The answer with no answers

I have to say I can't wait to get on this plane tomorrow, no matter how much I'm worrying about getting on the plane physically with these wobbly legs. I'm sure adrenalin will kick in. A week in the sun will hopefully do me the world of good. Vitamin D is proven to lift moods and can have a positive affect on M.E symptoms and then there's the relaxation and I am going to try some gentle excercise for my legs in the pool.

In this post I promise to finally get up to the point of my diagnosis with M.E, so let me follow on from my last post 'a new way of fighting.' As expected I didn't see any improvements in my levels of fatigue and was still falling asleep at the drop of a hat. My reliance on my parents became even more. I was also beginning to panic as they were due to go on holiday in a couple of weeks and I couldn't see how I was going to be able to care for myself for 2 weeks, even if my sister came in everyday after work. I would still need to get to the bathroom possibly assisted and to eat before then and as much as she loves me I don't think she'd really want to help me in the bath. Plus I didn't want to be confined to my bed even more, so that I didn't have an accident on the stairs but this would only make me feel more lonely and depressed. There would be very little escape from my thoughts. It was a risk I just couldn't face but I couldn't very well ask my parents not to go away, they very definitely deserved it. At first I jokingly told my Mum that I should go with them, well I say jokingly but it was that type of if I pretend I'm joking then I don't feel too cheeky and maybe they might start to think about it as a possibilty. In the end though I just had to be direct and say that there was no way that I could stay home alone and whether there was a possibilty of me going with them. When you have M.E as I have said it can be a struggle to ask for help, especially when you've been everyone else's help but you have to be honest with yourself and talking is always good. I'm very fortunate that I have people to listen and be able to talk openly too without fear of judgement. I'm not sure how people in this situation could do it alone, although many do and that just makes me sad and grateful for what I do have. So I finally plucked up the courage to ask and we were lucky enough that there was a seat available on their plane but there was no availability at their apartments, so we looked for a hotel that was close to theirs and luckily they had vacancies. The relief was tangible and I even felt excited. Although I did have to try and get a summer wardrobe quite quickly as I had no swimwear or dresses. So this led to some more falling asleep quickly as I tried to go out shopping. Thank goodness for internet shopping, especially when you have boobs of a certain size and can't just pop to primark. Not that I could pop anywhere really in my condition.

Before this I'd not really been the beach holiday type. I am a bit rubbish in the heat (I got sunstroke in Scarborough once!) and I used to get bored easily, lying on a sunbed all day just made me restless. My last few trips away had all been city breaks jam packed with lots of tourist attractions and exploring. However I was looking forward to the peace and quiet, of not feeling any pressure to have to do anything. And I have to say it did help. We did very little, just staying round the pool during the day and eating in the restaurant next door each night. It might sound boring but it was just perfect for how I was feeling. There were of course times that I felt rough and was aching, annoyingly my phone wasn't working over there and if my parents were at their hotel this would sometimes lead to me trying to drag myself up the road. My hotel were fantastic though and the owners let them stay there during the day, which also worked out well for them as their hotel was a bit dirty and mine was lovely. So yes I believe the sun can have a positive effect, especially emotionally but also the extra relaxation of a holiday and the lack of even simple pressures such as cooking help too. It's a shame that we can't somehow replicate that here.

Although the holiday did me good and I'd actually been able to get into a routine of sorts over there, siestas included, when I got back I was still no better. I gave it a week to see if it was just the after affects of travelling but after no improvement I went back to the doctors and he finally said that he was sure that it was M.E. Finally I had an answer all be it an unpleasant one that doesn't come with a manual of how to deal with it, it was an answer. Finally there was at least a name to what it was I was feeling and could tell others. I didn't sound like I was faking it or just being lazy. It does help to know what it is you're dealing with or as they say to 'know thy enemy' but it's just so difficult to also know that's pretty much all you know, no answers, no cure no timescale. That's why I think this blog could be useful and I respect everyone else who is blogging or setting up support groups and all the researchers who are looking for answers.

So I shan't be posting for over a week now while I'm away as much as I'm enjoying blogging and may hand write some posts, relaxation is the key and getting these little legs onto the plane.

