What is Fibromyalgia?

A diagram of the tender points apparent in Fibromyalgia from Arthritis Research UK

Now I know a lot of you will know exactly what Fibromyalgia is, unfortuntely, and I mean unfortunately if you are suffering from it- because then you know all too well what the condition entails. But in the purposes of education and in light of my recent 'diagnosis' I thought I'd write a post on it, as I promised I would. If anything it will help to educate me too and the more answers and information that I have the more that I can help myself. Remember knowledge is power.

Fibromyalgia can be commonly referred to as FM. So as I said in my post 'the rheumatologist appointment' some doctors and clinicians will class fibromyalgia in the same 'umbrella' as ME. But I would say that is only really possible if you already have ME, because established ME can lead to a diagnosis of fibromyalgia (more to be said on that later). However it is possible to have fibromyalgia on it's own.In fact fibromyalgia is thought to to be quite common. According to Arthritis Research UK that figure could be as high as 1 in every 25 people may be affected. Quite a shocking figure really. Surpassing figures for rheumatoid arthritis and it can be just as painful if not more so. But at the same time I fear that with such a high figure it could trivialise the condition somewhat. In terms of coming across many people that would say "Oh I have fibromyalgia and I just get on with it" type situations, as I'm sure many people have come across. However there is of course varying degrees of the severity of the condition and of some of the other symptoms that can be associated with the condition.

So let me actually answer the question 'what is fibromyalgia?' Well answer it as much as it can be answered. Fibromyalgia is a condition that effects the muscles, tendons and ligaments, causing widespread pain. In order for it to be diagnosed you need to have been experiencing the pain 'long term,' ruling out any injuries etc where the muscles should have repaired themselves. Thus rendering it a chronic condition. The Fibromyalgia Association UK describes the composite of the name fibromyalgia as '"fibro" for fibrous tissues such as tendons and ligaments "my" indicating muscles and "algia" meaning pain.' So quite self explanatory really. Fibromyalgia is also recognized as a syndrome which again the Fibromyalgia Association define as 'a collection of symptoms rather than one specific symptom or malfunction.' This can also make conditons hard to treat as there are many things to take into consideration. 

Fibromyalgia can also be recognised by pain in certain tender points that can be seen on the photo at the top of this post. These areas can be extremely tender to the touch, even gently as I think I have conveyed clearly in many a whiney post and is the reason I am writing this post on my phone, because I can't handle the weight of my tablet on my legs. Someone with fibromyalgia will usually have 11 or more tender points. The pain will vary in severity from time to time but can be described as an aching pain or a burning sensation. Often it can feel like having sunburn. I quite often feel like my muscles are pulling away from my bones, which is probably a sign of the tension in the muscles. The pain can prevent sleep and can cause nausea.

Although pain is the key symptom of the condition as I said it is a syndrome so there are other symptoms that again vary according to each patient. Namely fatigue but other symptoms as well as pain of course include:

*sensitivity to touch

*sensitivity to hot and cold

*sleep disturbances

*poor circulation

*sweating

*swellings

*tingling 

*headaches

*low mood

*forgetfullness and poor concentration

*irratible bowel syndrome

Just to name a few but there can be plenty more. So fibromyalgia can be diagnosed by the long term presence of pain, especially in the tender points and the existence of other symptoms and then of course ruling out other conditions such as rheumatoid arthritis, MS or a vitamin defiency. A blood test for muscle damage and wastage as well as to look for any inflammation is usually the first port of call. This is because research has shown that fibromyalgia is not a degenerative (where the muscles waste) or inflammatory condition. This also means to use a highly annoying phrase 'that there is no physical reason for the pain'. As I explained before the pain felt through fibromyalgia is a hypersenitivity in the way our brains process pain signals. So for example feeling in agony by doing something that should not hurt.    But of course that doesn't mean that it's all in our heads the pain is still very real and should be treated as such. In particular using drugs that will help hypersensitivity and how the brain is processesing the pain signals.

