Just after I went to bed last night I was hit by the most excruciating pain that I have been in for quite a long while. Just before I went through to the bedroom I had felt the first milder wave and had headed to the bathroom in the belief that at last after three days of taking both Dulcolax and double doses of Dulcoease, I was at last going to have a result. I couldn’t believe the other morning when I suddenly realised that I had done it once again, I hadn’t been to the loo since Boxing day so drastic steps were required. I really have to get this under control, you would have thought that I would learn my lessons and not keep repeating the same stupid mistake time and time again. When I was lying in bed I honestly thought that my gut was going to burst open but the pain was so high up, that I knew I had no choice but to just put up with it until it was ready to actually work. With each wave I broke into a mild sweat and as it built I knew that lying down was totally the wrong place to be, I had started to have a weird pain I have had several times in the past. I don’t know where the connection comes in, but I get a really sharp pain in my head, to be precise, right at the top on the right-hand side. It feels as though someone has managed to push a knitting needle through the skin and into the bone and it is stuck there, just for the hell of it, they are then twanging the end of it sending the vibration deep into my head, even odder it disappears when I stand up. It just kept getting worse in line with the pain in stomach and I had no choice but to get up again and to walk around the bedroom for a couple of minutes in the hope of easing things off. Adam was in the shower, so I had the perfect excuse to head through to the living room and light a cigarette, there is a soothing effect from just doing something totally normal but I couldn’t manage to sit down so I stood leaning on the arm of the settee and trying every few minutes to move around a little as there is no doubt that walking is the best pain relief along with the best way of letting your insides move everything downwards. When my body lands up in this mess, I always find myself almost laughing as the only way I have learned to handle it is to use all the things I learnt from having a baby, it might not hurt as much as that, but last night it wasn’t that far off, just much sharper in nature. I really worry about the future when I am bedbound, how on earth are your bowls supposed to work without any normal actions left to assist their work? As is always the way with my body, it decided suddenly that I couldn’t wait a second longer and Adam was going to have to leave the shower for a couple of minutes, I left him dripping in the hall while at last the pain actually had a purpose.
I have lost count of the number of times that I have found myself standing at the bathroom door sheepishly asking Adam to get out of there as fast as he can, it’s just one of those things that neither of us like, least of all me. When at all possible I try to go to the loo before he goes for a shower or clean his teeth, we have both learnt that I have no control of my bladder or bowel and should they decide the time is right, nothing can stop them. Last night was just another example as none of the pain I had was anything like or even in the normal places we all feel the urge to go to the loo and the problem is doubly bad for my bladder, I often know nothing until I feel moisture. I know it all sounds a little comical, him standing in the hall hugging a towel as he drips everywhere, me flying, well moving faster than my normal crawl, but it is all these tiny things that build up daily, weekly, monthly and yearly and aren’t going to get any better. When your partner becomes ill, I doubt if anyone expects that it will mean they can’t even have a shower in peace, without being dragged out of it and left in a cold hallway. When I first started having problems that affected Adam I was determined to not let them, but it doesn’t matter how I try, it is always going to affect him. The last few days have made me take a long hard look at myself and as someone on Twitter said, I have been too strong, it’s an odd thinking that anyone could be such a thing. It has only been in the last few months that I have been leaning on Adam just that bit more, getting him to be my failing memory, reminding me to take my night time tablets at the right time, to have a shower, small things, things that I fought having to do, yet what he now wants, is for me to accept more help, but neither of us can do this over night, it is all going to take time to settle into.
When I started writing this morning, I had just eaten my breakfast, a treat of a “pain au chocolat”, well two if I am honest. They were delicious, but I am now wishing that I hadn’t eaten them as I now have pain right across the top of my abdomen, it’s below my diaphragm so I know that it is my guts again and it is so bad that I have now had to take a booster pill, “pain au chocolat” and morphine, not the average breakfast. I know I have had all the tests that they can do and have decided that it is all down to my PRMS, but there still feels to me as though that just doesn’t quite fit. I can’t explain it but I have known for years that we can have things wrong with us that doctors can’t diagnose at the time but eventually the truth is found. I never understand why they don’t accept what the patient is saying at the time and look just that little bit further, especially with a patient like me who they know feels and understands pain better than most. I have a rather large range of things wrong with me, but to date I have always been proved right eventually, that there is something else going on. There is no one in this world who knows our body better than ourselves, doctors know the average body but not one of us is actually average, we all have differences that make us unique.
Please read my blog from 2 years ago today – 23/01/13 – The results are in.
Yesterday turned into a really strange one, one that I had totally not expected when my day began. Just after I had posted my blog the doorbell rang, I was expecting it as it was my fortnightly delivery from ASDA, something that is always the same, fast, simple and provided by helpful and thoughtful drivers, well until yesterday……….