It’s such a simple thing

I seem to be being hit by waves of tiredness this morning, which after another two nights of disturbed sleep, isn’t really surprising. I had been so hopeful that sleep was going to be something that I was going to get for a while, four nights ago I slept without waking at all and three nights ago well I was up only once, but the pains have all returned full force in my stomach and sleep is once again something I am not allowed to do. I know that at its worst I am awake for just 10 to 15 minutes each time but any spell of being awake, even just long enough to check the time before returning to sleep, seems to just knock me for six the next day. Last night I was up three times and awake once more after that, but when I wake in pain, regardless where it is, I find that I have to get up, just lying there means lying there in pain, getting up usually breaks it and allows me to return to peaceful sleep until the next time. We all need sleep and we all need good sleep, once ill, those needs are multiplied over and over again as your health slowly fails.

It is the side effects of lack of sleep that most people don’t seem to understand, as we have all gone through spells where we aren’t really sleeping and you get over it. Anyone who has had a baby knows exactly what it is like to not get sleep, but you still go to work and carry on as normal, maybe you feel a little down and as though your body is in need of rest, but you just get on with it. That was my opinion as well I had been there and done that, lack of sleep was difficult but not the end of the world, I believed that right up until my health had reached a point where I realised just how important sleep was going to be and has proved to be as time went on. There are so many different things that require that sleep to restore themselves and so many different factors that work along with our sleep that really can change our entire lives. Up until this year, sleep was something that I did with ridiculous ease and without the slightest chance of waking, within seconds of my head touching the pillows, I was asleep and apart from a bomb hitting the house the chance of waking me was tiny. I can map the two thing perfectly, my bowel issues and my lack of sleep go together with total ease, as they have matched each other step by step. I don’t know how I sleep through the spasms and pain the PRMS cause me, I just do, I suppose it is a case that my body has learned to not react at night over the long slow build up that had been the course of my health for the last 30 plus years. December was the last time that I had more than two night sleep in a row without being woken by anything, right to the point that I slept for 12 hours with ease, not even waking to go to the loo or even moving in my bed, waking exactly as I went to sleep. Then all the mess that is documented in the previous posts started and sleep became this monster that I longed for but wasn’t allowed to have. What the exact difference there is between pain in my stomach and pain anywhere else is I don’t know, but there clearly is one as in the last three months every single time I wake it is because of spasms in my stomach. At times, I know without a doubt that it is either just the movement of wind or solids inside of me, stretching and crashing it way around my intestine. Other times it is clearly my diaphragm that has been pushed to its limit from the pressure below, but both are pains still there when I wake and both require me to stand and move around until they release, whichever it is that wakes me, I always know it is just the start of something much bigger.

When you don’t get the sleep you need, nothing seems to go smoothly and everything that you could normally handle, seems like suddenly huge and an issue that is going to take over your life, rather than just another of those hiccups that life likes to throw our way. It rips apart that all so important routine that not only keeps me sane, but is required for every aspect of my health and something I have also written about a lot. Once that routine starts to slip, everything slips, I had my daily online work down to a tee, I could manage to complete everything by 1pm, giving me a couple of hours to myself to do the things I wanted before having to take my afternoon nap. Between my tiredness, the lack of concentration that that causes and the general stop-start effect that it has means that I am once again back to taking all of those two hours, just to complete everything. The longer I am without my full sleep, the more frustrated I am getting by not having the time to rest and just do things for myself, like dying my hair, which now has two inches of horrid grey showing where purple should be. When you are tired like this for what feels like your entire life, life feels like one long chore without the high points that should be there to make up for them. Although the normal pain from my PRMS may not be what is waking me, it is eating away at me when I am awake, every twinge now seems to be felt and no position is comfortable for any more than a few seconds, I can’t escape it any longer as sleep was my escape.

