It seems the slower I get the faster my life is moving, just a couple of months ago I was really impressed and blown away when I was receiving between 80 and 100 new followers a day on twitter, I said then it had taken a sudden upturn, well it has done it again, with over 200 new people joining me daily. I am always tempted to sit and analyse the people who join me, but I fear if I do, that I will start to make changes to what I do, in an attempt to please more people and that I know would be a huge mistake. If there is one thing that I have learned and learned slowly is that trying to please people gets you nowhere, in fact, it always eventually backfires and leaves you floundering. I remember when I was a child I didn’t have many friends, I wanted so much to be like others that I would try to be like them, it drew in a few friends for a short time, but I always blew it at some point by saying or doing something that just proved how different I was from the rest of them. So I never had those huge numbers of people around me that I saw in the playground daily, I was the one sat on the steps either alone or with just one other.
I am sure that no parent sets out to make their child’s life miserable, but my parents managed it with a skill that I have never seen equalled. There were so many rules, so many things that I wasn’t allowed to do and so many things that I had to do, even if I didn’t want to, that I now remember my entire childhood until I was 13, being overshadowed by the feeling I was inside a box looking out, desperate to escape, desperate to even breath. Everything about my life, including my first marriage, was all about appearances, I swear that the TV show from the 80’s “Keeping up Appearances” was inspired by my family, but they softened it and made it funny, as no one would have believed the truth. It took me a really long time to understand that you can break out from however you were brought up and have a real life away from the past, I have written several times saying that I feel I have had two childhood, two totally separate lives, just today though it struck me all as so ironic. Here I am housebound, but I have at last managed to have that circle of people who want to be around me, who are drawn in by what I say and do, some stay, other go, but the there are now more than I ever dreamt possible. Life is more than a little nuts, it is truly insane all too often.
Yesterday one of the people who have been following me for a while decided for the first time to read some of my blog, they aren’t ill themselves, but have a friend with MS who doesn’t really want to talk about their illness and like most of us when asked how they are, answers with just “I’m OK”. The tweet I received expressed how different the world I live in is from the life they lead, almost as though we live on different planets. I often describe it that way myself, but having someone who is fit and healthy enter my world and pick out so quickly from just a couple of posts the differences and was left stunned by the alien concept of living life in constant pain, proved to me yet again that the majority of people have no idea of the truth of our lives or how little the medical profession can really do for someone like me. It also proved to me that I need to keep going on, that I need to keep pushing the message out there on Twitter about what life with chronic illness really is.
“I’m OK” is the stock answer that most people give when asked how they are, even when I know that the person asking is actually truly wanting an honest answer, not a stock one. I know all to often it take Adam to read my posts before he really knows how I am feeling that day. Yes he sees it, but I am now incredibly good at covering much of it up, actually I am going to correct that, it isn’t about covering it up, when you live with something all the time it becomes normal, I don’t stand up and walk without knowing before I move, the pain that I will be in once I do. I don’t act, I just do. Adam sees me daily, he now knows from the way I sit, walk or even speak if I am struggling or if things are just steady as they always are, but he knows that asking me is going to get the “I’m OK” response. I have nothing to hide from him, he probably knows more about my body and health than most husbands do about their wives, most wives don’t pour every thought, every feeling, into a blog for the world to read. The “I’m OK” is said not to hide but to protect, I have no desire to distress him further than he already is by my health, finding out the day after, is less disturbing than at the time, by the next day it is clear I have survived it, so nothing to worry about. I think it is fair to assume that the majority of people who live this way, don’t want to distress those they love or care about, most of us still want to protect them, even if we can’t protect ourselves. Adam never accepts me saying it once, or even twice unless I am looking him straight in the eye as I talk, what he doesn’t get is that protecting him is one of the few things I can still do and I will until I can’t do it anymore. Telling him the truth at the time would achieve nothing, he can’t do anything about it, he can’t take the pain away and all he will do is worry, so I don’t lie, I tell him the truth, “I’m OK”, proof, well I am still alive.
Please read my blog from 2 years ago today – 27/05/12 – The game of MS
There are days when the world seems a bigger and brighter place. No, I’m not trying to be sweet or cutesy, but those days when for no reason there is a general good feeling about the new day. Being ill doesn’t mean you have to be depressed and or depressive. I can see how some people get drawn down and find themselves drowning in pain, grief and self-pity, I am not saying…..
Pamela thank you in sharing this with me as it touch me so much as I told you my Mom had MS also where I seen her daily struggles in handling this ,where she never complain about it ,but I could see how she hurt at times ,which I feel helpless in not being able to take it away as I would done anything to let her walk again without pain .Please never give up God is with you always!
Your Friend Robert
Fantastic as usual. I think I will try to spend less time explaining in detail how I am and accept it’s ok to say ‘I’m ok’ because it’s within my ‘normal range’ 🙂 *Big *Hugs* XXXX