I have just gone through yet another painful visit to the bathroom, it’s 11 days since I had last moved my bowels, but I have been taking a tablet twice a day that was supposed to soften the stools and I had hoped that I wouldn’t have to once again take Dulcolax. There is nothing like having a dream is there. Last night was my second night in a row of taking it and at last this morning I had a result but it was exactly what I had been trying to avoid. I have thought and thought about what could have changed in my life to cause this sudden and dramatic change and I can come up with nothing, but I have come up with a couple of things that I am going to try changing and see if they can make the slightest difference. I have porridge for my breakfast every day, but unlike most people, I like my porridge really thick and I do mean thick, you could even when it is hot actually cut it with a knife. I know that oats can hold a huge amount of liquid but as I make my porridge in the microwave, it probably doesn’t have the time to pull in the amount of fluid that they would if I was making it in a pan, so I am going to give it more time and more liquid to absorb. The other thing I am aware of is that because I have a body that likes to horde fluid in my skin, to avoid taking tablets to get rid of it, I am probably under the 2 litres I believe I should be drinking, not by much but still under, so I need to step that up, which is difficult as remember my day is about 5 hours shorter than most peoples. I know that without a doubt those extra hours in bed, spent on my back not moving is the biggest problem, as they allow my gut to just settle and do nothing, lack of exercise is a huge issue that I can do nothing about, so I have to give myself as much opportunity as possible in all other areas. I am also going to increase the Dulcoease from twice a day to three times a day, I need to find the right level for me, not what it recommends on the pack, I have some more arriving in the shopping today so I can work on that one over the next fortnight before asking the doctor again for help as it is rather expensive. I don’t know why but this is not one of the issues that I foresaw, but now that it is part of my life it is so easy to understand and so hard to correct, I guess it must be an issue for a huge number of people who just suffer in silence, again we really do need to talk.
You don’t know what I would do to just have a few weeks of what most would call normal life, rather than having to constantly fight with my own body. I suppose that I have spent my life just like most people, totally ignoring what my body really does. I used to watch my weight and kept myself physically active and fit, I never had a car so I never fell into the modern trap of not walking, I walked miles daily and did it without the slightest thought. When it came to how my body worked or why it did what it did, I didn’t really have the slightest clue, I liked to think I did, but the truth is I didn’t. Anyone out there who is reading this because they have recently been diagnosed with a chronic condition, really needs to stop worrying about their condition yet and start learning about what makes the rest of you tick and how to keep it ticking, as it without the rest of it working, well you are setting up issues for your future. I am not saying that I could have stopped my bowels collapsing into being totally useless, but I wouldn’t be spending time having to learn when my brain really is no longer up to doing the learning thing and I would have been prepared for all that has happened. In the last few weeks I have started reading online what are really PDF’s put together for health professionals who care for the severely disabled and dying, it is through these that I have learned that what is happening with my bowels was to be expected, but not one thing I read on any of the MS sites, even gave me a heads up. The fact that I have had to head off into resource material never intended for patients to read, I think is totally wrong, just as wrong as the fact I am reading document headed palliative care when I am still a long way from needing such services, just to find out the truth of what is happening today, is even worse. Why is there such a huge wall of secrecy around what happens once you are housebound and no long fit enough to exercise or lead anything close to a normal life?
I understand that many bodies that deal with conditions that can lead to being housebound and eventually bed bound don’t want to scare people by filling page after page with the details of what will or might happen, but there is a point when it has to be spoken about but still the answers always seem to be the same, we will deal with that if and when it happens. I am one of those people who find that just not good enough, I have been housebound now for 7 years, but still people seem to tip toe around me, not saying anything until I demand an answer. After 2 years of trying to get the help I need to manage what should be simple, going to the loo, finds me having to yet again do all the investigative work and then go back to my doctor to tell him what I have done, why I have done it and that I want him to prescribe the drugs I have been using as they cost too much for me to keep buying them. It just shouldn’t be like this for any condition or problem that is just part of living with chronic health conditions. Surely the first time it was clear that I was heading down the slope of not being able to manage this by myself and they had finished all the hospital test and found nothing, that there and then a program of management should have been put in place and I should have been told what was ahead of me. It should have never got to the point where my gut has stopped working and having to go through incredible pain and hours of online searching to work out for myself some processes that might just make the difference. Sorry if I am ranting, but these are the things about being ill that get me angry, after all, it is my body all I want is the full information and the way of dealing with it, whatever it is and I do mean whatever!
Please read my blog from 2 years ago today – 30/09/12 – Planting a Seed
I think my plan of sitting here at my PC is actually helping, I have spent the bulk of the last two evening just playing games while watching TV and my back is showing signs of improving. As I said yesterday I took some ibuprofen and it actually did help, Adam suggested what might explain it as in the pain was now at a level that it could help, were as a few days ago it was too intense to…..