Yesterday seemed to pass without much more trauma or issue, I was sore all day and even sitting was back on my list of things I didn’t want to do but had little choice over. I kept waiting all day for my body to demand that I returned to the loo, but there was nothing but pain and silence. I read through what I managed to find online and everything I read backed up the first site I found and my thinking, but how to fix it permanently is a very different issue and one I tried to talk to Adam about yesterday. My idea is that I am not going back to the doctor and back to their long drawn out and invasive way of dealing with my bowels, I am going to do it my way and see if I can manage by myself. There isn’t anything on the surface that is difficult about it or different to what a lot of others might had already thought, but there is one huge problem and it’s one of the major issues that landed me up in this mess in the first place, my memory. All I want to do is on the third days after my bowels last moved, to take a laxative, hopefully, that way I will keep my insides as clear as possible, that is as long as my bowels will play the game. I should say here that I have been trying to keep on top of this for a long time now and the more I thought about it, the more I managed to piece together what went wrong.
It started a few months ago when out of embarrassment of having to go into the kitchen before I went to bed and taking a laxative tablet in front of Adam meant I start to not take them, I know that is silly but we all have silly things that embarrass us. When I realised that I hadn’t been to the loo for over two weeks, I moved the tablets from the kitchen to the bedroom where I could take them after I had said goodnight to Adam and he had returned to the living room. Unfortunately, I it was a really bad plan, I just kept forgetting all about them and that is where the whole problem stems from. I got away with it for a short while and I remember about 4 weeks ago taking a laxative, which I think worked but I don’t really remember, then nothing until 9 days ago, now that one sort of worked, it was the first time I was aware of a change to passing painful lumps, but only a very few of them, thanks to the pain I was quite relieved at the time by that, I know now that I should have been worried. On Friday night I started taking my antibiotics and as they say, the rest is history. Last night I took a laxative before I went to bed, as I know I am still not clear but so far it has done nothing.
I have to get this sorted but if to prove my point, last night something else happened that proved just how bad my memory is. About two or three months ago I moved my evening meds from 7pm to 8pm, I wanted a better cover over the night so that I might not wake up in quite so much pain as I had been for a few weeks. Adam was helping me with this change and he set an alarm on his phone to make sure I remembered to go and take them, as on a couple of occasions I had remembered not to take them at 7pm but forgot to take them at 8pm. Meds don’t last a straight 12 hours, they seem to vary a bit, I think it depends on what you have eaten and so on, but anyway I was missing them, going to bed at 9pm and lying there in pain wondering what on earth was wrong with me, going round and round in my head the activities of the day, looking for the reason, then suddenly remembering I hadn’t taken them. By that point, the pain levels were rising by the minute and taken the missed ones still meant between 10 and 20 minutes of unnecessary pain, so Adam set his alarm. Last night I went to bed at 9pm as normal and got up again within 20 minutes, I hadn’t taken my meds and Adam hadn’t reminded me. I sat with him for the length of a cigarette after taking them, he had cancelled the alarm because he thought we had set the routine and everything was fine. It seems that not only me still has the blind hope that life will just work as everyone else’s does, it’s hard to accept that something as simple doing something at the right time, just doesn’t happen for me.
The list of things that I need his help with is growing, all of them are so basic that I would expect a 10-year-old to be able to handle them by themselves, but here I am unable to take the initiative when it comes to taking a shower and not even able to take what are incredibly important to my tablets. I am not going to go through all the so-called coping strategies that no longer work or why they don’t work, the fact is they all stopped working for me a long time ago. Routine only holds true if I have a collection of things that mesh together, in the morning I take my meds while I am making my breakfast, well I do if I am having porridge, then it is easy, but during the summer I didn’t always have porridge as it was too warm so I made a cold breakfast of rice cakes and Greek cheese, twice I forgot and had to fetch them as the pain rose high enough to remind me of my mistake. Routine only works for me if every step is carried out in order exactly the same every single day. Make a tiny change, miss one step out and it is forgotten, with no way of knowing it was even missed until it eventually becomes all too clear. It is hard enough for me to hold on to what is done or not when every day is totally identical to the one before, so the problem with sorting out a routine that works over three days, are immense and require another humans intervention as I just know it won’t happen otherwise.
I am losing myself more and more each day, I never thought I would need someone to tell me what to do, ever. It isn’t just the loss of independence or the pain of knowing your mind is failing you, there is something more painful that I can’t quite put my finger on, it is like someone is stealing me, that I am somehow becoming less than I was and worst of all there is no going back, no pill that can ever undo the damage that has been already done.
Please read my blog from 2 years ago today – 16/09/12 – Sulking
I am in a really down mood today, Twitter is part of it as they wiped everything over night and I have wound myself up over that in the first couple hours of the day but the problem is almost fixed so I am a lot calmer again. As you know my emotional reaction to things is screwed up so what should have been….
You should think about taking nonstimulant lax/stool softener like docusate sodium everyday I do It will help I promise espec with all meds u take and not being activeNoone needs to go thru this much pain ….PKK
“it is like someone is stealing me, that I am somehow becoming less than I was and worst of all there is no going back, no pill that can ever undo the damage that has been already done.”
This is my reality completely, but it’s not just a feeling, it’s knowing, and I have nobody or nothing to live for or that loves me. All I want to do is die, and I will, soon. Somehow I will get what I need and put myself out of my misery.
My life is HELL, and I spend it 24/7 in bed, crying for everything and everybody I have loved and lost, knowing that I am permanently disabled, will never again have another pet, my own home, winter clothes, friends, or be able to feel happy for even a moment.
I cannot relate to the person whom I once was; I wish I never was that person because I wouldn’t miss being her so damn much now.
People who say that suicide is never the answer are WRONG. They live in a glass house. NOBODY should have to live in misery until they die a natural death. I don’t deserve that, and I believe in the right to die.
Thank you for sharing your blog and being so open.
I feel much empathy for you, and I admire your ability to express yourself so well.
Take care. I wish the best for you.