Sometimes, it just feels like I have more to do in a day than my body has the energy to do, or the time available to fit it all in. Yesterday was one of those days. The day before a hospital visit always feels that way. I know that the only person putting any pressure on me is me, but I simply can’t help it. It appears that, that, work ethic, no matter what, never dies. I know it is nothing more than a feeling, but if I don’t manage to create the illusion that I am sat here as normal, well, then I have failed. I know it’s stupid, but it does also have a real reason behind it. It actually has its roots set in a single day three years ago. Just like today, I had quite simply gone to the hospital for an appointment, but I didn’t set anything up in advance. To the outside world, it appeared I had just vanished off the face of the social media world, and some people panicked. By the time I got home again, I had tweets, comments attached to my blog, and on my now defunct Facebook page, from people showing unbelievable levels of concern. I had been missing for a handful of hours, I hadn’t died, but you might have begun to wonder if you had read them all. From that day on, I have made a point of creating the facade of normality, regardless what is going on. Don’t get me wrong, I was extremely touched, but I felt so guilty for having worried people in that way, that I swore I would never do it again. So yesterday turned into a day of trying to do two days work, in one, never a great idea really, but for once I think, I got away with it.

One of the joys of my PRMS. is that it likes to play games. You can never say that this or that is going to be a problem. Any more than I can say that going to the hospital today will wipe me out for days, for the week, or not at all. If it’s feeling really sneaky, I might be fine for the next 24 hrs, then suddenly, I will feel flattened. When it first became ultra active 14 years ago, I didn’t have a clue what was going on. I planned my life with the greatest of care, expecting like anyone would, that if something was going to be too much for me, I would know at the time. It actually took me a year to understand, that planning was of no value, what, so, ever. It wasn’t like anything I had ever had to deal with, as the one thing it didn’t contain, was any form of logic. I had quickly discovered that energy couldn’t be banked, so the idea of taking it easy, because I wanted to do something later, or the next day, didn’t work at all. At one point, I actually kept a spreadsheet showing how much energy different things took out of me, and what my physical reaction to each was. I was desperately trying to find a pattern, something that would make some sort of sense. There wasn’t any. It is really hard when you are used to leading an active life, outside of work, to suddenly find that there was literally, no point in even trying. Why waste your time putting on your makeup and getting ready to go out, just to find as you reached the front door, that you couldn’t go any further? I lost count of the number of times I told someone I would meet them later, to find later, didn’t exist, well for me at least. By the time, I was in year 3 post diagnosis, I had stopped saying yes to invitations, only ever saying, “Maybe”, by the end of year 4, the invitations stopped as well.

I have heard so many people saying, that their friends disappeared and that it just proved that they weren’t real friends at all. I personally, don’t really believe that. I have written several posts with parts of my reasoning behind it when it comes to our social friends, but I don’t think I have ever written about our work friends. I think the post about social friends were somewhere in my first year of writing, but that is, only think. I believe that much of our loss of work friends has to do with just the way people live their lives, as it is with social friends. But I also think there is one factor, that most of us totally miss and it’s ourselves. If you think back to those days, those times when you were face to face with someone in the workplace asking you, to join them for a drink that evening. Now think closely about your body language, your voice, and your face, you will find several clues. Something none of us deal well with is embarrassment. When you know; that the chance of you being able to join them; is down to your health, well, we all feel somewhat guilty and embarrassed. Yet again, your not in control, and you are more than likely going to have to let them down, by not being there. The second that your brain works out that you are being invited somewhere, that embarrassed, and even guilty feeling, starts to show on your face. The person who is asking you to be there picks up on it, and they start to feel bad for asking you. They are in that horrid moment when even the best-preplanned words, start to sound wrong, or pitying, and they don’t really know how to change their words, or how to get out of the whole situation. You are feeling just as bad. It is no wonder that they will think twice about the next time of asking you to be there. Add into that, the fact, that the more people you say maybe, or no to, the less they will ask. They weren’t running away from you, they were running away from feeling awkward and embarrassed. Put the shoe on the other foot and be totally honest, you would have more than likely done exactly the same thing.

The first people who started to avoid us, where our acquaintances, those who didn’t really know us well enough, to know, if being blunt, or hedging around the obvious, was the right or wrong thing to do. Slowly one by one their invitations started to dry up. The ones who kept asking, always put into their invitation, something along the lines of, “I fully understand if you aren’t up to it, I just wanted you to know that you are more than welcome to join us if you feel up to it”. The air of awkwardness remained, especially for us. Unless you were a first class actress, that always showed and our embarrassment, out shown our appreciation of still being included. For me to begin with, somehow, I was always left with the feeling that I was letting them down. Worse still, that they might think that I was using my health, as an excuse. Even worse, that the truth was, I just didn’t want to be there, with them. I know now, that because of that, that I probably over did my thanks and my explanation of why I might not, or most likely wouldn’t be there. Even as time went on, my thanks and rejections, still showed that I was not fully at ease doing so. It’s just human nature that the more people see this reaction, that they are going to try and find a way of not making you feel that way, there is only one way, not to ask you in the first place. Add in, a simple fact, that the more you don’t go to parties, nights out, or company dinners, the lease likely that they will even bother to ask you. Work friends and acquaintances, don’t leave us, we leave each other.

None of us are taught how to deal with the illness of others. Our work colleges are probably the people outside of our partners who see us the most. They have watched us over the years getting iller and iller. They have seen us in every state that our health can produce. In my case; I had gone from a bright, person who moved swiftly; never missed an opportunity to attend anything that sounded like fun; to a person who was painfully thin; frail looking; in a wheelchair; with a gastric nasal tube, permanently over the ash white skin; that was on the few days that I made it into the office, as I worked mainly from home. Over 10 years, I had diminished in every way possible. No one asked me to attend anything in the final 4 years, partly because the final 3, I was housebound. I didn’t lose my work friends because they didn’t care or didn’t know how to handle my health, they had seen everything possible, there was nothing they hadn’t been involved in, in some way or other. I lost my work friends because my health removed me from the situations where as people we bond, those social events where we are people, not the manager, or staff member. We don’t bond at work, we bond when we’re social, if that is removed, so are those friendships. Just like any other job you have ever had in the past, once you don’t work there anymore, once you and they have moved on, those people we counted as friends, are gone, we and they, become part of the past. Be honest, how many people did you stay friends with from your very first job, or you second, or third, and so on. That is the way it always works; for us this time it’s more noticeable; we haven’t moved on to another job; we aren’t in a place where those relationships are replaced; we’ve moved on to another world; one where we are alone, so we feel it far more.

It is all too easy to say our “Our friends don’t want to know me anymore because we’re ill”. Our work friends don’t think of us once we have left their family, as that’s the way work families work. Your seat in the office isn’t empty, it has a new you in it. The person who sat there is gone, but the person who does that job, is sat in the same place, they always have. So don’t be hard on them, as it’s life, not them, not your health and definitely not you!

Please read my blog from 2 years ago today –  09/11/2013 – 1/6th lost to pain

I thought that yesterday was just going to be a simple day with nothing to report and in many ways it was, I did everything that I would normally do and even had a late afternoon shower, which…..