brain fog

It's Wednesday today so that means only 2 more days of incaseration and I can at least watch and laugh at the latest episode of The Apprentice. Where do they get these candidates from? A couple of weeks ago one man picked up a bunch of carrots and asked what they were, unfortunately he was Welsh, so he didn't do this beautiful nation that I call home any favours but it did make me burst out laughing and as I have said many a time laughter is a great medicine. Today is also my nephews sports day so I'm fairly miffed at not being able to go. Damned legs.

It has been brought to my attention that in my post 'travelling with M.E' I misspelt the word queue or rather I used the other definition of the word and said cue. I'd like to say that that was a simple "I am a stagemanager and I have so many cues, darling" that they're consuming my brain type mistake. Or that spell checker should have picked up on this, which of course it should have, especially with this strange language of ours where we use the same word for different purposes and just change the spelling slightly. Surely someone could have invented a new word for whichever one was invented second. I think that it was probably queue , as of course we have formed our language from centuries of other languages and then decided to spell them a completely different way to how they are pronounced. This was always difficult as I learnt English as a second language, as many people do across the world today. Let's take for example the word "once"  surely it should be pronounced "on-see" and then we have the dreaded word "queue" in this form why not say "cue-youey"? Then their is the plethora of silent letters, such as know or pneumonia. What's with that? I am trying to learn Greek at the moment and even though their alphabet looks err for want of a better word well "foreign" ( see silent g again) to be fair ones you know the letters you can pronounce a word. Back to the point though of why I think queue was the latter invented. It's because queuing is a very British custom and as I said we liked to pick up words from other places. We can't stand queuing (I nearly fell victim to the cue situation there) in ours cars though can we? Mainly because you can guarantee it's on the hottest day of the year or you need to get petrol and that your bladder always decides that it is going to burst. Did you know that it is legal for a man to urinate up against the front right tyre of his vehicle on the roadside? Well now you do and now you know some of the random bits of information that float about my head. Let us all spare a though for the poor person in the passenger seat.

Now I would say I'm fairly intelligent but sometimes having M.E your brain goes void. Sometimes I can't even string a sentence together or I'll know what I want to say but can't think of the words. Sometime I even forget why I wanted to speak in the first place, which can be annoying when what you wanted to ask for was help getting upstairs and 15 minutes later you're fasto on the couch. Recently the funniest of my brain fog incidents have occurred watching 'catchphrase'; I do love that show and like to think I am a catchphrase genius by shouting out the answers. Well my two classics have been "the ears have walls" and "straight from the fishes mouth". Luckily I can laugh at myself and did find these incidents rather funny. This is why whenever I make a quick whited joke I'm secretly quite proud of myself and thank my brain for being on form for that moment. But for every crazy answer I do give a lot of good ones and I recently most definitely redeemed myself watching 'pointless' this week when I knew that the Democratic Republic of Congo was formally known as Zaire.

It can be hard to deal with, especially as I used to be always using my brain at university and in stage managing. I was even the go to proof reader for assessments because I am a massive nerd and I actually quite enjoyed doing it. Don't worry even I thought that this was a bit weird but I had it explained to me that it's because I have an eye for detail and patterns linguistically speaking and I'd like to think it's because I'm a good friend too. So finding out that I used the wrong 'queue' is a bit disappointing and then not to notice it as I edited is poor but in my defense I had been speaking 3 languages that week and quite frankly I'm only human and that is the very least of my problems.

Now that my body is really suffering I want to concentrate on using my brain more. Learning Greek is definitely helping, I just need to find some more good websites that are also free and then there's the blogging too, which I'm enjoying and I'm reading like there is going to be a book amnesty. Hopefully this should all help with the "what have I come in here for?" moments and be less embarrassing come the next series of catchphrase. If not then I'll just continue to laugh and then blog about it. And just to set the record straight I do know the difference between queue and cue.

Cabin Fever

Today I have woken up feeling utterly miserable. I didn't manage to wake up until 2pm either as I couldn't keep my eyes open and I only really woke up then before I wet the bed. As I have said before I do think that the psychological affects of this condition can be much worse than the physical, although that is why I'm feeling low in the first place. I just don't cope well with being cooped up for too long. It's not even that sunny a day today to try and sit out in the garden and my brain is a bit too foggy to be able to concentrate on a film or something. So I thought I'd blog instead and try and get some of my feelings out.

