I was driven to bed last night by a combination of tiredness and pain. Not the pain that wants me to scream, but that long drawn out aches that there is no relief from. As often happens I was quite comfy sat on the settee for the first hour, then just after 8pm, first my left foot start to hurt around the outer side around my ankle that spread over the front of my foot, then my intercostal muscles and diaphragm joined in and finally my left arm. I have always found that no matter how traumatic severe pain is, it is the constant aches that seem to wear me down especially in the evenings when my energy levels are low. To be totally honest, I would swap it any day for a short-lived strong spasm as once they let go that is it over other than the shadow that remains for a while, almost like a threat that it could return any second, but it is normally just a threat and it’s over with. As I always do I sat there to 9pm, determined that I wasn’t going to vanish to bed earlier than required as even though Adam isn’t at work just now, I still love that time we spend together just sat watching TV. It was my arm again that woke me this morning, but to my surprise
Adam wasn’t in bed, it turned out that he had just fallen asleep on the settee and actually woke not that long after I did. I heard him just after 6:30 am as he tried to sneak into the bedroom, even though I did have good earplugs in place. There is something about the sound that the bedroom door makes as it moves over the carpet that I am totally turned into, asleep or awake, this morning I was already awake and glad that he was coming to bed as it meant I could get up.

It can be hard to work out when something started in my life and if it is part of my PRMS or not, the doctors think that my first symptoms were back when I was 21, but that is a bit of a guess on all sides, but it feels like my left side has always been the side of my body that has been affected worse than my right. Every symptom I have had has always appeared first on my left side and it is always the side where pains and aches are more intense, if it were equal to my right side, well life would be a breeze, without a doubt I wouldn’t have become housebound when I did. It was the complete death of my left arm that lasted nearly a year, followed by the fact it has never regained its true strength, that forced me to stop going out. Without out it using my manual wheelchair was impossible and stopped me going out alone, then the rest gave in and made going out totally impossible. I honestly think if it hadn’t been for my arm, I would have been able to manage the outside world for another couple of years, my left side has a lot to answer for. I know without asking that every time I say my left arm is hurting that Adam starts to worry that I am having a heart attack, it is a fear that I totally understand as that is how he lost his father when he was just 10. I have to be honest in saying that if I were, well there is a huge chance that I would just be sitting there trying to ignore the pain and telling the world that it is just my PRMS. Between my arm and the pain I constantly get in my chest, well who knows, but if I were to go to the hospital everytime I felt it, well I would be living in A&E, it is yet another one of those things that I just honestly don’t think I would be able to tell the difference.

Clearly I have thought about this, as I wouldn’t have written that paragraph if I hadn’t, I guess it is just one of those things that once your health is shot, well you just don’t know what is what. On top of that, well doctors see the letters PRMS in my medical records and instantly that is the reason for everything else, even my COPD has an element of MS connected to it. I know without a doubt that it is one of the things that plays on Adams mind, I’m not stupid, but it is unfortunately, the way life is and no matter what I do, I can’t stop him worrying. I am sure that there are couples around the world who live just as we are, who have the same worries and the same problems and that there is no right or wrong, but I just wish that there was. I don’t know how it is that I can just accept things the way they are, that I don’t fear the worst at every twist or turn, but I am incredibly at ease with it all, as I know there is nothing that I can do change it. In the years to come, I know without one second’s thought that there will by other symptoms that will appear, symptoms that I am sure will mimic other conditions and we will have all the stress of that to bear as well, but what can we do about it? PRMS is a condition that affects the nervous system and it can do whatever it wants to any nerve in the entire body, that basically means that anything can happen.

None of us, well or ill, knows with any certainty what will happen in the next second, far less what will happen in the next year, but the ability to mimic, to make you think the unthinkable constantly and that is going to get to anyone, even me occasionally. So OK I am officially dieing, but that doesn’t mean today, nor does it mean they have got the timeline right, eight years to go, well it could actually be a lot longer.

Please read my blog from 2 years ago today – 30/01/13 – Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens…..