As I mentioned in the post 'the rheumatologist appointment' fibromyalgia can be caused by a sleep disturbance and thus not getting enough restorative sleep. Leaving our muscles unrefreshed and the reason for all over fatigue too in fibromyalgia sufferers. Therefore the treatment for fibromyalgia is often sought in helping the patient get better sleep. Through medicines such as amitriptiline and also lifestyle changes like establishing a sleep routine. More information on trying to aid better sleep can be found in my post 'things I learnt at clinic: physiology and sleep.'

In the booklet that I recieved from the rheumatologist it tells of an 'experiment where healthy volunteers were woken during each period of deep sleep, a number of them developed the typical signs and symptoms of fibromyalgia." Demonstrating clearly the connection between sleep disturbance and fibromyalgia but also the importance of sleep on our overall health. However as these were healthy candidates their symptoms soon eased once there sleep pattern went back to normal. But because many people with fibromyalgia also have other health issues such as ME, that can play havoc with sleep patterns, or a long standing sleep disturbance that has gone undetected and untreated our bodies won't heal as fast. Or without getting the quality of sleep needed to help the body heal and treat the other symptoms. But other causes are thought to be after a viral infection, physical or mental trauma such as a car accident or bereavement, or following a long period of stress and anxiety.

So some treatments that are available for fibromyalgia sufferers are:

*pain killers

* drugs to help with pain and sleep

* antidepressants to help with anxiety or depression which could again could cause sleep disturbances

* Medication like gabapentin, which affects the pain signals

Other than medicines though there is:

* physiotherapy

* occupational therapy

* gentle excercise (note I say gentle! But again depending on the severity of symptoms in each individual)

* healthy eating

*mindfulness

*a good sleep routine

As well as complimentary therapies such as:

*massage

*aromatherapy

* accupuncture

* reflexology

Find something that works for you and helps improve your pain levels. Remember what works for one person may not work for another but hopefully there is something for everyone. It is just that fibromyalgia varies between sufferers. And like I have said before don't be afraid to visit your doctor frequently and to find a doctor that will work with you and is easy to talk to. Make sure they have the full picture in order to give you the best treatment for you. 

So there you have it some information on fibromyalgia. I hope that it has been informative. Below are some websites for further information.

Www.fibromyalgia-association.org

Www.fibro-wales.com

Www.fibroaction.org

Www.arthritisresearchuk.org

The rheumatologist appointment

So I'm sure you've all been on tenter hooks wanting to know how I got on at my rheumatology appointment, so I will put you out of your miseries. Hehe. Sorry it's taken a while my brain has been away on holidays since the appointment, it still won't tell me where. So I'm a big foggy. I have just had the coldest cup of tea ever because I completely forgot about it and it was right beside me. So I will try my best to re-tell the tale.

First of all it was quite the mamouth effort to get there. Remember for more than a week before hand my only adventures had been to the bathroom and a couple of trips downstairs if I was lucky. So getting out of the house and then actually going somewhere was quite the effort. But in good ME patient style I made sure that I took it in small chunks. Starting with having a wash (well baby wipe wash, I didn't have that much energy to spare, all hail baby wipes) and getting dressed, with help and I made it as simple as possible by just slipping on a maxi dress. Then I rested for a bit before going downstairs doing the bum shuffle technique and then rested again downstairs for an hour before getting into the car. The car ride was only 10 minutes but it was really painful and felt like it was a lot longer. Just getting into the car was a struggle with the limited space to swing your legs and with winging my legs being a problem anyway. Maybe next time I could try my gravity technique and hope I can get myself back up into a sitting position.

