A second thought

Well my video skills are improving, I have spent all of today working on my Facebook page and recording and editing my second video, I have to admit I quite enjoyed it! If I can find out how to do it I promise I’ll add the link.

The hardest part for me has been the voice overs, it’s hard to believe that once I made money out of it and now I have to redo and redo to get it stutter clear. I sometimes I can be lucky and other not but it is annoying at all times. After my mobility, my voice was the next thing that others were aware of. You can’t hide difficulty walking or the fact that your brain voice coordination are shot. There are always just a few though who take the slurred words and unsteady walking as mean I am drunk. I remember once falling over while trying to open the door of a taxi after work, the driver didn’t get out, wait or anything helpful, he just drove away. I was so angry at first, then I realised I might have acted that way a few years earlier.

I always thought I was very open minded and non judgmental of others, I was so wrong that I find it painful to admit how wrong I was. When you are forced to look at the world from a changed perspective, you suddenly realise how narrow minded and self opinionated we all are. No matter how hard you try it is impossible to avoid it, another of those annoying human attributes we have unintentionally. I’m sure that I still show and share many of mine, I don’t think we are responsible for developing such opinions, but we are responsible not to question them regularly.

Spinning memories

I am on a tangent run to day, keeping my brain in one place isn’t easy. When I was working this was a very useful attribute if mine. Some of the best analytical and reporting I produced was due to the strange way that my brain finds answers when least expected. One of my bosses spotted it and if the information required for a report or how to show the results in a simple format just wasn’t working, would say things to me, like ‘Go home the long way tonight’. She knew, just as I did that sitting starring at a spreadsheet didn’t work for me at all. Send my on a bus journey home, or put me in a meeting about something else altogether and bang there was the answer.

I have been trying for the last couple of weeks to put together a profile of myself on line, should be simple but as I have said before my art of dodging cameras is phenomenal and from my entire life the only picture I have are promo shots from my time as a DJ or my wedding. How do you put together something for a Facebook page without photos? I think I have the solution, but that solution has become a problem. I have been looking through copyright free photos and things I have been looking at, keep sending me off somewhere else in the past. If I ever get this thing done I will add a link so hopefully you will understand what I’m working on, but here is the problem.

I’m flicking through pictures and up comes a photo of a spider. Brain path and first result, my third ever radio show. I had just managed to convince a radio station to allow me on air, but being a novice who had successfully not shut the station down when I had a test show on a Monday morning, I was given the high profile spot of 9 p.m. to midnight, a time that meant I was in the station totally on my own. West Sound, was and is a small local station, I wanted to try radio as all my work to that point had been live pubs and clubs. With there being no audience in front of me, the only way I could see how to get that instant feedback was to open the phone lines. I did that half an hour after going on air my first night, cocky or what! Problem number one, the phone is in the hall area between studios, which is through 2 doors. The only way I could make it work that night was to set up long tracks, cross my fingers and run. Well I never like to make my life easy. The next night I took my best friend along.

Tracey is a wonderful scatty, precious, beautiful and funny lady, who I believed would be great on the phone and would manage well to assist in what was a slightly alien world. With help on the phones the pressure was reduced and the contact increased, I set a silly competition that set the phones ringing and Tracey excelled and all was going well. The public knew she was there as I had introduced her, so when I made a tongue-in-cheek bitchy comment about her I turned to look for a reaction, what I saw just cracked me up. There was Tracey standing on top of the desk trying to shout through sound proof glass for help. I couldn’t think what was wrong so between almost wetting myself with laughter, I told the listeners what I was looking at, put a record on and went to her assistance. There was my 27 year old friend standing on the desk looking terrified trying to get as high off the floor as she could, I thought it has to be a mouse, when I got closer I saw tears running down her cheeks, the problem, a SPIDER!. My helper now had me chasing, catching and removing a spider, while trying to do my job.

My brain then jumped again and I was on honeymoon. Adam and I had had a wonderful wedding day with friends and family. We paid for the day ourselves, leaving us little for anything else. It wasn’t a mega bucks wedding just a lovely ceremony at our local registry office, followed by a really nice meal for the our closest friends and family and a reception afterwards followed by going to the Cat House our favorite night club. Not long after we had become a couple we had spent a week together in a cottage his mother had booked for herself and their gran on Arron. We had loved it there and as we got engaged within days of returning to Glasgow, it seemed right to go there again. We didn’t have the money left to rent the cottage so we went camping. I’m sure you can guess the connection to spiders as you already know I’m not scarred of them, but it isn’t just spider, it’s anything with more than 4 legs.

