I visited my old blog site this morning, to my shock there are still people subscribing despite the fact that my last post said nothing other than that I had moved everything to this site and that all future posts, will be here. It wasn’t difficult thanks to a piece of software I have, which, unfortunately, doesn’t work on this one, to know exactly where their PC is located and which page they landed on. I knew from that, that they had to have seen it. I just don’t get it? Mind you, it isn’t the first time by a long shot that I have found myself scratching my head as to why people do the things they do. I’m sure there are plenty who sit and scratch their heads over the things I do, or have done. Having been a people watcher all my life, I could probably write a book relating nothing but what appeared to me to be the someone what odd behaviour of others. I guess we all think that how we see the world and the knowledge that we have, must be shared by all others. Then someone says something, like the woman who phoned BT when I was working there to complain about her new phone, it’s something that has left me wondering ever since. Her complaint was simple. She had just heard an ad that said she had to dial zero, eight, zero, zero, the problem was that jingle on the radio said that the number ended in ten. Try as she might she couldn’t find a number 10 button on her phone. I have to admit I wouldn’t have been as quick as the operator who spoke to her, they said it had to be an oversight and she should return it straight away and they would send a new one out.
I have always considered myself as being about average intelligence wise. I was very aware that in my last job that I was known as being a bit of a computer Nerd and actually, I was rather chuffed when I heard that. Nerds are clever people and to know others saw me as such was a huge compliment. Especially, as if truth be known like many self-taught people, I spent my entire working life stressed out by the fear of getting things wrong. I constantly updated my knowledge, worked on learning more, not just keeping what I knew up to date. I actually thrived on the constant challenges and the never ending research that I had to do, to improve things throughout the company. If I was pushed into having to say the thing I missed most about being housebound, ill and jobless, it’s that. I have nothing now that pushes me, nothing that stretches me and the fact I no longer have a brain that could actually deal with it. It’s hard when you are a self-created person, one who doesn’t have a single qualification, that was never taught how to do all the different things that I did but had a successfully varied working life, to find that none of that is there any longer. I was proud of all the different me’s that I created. The fact that I managed to do so over and over, adapting to what I had to do, to make a living and always proving to myself over and over again that I could do anything I put my mind to. When that mind leaves you, that is hard to deal with.
I remember feeling devastated when a combination of my poor dexterity and failing eyesight took all of my favourite hobbies away from me. I so loved all my handy crafts and doing DIY, then I found that before our home was completed that I no longer had the ability to even finish the last room. I often still sit here and build in my head a new look for this entire place. They are looks that will never exist, spaces that will never be filled with colour and detail. I can at times see them clearly, at others my brain doesn’t even have the power to hold together a picture long enough for me to complete it. I know there is probably a handful of people in this world who would even think about spending several hundred hours embroidering and beading a duvet cover. I don’t just think about it, I dream about it. 15 years ago, I would have done it. Losing all those skills felt like I had actually lost my hands and eyes, rather than just some of their abilities. It was just the start of my life with waning physical abilities, but what I still had then was a brain. I packed away all the beautiful, the dainty and the intricate and replaced it with the complex, the fiddly and the frustrating world of numbers, programming and facts. In time, I even found within it the beautiful. I never thought that I would, but it was there to be found and I loved it.
There is something really cruel about an illness that takes so much. Any illness that steal both your physical and the mental abilities, then throws in immeasurable pain, just isn’t fair. It’s not right that everything that makes us people can be taken and destroyed by our health. It doesn’t matter what those skills are. You could be the best mother in the world, a top doctor or an artist, all of them are equally devastated, equally destroyed. Who we were, has vanished. Who we are, is diminished. Who we will be, is unknown. I know I have recreated myself, that I have taken all I lost and replaced it with a new me, a new life and new future, but I didn’t want to, I had to. I am proud of what I do daily, how I make use of my time and how others benefit from it, not just me. No matter how happy I am, what I have lost makes itself known all the time. I had paused the TV last night and was waiting for Adam to come back into the room. While I waited I sat enjoying just looking at my crystal ornaments. Something clicked that a set of cats that I have where split across the room, Suddenly I couldn’t even remember what company made them or what they were worth. Details I used to carry for ever single one of them and there are an incredibly large number. Crystal has been a passion of mine for many years, but suddenly this know it all of crystal couldn’t remember a single thing of importance about any of it. Nothing is sacred, nothing so special or even personal enough, that this illness can steal it and leave you staring into a void.