I have taken to my bed because I feel so rubbish but at the same time I feel a bit guilty because like I said I didn't wake up till 2pm and because being in bed doesn't exactly do your mood any favours. It's difficult to know what to do at times. Especially when physically  you can't move about as much either. Going downstairs does mean having some company but at the moment myself and stairs are not the best of friends. I have even tried going back to sleep but even that is eluding me at the moment and it kicks off that viscious cycle again of I have already slept long enough and it is not going to improve my mood. Somedays when I need it I can happily let myself sleep 18 hours but today because I feel so bored and miserable I feel as though I should be trying to help myself feel better not going back to sleep.

It's a difficult one but understandable. Especially after being on holiday where although I never ventured further than the restaurant next door and that one miraculous day that I went to the supermarket I was at least out by the pool and gabbing to anyone that would listen. Not strictly true because I do have some good friends there and the restaurant just so happens to be my favourite restaurant ever.

To make things just that little bit harder my wheelchair isn't being delivered until Friday so I feel all the more trapped. I thought that I would be feeling completely depressed about needing a wheelchair because it would be a constant reminder of just how much my body has changed but after the airport incident I am trying to see it as a positive thing. At least I will be able to get out and live somewhat normally without creating even more fatigue and pain. Who knows how I will feel once it arrives and I am fed up of being bashed on the head or have broken toes? But with every painful step around the house and days like today when I don't know what to do with myself the more I'm seeing it as a sign of freedom. Of course I'll still need help to get out in the first place and unfortunately we live in a hilly area so I best not attempt to go out on my own or I may be in plaster and have no teeth aswell and then I probably will feel sorry for myself.

M.E and mental health

In my last post I talked about some past physical aspects that may have contributed to my M.E diagnosis. Notice how I say 'may' as I have already explained there is no conclusive evidence to say for definite why someone contracts M.E. So in this post I am going to focus on the mental health factors or psychology. I'm not saying I'm a nut job but I have had my share of depression and anxiety as can only be expected from someone who's also had much physical bad health. And because everyone is sussepible to mental health issues, it's part of life. I think though that people associate the term mental health with the more serious conditions such as paranoid schizophrenia, or brain damage and being locked away, given electric shock therapy and labotomies and therefore it conjures bad images. However put simply it just means the state of your thoughts or emotional wellbeing. For example how much do we revere people like Stephen Fry for their intellect and yet he is dogged by bipolar disorder and has recently admitted to attempting suicide last year. Or cyclist Victoria Pendleton, who after winning her first meddle at the Beijing Olympics still felt the need to self harm. In layman's terms 1 in 4 people who experience mental health issues at any given time so why is it still a stigma? For more info on mental health and for advise www.mind.org.uk is really helpul and is a registered charity that aims to help those in need and break that stigma.

Before they found the ovarian cyst and subsequent bowel troubles I led a very active lifestyle. I actually never stopped (only sometimes during the summer holidays) and was a very competitive sports woman. Maybe even a bit of a big head but you kind of need to have that mindset when you're competing, as long as you know when to tone it down. After that first hospital stay though everything stopped. I was in too much pain to go to school let alone do any sport. So basically I was cut off from everything socially, as well as not being able to do what I loved. In high school I think it's true that everyone is bracketed into categories or roles, as sad as that is. My role had been the sporty, competitive one who'd always have a tale to tell of where I'd been competing that weekend but when I couldn't do that anymore I think people struggled to 'reclassify' me. Let's face it although you are supposed to spend your teens 'experimenting' and finding your feet in life if you step too far you're likely to be outcast, even though you're still the same on the inside. Eventually my role became 'the ill one' who people would try and get an electric shock from my tens machine from, and then I became 'the one that's hardly ever in.' In this time people move on, especially at that age where life is very much about being in the moment. I certainly wasn't the same person anymore and neither were they and when it's a group it's much more intimidating. In no way am I saying that I was bullied just that when I did go into school I would feel completely out of the loop, there was even another girl sitting where I always sat. I felt so alienated and of course when you're a teenage girl with bowel problems could it be anymore embarrassing?