But we got there in one piece and I was wheeled by Mother dearest into the hospital. Firstly I needed to have all my bits and pieces checked like my weight and height and blood pressure and the nurse doing this was really helpful in supporting me. They also checked my wee, because of course you cannot set foot into a hospital without doing a wee sample an them taking blood (more on that later). Anyhow they said that it was showing signs of infection, which was a bit of a surprise to me but when I thought about it my lower back had been hurting more and I was rather feverishly sweaty. But of course sometimes you just think that these are 'normal' and put them down to ME, which can often be a big mistake. But here's the thing after getting a bit paranoid about it (yes Mikey paranoid) and then of course you start 'noticing' certain symptoms more I decided to take another sample up to my GP's to get some antibiotics before it got nasty and I was left with yet more ugliness to deal with and then recover from. Anyway the nurse check it and miraculously there were no signs of infection!!!! Odd but actually that suited me fine. But back to the appointment.

I actually saw the rheumatologist that I saw a few years back for my wrists so that was good, not that she remembered me but I knew that she was easy to talk to and had done a good job the first time around. So after talking and examining me, oh bejabus how that hurt! I think she got the message that I was in a lot of pain. Let me just explain that Fibromyalgia can be diagnosed by tender points in certain areas across the body that can be extremely sore to the touch, even very gentley. So that was a given. At first she didn't mention the word Fibromyalgia until I did because she believed that ME/ CFS and Fibromyalgia were all in some way connected, different faces for the same beast as it were. She noted that I usually present more fatigue and sleepy symptoms but because my body is in recovery after a flare, which was a bad chest infection I had a few months ago and left a bit too long to get treated, that now my body was presenting more Fibro symptoms. Just goes to show how long it takes to get over something as simple as a chest infection and the lasting effects it has on our bodies.

On the other hand I'm not too sure about the whole lumping the two illnesses together. I guess that could be down to her referring to it as CFS- chronic fatigue syndrome rather than ME- myalgic encephalitis. Chronic fatigue syndrome is a term hated by many sufferers as it doesn't describe even half of the other symptoms that are all part and parcel of this condition, whereas myalgic encephalitis describes a range of symptoms and has that all important word 'myalgic' which refers to muscular pain. It is certainly possible to have one without the other and there are two different societies for them. But many people with ME will get Fibromyalgia too. Like I say there are so many theories and opinions out there on these conditions that it is quite confusing and each person you see will have different terms and opinions. Oh dear. Anyhow as I meet all the criteria for Fibromyalgia based on the tender points and some other symptoms such as fatigue and foggy brain I think it's safe to say that I have ME and Fibromyalgia. She did give me a booklet on Fibromyalgia from Arthritis Research UK so I am slowly working my way through that and when I do I shall be back here to explain fibro in a bit more depth for you all.

So as well a having a flare up of symptoms after this chest infection she also thinks that it could be down to a lack of sleep. Now I know so many people who will laugh at this, myself included, given that I can have 20 hour sleeps and have never in my ME time been able to cope with less than 12 hours. However I never, ever feel refreshed afterwards, it's like a perpetual hangover- oh what is one of those again? This could be a sign of not getting enough restorative sleep or stage 4 non dream sleep and therefore my body isn't recovering as it should. So her first step and that of my GP is to try an address this sleep issue and try and get me some quality zzzz's. So it just goes to show that it doesn't matter how long you sleep for as long as you're not getting restorative sleep you are risk of Fibromyalgia symptoms and other nasties. So the next step is to try to tackle this and find something that gives me better sleep without making me anymore drowsy. She recommended a drug called amitripiline that used to be used to treat depression but now that they have more effective tablets for depression it is often used as a pain medication and for sleep. So fingers crossed it will do some good and if not on to the next.

As well as that she said that every day that I should try and move around a bit more and that means move not exercise. Mainly move more around the house when possible and a little more every day to get the muscles used to moving and to tell those dodgy pain signals that walking around really shouldn't be hurting. But obviously they will hurt at first as they get used to extra movement. So it's just about finding that balance. I have been trying to do a bit more each day even if it's just walking to the bathroom but it's also been nice to have been able to get downstairs. Change of scenery and all that! Plus more sky channels to peruse. Having the pain killers certainly does help though, but I'm pretty sure that I won't be  running marathons anytime soon, not that I have ever wished to run a marathon.