Two weeks ago I was fighting, really fighting to put this site together and to transfer everything from the old one to here. I know at the time I wrote about how hard I found it, but I hid much as I didn’t say that it reduced me to tears several times. How can someone who when I was a DJ could recognise my entire record collection by their groves, control complex lighting systems and sound engineer live music. Who was in the top 5 sales people in the UK whilst with BT. Who took themselves from Sales person to Operations Manager without having ever used a PC to being able to programme and automate system across a company, not manage to make sense of simple click system. Even now when I know my brain is clearer than it usually is, I could actually see myself being stupid enough to actually look at a phone and question where is the ten button.
Illness has no respect, no mercy and no interest in what you want. It just does what it wants, when it wants and we have to live with it. I have found my way of beating it and it’s there in everything I have written over the last few days. We all need a challenge, we all need to move forwards, otherwise we fall into depression. Let that take hold and you battle is a million times harder. I could spend every minute mourning all that I have lost, or I can be happy with where I am and move forwards instead. Nevi, you leave loads of messages for me, well this one is for you. We have all lost more than seems bearable and we will a lose even more. We can scream and cry about it, let it destroy us even further. Or we can face it, embrace it and start again. That doesn’t mean the past is gone, it will always be there. Hold on to the possibility, no matter how slim, that you might just get better to the point that you can return to it. If that is medically impossible then hold onto the fact that life was great and life can be great again. It might have to be in a new way, one still waiting for you to find and for you to explore it. We all have to believe that we have a future, we just have to find it.
Please read my blog from 2 years ago – 02/08/2013 – 3 ways to fall and now with no way up
Yesterday I renewing my acquaintance with the hall carpet, but we met not in our normal slap bang fashion, no this was something quite different. For over 10 yrs the mad lurch in a direction that I wasn’t intending in going, followed by a one swift crash to the ground often….
You’ve done a marvelous job 🙂
I’m still learning WP, only been here a couple of months and have found picture editing to be the trickiest thing so far, with menus and widgets not far behind with their complexities!
I’ve had to teach myself how to do things so it’s been fab giving my brain challenges 🙂
RE crafts and hobbies: I studied glass and ceramics at uni and was looking forward to having my own ceramic studio but my body and especially my hands couldn’t cope with it anymore (my work was always large scale). Yes, I miss it loads because it was so therapeutic and I enjoy being creative, maybe one day I’ll find a way to do it as a hobby. Although, i think I’ll feel a bit silly going to a night class when I’ve got a degree in it 😮
I also used to move the furniture around frequently with no help now I get exhausted thinking about it 😮 I sit here thinking to myself if I move this over there then that can come over here…
… then I remember I’m not so sprightly and require help with these projects.
I was so active, never sat still and I’m not sure my brain will ever accept that my body is just not in sync with it 🙂 I think that we will find new ways to enjoy our hobbies 🙂
Wishing you wellness 🙂
Fluffie hugs xx sian 🙂
I’ve been reading your blog for a few months now, and this is my favorite so far, probably because you’ve so beautifully explained what I’m learning, step by step, as my MCS intensifies and narrows my world. I will say that this condition led me straight to the absolutely best, most satisfying, and most creative job I’ve ever had…so there you go. Thanks for baring your soul to those of us who also have chronic conditions or illnesses, and to those who care to learn what we endure, and what we hope for. Blessings on your efforts, and on you and your helpmeet.
Thanks a lot for sharing your hope and fighting for this vision of life
THANK YOU PAMELA (ESPECIALLY) AND SONNIQ, FOR TELLING ME THAT THE WORDS I POST ARE ACTUALLY BEING HEARD. NOT EVEN MY DOCTOR, MUCH LESS MY FAMILY HEAR ME, SO …….IT MEANS A GREAT DEAL. THANK YOU.