Soon enough it all got too much for me and looking back it's understandable why. It got so bad that I couldn't even be anywhere near school because I 'd panic and when I was there I'd shake and imagine that the walls were sweating. I was lucky that I got my head of year on side and she did evedything in her power to make sure I got through my GCSE's. Everyone used to call her Hitler beacuse she was so awful but in the end even she shed a tear when I got my results. During this time I saw a few councellors at the National Children's Home and a children's psychiatrist who tried to convince me that the way I sat on the toilet was affecting my mood. Seriously! As you can tell I don't seem to have much luck with psychiatrists. I begged to never see him again and although the hospital were a bit cheesed off I didn't. The councelling did help though and they helped me try to start enjoying life again and to help me deal with the panic attacks, so that I could at least spend a few hours in school. The problem with councelling though is that there is often a waiting list and sometimes it's only as good as during the time you're recieving help and of course whether you get along with your councellor. This is why it took me a few attempts but even just talking to someone that doesn't know you personally can help you understand. But of course between the ages of 14- 18 summing up your feelings and the reasons behind them can be difficult.

I think though that what I owe most of all for my change in confidence was starting drama classes, because although it was scary it was also liberating and I got to meet a new group of people that didn't know me; they could just accept me as I was. I was lucky that it wasn't a class that has 'stars' or 'favourites' and therefore everyone was allowed to contribute and work as a team and therefore my confidence really lifted. Too me theatre is underrated, it is actually magical and I owe a lot to it. Maybe I am being a luvie but then again Attraction have just won Britain's Got Talent. Consequently by the time I reached sixth form I was attending all my lessons. The only thing I couldn't do was stay there all day or be in the common room for too long but as long as I had a definite aim I was ok. All I wanted was to try and be as normal as possible and this included wanting to go to university to study drama so that I could pursue it as a career. Let me just add that whilst I was in sixth form the sole emphasis seemed to be on getting into university, it's like you had to go and look now most people even with degrees can't get a job never mind a decent job.

When I was 18 however I was simply not ready to go to university and it was hardly surprising really. I hadn't spent my time gaining more independence and learning how to handle my drink like normal sixth formers. I lasted one term at a university bout 2 hours from home; I tried to make a go of it but everything was wrong. There was 200 people,on my course alone, so I was overwhelmed and swallowed up. I also hated my flat mates and they found me boring because I hardy drank and wasn't sleeping around. In the end I was making excuses to prolong my weekends at home and when I was there I'd hide in my room, curled up in a ball listening to my flatmate play James Blount "Goodbye my Lover"at full blast, I still cringe when I hear him.  I was scared to go in the kitchen. In hindsight this might not have been a bad thing as if I had done I probably would have contracted septicemia or some nasty fungal disease and would be typing this blog with my mouth and a stick. It was hideous. There wasn't even much point in me going in there anyway as they'd used my dishes which were festering in a sea of what looked like vomit and cheese toasties and most my food had been eaten. I completely broke down and all it took was for my Mum to take one look at the kitchen for her to drag me home. I thought I would feel like a total failure but at first all I felt was relief and badly shaken up so I went back for more councelling and was put on fluxloxitine.

Over the next two years I started to embrace life again (sorry for the cheese). I accepted that it hadn't been the right time for me to go to university and nor was it my fault that I had to come home or was bullied. I could always go back to university when I was ready and if it's what I wanted but for now I had time to build myself back up and try new things. After a short time I got a part time office job and then the following September I started at a University close to home where I grew even more in confidence and happiness. Even managing to go away on city breaks with friends, which was a feat in itself as I could cope in the hussle and bussle and not even feel a bit panicky.

