When the day start with the shock of touching your feet to the floor and burning pains seers through the soles and fires up through your shins, well you have to wonder what the rest of the day will bring. I know all to well that burning in the soles of your feet is a clear sign that you have nerve damage, I have over the years read all the bright spark on line information you can find, always telling you just what you already know all to well. I guess in a funny way that is often the worst thing about reading, all to often what you trawl through looking for answers, it supply’s you with nothing new, no miracles and no cures. I remember a telephone call with my mother a few years ago and she was once again complaining about the process of ageing, her biggest complaint that day was about her feet and how the soles burned terribly and how she had been waiting for months for an appointment with a specialist to find out what was wrong with them. I told her exactly what was wrong, but she refused to accept that there was nothing that they could do about it, no treatment nothing. She wouldn’t accept that she would have to live with it, as it was such a terrible issue in her life. It was a couple of weeks later that she saw the doctor and they told her just what I had, although they had given her some medication it wasn’t working, but she just didn’t know how she was going to live with it. For some reason this morning I remembered that conversation, I also remembered telling her that it was one of the more minor symptoms that I lived with and I remembered how she wouldn’t believe me, she never has done, as she has the position in our family of being the one who has to have everything worse than anyone else.
My mother and I seldom talk, usually about once a year, at Christmas, something I know many don’t understand but as my health has left me, I have found it easier not to argue with the font of all knowledge. It doesn’t matter what we land up talking about she will never accept that my version of my own life is more accurate than hers. According to her I just haven’t managed things correctly and that I should be living now in a specially adapted home with much higher benefits than I have and if I had insisted I would be on more powerful and effective medication than I am now. The best of it is that none of her knowledge had come from personal experience or investigation of the system, but from gossip at the church about other parishioners. It doesn’t matter what is wrong with you, there are always people who like to think that they know better, or worse than that, the ones who don’t believe the truth of your own life. Long term readers will be well aware that my relationship with my family has never been a great one, but it is one that has been totally destroyed by my health. Managing life long distance is difficult for most, but once it becomes impossible to make the journey to see them, there is little left to make it possible to hold on to each other at all. If you don’t live within a few miles of your family, trust me they drift away even further once you are ill.
Making a phone call is a real nightmare, there are so many things that makes it something that I avoid, but I try to make the effort with those I love. First I have to say like most elderly people my mother doesn’t have a computer and actually neither does my brother the other member of my family who drift in and out of my life. So contact is down to the old fashioned process of making a phone call, just holding that phone causes pain, not just in your arm but also in you neck and into your side. It doesn’t take long, sometimes as little as 5 or 10 minutes is enough to start the process, but once started even changing sides help little, as you land up with both sides of you screaming to end it. That may be the easy part to understand but the rest is probably what no one would think of. Lets start with a simple fact, 6 yrs of being housebound leaves you with little to say to someone you haven’t seen for all that time and longer, there is nothing new to talk about other than changes in your health. It isn’t as though there is anything new or exiting to pass on, no children to fill the time with their latest antics or anything outside the walls you live in. Then there are the speech problems, a constant run of stutters and word lose, all that seem to be exaggerated somehow, those silences seem on a phone to last for ever. Just as when you spend time with someone face to face, you quickly start to tire, exhaustion creeps in as quickly on the phone, if not quicker, just making all of it that bit worse. Within minutes you find yourself wanting to run away, to get off this painful, confusing instrument of torture. It isn’t the person you want to get away from, regardless how aggravating and annoying they are, it is the whole process of sitting there trying to make contact with a person you know less and less. From my side I have to add in that the final problem when you have brain damage is you simply forget to even pick up the phone and call them. It never enters my head to do it at the point in the day that I could, but then it takes me several days to remember to phone for a repeat prescription, despite leaving reminders, I forget that too.
Every relationship you can have in life is made harder once you just don’t have the health to make it work. Relationships require an on going interaction, but when you can’t do any of the work, as work is what is required, well it is up to the other person to do the work for you, but they don’t. It isn’t surprising that so many when ill talk of being isolated, but the isolation is actually enforced by those who you thought were in your life for ever, just giving up as it is all to much like hard work, a fault on both sides. I guess the longer you are ill the worse it gets, I am now down to Adam, Teressa and Jake, there are the people who know I am still alive and actually talk to me. It is all to easy to see just how you can land up alone, despite at one time have a large circle of friends. No matter what technology you have I don’t see this changing, it is just one of those facts of life.