Be you, not me

I spent part of yesterday afternoon reading a few blogs from other people with COPD and chronic pain. I was surprised by how many of them were putting in so much time reading medical sites and looking for answers to questions I haven’t even bothered asking. I always knew that I had a different way of approaching my health and reading how other people see their health, not just yesterday but in the past as well, has totally confirmed that. When I was first diagnosed I did spend a lot of time reading about what was wrong and how bleak my life might be. For me that was enough, I didn’t need to make myself feel like I was locked in hell, any sooner than I had to. Other than back then, I have only really read them if I had a real reason to do so. The odd new symptom, something I had heard on the news or read on twitter. Other than that, well medical sites and especially site dedicated to any condition that I have, have been there but not seen. Just as I don’t read the leaflets that arrive with my meds, I ignore all those expensive websites as well.

No matter how I try or how much I read of other people blogs, and no matter how well I understand that we are all different, I find it hard to understand why someone would want to spend the little free time we have to enjoy our lives, reading and researching the very condition that is so quickly stealing that life. If I read every site out there that talks about Multiple Sclerosis in all it’s forms, I don’t believe that I would gain a single thing. To me, all I would be doing is wasting the precious time I have left. If you are one of the people who fills their day this way, then please be assured, I am not getting at you in any way what so ever. It’s just that I truly believe that it is my doctor’s job to trawl through all those medical papers filled with figures and shorthand that without their training is generally confusing. Just as it is their job to suggest what medication or treatment might help me, I don’t even want them to sit and tell me how and why it should work either. I am one of those people who just accepts their knowledge and does as I am told. This to me is the logical way to approach my health, yet I am finding more and more who want to know more than their doctors and it kind of baffles me.

I understand the need to know, but I fulfilled that years ago post diagnosis. I guess that it might be what I learned then that left me totally convinced that the best thing I could do with the rest of my life, was to make it as comfortable as I could and to enjoy it. The more blogs I read, the clearer it became that the majority of people writing about their health, are by people searching for a cure. Clearly it will sound odd to the majority reading this, but that is something I have never done. Not once have I sat down and entered a search into Google in the hope of finding a cure for any of the conditions that I have. It has never even entered my mind to do such a thing and it appears that I am the odd one out. I accepted from almost the day that I was told, that I was dying and there was nothing else to be said or be done about it. The one thing I could do was to work out for myself the best way to live. I guess that is why I got more and more angry when reading other people’s blogs, as to me they weren’t telling the truth. What I was reading was sugar coated and full of false hope, what I wanted with the truth and real hope. Where were the people who spoke about their health just as it really was, day to day. Where were the people who were in pain, who couldn’t stay awake, who didn’t know how to deal with their health. Apparently, they were all looking online for a cure and not actually talking about their live’s at all, not telling us how they are making it through and dealing with their symptoms as they affect them, so I started writing.

There are millions of different sorts of people out there. If you were an alien reading the blogs written by the same people, you would rapidly come to the conclusion that once ill, humans become clones. It is the oddest thing, but I can count on my the fingers of my two hands, the number of blogs that I have come across that were taking a new or different approach to their health and what they shared with the rest of us. Logic alone says that should never happen, so why has it? I can only think that it is down to the power of social media. Somewhere out there, there is the first highly successful blog by someone with a chronic illness. It’s not us who become clones, it is all too often though, those blogs. Imitation may be the highest form of flattery, but it is also a dangerous road as it destroys self-discovery and individuality. Don’t read my blog, or anyone else’s and then start to write about your health in the same style, write what is in your heart and in your mind, it will do you and the world of blogging, far more good.

The reality of chronic illness is that the majority of them are disgusting, painful and deadly. To me, you can’t sugar coat that. I actually think that trying to might be the reason that some and I do mean just some, fall into depression. I fear that some are so busy trying to gloss over their reality and to convince themselves that it doesn’t have to be nasty and real, that they don’t even see it coming. I have tried and come up with many theories as to why it is that I cope mentally with all of this so well. Although they have all had a new twist, or a new angle, the core of all of them has been the same, I am realistic about the whole thing from beginning to end. I allow myself to adjust, just as I have been doing in the past week, to all new major events that I can’t sort out or find a way around. Then I move on from that point without looking backwards at what it means I have lost all the time. If I were to spend my time constantly working on finding that one new thing that might just be the cure my doctor’s have missed, I wouldn’t have the time to simply heal. Personally, I believe that by not trying to do anything other than survive, that I am doing so, the best way that I can.