I've been told by many people that it's very common to feel lost once you leave university and so it was with me. At the time I had not gained a place on a postgraduate course and and after 3 years of working towards a goal, especially the last year in which I knew that I wanted to be a stage manager I felt completely at sea. I have never experienced depression like it and neither do I want to again. It was completely overwhelming and rendered me completely bed ridden too scared to leave my bed or I'd be hyper and wouldn't be able to stop moving, even to the point of shaking violently. My thoughts were just so dark, which scared me all the more. I even self harmed, which completely terrified me. Why did I hurt myself? Why did I even want to hurt myself when previously I'd been happy with who I was and who I was becoming? I just needed to do it. It's really strange because knowing that you're going to harm yourself brings a sense of calmness, but in no way is it a solution to an anxiety attack it only creates more problems and physical pain and you can also guarantee that it will be the one day that you want to roll up your sleaves because we're experiencing a tiny bit of summer. For more information on self harming then visit http://www.mind.org.uk/mental_health_a-z/8006_self-harm. It is something that I never thought that I would do and yet I did and luckily there is help out there. It does not make you odd or a goth it means you're hurting.

 Because of this I had to have a fair few psyh evaluations, luckily with nicer psychiatrists than I'd had in the past, there was no judgemet they just wanted to listen and help me get better. They arranged for the home treatment team to come visit me everyday and then once a week to help me deal with my emotions in the moment and work on a long term solution. This is a great service as it really helps you understand why you're feeling that way and gives you advice on how to deal with anxiety etc. For example snapping an elastic band against your skin when you feel the need to self harm as it has the same affect but is much safer while you learn to deal witb tbe underlying reasons. If you suffered with social anxiety then they can also help you to get out of the house and be there with you. It really is an excellent service as it means more people can be cared for at home if possible, for example anyone that they feel needs additional care but being committed would hinder their progress, as it means you can learn to face your problems directly and not have to readjust after being in hospital and breaking the routine of being institutionalised. And then of course you get the extra help of friends and family. Of course there are too many tales of the system letting people down and people not getting the help that they need but there is much good too. It just the good news doesn't make for as exciting news coverage. I did warn you all I was a keen advocate for good mental health. During this time I was also put on citalopram after going a bit loopy on fluxloxitine and I had some diazepam for when I got really panicky and I would see my GP and councellor once a week.

Just after I'd finished at university I had applied for a masters degree in stage management and no matter how depressed I was somewhere inside me I was still determined that I had to do it; and I did, I got in! This is just what I wanted and so I fought to beat the depression, even though some professionals told me it was too much. The only thing that I could think of was that this was what I'd worked so hard for and I'd achieved, of course I had to grab it. Yes I knew that I was still fragile but now I had the perfect incentive to want to get better and I would only risk feeling worse if I didn't take up this opportunity. I was armed with the tools now to help me and I'd stopped self harming. Please don't get me wrong depression is not a quick fix solution, some people can achieve what they thought they wanted and still be depressed, such as Stephen Fry or Victoria Pendleton. I think maybe a part of me will always have that tendency but you can get better with support and understanding the reasons why you're depressed.

As I have said I still have days now when I am utterly miserable because of the M.E and once again missing out but I've learnt that it's perfectly okay to feel that way; as long as you don't let it embitter you and takeover, which can be very difficult. Again it's about having that support system, talking and learning from the past. I never want to be that depressed again ever.

So what does this have to do with the potential of someone being an M.E candidate, or myself inparticularly as I'm not saying you too will get M.E if you've had depression. Well psychological distress can be just as taxing, if not more so than physical pain. Leaving you vulnerable. Anyway apologies if the last 2 posts have seemed like a sob story. I'm not after sympathy, because honestly the most important thing is that from each experience I've took something from and they have helped make me who I am today. No not just the girl that falls asleep on buses and has the leg strength of a new born foal, but someone who will always try to find the best and keep laughing through it all and most importantly a person that I like being. Not having M.E would be lovely though.

medical history

There are many speculations about why someone may develop M.E ranging from lifestyle to genetics. Visit www.supportme.co.uk/causes here for more information regarding the research findings into the causes. I'll also go into this in a future post, so you can all do some homework beforehand. In the post 'where it began' I mentioned my rather large set of notes, in fact they are now so large that I am now onto a second folder. There are people in their 90s with smaller files than mine and good on them. The reason I mention this is because it's intriguing to know whether any of this could have had any affect on why I developed M.E. So in this post I'm going to talk about the physical aspects of my past health. Brace yourselves.

