Everything is going wrong

Posted on August 31, 2013 by livinginalimitedword

It is beginning to feel like the entire world is against me, my PC has almost die! It thankfully gave me a message yesterday afternoon saying that the hard drive was about to die, it was so late in the afternoon that there was nothing I could do about any of it, especially as I didn’t have a single blank DVD, all I could do was switch off and pray. This morning has been spent backing up everything on to the discs Adam went out last night to buy, it is times like this, that you are suddenly really glad that supper markets don’t just sell food any longer. I now have 6 full disc so if it dies at any point now, I at least have the tools to fix it. I am guessing that it will be a case of having an engineer here on Monday to fit a new drive and this time put everything back on it, as spending another week going round and round in circles and driving myself mad.

I am actually beginning to feel really ill thanks to all of this, as I said yesterday it is really draining and thanks to that, I feel as thought I don’t have full control of anything. In the past few days I have also had another problem which I am sure is behind part of how I feel right now. I think it was on Monday that I suddenly needed to go to the toilet, to my surprise I didn’t have the usual process of having to sit there and wait while my bladder drip by drip emptied, but not this week. I found that it was gushing out of me and there was some but not serious pain at the end, to confuse me even further the same sharp pain was just at the opening to my bladder, but it spread out to the top of my leg and was also in exactly the same place in my bowel. All week it has been the same, regardless of which I have emptied, both have cause pain and just to add into this weir game, on Thursday I was on my way to the kitchen and I had to make a rapid detour to the bathroom, but not as rapid as I really needed. If all of that wasn’t enough, last night I wet myself while I was asleep. I woke due to the sensation just as it started, so it wasn’t that bad, but I have never done that before in my life although I have feared it would or could happen at any time, just part of the MS fun.

There is something about wetting yourself that feels as thought the worst thing in the world has ever happened. I suppose that it goes back to being a child and all the palaver of potty training, I’ve never even then wet the bed, but it still feels like I have done something terrible, when what I did was something uncontrollable. But I guess this means an other phone call to the Dr as there is clearly something wrong, I guess it will be more antibiotics. It is so easy for me to write all this now, but I can put a bet on it that when I have to vocalize it, I will find it incredibly hard and I will stutter and just hope he will get the picture.

Right now I have this great urge just to go to bed and sleep again, I could actually close my eyes right now and sleep sat here, that is how tired I am. All this extra work and constant brain bashing has affected every part of me. I hate it when my body want to close down like this, especially when I have so much to do. It is almost as though there is some part of me that avoids extra work, it has this much better idea, sleep! It’s 11:45 and nothing that needs doing on Facebook or Twitter has been done and I want to sleep! As I said at the beginning the world is against me, nothing is going the way it should and I have no control of any of it. May be sleep is the best option, as it is the only way that I can’t do anything more that might kill my PC for ever and to me one that doesn’t work well is better than one not working at all. I just hope on Monday it can be fixed and life will start to return to normal:)

PC, what PC?

Posted on August 30, 2013 by livinginalimitedword

I am getting so far ahead of myself, telling myself every few minutes that that is it I have everything back in place, a few minutes later I find once more I’m not. At this minute my beloved PC is only partially working as it should, there is still so much more to do and I just want it done. The last few days have been total hell, I really am not up to this IT stuff any longer. Lets face it if you can’t remember one simple password, one you have typed in several time a day for several years, well what hope have you. I spent most of Wednesday being conned by a company that wanted to skim £167 off me, they thought I was totally green behind my ears and when I told them I have the windows 7 software and all I wanted was for some one to do the work correctly bring my PC but to or as close as possible to what it should be, they said the price would be the same, in other words they made their money off the software not the work. I then did the sensible thing and I called Dell, and hour and half talking to a really nice guy called Ivan who helped me step by step through the system to get the basics done and all for absolutely nothing, no premium rate call charges either, I was well on the way back to actually being able to log in so I could fix everything else.

It was when I was speaking to Ivan that I came up against my memory for the millionth time that day, I had to give him 2 email addresses as I wasn’t even sure about that, when I couldn’t see then to check, I managed to give him two that don’t actually exist. So where all the notes he kept telling me he was sending to help me with the rest of it have gone and I am too embarrassed to phone him again. I do still have loads to do but much of it is waiting for all the updates to download and install, so there is time to type as well. I don’t suppose that it comes as any surprise at all that I am running on low, well even lower at that at several points, it is all taking a lot out of me. I know that I have physically done nothing out of the normal, other than a few trips back and forward between this PC and Adams laptop, but the mental stress levels have been sky high so I guess I am possibly faced with one hell of a crash when it is all complete. Already I ache all over my entire body at a level far higher than normal, making my mind work on jobs it hasn’t even thought about for the last 5years, is hard. It is amazing how much you can find missing when you start looking for it, it actually took several hours just to get the right password for that essential email account, life became slightly less stressed after that as I knew I had a good chance of restoring it all in time. That is the one thing I forgot, that it is still going to take more time. I really got ahead of myself yesterday, flying onto twitter, Facebook and here saying normal service would start again today. Normal will take longer, but there will be something at least! At this moment I just wish there was a magic wand or a little guy who could finish all off for me while I sleep.