I remember once someone saying to me that the worst thing I could do was to dwell on it, that I should keep myself busy and stay positive. I don’t think there is a worse thing anyone could do, not surprisingly the person who said it was my Mother. We have to dwell on it, it’s like saying don’t worry, stopping breathing isn’t an issue. It’s a huge issue. And as for staying positive, well there is that sugar coating again. I am incredibly positive about my life, not because I try to be, but because when you deal with life as it happens and I don’t try to hide it or anything else, being positive just happens to be a side effect. I know that we all have our own way of dealing with everything and what is right for one, isn’t always right for another, but it feels to me that there is an almost whirlwind of people, probably mainly driven by mothers, out there pushing this fake positive down everyone else’s throats and others are just caught up in it. There are as many different ways to deal with our impending death and our never ending illness, as there are ways to live. I frequently fear that too many people seem to be caught in the same whirlwind. It is OK to have days where the pain is totally destroying you. It is OK to want to kill your Doctor, well as long as you don’t actually do it. It is OK to want to curl up in bed and feel like the world is ending. Just as it is OK if you really, really want to, to put on a plastic positive smile or look for a cure every day. As long as it is you and you’re not doing what everyone else is doing, because you have been brainwashed into believing, that it is what sick people do. I believe that sick people should be allowed to just be sick people and as individual as they were when they were born.

Please read my blog from 2 years ago today – 22/09/2013 – A night with a lesson

I had a really bad night last night, everything just seemed to flare up and attack me without any reason. It wasn’t as though yesterday turned out that different after my early start, the day passed without any note and I slept well in the afternoon for longer than normal, making up what I….

Finding the hope

I seem to be spending a lot of time crying just now, not something I want to do but something that I have to do. I am not normally the type of person who wallows in self pity, but to be honest it is more grief than pity. I have for to long been convincing myself that I carried off an award worthy act of everything is OK, this is my reaction to learning that my act was fooling few and some not at all. As creatures we really do think to highly of our abilities to fool the world, when in fact the only person we are truly fooling is ourselves, well that broke down, so what the world moves on and this is a new day. See I can say it, do I believe it, well yes and no. I believe it in that it is a fact, but I don’t believe it, when the tears start again.

I have had some wonderful comments and messages both here and on Twitter and I thank all of you for what you have said and if any of you doubted that I would rip the pain from inside me and slam it down in words, well I hope you have lost those doubt, there is nothing that I won’t pass on to those who will read, otherwise what would be the point of doing any of this. This is day three of trying to put myself back together and I am getting there, yes there are still tears but there is also a relief that I have at last been forced to look at myself as I am now and put to bed the idea that I can some how claw my way back to who I was just 2 or 3 years ago, if not who I was 10 yrs ago. It is the old me that I am grieving for because I now see she has truly gone and can never return. This stage of my illness is a hard one and I doubt if it will be the last time that I put myself through this, yes I do realise it is me that is the root of this, not anyone else, everyone else saw the truth and politely worked with it.

It is mad how much we can upset ourselves, and how much of our lives is spent trying to hide from what all other know. The simplest example of one we all do it the kidding ourselves daily when we look in the mirror to the fact we are growing older or that we have put on some weight, I was kidding myself about everything. I know I had written before about loss of concentration and so on before but I had sugar coated it, the stark reality was to hard for me to take, so I built a world that let me ignore it and hid. I am now standing outside that world and facing the one that everyone can see and has listened to for years.

I accepted years ago that I can’t escape this house, that this is the space I have to live in and there is nothing else available to me. Now I am having to accept that I can’t escape this body or mind either, there is nothing else available. I have cried less this morning and I feel stronger in myself, more able to see a way through if you like. Today has started with a more positive feel to it, a feeling of being myself who ever that is, but I suppose it might not be as bad as I feared, after all I don’t actually have much of a choice do I.