Topsy Turvey

This post was originally posted in July but it has decided to shift as I edited it. Odd! So any reference to painkillers is obviously out of date.

It is never a good sign when at 3am you are Googling what other pain killers you can take as well as the ones you're already dosed up on. The last 2 nights have just been awful. The pain in my legs has been keeping me awake all night and shown no signs of responding to any painkillers, neurontin and cocodomol, heat or massage. It is truly driving me around the bend. After my trip to the doctors on Thursday he has decided to change the celebrex to neurontin or gabapentin as it is also known, because by now I should have noticed a difference with being on the celebrex for a month, or is it more? To be honest I'm not overly sure what month it is, time has so little consequence at the moment; apart from "when can I have my next dose of painkillers?" I know I need to give the gabapentin time to build up in my system as I am still on 3 100mg tablets a day and then will build them up by 100mg as directed by my doctor but f**k me I am in pain! The muscles in my legs feel like they are on fire and are pulling away from my bones. It feels like I am being tortured on a Medieval stretching devise. Then there are the sharp shooting pains that literally make my legs jerk and just that small movement triggers yet more aching. It makes me naseous. It's small wonder that I cannot sleep. There is no way of switching off and trying to block out the pain. All I can do is to keep up with the pain killers and try to massage away any niggles, whilst accepting that however much I need to sleep, it just isn't going to happen right now. Generally around 7am or 8am as the world is waking up I am beginning to feel the affects of 'pulling an all nigther' so to speak and am finally at that point where exhaustion just takes over me until I am fast asleep and don't wake up again until about 4pm. Even then I generally feel as though I could easily fall back to sleep if I wasn't hyper aware of needing to take my tablets and my stomach grumbling at me with starvation.

This back to front lifestyle is no good at all. As I have just mentioned by the time I have woken up I am overly hungry. Usually my stomach begging to be fed will wake me a few times but never enough for me to come to properly and actually take action. I know I intend to do so but can't open my eyes and just those few minutes thinking about it before I am asleep again is enough for me to have many a dream about reaching for my phone to ask for some breakfast or even more annoyingly, dreaming of actually eating breakfast. Then waking up thinking "oh I've had breakfast today," when my stomach is telling me otherwise. Don't you hate dreams like that? Ever dream that you have woken up and gone to work and then when your alarm clock rings thought " what the hell? But I've done this already."  Cruel isn't it? I used to have this a lot when I was at university and college; I think it's because they occupy so much of your thoughts whilst you're awake that they just seep into your subconscious. Especially when there is a deadline to meet or maybe you're just excited about something. Anyway as I have said by the time that I have come round enough to move and actually put these thoughts into action it is generally very late afternoon (when I have been awake the whole night) and by then of course it is no wonder that I'm starving. I have effectively missed 2 meals and keeping hydrated, not to mention any snacks and this in turn creates more problems. How can you expect to have better energy levels if you do not eat and drink sensibley and by sensibley I don't just mean healthy foodstuffs I mean  eating regularly to support your gastric system and counteracting any natural energy dips and drinking enough (water, not alcohol ;-) ) will keep you hydrated, as dehydration is another arch nemesis of fatigue.

It is recommended that other than during sleep, as in normal sleep at night time, you should go no more than 4 hours without eating something to maintain a flow of energy throughout the day and of course to negate any feelings of hunger, which sends the body into a sort of panic mode. However if you are asleep most of the day all this goes out of the window. It is a battle of needing to sleep, well not having much choice in the matter when you finally can drift off and making sure that you eat, beacause let's face it you need the energy. So it is just problem upon problem. What usually ends up happening is when I do wake up I start making up for lost time and filling my chops, which isn't exactly healthy either as your metabolism is slower of an evening but what are you supposed to do? You're hungry; you're going to fill yourself until you are no longer hungry. It is also even more tempting to fill up on short burst energy foodstuffs, like cake and chocolate because you want that rush of energy but that's not exactly healthy either. I say this as I'm eating a crunchie oops! But treats are also good. In the past I have tried to ensure that I manage to eat 3 meals a day, even if I fall straight back to sleep again soon afterwards, hopefully not during. However when pain is keeping you awake all night and you're too exhausted to open your eyes during the day, there's very little control. Again it is like choosing which one that you need most but then again sometimes that choice is made for you zzzzzz.

One could argue that we do not need to eat that often as it is not as if we need it for the small amount of activity that we do. But everyone needs to eat to suppport their bodies and keep all our systems working and chronic illness or not that doesn't change. If anything we need to support our bodies even more. We need all the help we can get. Plus as our bodies are constantly tuned in to hyper mode, overly sensitive and screaming with pain we are constantly exerting ourselves. We might not be moving around as much but our brains and nervous system are busy, busy, busy. So yes we do still need to eat and drink regularly and lets face it we can ill afford for our bodies to break down anymore.

Furthermore if we are asleep all day then we miss out on even more. Big events like getting out if possible or company and furthermore daylight. No wonder we have no concept of time. Just that glimpse of daylight lets you know the time and helps the body to regulate itself (as in a natural bodyclock). We are all biologically programmed to be awake during the day and sleep during the night. Unless you are a Vampire or indeed an owl. This is why a lot of people with M.E are referred to as night owls, because our body clocks are all awry. Furthermore because we are waking up late it inevitabley means that we will fall asleep later. Unless you are having one of those super exhausted days when you can't help but sleep for 20 hours. Again creating more problems and messing up your sleep pattern even more. It's such a difficult predicament and again one you have little control over at times as sleep consumes your day after a restless night of pure agony.

Then of course there is our moods. Being in constant pain doesn't exactly make us the most cheerful of people at times. It is exhausting and comsuming. Then add this to the lack of company or small activity and again sometimes missing out and it's enough to make you miserable. As I have said my mum works from home and often I will get woken up by the children; one has developed a habbit of going to the bathroom a lot to try and wake me up so I can go play and often I wish I could. I have even been in bed trying to sleep through my family having Christmas dinner and what was worse was that my friend from America was staying with us. What a Nellie let down! Luckily she was very understanding though but I wasn't best pleased about missing out. From a purely psychological point of view there is definitely something to be said about seeing daylight, think seasonal affective disorder, not only does it regulate our bodies but subconsciously it affects our moods too. People are just generally happier in the sun. But if you're in bed all day not only are you not getting out but you are blocking out the sun with your curtains. I say this like we live in a sunny country haha, so maybe I should refer to light not sun. I think this is part of the reason why I see some improvement whilst on holiday, all be it small physically the last time. But I manage to get into a better routine. Sleeping through the night and managing to eat 3 meals a day. Okay I have a siesta but there's nothing wrong with that.

So what are you supposed to do? Well on those days I guess there isn't much that you can do and somehow you just have to accept that. Just try to keep the pain managed as much as possible and eat when you can. I know better than to try and beat sleep like that. Then when you are having better days or a few hours, eat, keep yourself hydrated, if you can get outside for 5 minutes do so- any longer is a bonus and open those curtains when you're not asleep. In the meantime my Greek is coming along nicely and my bedside table resembles a small library. It would be nicer to do them in the day though but you just have to take everything as it comes.