Other than being born my first experience with hospitals came at the age of 6. It was the eve of my school Christmas concert and I was all set to be a squirrel, yes a squirrel! Apparently us Welsh have our own version of the Bible where squirrels are an important part of the Christmas tale. Come to think about it I think it may have been Red Riding Hood. I came home from school and was getting into my squirrel costume when my mum noticed that my ankles were bright purple and swollen and when she took me for a wee it was completely red, so she got a sample and rushed me straight up to the doctors and then the hospital. Of course I was just disappointed that I never got to show the world just how good a squirrel I could be. Thinking back I must have been in agony but of course at 6 you don't know any better.

I was diagnosed with Henoch Schoenlein Purpura, http://www.nhs.uk/conditions/henoch-schonlein-purpura/Pages/Introduction.aspx here which is where the white cells in your blood start attacking the red cells; hence the big purple patches and it also affects your joints and stomach. As I say I was 6 years old so I don't really remember much about that time, apart from being sick all over my doll, wanting to always play with the dolls house and getting upset if someone else had it, my sisters visits where she would draw me pictures of sheep with Wellingtons on, riding skateboards. I thought she was the coolest person ever and the other thing I remember is some boy became my mortal enemy for stealing my wheelchair and taking it for a joy ride. However my my Mum tells me that I was not a well bunny at all. I remember being allowed home for Christmas and got absolutely spoilt rotten, I got my very own dolls house but it was a Sylvanian families one, now that is being spoilt. Even back then I knew that they were pricey so I was very pleased. Of course Father Christmas had footed the bill anyway.

Over the next year or so I was to and throw from the hospital. I remember getting cystitis a lot and I couldn't keep anything down or in. I was constantly violently sick or had diarrhoea. My Mum had to make makeshift nappies and carry towels with her if we ever needed to go out. Mum worked at home fortunately but I'm sure the children she looked after didn't really appreciate being puked on. So my sincere apologies. I was so thin that I had to have those build up milkshakes. In time though I got better and went back to school which was quite daunting, it was almost like starting all over again.

Moving on seven years and apart from needing an x-ray on a sprained thumb and all too many hospital visits to relatives I had little to do with hospitals, until that is one day at the age of 14 I came home from school feeling sick and had blood in my urine. Of course the first thoughts are the Henoch Schonlein is back but as it turns out it was an ovarian cyst that had heamorraged. I tell you it's not very often the gynecologist visits children's ward but he explained that he would put me on the waiting list to have the cyst removed.

To cut a long story short, after the operation to remove the cyst I was still experiencing chronic abdominal pains and going to the toilet a lot more. As it turns out they also thought that I had irritable bowel syndrome, which had probably been aggravated by the cyst and ibruprofen. Ever since I have had a trouble with my stomach and bowels. I have seen several gynecologists (I know they don't do bowels but they were looking for other causes such as further cysts or endometriosis), gastroenterologists and dietitians. I have had a camera up and down and all around (the less said about that the better,) scans, x-rays and non of them ever came up with anything conclusive other than the IBS and yet I was still in pain. So all these appointments and tests constitute a large section of my notes.

When I had the severe abdominal pains two years ago and was admitted to hospital 6 times (creating more notes) they decided to really push the boat out to try and get an explanation that was more consistent with my symptoms. Afterall each time I was admitted I had to go through the same rigmarole of them thinking it was my appendix and being dosed up on oramorph. I had the MRI scan that I mentioned and a capsule endoscopy. MRI scans are pretty scary but I wasn't as nervous for this one as I'd had another in the past, however when they scan your small bowel you have to drink this medication, 1 and a half litres of the stuff! Now it says in the guidelines that is a very slight laxative but what it does is help them get clearer images of your dietary tract, however of course my stomach being the hyperchondriact that it is decides that world war 3 has struck and everyone must evacuate. The doctors said they'd never had that happen before but then again that is why I was having the test. Of course I needed to not lose any more of the medication for the scan to work but every time I went to get on the scanner I'd have to run off. In the end I had to wear one of those big granny pad things like a nappy and thank god managed to get through the test. I think it was the longest half an hour of my life. They also have to strap these imaging plates to your stomach so you are literally strapped in. Not good at all and apologies if I've grossed anyone out. Trust me though! Capsule endoscopies are quite rare as most conditions can be confirmed through scans and other endoscopies but basically what it is is a capsule that you have to swallow that has an imaging device inside it and it photographs the inside of your digestive system. How very sci-fi. Tom I know you will be having film ideas. The capsule actually flashes too, which is rather disturbing, but it just means that it's working and sending information to the belt pack that you have to wear, which is attached to lots of patches and wires on your belly. It's really quite heavy and all very weird but it makes for an interesting tale. You have to wear the pack all day and then it takes a few weeks for the results to come through as it takes thousands of images which all need reviewing. When the results came back they showed I had a hiatus hernia and some ulceration of the small bowel, which just so happened to be in the 'large area' between the gastroscope (the one you swallow) and the colonoscopies reach.