Great memories and both lead to distraction number 3, this blog!!! I really want to get this Facebook page done and no I’m not looking for distractions, I’m just finding them.

Around the world in ten miutes

I woke up bolt upright in my bed. For a second I wondering what had woken me and why so suddenly. Adam was snoring but I knew it wasn’t that, then a car door slammed and at once that yet again that annoying idiot who lives a few doors down had on his way to work ditched his rubbish then flung the lid back over the enormous communal bin. It has just passed 6 a.m. why are people so thoughtless? There is an hour and a half until my alarm is due to go off but lying back down on the bed is a much slower and more painful a proses than I remembered sitting up had been. I used to always get up if anyone woke me after 4 a.m., starting my day using the extra time to clean the house or catch up on emails, now I lie down and swiftly return to sleep. Seconds later the annoying buzz of daytime woke me again. I knew I was right about the time when I first woke and therefore I hadn’t been asleep for just seconds but it felt like it. My sole was pulling me back to the mattress but structure is important part of managing the MS monster, no matter how much I want to sleep, I have to convince myself out of my bed.

I’ve been trying to work on staying a sleep whilst looking as though I am really awake and moving around. I can now get around the house with my eyes closed out of need, unfortunately the sleeping bit as well is still escaping me. My eye site hasn’t been great for several years now, the MS is causing problems with my left eye but it is really my right eye that is the problem. I thought it was part of my MS but after tests were completed the reason that I could only see out of small clear spots and the rest of my vision was blurred was explained. I have Macular Degeneration, something else that nothing can be done about and for a bit more fun I am short sighted and with a need for reading glasses as well. I get a lot of motion sickness due to not being able to focus from close to far through blurred, blind and fuzziness. It took time but the first solution is to keep light levels low, bright light floods everything and makes me try to focus, drop the light levels and instinctual act of trying to focus is limited to a smaller field. It wasn’t much of a jump from there to on bad days just keeping my eyes shut, I’m quite good at it now, to the point of being able to walk into a room and locate an ornament by knowledge and touch.

I made it safely from my bed to the bathroom and then to my PC in the living room, lit the first cigarette of the day and once I had pressed the start button and I could heard it starting it’s boot-up session, I let the first rays or light in to the room, no not the curtains, the TV. Adam was still snoring with his head under one of the cushions. He has slept in the living room for several years now as he knows that I am easy to wake and that I also have to get a lot of sleep. When tired the pain is worse, I get easily confused and I stutter more. I love him for being so thoughtful but I am left feeling guilty. Our home has only one bedroom and no space for more than one bed, another bed wouldn’t really be the solution anyway, it’s his snoring that is the problem, not his strange need to use the mattress as a trampoline while he gets comfortable. Some nights he does join me, then neither of us get any sleep, he wakes me with his snoring and I try to turn him or move him to stop it, in the proses I wake him.

We both fell in love with our home a long time ago, when my MS was diagnosed we thought that we were covered by an insurance policy we had and that it would pay off the mortgage but it didn’t. We took it right the way to the ombudsman but we still lost. When we filled in the form there had been a couple of questions that I hadn’t answered correctly, simple things on the surface, I had forgotten that when I was 21, I lost my eyesight in my left eye for a few hours, I was expected to have remembered such a small detail, one that I totally forgot until I was sitting answering questions during my diagnoses tests. I had also said that I didn’t have muscular skeletal pain, now, I know that was wrong, at the time I thought it was right. I can hear the questions of why from all, if you had been to doctors and hospitals repeatably and constantly told that there was nothing wrong with you, I believe most people would have answered the same. You eventually begin to believe that you are imagining it for some reason and that you don’t have muscular skeletal pain, just normal aches and pains. The result was that the mortgage wasn’t paid off and we couldn’t afford to move, so here we are in our one bedroom, second floor flat, which yes we love but is totally wrong for our needs.

The first news stories of the day were finding their way through the half awake mist of the morning, nothing seemed to have changed since yesterday so I headed for the kitchen and coffee. As the kettle boiled, Adams alarm started playing the annoying little tune that he has it set to play each day. Now we are both awake and both starting another normal day. Coffee, a slice of bread and a handful of tablets, with the addition of another cigarettes, forms what I call breakfast. Although the tablets include something to protect my stomach, I have found that I need to eat half a slice of bread, then take the tablets, followed by the other half of the bread. This process means that I have a slightly higher protection, stopping the acid feeling and by eating the second half after the tablets, helps to push the tablets down clearing my throat. My day has now really started as it won’t be long until the tablets start working and the pain is reduced to a level that allows me to type and allows me to have contact to the outside world. It is only 10 minutes from waking and I have already been in and seen, the entire scope of my physical world.