She also has repeated my blood tests for muscle wastage and damage and to check my vitamin levels as that can lead to extra pain too. But as well as traditional medicine she said that more holistic treatments could be worth a try. Such as accupuncture, reflexology, massage, reiki etc etc, so there's plenty to have a go at. But for now I it seems like getting my sleep in order is the key issue. My GP rang again on Friday to see how I had got on and he is going to some research into the amitriptiline and other possible drugs and we are going to be gradually reducing the neurontin as they haven't seemed to have worked as well as hoped. We're also going to slowly reduce the oramorph, so good news family my crazy ormorph conversations will be around a little while longer.

So that's where I'm up to. Again apologies it's taken a few days but then it really wouldn't have made any sense. I will try and get a post on Fibromyalgia out as soon as I can.

Thanks for reading

The power of a good doctor

This week has been one of the worst, no the worst week since all this ME madness started. Let me just clarify, when I say worst I mean as in for symptoms, no other dramas. Well maybe some drama, ahem. I have been bed bound from Saturday until Friday and when I say bed bound I mean can't even stand up bed bound. This of course meant that I couldn't even stand up to get on the commode so I have been sliding, scooching and launching myself (ye, that last one wasn't too good) on and off it. Needing help but then screaming at my Mum everytime she touched me as it hurt too much. I'm glad she understood that all my 'French' was not aimed at her. At one time I had to kind of reverse onto the commode that had been pushed right up against my bed and sat on it with my legs out on the bed. That wasn't good! I thought I would pass out and actually it's really difficult to wee like that (sorry about that.) I have also found that one of the worst things is when I am sitting on the edge of the bed to try and bring my legs back up onto the bed. I have had this problem for a while now, as I generally need to sit anywhere with my legs out. Anyway in desperation the other (this word is really bothering my battered brain I keep wanting to put over or offer, naughty English language) night I literally just let myself 'drop' onto my side. Problem solved. Thank goodness for being top heavy haha.

The amount of pain that I have been in (and am in) has been actually quite terrifying. I really did not know what to do. If I moved my toes pain shot through my body. Because of the warm weather I have been sleeping with just a sheet and then a fleece blanket on top if needed. I can't do the whole sleeping without some kind of cover for some reason. Maybe it's a comfort thing? But just the tiny tiny extra weight of the fleece blanket felt like an elephant was sat on me. However in taking the blanket or the sheet off that too made me howl (hmm maybe I am a werewolf too Irene.) How can these very tiny simple movements cause so much pain? On top of the constant ache that you already have. It's insane, maddening, literally madenning.

As I mentioned in another post, on Saturday night  I rang the out of hours doctors service because I was not coping and was at my whits end. But all the 'nurse' said was that there was not much that they could do because they did not have much stock. This out of hours service is run out of a hospital! She just said to take some ibruprofen as well, which I really am not supposed to take, infact a big red banner comes up on my notes to tell them that I cannot take it. But this was all she could say. To say that I was angry and upset is an understatement. I just wanted help. I was reluctant to ring for an ambulance (there is no way that I could have got to the nearest A&E without help) although I was thinking that maybe I would need to. I really did not want to go to hospital though and go through the stress of trying to get an ambulance on a Saturday night (that's if they deemed that I needed to go in to hospital.) Then there would be the crazy, over stimulating environment of A&E where we would probably have to wait sometime to see a doctor and then if I did get admitted I dreaded yet more calamity and the lack of privacy and peace afforded by those dreaded curtains. Seriously once you've heard an old lady shouting I'm doing a poo, you are scarred for life. What's more I would not even be able to help myself to get a drink, even if they put that tray on wheels right by my bed. I had that problem when I was sent in when the ME finally hit me. And of course they are forever moving that tray away. I would be constantly on the buzzer, because I could do very little for myself and that would just annoy everyone. You know yourself that you curse the person who's buzzer goes off when you are just drifting off to sleep or the annoying alarms on drip machines. No hospitals are certainly not the most relaxing of places, especially when you're ill, as silly as that sounds but they don't afford you the rest that you need. I have had many a doctor say this to me even. Anyway I am not hospital bashing, for where would we be without them just pointing out some of my annoyances from far too many stays. I look forward to when there are more single rooms, not that I particularly want to go into hospital but it will certainly solve a lot of issues such as privacy and infection control. But enough digressing. I feared that even if I did go to hospital that they too would say that it was 'just' the ME and that there wasn't very much that they could do either. So I decided to just take the ibruprofen for the time being and see how I got on, or just try and put up with it.

