Inside Connections

I am happy to report that this is a brighter day at last! I feel today that smiling is allowed both on the outside and on the in, the last couple of days have just been really strange and I really don’t know why, I have theories, loads of theories, but no answers as they are very different things. I guess none of us can truly understand what our emotions are doing, we have all laughed or cried while other stare in disbelief. For me it happens more than most as I know that I have damage to my brain that brings out strange emotional reactions when they are just not needed. It has to be 7 or 8 years since they last put me through all their strange tests of drawing odd object, recalling words, or memorizing list, the damage then was bad enough, I can only guess now at what the results would be. I don’t know if you have ever had to go through tests like those, as you don’t know what they are looking for all the time or if you are getting things wrong or right. Even when you have completed them all you have to wait weeks for the results and when they come much of it is in medical jargon so the truth of what they have found is still somewhat hidden. To sit and read a letter telling you that you have brain damage is an experience that I found difficult. I could accept many of the other results I had but to know that your brain is being eaten by something they can’t stop or predict is scarey. I have often had pains, pains I know are caused from nerves sparking across my scalp, but I have then sat wondering is that a new lesion appearing? I don’t think you can actually feel lesions but that is the way my mind works. In someways I would love to have a new MRI done and see my first one in comparison to what they would find now, it would be interesting to see what has progressed and where. They say that MS is the invisible illness simply because when it is mild no one believes anything is wrong with you, but it is also invisible to me. I can’t see anymore than anyone else what is happening.

I guess we all wonder from time to time what is going on on the inside. So many illnesses can’t be seen nicely displayed on our skins or by high temperatures or any other physical sign, so when a pain appears for no reason, we have a problem. The strange thing is that I still wonder, a new pain is a new pain and I have to decide for myself is this just my MS or is this something else, just like the problem I have with my intestine, no one as yet has given it a name, no one other than me that is, it’s had many choice names over the months. Right now I am sitting here with that pressure feeling right across the front of my body at the level of my lower ribs, there is pain in my right side about where a stitch would be and no answers, I just don’t see it now as being anything other than my MS. If you had such a pain though, what would you think it was, what would you imagine and diagnose, probably some of the same mad things I did but well I’m sure you understand what I mean. Our bodies are so difficult to live with sometimes.

I think I have checked what day it is today about a dozen times already, I am a bit foggy today, to be honest all though pain is hard to bare at times, not being able to hold on to thoughts or simple facts like this is Sunday is far more annoying. Confusion is frustrating and ultimately the most annoying symptom there is. I am always a bit confused, some might say a bit nuts, but those strange little repeat actions like checking the day of the week, is almost obsessional. In reality if there is one thing that is of no importance to me is the day of the week, everyday is the same so why my obsession for confirmation of where in the year I am. Habit is about the only reason that I can come up with. I have this image of the future where I have drive Adam totally nuts as well, by asking him that question twenty times a day because I am no longer able to check for myself. After years of sitting here day in day out at my PC I don’t think I can imagine not having everything I could ever want to know at my finger tips, my PC has take over much of the role that my brain used to manage on it’s own. What ever it is I have forgotten I have the answer here, I really believe that it is a tool that we should be giving to and showing how to use, to every person who has an illness that in time effects their minds or will lead to them being housebound. My PC has become my sanity and my link to life outside my home, and I know in my heart that there are millions sat out there right now totally cut off, who could be helped to reconnect with life by just having some form of internet connection. Simple and ultimately I think it would also save the NHS a fortune each year, just being connected changes so much that I think it actually changes how you cope with your condition as well.