Thanks to all of you who have left messages and suggestions both here and on Twitter, I have to admit that one made me laugh, although probably valid. The suggestion was that I bought a large quantity of really cheap glasses so that when I got angry, well I could smash them. I have to admit that anger seems to be one of those emotions that feels as though it is missing or at least not fully formed in me. Don’t get me wrong, I do get angry, but it never lasts more than a very short time, after that it either turns into guilt or a list of questions about what just happened and how to avoid it in the future. I suppose that is one of my personality quirks that allows me to cope with my illness so well, if I had built up anger towards the people who have failed me over the years by failing to make a diagnosis or the idiots who reacted to some of the things I just have to live with badly, well I would be gibbering in a corner somewhere as the amount of anger would have driven me mad.
As I expected yesterday when I wrote my post, I didn’t go to the loo again yesterday as the effect of the laxatives had worn off, unfortunately I know without a doubt that I am still carrying around a huge amount of food. I had noticed that one of the things I was passing looked like sweetcorn, but I just dismissed it, as I honestly couldn’t remember eating any sweetcorn for ages. It wasn’t until I went to bed for my afternoon nap that I suddenly remembered when I actually had last eaten it, Christmas lunch, as yesterday is only the third time since then that I have actually gone to the loo at all, the two previous visits being just as useless in quantity as yesterday’s, well it is actually highly possible that what I saw was in fact sweetcorn. The last time that I actually managed to clear myself through, it took four days in a row of taking the same laxatives as the other day, passing small quantities each time, then a fifth dose which was a double one, before I felt as though my body was free of everything. The downside of that was the pain it put me through and I really don’t want to go through that again. Ever since then I have been taking 4 Dalcoease every day to try and keep things just that bit softer, I really thought they were helping until yesterday and now I am not so sure, but I am going to keep taking them for now. There isn’t a single day that I am now not in pain at some point due to my stomach and the feeling of pressure is often so intense that I have this growing fear that my intestine might just rupture, especially when one of the large lumps suddenly moves, that is unbelievably painful. As yet I haven’t spoken to my doctor, I felt yesterday was the wrong time to do it as I needed to get everything straight in my head before I even made that phone call. As I said yesterday, this time I am going to keep at them until something more constructive than just being prescribed things that simply don’t work for me.
I know I have said a hundred times that there are so many hidden other aspects to any given chronic illness, but they are now starting to become as major an issue in my life, as my list of conditions. It seems as though they, like my PRMS are progressive, I never thought that the problems I was having going to the loo 3 or 4 years ago, would ever land up like this. Looking back, well I was deluded when I thought that was as bad as it could possibly get and if there was a way to go into rewind, I would happily go back to those days. When you are diagnosed with a chronic illness we all rush online and read about the symptoms and if we can find it, pieces written or even filmed about life with those symptoms, what has been totally missing is all the other things that are rarer, but caused by our illness. Go now and read what every you can find about any form of MS and it will briefly mention constipation, not once have I found anything that even gave me the slightest clue that it could ever be like this. If I were to say what the most frustrating thing about living with PRMS is, it’s the lack of honesty from every place that even mentions the subject. Personally, I would have preferred to be scared out of my wits, rather than to be lied to over and over until they have to admit what I worked out long before they eventually even bother to tell me, read through my blog and you will find over and over occurrences of the same thing with other symptoms.
No matter what the doctors say or don’t say, the outcome of what is happening just now isn’t pretty. I knew from the beginning that my PRMS would be the source of my demise, but I never thought that it was going to either stop me from breathing or from disposing what I have eaten, two things that life is reliant on. Yesterday and today, I have done a lot of reading, I had to take the PRMS out of the equation, as that was getting me nowhere, but everything I have found kind of says that the medical profession don’t have any real answers, all they can do is tinker around the edges and hope something will make a difference. It wasn’t the answer I was looking for, but it didn’t surprise me in any way, it actually made far more sense out of the ridiculous things that were said to me when they were doing all the scopes and scans. What they were actually trying to say, wasn’t that they couldn’t find the answer, other than my MS after which I was sent home to get on with, what they were really saying was, they couldn’t help. I just can’t accept that, I may not be able to tolerate the disgusting gunk they want me to drink, but even if it means having to have another tube down my nose and throat to get the stuff into me, well I will accept it and have it. There is always a way around these things and often what it takes, is a little thinking outside of the norm, something I know the medical profession find really hard to do.
Please read my blog from 2 years ago today – 05/02/13 – Finding the words
Well, it has happened at last, Glasgow has had its first fall of Snow! I peeked out around the curtain this morning as Adam said it was snowing before he fell asleep, it clearly had lasted a while as it is more than a covering but already it is turning slushy. The cold that hit me on just moving the curtains was enough for me to……