I know I have skimmed over most of this but the most difficult part of the last couple of days has been having to accept that I can’t manage to do even on simple task once and have it done, I have redone and redone everything as I keep screwing things up. Just remembering the route I used a few minutes before because I need to redo it, failed again and again. There is no way that I would be able to hold down a job, any company would have sacked me a million time this week. When you can’t think or find the reason for something it all becomes harder and harder, because of the stress level rise you also become tireder quicker and that too makes it more difficult. As an ex manager I would give me a job, not even on that is simple and repetitive as I would still be asking every few minute, “what comes next”. In my one little bubble well that is excusable, no one not even me is paying me to do this, but in the outside world I would be treated as an idiot. I have known for a long time that I have been loosing it, that I am not up to dealing with life in the fashion I used to, that I can’t even hold conversations and so on, but this has all just been confirmed a million times. I don’t have a brain, just a mushed up mess with the odd bit left that functions occasionally.

At least today I will be sitting all day long and I have already set myself the achievable task of doing what I can, not what I want to. There will be something online for everyone, just not as much as they are used to. Most of all I am listening again to what my body wants, not what my mad hyper-speed mush thinks it wants. If that means I need to lie down, I will lie down, these things are sent to try us and believe me they are.

Still ALIVE and still HERE!

Posted on August 29, 2013 by livinginalimitedword

This has been the first time I could add a post as my PC decided to die, this means that I am having to totally rebuild it from the very beginning the reinstall of Windows 7 and everything application else on top of it. I thought I might manage to be on line properly this morning but I hadn’t allowed for the fact that my memory took over and I had no recollection of any of my passwords, including the one for my email account, without that it meant that I couldn’t even reset any of the other including this one. It took most of yesterday to cover those first points and eventually get into my email, but I still had to find all the applications that I use and reinstall.:(

It has been along process to get to here, but unfortunately there is still a lot more to do, I am hoping that I will be able to make it back on line fully by tomorrow, but I thought I should add a note here so no one worries about me. Trust me apart from exhaustion, frustration and a memory that still refuses to help, I am fine. So fingers crossed that I all going well tomorrow it will be service as normal 🙂

Discoveries and losses

Posted on August 27, 2013 by livinginalimitedword

I never thought until today just how many who read what I write will actually not understand every word of it, I suppose it is a position that is compounded many facts. I am aware that I have a large number of Americans who read and although we share a language we also speak very different forms of it, add in that I have lived all over the UK and collected a huge mix of colloquial phrases and words, well I guess it could get to the point quite often where a dictionary could easily be required to assist. Just be grateful that this isn’t a podcast as my accent is a well mixed and varied collection of Aberdoinian tempered by elocution lessons, then years spent in an English environment, before the same time over spent living in Glasgow. It used to happen all the time when I was a DJ that the people of Glasgow would ask me which part of England I was from, when I said the same part as you, many just wouldn’t believe it. It is so wrong but out of all the money spent on my education, the one thing that has been of any use to me and has alone meant I could find employment before others, those elocution lessons where worth there weight in gold. These days it is no longer fashionable but I would strongly suggest everyone has them, even when your accent isn’t that strong, mine never was but it taught me to pronounce words so others could understand me, not to hide the fact I am Scottish.

The temperature rose again yesterday, not anything like it did the other week but enough to have left me feeling rather wiped again. Combine that with the fact that I still don’t seem to be regaining my strength and I wasn’t really at my best. I haven’t felt as though I can lift anything or move anything around since the really hot spell last month, even the simpler acts of lifting a bottle of coke to top up my glass is getting harder and harder to do. In the last few weeks I am also finding it harder to manage to dry myself after my shower, I have found so far that a three towel system is working the best at the moment. We have these wonderful huge towels that I bought when we refurbished the bathroom a few years ago, but I am now find them terribly heavy. The best system I have managed to come up with is to simply wrap myself in the large towel, then tucking it so it stays in place. Then I tie my hair up in a hand towel so that it no longer drips all over me. I use the third and final towel, another hand towel, to dry complete anywhere the patting has failed. It is becoming a bit of a fiddle but for now it works, the real problem is that after the energy of showering has been used, well there is little left to even lift the towels, far less to be able to make full use of them. If it was possible to break the process down into sections without freezing somewhere along the line, I wouldn’t have a problem, but few things are that easy these days.

