like the world has ended just because the cupboard it is kept in, is in a mess, something it has now been for about six years. I know right now as I am writing this that there will be people who will be shaking their heads in disbelief, others laughing as they can’t believe anyone seriously feels that way and possibly just a few, feeling my pain, as that is what it will be when she is here.
Since I stopped working stress has been a rare component of my life, very rare, I am just not a person who gets wound up about any of my health, even when I am finding it hard to breath, something most people would stress about, I can totally relax my way through it until the pain ends and the muscles start to free up. I don’t know what I would be like if it continued for too long, especially if Adam was there at the time, he would stress enough for both of us. Out of the two of us it has always been Adam that has stressed about my health, to the point that he actually made himself ill for a while, but he got through it and is now fine on a day to day bases, but still has his panic points as he did when he convinced himself that the “thing” wasn’t just a bad mouth ulcer. I on the other hand, once I got over the initial period of stress from getting the result of my MRI, to have the rest of the tests done and the final diagnosis of PRMS, have somehow taken it all in my stride. Even the day I woke up to find that my left hand had gone from weak, to not working at all, I just got ready and went to work as if it were an ordinary day, not even going to the doctors until work was over. I honestly believe that is the only good thing about a condition like mine, there are so many truly horrific things that it can do to anyone, that something like loosing the use of a hand, just doesn’t feel like a big issue, I was still alive. Once you have been through a couple of bad flares that can even cause you to be in hospital for a few weeks, well the panic goes over what is happening to you and changes into stressing over the more minor things, like being bored just waiting to get home again, or will they let me use my electronic cigarette on the ward, or a new but major concern to me, how do I keep up with all I do on line without my desktop PC. None of us are ever stress free and the levels change as time goes on. Once the doctors have set the stop watch going, ticking away the time you have left, stress felt pointless. As odd as it sounds when they told me I had at most 10 yrs to live, my life changed at that point and suddenly it wasn’t about fear, it was about living and what I needed to do to make those years productive. If they could invent a pill that clicks that switch in us, a switch I know is there as others in my position have said the same thing, life is suddenly brighter, bigger and far more important to be enjoyable, if that switch could be flicked in everyone, the world would change over night.
It is amazing how everything changes in that second when you know that you only have a time capped amount of time, it also changes doctors as suddenly they don’t worry about addiction or side effects, they give you the pain control that you need at your finger tips. I hadn’t out a great amount of thought into it until now, but that change, the day I had pain control to take as I need, not just restricted to those two points in the day, also changed my stress levels. When you live with pain all the time and you know that you can, despite the meds you have, have points when that pain over rides you and that it can happen any second, is stressful in itself. All pain, anywhere will cause other muscles to tighten and it can become a viscous circle, as the stress and tension it causes can cause other muscles to spasm as well. These days I no longer stress about pain at all, other than when it is really bad, that’s a natural reaction, but I know when it is bad that I can get rid of it, all I have to do is put up with it for is about 10 minutes, one tablet and job done. I find it one of the oddest things about the way they treat all forms of MS, not just PRMS, they give up medications that half do the job. When you live with pain that isn’t properly controlled, your stress levels rise, stress is the worst thing possible for not just MS, but loads of conditions. No matter how hard I try, I can not find the logic of keeping people in that position, when there is a simple solution. To me, if they had given me the control I kept asking for, an additional medication that I could take when I needed it, I honestly believe my health might not have gone down hill so quickly. It took that note of my life being limited to be added to my notes, for them to actually do what I had been asking for, for years, for me to be able to decide just what I need and when. Each month I am now given a supply of tablets to take of boosters, some months they are all used, others hardly touched, but it is me who decides and just as importantly, the have removed the stress as well.
Life can never be stress free for anyone, but as I said earlier, the greatest stress buster, is knowing you are terminally ill. There is a strange relief, which I know sounds terrible and as though I am just wishing I could die, not at all, it is like a calmness, a feeling that it is now all out of our control, the decision has been taken and we have to make the most of every minute of it and more importantly to enjoy it. I deeply wish two things, that I had found this feeling when I was in my teenage years and that I could pass it on to others.
Please read my blog from 2 years ago today – 17/11/12 – To far alone
Yesterday ran a way with me and I found myself with tears in my eyes frequently. It started to go wrong when I actually managed to first remember to make a phone call and second when they actually answered my call. I received an appointment to go for Breast Screening, I knew where the unit…..