Down sizing required

At last, Christmas is over, done and dusted for another year. It’s a time of year that is hard to handle when you’ve lost your health so completely. Inside you want to have everything as perfect as those long past, but you know it’s totally impossible to get anywhere close. For me, the hardest thing this year was the trail of relatives. Don’t get me wrong, it was lovely to see them, especially as we seldom see them at any other time, but getting them to totally understand that limited energy, means limited ability to even just sit and listen to their chatter, is hard. My daughter Teressa and her husband John were here for two days and I got through their two five-hour visits tired but still feeling alive. Yet, having Adams Mother, sister, and his sister’s girlfriend here for four hours, drained me totally. I don’t know if it was the fact that I had never met Amy or that Alison and Jenifer rarely come round to call, but those four hours, in one fell swoop, took as much as the two visits from Teressa and John did, and more.

Both visits had been organised in advance, but despite that, I found myself confused and anxious about the finer details. I knew Teressa and John would be here for at least one meal, if not two and I didn’t want to have the expense of their last visit when we landed up ordering Chinese. It was nice but I honestly can’t afford another £80 bill. I don’t know how many times I tweaked the Asda shopping list before time ran out and I had to go with what was there. I had gone for a simple array of cold meats, pates, smoked salmon, and pickles, to be served with bread and crackers. If they were to be here the next day as well, well toast and pate would have to do. I have never before gotten myself as wound up about people coming to visit as I did this time. I guess, I am more aware of my health these days than I have ever done before, especially when it comes to my memory.

It was so good to have my daughter here again. There is something about our bond, that nothing can get in the way of, not time, not distance, not anything. We as always were instantly connected and leaving the two boys trying to get a word in edgewise, and trying to work out, what we were finding quite so funny, or possibly so intense. It has often been said that we are two parts of the same person, not just as we look alike, but our sense of humor and inflections of voice are almost identical. She though has the luck of being both healthy and employed in a job that financially means life can be more than comfortably enjoyable. We did though have our silences, they always felt as though they were down to me, as my brain kept going blank and I could find nothing to say what so ever. It’s not as though my life is filled with exciting things to talk about. No matter what I do or how I try, being housebound really does have it’s limitations. Despite the silence those few hours passed with ease, my fatigue was limited, but clearly there. In some ways, I think the silence allowed me to recover, to recenter and move forwards at my pace.

The visit from Adams family was the total opposite for me. The hardest part was trying to listen to their chatter, well it was his turn to be at ease and mine to be the outsider, part of, but not truly connected. The four of them were totally connected and I was lost on the edges, occasionally connecting but then lost again. I could feel that Adam didn’t want them to leave when I called it a day, but I had already gone past the three hours agreed on and I honestly couldn’t take any more. If final proof were needed, it came that night when I slept for 14 hours and Adam still had problems waking me. My alarm had been sounding for 10 minutes when he decided that he too should join in. but not even shaking me or his voice found it’s way through at first. When I did wake, all I wanted was to be left alone to sleep again. The three of them all together had drained me to a point I hadn’t expected, especially as all we did was talk.

You don’t really feel or notice your health changing. You can’t really measure it when you have been ill for so many years, that ill, is quite simply our life. You forget when one day runs into another so seamlessly that even their identity is gone, just what normal life really is and just what it really does to us. Two simple family gatherings, the sort of thing most people do every week, not full blown parties, not huge cooking marathons, just people in my home sitting talking, yet they were enough to drain what energy I could find. It’s days like these that show me just how ill I have really become. I never understood those stupid rules that hospitals have of just two visitors to every bed. They made no sense at all. How can it really make the slightest difference other than to the number of chairs that they have? Well, now I understand. Now I get the real reason. Now I see just how simply being surrounded by the healthy can truly impact on our health.

I wouldn’t change those three days as they were both important and fun, but now I have a much deeper understanding of my health, of just where I am on that scale of healthy. I knew already that my ability to be amongst people was diminishing, thanks to my carer and the district nurses, As much as I need them and even to some extent enjoy being with them, I knew that time limits were very much needed. Now, I actually believe that a second rule is needed. the rule of two at a time may well be the way of the future. Adams family proved what I thought already, that my brain quite simply can’t keep up and fatigue becomes a huge issue. We may love our families, but without trying to sound cruel or nasty, small doses has become a necessity.


Please read my blog from 2 years ago today – Right or wrong

I found myself in the middle of the night just sitting on the edge of my bed, I had woken up for no reason I could find and for equally no reason I decided I needed to sit up, I was sat there still wearing my earplugs…..