I thought that things were picking up in general, but yesterday afternoon I suddenly started to go down hill, I was getting more and more tired and more and more uptight. I find that often happens, there is a growing tension in my body, almost as though all my muscle are getting ready to not so much explode, but to scream. By the time I was sat on the settee with Adam, I had gone past that point and I was crashing into a desperate need to sleep and actually feeling ill, something that doesn’t happen that often but when it hits, I feel bad. Adam spotted it happening, almost to the second it was kind of odd, he just suddenly looked at me asked if I was OK, I for once was honest and told him I wasn’t feeling well at all. MS and Fibro don’t generally make you feel ill, well not until all your energy for the day has gone, managing my energy levels means that I avoid feeling really ill, just tired and a bit off. I think we all know how that feels, you don’t actually feel like you want to throw up or that you need medications or anything like that, you just don’t really feel good in any real way. I don’t know what went wrong yesterday but it went and I was paying the price. I still stayed up, something that I shouldn’t have done but Tuesday is one of the few days when I can just put the TV on to one channel and watch, no thinking about what program we want next, having to fast-forward through annoying adverts, just sitting on the settee watching. It is one of the odd things that I never thought that I would do, but thanks to my health I have learned to veg out and not care about the dust I know is there, which luckily in the evening with the light levels are low, even with my glasses on I can no longer see. I made it through to 9pm but I was glad to head off to the bedroom and lie down, knowing that within seconds I would be asleep.

I thought that when the alarm sounded this morning that I would be back to my normal self and ready for another day, but I woke feeling just as I did before going to bed last night, I’m tired and ill. I can’t help wondering if it is all the gunk oozing from the ‘things’ in my mouth has something to do with how I am feeling, or if it is just once more a low point with my MS. I hate all this second guessing that life now holds, nothing is just as simple or straight forward as life used to be. I know that I do it all the time, I still grasp hold of possibilities that don’t really exist and as the tears run down my face, well I also know that I have just written the truth again, I am grasping hold of what isn’t there.

Every now and then I come across well meaning people on twitter who go out of their way to offer me solutions to what they believe my problems are, the favourite one is telling me that I don’t have MS or Fibro at all, that I have either Lymes or all I need is some special diet that they know worked for a friend of a friend, just occasionally someone they actually know. I know that every single one of them is well meaning and only want to help, but for me, well trust me with 30 years of ill health, I have looked at every possibility and tried any that I thought might make a difference. When doctors fail to find out what is wrong with you, well you try to do so yourself. I have been ill long enough to have the strength and knowledge of how to handle their suggestions and how to politely turn their offers down, but I find myself more and more worrying about the people out there who are still at the beginning of this nightmare. To me, twitter is a wonderful place filled with wonderful people, but to someone at the start of this nightmare, I think it is full of people who will do more harm than good, to an extent that also includes me. I at least won’t build up false hope, I am honest and straight forward and say this is how it has affected me, it may not be the same for you, but to many of those I have come across are holding out hope that is so easy to grasp hold of, because we all want to believe that the truth isn’t the truth at all and there is a way of getting rid of it all. I grasped today at the ‘things’, far too small to be making any real difference to my health, but I grasped for a few minutes and I felt better as I wanted it to be true, all false hopes do that and not one of them lasts past the next bad phase. Unfortunately, we are all human and we all want to believe that anything else but the death sentence, or health disaster we have been diagnosed with is really happening to us, even if we can believe it is something else for a few minutes, we will. False hope, isn’t hope at all, it is a lie and it is a cruel one that hurts worse than those who throw them at us really know.

The hardest lesson I have learned is that there is nothing, no magic diet, no incredible pill that is going to make me better, the odd one here and there might make me feel better for a short while and don’t knock it that is important, but there is no cure. I just wish that something could be done to stop all those false hopes from reaching those who need to put what life they have, into learning how to make things better for themselves, for their personal form of their illness and their personality. I didn’t intend to write about any of this today, but it happened, that is often the way of my post, illness is incredibly personal, I guess that why what I write often surprises people, I open up the most personal things and throw them out there into the world for all to read. How we survive illness is a mix of what our doctors do for us and what we do for ourselves, the hard lesson was that it is the second part that is the biggest and the one that will make us feel the best. Doctors deal with control of the symptoms, it is ourselves that has to work out how we deal with what is left and how we as people are going to live the rest of our lives. What works for one, may not work for another, that is where the personality part comes in, illness teaches us more about ourselves than I ever thought possible. How we react, what we believe in, what we disbelieve, are we leaders or followers, happy or sad, you name it, it all plays its part. If you are looking for hope, well look for it inside yourself, the hope you will find there will make you feel far better than the latest diet, or magic solution someone who knew someone else heard of and passed on to you.


Please read my blog from 2 years ago today – 03/09/12 – Employment reality

So here we are the first full week of September, it is a year ago this week that I was made redundant and I naively thought that although it wouldn’t be quick, I would now be fully employed again and working full time from home. Why I thought that I have no idea. When two of the company directors came here to see me and gave me the news that I would be amongst the people to go, I did…….