Somehow I got through the weekend and first thing on Monday morning my Mum (bless her heart) was straight on the phone to my doctors to ask whether they could give me a prescription or a phone consultation. The receptionist said that she would put me down for a phone consultation with my regular GP but what happened later was a miracle, well a little one my GP actually came to the house! It was like seeing a mirage when you've been walking for days in the desert, not that I have ever done that, apart from that time me and my sister got lost in Cyprus trying to find this aquarium. Somehow I managed to tell him what was going on and he was very good as to not torture me by doing the whole "does it hurt here? How about here?" thing. He could tell from me having moved my toes and moving the blanket that I was in pure agony and panting like a woman in the last stages of labour. As I have an appointment with the rheumatologist on Wednesday ( that's tomorrow, hooray!) he said that his main concern was to get the pain under control (Halleujia!) and to stop those ruddy ibruprofen before I have anymore problems. So he prescribed me some oramorph and said that he would phone on Wednesday to see how I was getting on. I could go into a big diatribe about the usage of oramorph here but I'll save you all. Let's just say that I was quite shocked that he precribed it for home use (not questionning his ethics at all) but I was glad he did, I sure needed it.

However the oramorph seems seems to be having some effect. By the Wednesday I could tell my GP that I had managed to get some much needed sleep and that I had actually managed to stand up to get on the commode. However I wouldn't be able to make my appointment with him at the surgery the following day and again he said that he would come out to me again. Where I was able to tell him that I had managed to walk to the bathroom and back but that I was still needing to take the oramorph and paracetemol regularly. He was happy with the progress and was hopeful that I'd be able to get to the hospital without too much distress on Wednesday, luckily it's fairly local. Well more local than the main hospital.

He touched a few 'trigger points' ( I will explain more about that soon) on my legs and the radiation of the pain was horrid. However he explained that due to this he was fairly certain that I also have Fibromyalgia (will explain that one soon too) but he'd see what the rheumatologist had to say. He explained to me that what seems to be happening is a problem with my nervous system and pain signals that have gone haywire. In a way that something that shouldn't hurt like a simple tap, wiggling my toes and the weight of the blanket is actually causing me an insane amount of pain. Where of course they shouldn't hurt that much, well actually not at all. A blanket is for comfort after all. Since he explained this though it certainly has helped me understand what is going on and how I can be a bit more careful. This is what the neurontin tablets have been trying to combat but they don't seem to be having much of an affect on me. Oh why am I so awkward? So he has advised me to start cutting down on them. It's important to come off these gradually because otherwise it could be nasty.

The doctor also said that if I am diagnosed with fibromyalgia as well then he has "ways and means" as said in a German accent, he's a funny guy, to hopefully get it under control. So I feel pretty reassured. I am certainly grateful to have a GP that is being proactive with my care and actually researches different treatment options. Maybe he likes a challenge! But having a good GP is paramount. They are your first point of call and have access to the bigger picture in terms of your medical history. Threfore it's important that you have a good rapport with your GP. That you feel you can talk to them. For that is the only way that you can get the best care for you. Of course they have a duty of care but if you can't talk to them openly and honestly then some issues don't get addressed.

