Last night we were just watching TV and talking as we always do and at this second I don’t remember how we got onto the subject of my blog, but we did. Adam said something so true that for once he looked as though he was about to burst into tears. I’ve never understood why painful things when said, make people do that, but I owned up to the other day, words appear and the truth of them appears in our emotions. All he said was that he was convinced that if I didn’t have my blog, that I would probably have driven myself mad, or I would have just given into what my body was doing and I would be long gone. He knew the truth of what he said and so did I. I have lost count the number of times I have recommended writing to different people who have a chronic illness, to me sharing it is a bonus that I didn’t have planned when I started, but it has change its value and actually kept me writing even if on those days I just didn’t feel like it. Sharing has made it an even more effective way of holding onto reality and getting through the toughest times, as other people’s voices come back to me, reassuring me that I am not alone, or that I have put into words what they couldn’t find the words for. Adam, of course, sees more than anyone who just reads about my life, he sees and reads, he also knows me better than anyone else, I don’t think he would have managed to put up with me if I hadn’t been writing as he often finds out here all the things I just don’t say. Trust me, no one wants to burden their partner with half the things I write in here, but strangely I am glad that he reads them. He has said to me so many times that I can say anything to him, it is his place as my husband to help, to listen and to be there for me, but I as a wife what my husband to be happy with me, not burdened by me. When we married we took the traditional vows of in sickness and in health, neither of us knew what the truth of that would be for us and neither of us ever thought that we would have just two years of marriage before I needed him to start being my carer.
Holding onto your sanity when both your body and mind are falling apart isn’t an easy thing to do, I know though that it is a lot easier now than it was years ago. Until I got my diagnosis no one and I do mean no one, not friends or family believed there was anything wrong with me, not surprisingly I fell into what everyone else thought were depressions all clearly written about, not just in one post but over many. It is the unknown that is always the thing that scares and pushes us the most and almost everything in my life feel into that box labelled unknown. When no one can explain something, prove something, or even wants to listen yet again to your desperate attempts to diagnose yourself and make sense out of what everyone else says doesn’t exist, you become desperate. I have no doubt now that I was never depressed, well not in the normal definition, I quite simply had had enough. I had had enough of all the symptoms, of not being believed and most of all, living in pain. My attempts to kill myself had far more to do with ending my hell, than wanting to die, dying was the only way left that I could see of achieving that, it was in many ways to me a treatment.
You might think that getting that diagnosis would have changed all of that, that I would no longer have any of that going on in my head. I now have people who believe, treatments that help and I also have a million questions, a million pains, sensations and symptoms that I couldn’t find written about anywhere. Diagnosis was simply the end of one phase and a transition into another, writing allows me to pour it all out of my head and often by reading it back, it all also suddenly makes sense. I have said many times that PC’s should be supplied by the NHS for anyone who is housebound, because it would help many to feel less isolated and ward off the depression it can bring, I now would actually take it much further, it would be a really useful tool for anyone who can’t make sense out of the life they find themselves living, due to their health. Once you learn to write in free flow, rather than thought out steps on a considered subject, it is amazing what you find hidden in your mind and how you find yourself describing things, often just letting the first words you think of to describe a symptom work far better than trying to find a way of explaining. A daily clear out of the built up jumble leaves you the space to create the next jumble to work on. We so often just see people for what is there on the surface, how they look, what they say, what they don’t say, but I am sure that inside all of those people is so much more. I never thought I would be able to write daily and not find myself short of something to say and I now believe that every single one of us could actually do just the same, mind you, it would put a lot of psychiatrists out of work, as I am sure all of us can analyse and learn for ourselves from what we would write, all it takes is to start and to not let yourself stop.
I managed to talk to my doctor yesterday and he has agreed to my plan of increasing my MST by 10mg twice a day, just as I have been taking for the last few days. I still find it a little odd this prescribing for myself situation that has grown, but it works and I can say now that I am feeling much better having made that increase a few days ago. I accept pain-free is a fantasy, but I also know that pain under control is something that I don’t only expect, but I have to have. I know that I have always refused to take medications that might make me fussy or feel doped, but these last few weeks I have found myself questioning that. Fortunately, this small rise hasn’t done that, but I actually believe that I would prefer fussy to the way I have felt recently. To anyone who hasn’t lived with chronic pain it is hard to explain this to, but you live with constant pain, it never ends and all you can do is bring it to a level that is bearable. The only time you are pain free is when you are asleep, I believe that is why most effective pain control is effective, as it puts you as close as possible to the natural sleep state. The last few weeks, well they have been well past that bearable point, I have been in a position where I thought I would explode, or pull my hair out, building as each day passed, with no sign of it regulating itself. This time, I was lucky that a small rise has brought back control without doping, but if I had to live doped to have control, I know think doped would be preferable.
Please read my blog from 2 years ago today – 31/07/12 – Challenging Speech
It is strange how much you get used to having you days to yourself, for the last few years I have spent the majority of every day and every year on my own, as Adam clearly has to work, when he is on holiday as he is now it all seems a little strange, his holiday only started on Friday and this is only Tuesday but I have had to check that twice today as with him being here it feels like a weekend, it is……