Coming up for air.
I tried to have a nice, happy, relaxed and at the same time, cautious picture to represent what I have for you today.
The thing is ... that new drug has been something I have feared for a long time now. I have read the success reports and the percentages and figures, studies, results, more studies, side effects, more bloody side effects, tumours in children treated with it, then word of it being linked to Lymphoma in, again, young people and children. Well I recently found myself getting so damned unwell that life was, well, I won't call it 'life'. Not the life that you think of or relate to when you hear someone using that word. It was nothing like that 'life'.
My life had become a task...a long, drawn out, collection of unpleasant experienced from morning until, finally, the end of each day where I would try to find some solace in sleep.
Even that had become a bit hit and miss with the pain levels being what they become over recent months. I still found though, a good joint of cannabis smoked before bed time (yes just the one a day!) really helped to relax the mind as well as the body, sometimes resulting in a good loss of some of the pain.! Though recently it was more about helping my mind to relax and find some possible way of dealing with such pain. Night after night I have been right on the edge, ready to scream and shout, so painful I was writhing in bed, unable to stay still and yet moving was not advised as my whole abdomen felt so tender it really hurt to move. This has gone on for far too long now but it's what you have to be able to somehow live with, if you have a disease and it is known to get this bad.
I know why they call it a disease at least. There is a distinct lack of 'ease' in the situation!
So let me follow that on by telling you that about two weeks ago I was losing weight rapidly due to the increased disease. Sometimes a pound in a day. It was dropping fast and I saw the scales say EIGHT stones (and 13pounds :)) for the first time in years. That scared me. When you get so ill it's the first thing to go and people can become very thin from this. Once it made me weigh 6 and a half stones and I felt horrid from that alone...couldn't really walk and was just a bag of bones!
Anyway back to today...
I weighed 8st 13lbs, I was really struggling to eat at all. The pain had now become so bad that if I even had a mouthful of anything, the response inside my body; as eating stimulates the movement we all have of our intestines; the movement to push food along, called 'peristalsis'. As soon as I ate a thing and that happened, it would become violent and have severe spasms. Effectively eating became a scary thing and to be avoided. I would eat a small amount then I would be doubled over in pain, moaning out or even crying, it really was that bad and I have lived with pain for years so I can handle pain a bit!
So you get the idea of the pain now then? Hehe.
I was using a hot water bottle to press against my abdomen for this. I've used it for years and most folk with Crohn's do the same. It helps. again though, recently I was almost clinging to it and using it 24/7 which means I have added to the burn marks on my body as I always fill it with boiling water and use it that hot. It's the only way to help the pain. Apart from what I just described I was also feeling very weak all the time and so my life had evolved into lying on the sofa and watching downloaded TV shows, movies or watching actual TV. Either that or I would try to come on the PC for a bit but lately I was too weak even for that. Sitting upright for long would hurt to much an be too tiring. I also kept falling in and out of a dazed/sleepy state all day whilst watching the TV.
This is another symptom of Crohn's. It's like a very heavy fatigue and with the waves of pain that come over you, also comes a strong feeling of faintness, like you are about to pass out...so you usually end up closing your eyes and your head falls back...but you don't faint. Or sleep. You just keep doing the same thing all day, then you open your eyes, try to watch TV again, do it again and again and so on.
That alone can really irritate me!
So you get the scene now I will assume? Or are you now asleep and in a dazed state yourself?
Take a break.
Come back for the next bit.
Yesterday, after noticing I was having a bit less pain for a couple of days, I went to get my hot water bottle as I usually do, before bed. To fill it as when I lie in bed, the peristalsis starts and so my pain is always worsened as soon as I get in bed! anyway I couldn't find the damn bottle. Usually it's on the sofa, on the PC chair or on the bed if I had to go lie on the bed that day but it wasn't.
then it hit me. I hadn't used it AT ALL for the whole day!
It was still in the bed, from the previous night.
Up until that point I was happy to tell myself that any improvements I was feeling in my health, were probably due to my having to increase the steroids again a week before, or due to me not eating hardly on those days, so having less pain.
I think you naturally become over-cautious and maybe a bit protective. Of your own emotions and the well being of the rest of your family. Who wants to keep having hopes all the time and then to have them dashed EVERY time!?
Been there, done that etc. Too many times believe me! I was now resigned to my particular Crohn's being of a type that hits hard and doesn't respond to the available drugs we have. That is how it always hit me and it rarely changes.
Yet here I was with the hot water bottle in my hand, cold, unused for a day. that would be the first day in maybe 3 or 4 years. (actually I have to buy a new one every few months!).
Then I was convinced.
I can tell you how I have been now.
I think that is enough scene setting hehe.
I can eat!
I can walk!
I can sit up!
I have much less pain!
I don't have a hot water bottle almost strapped to me everywhere I go!
I can actually go places other than the sofa!
I am putting on weight!
I am no longer falling into the dazed zone!
I can sleep!
That felt so good.
To tell the truth I think I have been a bit shell shocked by this.
I'm not sure what to make of it.
It is almost as the religious say, I have been born again.
Hehe I know that sounds over dramatic but, just put yourself into the situation I described above, for a minute, imagine yourself in that and then imagine living in that ill world for years.
Then imagine just how you would feel if it were suddenly appearing to be lifting!
I say appearing to as I am still automatically cautious! I do see I am feeling better yet my mind tells me not to assume it will last, etc.
I won't let that stop me though!
To be able to experience life for what it is, the most simple of things are almost like new to me right now.
I feel like I am waking up from what has been a very long sleep.
I haven't actually been away but, let me tell you something:
It is good to be back.
Sorry no music posted in this one. Got something for you tomorrow though.
thanks to everyone who has been supporting me, I mean with your kind words, emails and of course the donators.
I'm still not going to start acting like I am cured but I plan to take each day as it is, if I feel good I won't be denying it that's for sure! If I have a bad day then I will handle it. The pain is so much more manageable when it does come (at night mostly) that it's actually EASY.
Thanks for listening.
I wish you all well and never neglect your own health ok. If you have anything you think is wrong, get it looked at dammit.
Hehe. I had to end with a moral? Why? I must be more affected by the American TV shows I watch than I realised...shit.