When you have a chronic illness admitedly getting to the doctors can be quite a trek. You have to be somewhere near your best to be able to get there and yes I know that again that sounds crazy. So in a way your GP may not get a true sense of what you are experiencing. I will admit that I will generally talk more about my pain and fatigue levels and sometimes forget to focus on the lifestyle aspect, such as how much activity you are able to do. Not on purpose of course but sometimes you forget the necessity of mentioning these things or you somehow assume that they know. Well they're not mind readers. I think that with having the home visits last week my doctor was able to see exactly as I was living. Like I'm sure I never told him about using a commode (sorry I keep going on about that, don't I?).

A good doctor though can really make a big difference and I am really grateful to mine at the moment. He is going the extra mile. I will admit that sometimes I will see other doctors within the medical practise but that's because in my many visits I've learnt who is best for what. Okay, admitedly it's all ME related at the moment but if I were to have more depression issues I have another preferred GP for that, who's a bit more of a listener. The day I go in there with something normal is always a shock. I have to say "can I stop you there I'm actually here as I have a sore throat."

But the lesson is that you need a good allae in your doctor. One that will listen and try everything to help. One that isn't afraid to research and learn new things but also to ask for help. Such as hospital referrals to get you the best possible outcome. With a chronic condition it really is crucial because you will see them more times than you see some members of your family. So if you don't have a GP or doctor that you can gel with don't be afraid to find one that will. Yes it can be a hassle but they might even be in the same surgury. But you owe it to yourself and it's nothing short of what you need and deserve.

So I will keep you posted about how my apppointment goes. I hope she has lots of time as I have been trying to keep a list with everything on there and lots of lots of questions.

Night

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.

Inventing new swear words

So as the title suggests over the last few days and definitely the last 12 hours I have been inventing a fair few new swear words to express the extent of the pain that is hijacking my body. I've screamed. I've cried. I've sworn. I've taken all my tablets (gabapentin) and extra pain killers (cocodomol and even the dreaded ibruprofen). I have a hot water bottle on my thighs and a tens machine pulsing away on my back and yet I still am in pain. I don't want to be touched but need help and just wiggling my toes sets me off into a diatribe of ugly curse words. I phoned the out of hours doctors but all they could say was that there wasn't much they could do. Cue more crying and curse words.

But today wasn't supposed to be like this at all. Well any day is not supposed to be like this according to society and I would very much love that.  But you see today I was supposed to be going to Turkey on holiday with friends. When it was booked my ME was much more fatigue dominated. Not that it isn't still but now there is the all consuming pain that has left me wheelchair bound too. Yes overwhelming fatigue is debilitating enough but I could still care for myself a lot more. So after going to Greece and needing a wheelchair to get onto the plane being able to go to Turkey has been a doubt in my mind.

I looked at the resort and to be fair it did look very wheelchair friendly with lots of ramps and flat areas but it was far from the town, which could only be accessed by bus. Something tells me Turkish buses wouldn't be very wheelchair friendly. Nevermind taking the bus twice a day for 2 weeks just to be able to go eat dinner. Plus if I feel asleep during my meal it would have been a nightmare to get me back.

But more than the travelling and the wheelchair logistics it was about needing to be cared for a lot more. As in personal care. Would my friends really be comfortable helping me bathe, washing my hair, get dressed or even helping me on and off the toilet when needed? Not really. Nor would I be comfortable with them doing it. Sometimes it frustrates me having my Mum do it. What's more this was their holiday. They deserved to we having fun and going out exploring not looking after me. I couldn't put that pressure on them. The guilt that comes with putting others out just by me having this condition is already enough without ruining a much needed holiday. My friend even admitted that she would be a rubbish carer. So that was that one out of the window.

