Making connections

I realised yesterday, almost as soon as I stopped writing, that I had opened up a can of worms, right in the middle of my brain. I have always said, that part of the reason that I write is to make people think, and not only about health. Along the way, I have found that I frequently also make myself think, about a huge range of subjects, but for me, separating them from my health is now almost impossible. Not too surprising I suppose, as my health has so dramatically changed my life, that, for it not to be involved, is almost impossible. As long as you are still out and about, even if that is restricted to once a week, your connection to the world is real. Once you are housebound, no matter how many friends, how much technology you fill your home with, that connection, is forever broken. Just as you can’t live your life through secondhand experiences, you can’t be connected to it either. I don’t think that I actually understood the true impact of that until I had been housebound for a couple of years. You don’t notice it to begin with, as we trick ourselves that what we see on TV, is real life. That watching the actions of people, in the background of a movies or soap opera, is just the same as sitting in a cafe, watching life pass by, soaking in the depth and colour of life, but, it’s not. They may not have lines to speak, but their actions are as tightly choreographed as any chores at the ballet. Don’t fool yourself, nothing happens on any screen, tiny or huge, that has been tightly put together and even more tightly edited, it’s not real life. Once we are housebound, it is the only life that we see.

TV has always worried me, in fact, I would go further, it scared the hell out of me. You don’t have to be a sociologist to see why, just someone old enough to remember the days when TV, closed down at 11 pm nightly on weeknights, and other than programs for schools, didn’t start again until 4:30 pm. The very idea, that there are people who sit day in day out, watching bubble gum TV, and believing that is the real world, should scare anyone, but once again, I digress. Once you are trapped inside your home, it doesn’t matter how we find it, we have to find something that replaces that interaction we had with the world. As humans, we totally rely on our eyes, after all, “seeing is believing”. We are one of the few creatures that do this, so in some ways, it is easier for us to recognise when we are alone. My first three years of being housebound, I was still working, so I was as busy as ever, but I did feel alone and I had to fix it. To my surprise, I didn’t actually need people physically here, what I needed was to replicate the office, I needed voices. I didn’t see a lot of people when I was working in the office, but I heard them all the time. The answer wasn’t the radio, that is full of annoying music, too much time spent changing channels. The TV, on the documentary channels, or the news, replaced it really well, with an added bonus. Unlike the office, it was permanently intelligent, rather than discussions about “Big Brother” or “Coronation Street”. Having really bad eyesight, meant it wasn’t too much of a distraction, but enough to become a somewhat an odd friend. It wasn’t until I was made redundant and my days weren’t filled with work, that I found myself actually missing those once annoying emails. I was sat here as ever, but unemployed and very aware that I was alone.

Most humans, find something to do, clean their home, go for a walk, indulge in a hobby, do some exercises, but if all physical distractions are also closed off to you, what do you do? Few of us live on a street where putting a chair near the window, would provide enough entertainment, for more than 10 minutes. We could bother the few friends we have left, by phoning and chatting about nothing, or we do what we have to, and find a way of getting on with life alone. No matter how much we have in our lives, how busy we are, how much chatter surrounds us, eventually, our isolation has to be addressed whether we do it intentionally or not, our brains take over and they shift our reality. Yesterday’s post highlighted just one of those shifts, I made without even knowing. So many people have admired how I have managed to find contentment in my new world, how well I have adapted, but I don’t know if that is really true, as I am not so sure that I have knowingly done anything. Yes, I created an environment that I am happy to exist in. I have established an online presence, by blogging and on Twitter, but that isn’t enough to fully explain it. I may have set up the required stepping stones and dug the foundations, but I think, the rest of it was either, set up in my previous life, or has been totally a subconscious act. Our brains have been proved so many times, by people far more qualified than I am, that self-preservation is part of everything we do and think. Is it such a jump then, that self-preservation has been behind my survival so far?

Psychologically, we are not designed to be alone and I’m not, I have Adam. I also had years prior to the door closing, to prepare myself for this life. Time to build both my physical surrounding and the mental preparations required for this lifestyle, not to mention one hell of a subconscious. I also have the carefully selected and manicured world that the TV brings into my home, and I have my online life. I have been brought here by my health, but there will be far more of us in the future, who will do this by choice. When that can of worms popped open it was this that I was thinking about. Right now, there are children at school, who will spend a large part of their lives, housebound, not by health, but by work and they, are not being prepared for it. I know that the idea of working from home appeals to a lot of people, but I would put one huge warning sticker on it, so big, that I hope it scares people off from choosing it as a lifestyle. If, they have a strong social life and family around them, then it may work well, but if they don’t, they are committing slow social and life suicide. For most, that chatter of being in an office, shop or factory, goes on into their social life, for most people, the majority of their friends come from work. Only a few of us, have the same friends throughout their lives, work matters, it’s our connection to the social world. Working from home, means no chatter, no friends, no reason to leave their home. Once you make that step indoors, you rapidly realise there is no reason to go out, everything can be delivered, everything can come to your home. Everything that you can find here in my blog, outside of the symptoms and traumas of chronic illness, could without a doubt, be applied to a solitary person working at home.