I spoke the other week of being on a spiral with all the problems that my bowels were causing, well this is the next layer of that spiral, this is the layer that pulling my general life quality down as well. Constantly feeling as though I need sleep, is something that makes me just like everyone else, that little bit more short tempered, I don’t like snapping at Adam and although he understands, it doesn’t make it any easier, but I am not just short tempered with him, I am now short-tempered and impatient with myself. So why don’t I just go to bed right now, simple, I have to at least stick as closely as I can to my routine and to get everything done, if I went to bed now, well I would just be building up the problems for tomorrow as I wouldn’t sleep well tonight. Life right now feels far too far over into the lose, lose side and I don’t like it. I am too tired to want to do anything but desperate to get it all done, not wanting to eat, but having to or I know my bowels will stop completely again, I want to sleep but I know it would just make things worse. Right now if the doctor said that he was going to give me a stoma, well I think I would take it, as long as they could reverse it in a week, during which time I would ask them to knock me out and keep the world a million miles away from me so that I can just sleep.

When I was a Mum with tiny children, I could weeks on just a couple of hours sleep a night. When I was a DJ, well I did just the same for the time I was on the Radio and gigging live, the radio station being a two-hour journey from home and my evening venus. Even when I was in my last job, there were many months when I got no more than 4-5 hours sleep, due to the levels of work I was having to do at home, just to keep up. Now I can’t manage with a disturbed 13 hours per day, even when I do get a couple of good nights every few days. Sleep is one of those things that people just don’t realise how important it actually can be, it’s such a simple thing but it is also such an important thing as well.

Read my blog from 2 years ago today – 25/03/13 – The visit > http://bit.ly/WQm3bE

Everything is in shortened versions today as Teressa and her fiance will be here today so that Adam and I can meet John before the wedding. Adam miss read her Facebook on Saturday and gained the impression that they wouldn’t be driving up until Sunday rather than on the planned Saturday, so after I went to bed he thought he would take all the covers off the settees and wash them. The phone range at around 10:30 yesterday………

2 thoughts on “It’s such a simple thing

  1. SOMETIMES THE SIMPLE IS THE HARDEST.I’M NOT A DOCTOR,BUT MY GUESS IS THAT, YOUR STOMACH AND INTESTINES DO A LOT OF WORK WHILE WE SLEEP. THEY NEED TO PROCESS AND DELIVER ALL THE CONTENTS OF YOUR STOMACH, TO THEIR PROPER PLACE.SENDING NUTRIENTS AND DUMPING THE WASTE THROUGH THE KIDNEYS AND LIVER.FOR YOU THAT IS EXCRUCIATING PAIN AND WAKES YOU UP. WE ALL NEED SLEEP TO HEAL,YOU NEED IT MORE THAN OTHERS.NO MATTER WHAT TIME I GO TO SLEEP;I’M AWAKE IN 4-5 HOURS.I CAN’T HOWEVER GO BACK TO SLEEP.EVERY MORNING AT 3:00 AM,I AM AWAKE AND TRYING TO FUNCTION IN MY CRAZY LIFE. I HOPE THAT YOU HAVE A BETTER NIGHT TONIGHT……GOOD WISHES FROM NEVI

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  2. I can so relate to your post. It’s 0246 here, up for the 3rd time in pain. Spasms and the feeling of a crushing fire are bad now, and I know they will be so much worse trying to make it through tomorrow. Hubby lays in bed snoring which could be stopped as I listen to his apneic episodes that only add to my stress. (he knows rhe CPAP is sitting by the bed but he refuses to wear it, not for himself or me). Night after night it’s the same repetition and I count the days until I am away from here. I spend more than half the year in a cooler climate since my area has temps well over 100° in Spring thru Fall. I long for that time where the nights are quiet and the cool weather and environment is healing. I know how blessed I am that my mother gives me this chance to escape. I just wish hubby and daughter could understand that it is imperative I go, not to escape them but simply to stay a functioning person. I can see and feel the decline I my abilities the longer I am here, but how do I justify “running away” from what is literally killing me? I hope your solution comes and things begin to cycle back to normalcy. I pray that for each and all of us. PRMS is cruel, and I wouldn’t wish it on my enemies, much less others, but at least I know I am stronger than the label this disease has on me.

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