While I as drying myself I have once again also managed to find some kind of, well I would say rash but it’s not, they are hard tiny rash like bumps, almost with a feel of being scabbed over. I haven’t at any point found or felt itching, bleeding or weeping, so to find them right in at the top of my leg, it’s some I can’t remember ever having anything like. Having that in mind clearly they are not something to worry about, now covered in Savlon, I will wait and see what happens. The less flexible I become, the more of these strange things just seem to appear, probably because I can no longer take care of my body as I used to. I can’t help but wonder what the future will hold as I am in little doubt that this is just the start. Finding that made me check anything else I could reach or see, my array of bruises, lumps and marks of the last few months are still there. I have never known bruises to remain so long, but they aren’t getting any worse so I suppose that at least is something to be pleased about. One thing I wish I could check and that is my weight, our bathroom scales aren’t working, they require a new battery but I can’t open the fiddly back piece to get it out, just so I can find out what it is and buy a replacement, I will have to ask Adam again. I do try not to look at myself in the mirror more than I have to, but I am under no illusion that I have lost any weight, it would just be nice to confirm how bad things are.

Our own images of ourselves always seem to be distorted from the actual facts. The more I know that my body is nothing like I would like it to be, I can only use my imagination to undo the damage that has been done. I can’t bare to see myself if the truth is told, but there is nothing I can do about it. The less able you are to exercise, control your diet or simply be a real normal human-being, the faster your body destroys itself. It is probably the cruelest thing that illness does, I can stand the pain and so on, but not being the me I had imagined myself to be in my 50’s, hurts just as much. This isn’t vanity, it is more basic than that, it is a feeling like someone has stolen part of me. We all rely on the image we portray to the world, when the tall slender woman I was has gone and in it’s place something that has little to no comparison to the past, well it’s really hard to know who you really are. Who we are is more than image, but believe me it is a bigger part of us than we would all like to admit. So as I said, illness has stolen a huge part of me and unfortunately left me with something uncontrollable and I hate being beaten.

The world out there

Posted on August 26, 2013 by livinginalimitedword

I often find myself feeling increasingly guilty in not personally answering every tweet, comment and message that I get, but as time goes on it is not only harder because I don’t have the energy, but truly impossible to maintain a personally link to with over 35,000 people? I never thought that my life would be of any interest at all to even a handful of people, far less the number I find myself with these days. I am not stupid enough to think that every single one of those listed as friends are anything like that, many will be nothing but passing clicks and occasional re-tweet, or re-post depending which site they are on, but there is a huge number who’s avatars have become the faces of people I do call friends. Social media has opened a world that I was at first very reluctant to go anywhere near, but I would now recommend it to everyone who is housebound, as the world it creates is amazing. I have found myself now living with people spread all over the world and with people who know everything about me, but for most I know a tiny fraction about them. No one has to gather as many people as I have, it is actually quite easy to keep it at a level of people you really can call friends and have ongoing conversations with, but once my followers went past the 2000 it just exploded. I don’t know what it is about me that draws people to me, but they just keep arriving and I keep welcoming them. Somehow without ever meaning to do it, I have become some sort of guru on happiness and life, people find me inspirational, when what I started out to do was simply to highlight the truth of being housebound with a chronic illness and that neither are the end of life.

I never thought that I would find myself the center of anything and especially something that big that I would find daily that I just can’t be a polite and caring as I would like to be. I was brought up to and actually really believe, that politeness is important, so finding myself daily not able to answer or thank every single person for their message, is difficult. I guess that is the thing that I feel most bad about, but on top of that I rarely now have the time to sit and read other peoples blogs as I used to. Both Friday and Saturday for example, it took my over 5hrs just to go through everything on Twitter that had come in over night. That of course is my night, not the one belonging to everyone else, as I close Twitter down around 5pm and I don’t return to it until 7:30am, a lot happens in that time. I keep telling myself that I need to somehow develop a control system, something that means I don’t spend my life on Twitter, but then there is a problem, Social media is my life now and no matter how I have tried, I never found a way of controlling life. So to anyone who may feel that I ignore you, I promise I don’t! I ignore no one as I read everything and answer were the subject is away from what I am going to write about that day, there just aren’t enough hours in my day, or much more of me left to give daily, other than in the way I already do now.

It is amazingly strange how things in life that you always thought would have no use, no place and would contain nothing of interest, can actually be the exact opposite. If somehow I lost all contact that the web permits me to have, I honestly think now that my health would be a lot worse than it is now. For all the minuses I have found, there have also been 35,000 positives, just having the knowledge that that many people if only for a minute felt that being connected to me was a good thing, well what bigger compliment could I ask for. When you are as ill as I am, to just switch on my computer and instantly have people there to talk to if I want, or just to read what they have had to say can really lift my day. Adam can’t be with me 24/7 but the world can be and I also know they are there even when I’m not. As long as I have the ability to type, I have the ability to break out of my limitations and interact with life, I can never really be alone.

Just sitting here writing, be it on Twitter or here has the wonderful effect of distracting me from how I feel. I can’t get rid of all the symptoms, but the distraction when I am absorbed in what I am doing is a gift that I am so grateful for. I have said it so many times that I fear loosing my hands and the reason is simple, not because I couldn’t feed myself or any of the simple required actions of life, but because I wouldn’t be able to type. The less I am able to speak, I also know that typing will become an even more important gift, I just wish I could learn to speed read. Life always brings you gifts to replace the things you loose, I lost my health and found social media, I just wish it was something I could give to so many more. There has to be at least 100 friends for everyone, if not more.