Loneliness is something we have all felt from time to time, its part of life, but when you are ill or even housebound, there is a new loneliness that appears and it has nothing to do with having people around you. Being seriously ill, especially with a rare condition is a loneliness that it is hard to find the right words for, as you feel as though no one on this entire planet is feeling just as you do, that there isn’t a single human soul that can truly understand what you are going through. For me being housebound isn’t something that makes me ever feel lonely, being ill with PRMS, is often the loneliest place on earth. I know that MS along with many other conditions doesn’t have a clear path that anyone can say this is what will happen next, or this is even what you might expect in the future, so the chances of my having a health twin out there is almost zero. Right now and from it’s beginning of my MS to my eventual end, no matter how many people care for or even love me, I am totally alone. Just occasionally, there is a flash of someone else understands, but they are moments that are set on certain symptoms, not the whole picture, just parts, but there are things that could change out there, that could actually help the millions of people out there who like me are on a solo path.
I did some digging around online yesterday afternoon and I eventually found not a medical site or a one of the MS sites, no that would be like them actually admitting that things can and do get worse than they care to even imagine. I actually came across two sites, both like mine written by actual people who have MS, I was surprised to see that the number of blogs in the last three years had skyrocketed, most unfortunately still shy away from anything other than the average symptoms or are written by people who have RRMS, but as I said I found two slightly more detailed ones. Neither in my opinion gave a full detailed account, but both did talk about how bad the shutting down of their bowels had become. Both talked about the fact that they too could go weeks without any movement, despite taking all the medications both from the doctors and their own discovery, but shied away from describing the pain or of having to resort to any other intervention and one had eventually had to have a stoma. It was oddly good to find that I am not alone, but it also made me once more angry that all the rest of the sites I found said nothing more detailed beyond the one-word, constipation. I know I have had the odd rant in the past at all the sites out there and the doctors who refuse to talk about what could possibly happen, or how painful and distressing the whole thing can become and how they all seem to refuse to tell the whole truth about anything, but this is a perfect example.
When you are battling against any disease that is destroying you slowly, the one thing you want more than anything else, is to be reassured and know that what is happening to you, is normal. The other night when I couldn’t straighten up because of the pain around the area where my appendix is, the first thing I did was check online to see if constipation could be the cause. I had never heard that it could be nor had I ever heard that it could cause extreme pain in my diaphragm either, but I had enough common sense to realize that it was possible, I had checked online earlier when I had felt it briefly when I got up from my nap, just to be sure I wasn’t guessing incorrectly. For someone younger than me or who doesn’t have my life experiences, well I can see quite clearly how many might had been calling an Ambulance, even Adam was expecting me to have called 999 by the time he came out of his exceptionally fast shower. I have never found any site that actually explains how for example, constipation feels in detail or how it can cause so many other things that on the surface, well don’t seem to be truly connected. Like most people until I started having pain and problems a few years ago, my idea of constipation, was quite simply having to strain or passing dry and painful stools, at it’s worst it meant not going to the loo for a few days in a row, but that was it, minor, annoying but not something that could actually impact on your life. I know that it can be argued that all medical sites are trying to do is to give an overview that could apply to the average person with average health, but to find that even dedicated sites for conditions where it is a symptom of the condition, to still hold onto the softly-softly approach, well to me that is actually cruel and possibly even dangerous in some cases.
I truly wish that there was a main stream easy to find site that actually had the guts to lay out everything blankly and truthfully the details for every symptom or condition, from its mildest form to the absolute worst case scenario. I have had the guts to sit here and pour out the details of my daily life, the symptoms exactly as the feel at that moment and their impact, not hiding anything or even feeling the need to hide myself, why is it that no one else is willing to do the same for every medical condition and or symptom there is. I started today by saying being ill is the loneliest place on earth, it is also a loneliness that could so easily be fixed.
Please read my blog from 2 years ago today – 19/02/13 – Together forever