Who we are at the core is always going to play a huge part in everything we do, our brains can protect us, but they can also deceive us. I totally believe, that if, they came out from behind their closed doors; that the majority of housebound people; around the world, cope just as well as I do; but in their way; the way, their brains protected them into; in the way those they love, assist them to live. That, though, would be a totally different story from anyone who goes there by choice. The biggest difference between me and most of those housebound now is; I have a voice that can’t stand not being heard; that has too much to say, and now all the time in the world to do it; while they, quietly get on with their lives. Without a doubt, I know that anyone can be happy housebound as long as you do it, in a way, that matches you, your life and the future you want. I’m not anyone special, outside of being me.

Please read my blog from 2 years ago today – 22/11/2013 – The perfect slob

There are always downsides to every up, today because I am going to the hospital on Monday, I have to once again make a mess……

Rebuilding the Cocoon?

Friday seems to have taken a lot out of me, it is always the knock on that is more the issue than how I feel at the time. MS seems to let you cope, then kick you repeatably for even having tried to. I suppose it will all take a few days to settle, my routine didn’t exist last week and there were quite simply too many changes to deal with, I know I will get there but these are those hidden moments, the bits that others don’t see. I don’t think my gut liked the treatment at all, I am finding it now rather painful in strange places and clearly not happy with the food I have been putting into it. I can point to the exact positions where my breakfast, dinner and tea are, and I can tell you the pain and nausea is clear, I suppose part of it will be the ruff process of pushing the scope, some bruising and so on I expect, but most is empty space syndrome, gaps of air and crashing food.

I spent all of yesterday feeling half here and half longing to be anywhere else, especially asleep. I did at least get my afternoon nap and one again landed up in bed before 9pm, so yes I have just caught up with “Casualty”, I don’t understand either my love for hospital dramas either, I suspect it is because a lot of the time I actually know what they are talking about and sometimes even manage to diagnose the patient before the Doctors do, that I have to admit is fun, a bit like a who-dun-it. I have always enjoyed working things out and I am sure it is also the reason I can’t stand slapstick humor, what is funny about something you knew before it happened, actually happens, sorry I don’t get that at all.

I can see it is going to take me a while to recover from all of the last week, there are just so many parts to it that my body is still catching up. I know everyone seems to think that I should have a great desire to get out of here, but when my venturing outside causes so much stress, why would I want to go anywhere. I really do wish now that I hadn’t asked for help at all, I would be in a much better position if I hadn’t actually. If I had just got on with it and said OK this is the way my body works now and I have to work it all out myself, maybe just maybe I might have it all under-control with out any stress and without people in my home annoying me, and without yet others forcing me out of it. I managed fine for five and a half years then I asked the NHS to help me and it has been nothing but upsetting from that point on. Isolation was a much happier place believe me, everything just ticked along, day after day and I ticked along with it, I would love to have that back, life has been distressing since I lost it. It is strange how help can land up being anything but.

I suspect that when I do go back to the Gastro. department it will be once they have the results of the biopsies, 4 to 6 weeks time and I expect that guess what they will blame it on my MS, as I did right back at the start in March or April. My gut has simply stopped pushing food through, what I wanted then and would like now is a solution, I just hope they are now out of tests and are happy to just do what I asked and help me make it work well enough to be healthy and to not mess myself daily, I don’t think that I was asking that much really. Before that though I have another appointment this month to go to the Pain Clinic after the mess on Friday I am looking forward to this less and less as my appointment is for 5:45, I know the shifts change at 5 so this might not be a smooth system either. There is a real feeling at this minute of my not wanting to go, I suppose that is understandable and a risk I once again have to take, as I am sure if my pain was under control I would feel better in myself, but I can’t put into words strongly enough that I really don’t want to leave the house again if I can just find a way to pull myself back into my cocoon and lock them all outside it for good. Possibly a silly thing to do I know, but in my heart that is really what I want.