Yes I did manage to get to Greece not so long ago but like I have said I know the place, I know the people. I have fallen asleep in the restaurant (right next door) and they don't get offended. They help me out and then ask how I am the next day. They don't try and ply me with alcohol because they know it will make me more ill. Even when I'm over here I get messages of support and well wishes. What's more I go with my parents. So they are there to care for me. Yes I want them to not have to and to be able to enjoy their holiday but at least the pressure is off a bit because they don't have to work or cook or clean.

Some people will think it's strange goinh on holiday with your parents in your late twenties but that's the way it is. It can do us good as a family. Especially as we have become so reliant on one another. I'm just grateful that I can go away with them when my health permits. That we have a great relationship. At the end of the day if I was well I probably wouldn't be going on holiday with them or maybe not at all as I'd be out there working,  working working.

Anyhow enough blogging distraction techniques. I am going to try and get some sleep. Think it will be the only way to really shut off this pain.

Grump

Just a short post about the last few days because once again M.E is surprising me in new ways, how generous of it? Wow I have been grumpy these past few days. My sleeping pattern is all over the shop, mostly during the day though to be fair and it is driving me a little bit bonkers. Again I have been kept awake throughout the night in horrible pain in my legs and back, which makes it impossible to relax enough to fall asleep. So I have been mostly trying to get some sleep when I can or I'm just so exhausted that I have no choice in the matter.

Since starting these tablets neurontin I have also been feeling quite nauseous but it's hard to tell if that's just the tablets or that I am overly tired as well and not eating very well. M.E really does mess up your whole body. It feels like you try to deal with one thing but then something else rears it's ugly head. It is a non stop vicious cycle. Lately I have also been hypersensitive and not in the crying at the drop of a hat hypersensitive way, although I have been close to tear on a few occasions where I've not had enough sleep and I'm just lying in an exhausted heap. It feels as though all my senses are just on overload. Obviously there is the pain but one minute I am sweating like a pig and the next I am freezing cold. I have become so sensitive to the cold that I have had to wear long pyjama bottoms and socks in bed. The other night I had a pair of 3/4 length pyjama bottoms on and my legs were really cold. It wasn't even a cold night. But because they were so cold it made my legs stiffen up and hurt all the more and just that sensation of being cold was keeping me awake. It's weird. I've never had that before, not even in winter. My hearing too has been on over drive, everything just sounds 10 times louder than it usually would. It hasn't helped that my next door neighbours daughter is moving house and they have been packing and moving and slamming doors for 2 days from 7am. Then tonight they decided to have a party next door. Ahhh have it in your new house!!! See I am a grumpy bum. Of course they should be celebrating and it wasn't all that late. Then at the same time there was fireworks going on over the road. Honestly I was ready to just break down. What an absolute party pooper. If I could walk better and wasn't on my last legs with exhaustion I would have had the mind to go round there and just cry in their faces. Oh dear me. I very rarely get like that, only if  I have one of those really bad migraines where the whole world must stop and be quiet but for the last few days there has been times where I thought people were out to get me. Even the fridge! Honestly it has been so loud, well what I am perceiving to be really loud at the moment that last night I thought that someone was playing really loud music. When I went to investigate and found out it was the fridge I was a bit shocked and slightly embarassed.

At times my heart has felt like it has been racing too and just thumping in my chest, mostly when I am disgustingly tired though. But how are you supposed to sleep when whenever you lie down you can hear your pulse in your ears and your chest is jumping. It's impossible. Then you get all the more frustrated and tired and your pulse quickens. It really is a vicious circle and can be really scary. Especially when you have'nt experienced that symptom before.

It just goes to show I guess how much we need to sleep healthily. It really does affect us in strange ways and turns us into people we do not recognise. Then add that into the mix with M.E and who knows what you're going to get. Everyday  is different and a learning curve and when you start to experience something new it's easy to feel like you are right back at square one or just curse "what now?" And when you are overly tired it just becomes even worse.  However onwards and upwards with the fight. At least I can laugh now at my Diva strops at the fridge. "How dare it?!"