Sliding transition

I can’t get myself moving today, not physically but mentally. My mind just want to coast not take in or even bother to process the simplest of things. My TV is on and I have been trying to play one of the games on my PC, but this numb fuzzy feeling is filling every spare cell. I’m feeling unbelievably lazy. No desire to move an empty coffee mug or even fill it up again, just a relaxed nothing. I suppose this is one of the few luxurious that unemployment allows you. There is no pressure other than to read through the job adds and apply for some. So far this month I have applied for 21 and had 11 refusals, at least this month they are actually telling me I haven’t got the job. I couldn’t believe that in December only 3 refusals for the 30 applications. So OK, I like no one else likes to get refusals, but I do like everyone else, like to know that I actually exist.

I have to get active, being forced into doing nothing is something that I never thought anyone would manage to make me do. This isn’t me. I’m not a lazy person. I’m not someone you find lying on the settee to watch TV, I’m the one who sits up on the edge trying to keep my back straight. I was the person who ran round the house before going to work making sure there were no dishes in the sink, ashtrays were empty and ‘Home and Gardens’ could have done a photo shoot at any second. Why, I’m not sure, may-be because that was how my home was as a child. But there was and is just me, not my mother and the 3 ladies who came round to the house twice each week to help her. Adam does what he feels needs done and he will never be the houseproud person I was and still at heart am. I’ve learned to live with spots of dust and things in the wrong place, but I’ve never been as bad as this. I’m kidding myself saying that it’s just today, it happens more and more these days and I don’t like it, I don’t want to like it.

How do you find the focus that working gives you, when there is no work? It’s not just the having a wage, it’s having structure with a purpose, centered activities and the planning of everything else round it. All I can center on now seems to be the 12 hrs of sleep my body demands. That leaves 12 more that are filling themselves with drifting and I’m scared by the vision in front of me of the day when even my PC vanishes and all I’ll see is the TV. I’ve seen it in others and now I can glimpse it in me. When I drift it masks the pain, as drifting needs no motion or effort, but it a strategy that doesn’t appeal.

The law, morals and luck

There are those days when you feel that everything is designed to not go quite the way you want? I don’t think that I ask a lot out of life. My home, my husband, my children, a job and may be a few good days of health every now and then.

Last summer I thought that I had everything I wanted and I was happy accepting each day as it came. Then I was hit by redundancy. If I had been fit enough to get out there and hit the agencies and businesses I know that I would have been working again by Christmas. Here I am 5 months on sitting at my PC as always, but writing this, applying for jobs and playing games, not working. If I was lucky enough to have bank full of money then, I could I suppose get used to this, but I don’t, and I don’t want to!

To add to everything I found out a few days ago that I probably had a case against my last employers to take them to tribunal. It was so tempting! The thought that I might get a few year wages really appealed. It would have been enough to pay off the rest of our mortgage and have a little left over. I had spoken to someone I used to work with and they confirmed several things that confirmed my suspicions and 2 Lawyers told me to go ahead with it. I thought about it all yesterday, even filling in the form to start the ball rolling. When I woke this morning I was really close to stopping it there. I was looking for something to push me further in that direction or make me push the send button on the form.

It is hard enough trying to get a job without another negative point against me, luckily I got the shove I needed. Teressa, my daughter, had emailed me questioning if it was the right thing to do. She will be pleased to know that I agree! No employer want someone who has taken a firm to tribunal. So right or wrong my lawyer contact has ended. Even when you know you are in the right it somehow is still wrong? I love life!

That sorted I set out on my normal search for work, I really am getting fed up hearing how great my CV is but still no job. It is always the same, sorry but this job isn’t possible from home. I wouldn’t be applying if I really thought it wasn’t possible. I can prove that I can do it, just let me show you! I think this really is the cruelest part of MS, not the pain, not the fatigue, not the mobility problems or the isolation it has enforced on me, it’s no one having an open mind to see what I have already done and what I can do in the future.

I started this post 4 days ago but I really haven’t been feeling that great and I just didn’t have the energy to return to it. I think the effects of my Dad dieing, the job situation have taken its toll on me, my MS kicked back hard. I try not to tell people about how I feel, so many o them take the slightest comment as an excuse to try and wrap me in cotton wool. I like you, need to live. I like you, get kicked from time to time. I like you, have the right to feel ill without it being something hugely wrong. I unlike you have MS, so what, I’m still able like you to do a lot of things.