It was a huge relief to finally have answers and luckily I can manage them with medication. My gastroenterologist at the hospital did say though that he saw no reason why this should be causing me pain! What?! In fact his letter to me said that the findings of the capsule endoscopy where 'inconclusive' and yet he'd told my GP about the hernia and ulcers. I phoned up his secretary and even she was baffled as she'd seen the images. Sometimes doctors baffle me but thank goodness they let me have the further tests and in my eyes that's what I have and had been causing the pain.

Physically I have also had to see the rheumatologist because during my undergraduate degree I had a lot of pain in my wrists and lost some grip in my hands. No naughty jokes please! So this meant more scans and x-rays and a nerve conduction study to test for carpal tunnel syndrome. This test is another strange one, so I'll give you the details. They place electrodes at specific parts of your arm and then run a small current through it to measure how long it takes to get from one point to the other, to check for nerve damage or blockage. This is really strange as when the current goes through your arm twitches and at one time it makes you wave like the Queen. However all the tests came back clear, so they sent me for occupational therapy to teach me how to do simple tasks easier. Like using a thicker pen to write with so your hand isn't as cramped up and using both hands where possible to spread the weight. Soon enough though they started to improve. It was all very strange but I guess that's me.

So there are a few things there that might have contributed and some things that are otherwise unexplainable. It would definitely be interesting to know if anyone else that has M.E also had Henoch Schoenlein when they were younger, as it implies a weakened immune system. All together I think it's definitely left my body weakened and it always seems to have been long illnesses that as time progressed I've just tried to live as normally as possible with. At one point I even put back an operation as I didn't want to get the lowest mark for an assessment and let people who hadn't been showing up get a better grade than me. Maybe this has had some effect too as I've not been allowing my body to recover and not listening to the pain signals; switching off that signal from brain to body that tells you too slow down and rest, which is a major part of having M.E.

Travelling with M.E

Just updated this post as it had a few brain fog errors. Originally posted at the start of June 2013.

Well I made it to Kos and back but what a journey it was! The night before going I felt tired and thought that  I would sleep but even after my anti inflammatory and some cocodomol my legs were still in agony, so I started to really panic. How was I even going to get out of bed nevermind walk around an airport and onto the plane?  I had a look on the internet firstly about the regulations of taking a walking stick onto the plane. I thought there would be all kinds of security checks and charges, especially as we were flying with Ryanair. Apparently though there are no regulations and passengers that use a stick can take them on board without incurring any charges. However even if I had a stick to help me (not that I generally do but my Mum does have a fold up one from a previous injury) this would still mean being able to walk some distance and at that moment I couldn't even contemplate putting one foot in front of the other. So I looked up the special assistance options. Not that I knew at the time that's what it was called, I thought it would be called disability support or something but of course we live in the land of political  correctness now and I'd like to think I'm special haha. I had hoped to phone up to arrange something but their phoneline wasn't open on the weekends, nevermind at two o'clock on a Sunday morning. Generally special assistance needs to be booked in advance, at least 48 hours before so that it can be put on your boarding pass and arrangements made. However I thought to myself surely they must have some kind of last minute assistance for 'I tripped up and sprained my ankle' type situations. The only thing that I could find was the phoneline and according to that accidents don't happen after 5pm on a Friday. Or in my case a M.E flare up gone wild. My panic levels were getting worse. I just had to hope that when I got to the airport there would be some kind of help available. Fingers crossed arms crossed, everything crossed except my legs as that would be too painful.

At Liverpool airport vehicles can't drop off right outside the terminal building, which I didn't know before as I'd never been, so there is around a 200m walk. Not far I know but a thousand miles in M.E flare up mode. By the time we got inside I was crying with pain and because I'd seen the queue to check in and my heart just sank. As I have said before I am not one to give up easily however I had just had enough and to make things just that little bit worse the special assistance desk was closed.

Firstly my Mum thought that we should sit and wait until the queue had gone down but the longer we were waiting the more people were joining the queue, as there was a few flights booking in. All I was thinking was that this was only the first of the queues, we would still need to queue for security and at the gate and as I'd never used that airport before I had no idea how much walking there would be. Luckily by this time the Ryanair desk was open and my parents went to ask for help. After some tooing and throwing between them and the now open special assistance desk because there was no paperwork and the request needed to be put onto the system I finally got a wheelchair and Oh the relief was tangible. I was nearly crying again. So I was straight into the wheelchair and straight to the front of the queue, well the special assistance queue.


Being in a chair is a strange experience. Firstly because conversations literally go over your head. Usually Mum and Dad rely on me to answer some of the questions but because I was in the chair it was like 'Where's that voice come from?' Also my Mum isn't the best of drivers in the wheelchair sense I think she forgot that I had feet and so kept bumping me into the walls, especially in the lift and of course people are too busy trying to find the toilets or their gates to notice someone in a chair. So it's a pretty scary experience but a relief all the same. Especially as there was a fair bit of walking and stairs considering it's a small airport and there was hardly any seats at the gates.


Whilst waiting at the gate to board I got talking to some other people in wheelchairs. One man, his daughter had M.E and so was very understanding. I think a lot of people were thinking 'Oh what's wrong with her, she's only young and not head to toe in plaster.' It's either that or you get the sympathetic smiles. Anyway this man who's daughter had M.E also had a neighbour with it and she swore by Gold injections. Yes that's right Gold!! Apparently they did her the world of good. I can't imagine you can get them on the NHS though and wouldn't really like to hazard a guess at how much they would cost, but it was definitely worth it for her and excuse the pun but that has to be more than it's weight in Gold. Has anyone had any experience of this?

I was wheeled right up to the steps of the plane, where I got to push in and go straight up the steps very very slowly. If you can't manage the steps then it is possible to use the lift, it's like a van with a scissor lift either end that lifts up to the plane doors. Again this is best booked in advance so that it can be waiting by the plane. Luckily we had reserved seats at the back of the plane, which is one of only a few rows that you can reserve on Ryanair the rest is sit where you like or pay for priority boarding to get on the plane first. We had reserved these seats as last year we had been constantly kicked and shoved in the back and at least on the back row this wouldn't happen. I have since learnt that if you require assistance then you are not supposed to sit on the back row and there is no need to reserve seating as they have to save 2 seats for you over the wings. This is so that in the event of an emergency you can be evacuated easily, but who wants to think about that! It's definitely worth noting for future reference though and can save you money. The back row was handy though as it's close to the toilet, even though I hate using the loo on planes. I'm always convinced that it will be just my luck that we will hit turbulence at that point and there is always puddles on the floor. So no matter how hot the country is that you are travelling too, never wear flip flops on the plane!! You can always put them on when you disembark. After making it onto the plane I arrived at my seat only to find a fully grown woman with a dummy in her mouth in my seat. At least I wasn't the weirdest one on board.

When  we arrived in Kos after a scarily bumpy flight (I'm not ashamed to say I did turn rather dramatic) there was a wheelchair waiting. I think I needed it even more by then after being cramped up for 4 hours and  my legs felt weaker from all the panicing. When I panic really badly my legs shake like mad, so I was even more jelly legged getting off the plane. I was impressed however that there was a chair waiting with not having pre-booked but as Ryanair had put it on their system they were able to communicate this to the staff at Kos airport. Luckily their wheelchairs were ones that you can wheel yourself, so I could get myself to the coach whilst Mum and Dad dealt with the luggage. Although trying to get up the ramps was quite funny. Of course Dad only lit upon the idea of getting a trolley for the bags when we were back in Liverpool but oh well we know for next time. 

For the first few days my legs were quite painful and I could still barely walk. It was funny trying to get down onto the sunbed but I hoped the sun would do some healing and luckily my room was on the ground floor and my favourite restaurant is less than 20 meters away and the owner would always help me walk back. I am good friends with the family that own the restaurant and again they were really understanding and made me feel safe. I think it definitely helps knowing where you're going and being surrounded by people that understand is a bonus because they know why you've had to leave half your dinner before you fall fast asleep in it and won't be offended, which did actually happen. Or you're not being dragged away drunk. I also bought one of those pool noodles to try and exercise my legs a bit to see if that would help. Sitting on the edge of the pool with the noodle under my feet in the water I would slowly straighten my legs and return them back down. The resistance from the water made for a really good stretch even resting my legs on the noodle under the water I could feel the stretch. I'm not sure how much of an affect this had as my legs were still sore but anything's worth a go. Then I couldn't get myself back up again, which probably gave everyone around the pool a good laugh or a perv. 

Anyone anyone that's been to Greece will know that the bathrooms are more of a wet room with a shower head that you have to hold up yourself  (well the basic hotels do as it helps save hot water and means there is enough for everyone.) So in order to have a shower without going splat on the floor I bought in one of the plastic chairs from the balcony to sit on as I showered. Even if I didn't have dodgy legs I think this is something I may bare in mind in future as the bathroom wasn't completely drowned. Soggy toilet paper is not good. Just make sure that your flip flops are handy so you don't slip and break your leg on the way out. Think of the embarrassment. 

During the week I also had a Hamman (Turkish bath) and an aromatherapy massage, which was heaven, for anyone who hasn't had a Hamman they are devine, they cover you in bubbles after exfoliating your skin and it feels like being inside a malteaser. I didn't even have to walk there as we got a transfer, although unfortunately there was quite a few steps in the building itself. Mum and I got taken to the private Hamman where these two male masseurs came in haha. It made me giggle. Unfortunately they weren't that good looking though and mine did smell a bit but him and the girl that did my aromatherapy massage and facial must have had the magic touch because the next day I felt well enough to walk the 100 meters to the supermarket and back. Mind you it could have been the call of a new handbag and Haribo sweets. The next day my legs were aching again although whether this was because of the walk or what sadly seems to be becoming normal I'm not sure. But you have to do things when you can and it had felt good at the time, especially with my gorgeous new bag in tow. 

Whilst away I also rang up Ryanair special assistance helpline to order a wheelchair for the return journey and again found them to be very helpful and polite. All I had to do was reprint my boarding pass, which they had added a note for special assistance on. How can this be? I hear some people cry. Well printers are available all over the world, especially in hotels and asking at reception to borrow theirs or for directions to the nearest internet cafe is far better than incurring a £70 fine (which is clearly stated in their rules Mr Bryan McFadden!)    Plus when you need a chair the less hassle you can avoid the better. When I got to the airport there was a chair by the door  so I hopped in, well fell in. Apparently this wasn't the right type of chair though so I had to wait for another. No I don't understand either! Apparently what you need to do is push in at the front of the queue annoying everyone else and getting lots of dirty looks and then they will send someone to bring the 'proper' chair for you. Don't quote me on that though, but this other woman was waiting forever at the reception desk and not getting very far and this is what one of the security guards had told me to do (another friend from the hotel.) Maybe if you don't want to look rude or face the wrath of people you are going to be couped up with for the next 4 hours it's best to sit down and wait as they were only checking each flight individually. I can't say that this was a fault with Ryanair though, I think it's just the different system for people with disabilities abroad, they don't have as many regulations as we do in the country of political correctness.


So what is in store now, who knows? I'm back to the doctors later this afternoon to see if there's anything more that can be done about my legs. The plane journey probably didn't help but it's always good to get away and as long as you're surrounded by people that understand and can take care of you then there are provisions out there to help you get away and enjoy a somewhat 'normal' time. For more information on travelling with a disability or special assistance take a look at the airlines webpages and search for special assistance.