A new way of fighting

First of all I've found that quote that I was trying to think of, I'm not sure who said it as I found it on Pinterest but it says:

'It's a beautiful thing when a  career and a passion come together'

My plan for today is at some poing to get a few more things packed. No I'm not going into hospital at least I hope not but I'm going on my holidays! Whey! Whoop or more aptly opaa! 

Firstly I want to go back to where I left off in the post 'what shall we do with a drunken sailor?' Now where was I, oh that's right in bed of course. I'd like to think of myself as determined; sometimes empassionately so and I think people that know me would definitely agree. I got called a human machine once, human machine is much nicer than being called a machine as it implies you still have emotions, which I do. There was a time when all someone had to do was mention something and I'd make it happen. Hello New York! Although that was very definitely my idea too but as soon as my mate agreed to go it was pretty much all booked within the next ten minutes. Plus you have already heard aboutsome of my determindness at college. So there I was in bed, getting plenty of rest and determined to see it as a positive thing. I decided to call it 'my new way of fighting.'

In previous situations where I'd been determined to achieve something I would use the skills at my disposal. So for example with New York it was my love of research and ability to find a bargain. Who doesn't love a good bargain? Honestly cake tins from Poundworld are fabulous and only a pound or is it 97p now? Anyway I digress. Well much like that I was now going to use my resources to help me get what I wanted, which was to get back to college as soon as possible. So I saw sleep as my weapon of choice. I even described it as such to my doctor, who was impressed with my positive attitude. 

When I had been ill in the past with depression and anxiety I had to keep fighting and try to stay strong despite my mind telling me that it couldn't be bothered. I had to distract myself with lots of physical and mental activity to try to keep the bad thoughts at bay, which isn't easy when every time you go out you shake like a leaf from the anxiety. This is what I had tried to do in college; as soon as I'd started to ail I jumped on it and tried to stamp it out. Nothing was going to spoil my fun! This time round however I didn't have the ability to fight with physical distractions but I did have a positive outlook and lots of sleep at my disposal. So like I said sleep became 'my new way of fighting.' I trusted that my body knew what it wanted and therefore I wouldn't try to fight against it and that way I'd win in the long run.

However resting means having lots of time on your hands to think and think and think about what is happenning to you and what you're missing out on. According to Facebook everyone is having the time of their lives or the biggest drama ever; of course they're not really as they're on their computers or phones too busy writing about it than experiencing it. Then there are the completely "where on earth did that come from?' thoughts; like Richarx O'brian (of Rocky Horry and Crystal Maze fame) and the lead singer from Right said Fred are not the same person are they? I adored them both growing up so I pretty much already knew that they weren't but that's the brain for you. Most annoyingly though, apart from these questions begging to be answered at 3am is to get CBeebies songs stuck in your hea. My mum works as a childminder so this happens quite often. No no no no no I donot want to have tea with Miss Mouse at this time thank you. (From Show me Show me.)

But when you've been living an active life , to suddenly be doing very little is incredibley boring. Television wise I still hold by my vow to never watch Jeremy Kyle no matter how bored I become and want to seek solace in the complicated lives of others that i when I'll know I've changed beyond recognition and besides that's what You've been Framed is for. I did go through a phase o watching Extreme Couponing (a program about people who are obsessed with collecting coupons and would get about $1000 worth of food shopping for around $200, not that they even needed most of it) something just fascinated me about the mentality of these people. I also like programs on hoarding for the same reason. The brain is such a complex organ it's just sad that sometimes it messes people up so much that they can't even throw away a used tea bag. Now that I've enlightened you  all a little what is available on the 2 million sky channels I should probably get back to the point.


I think my biggest fear at the time was becoming overwhelmingly depressed again and worrying about it only made me more fearful. Yes it is possible to worry about worrying but that gets you nowhere as the actual reason you're worried doesn't get addressed and becomes lost. Having been through it you learn to pick up on the signs much quicker and therefore can address it or even just simply talk about it and get it off your chest before it takes over. So this time I had to follow a new 'action' plan, which incase I haven't said it enough was to rest and to talk a lot with my parents, because they are the best.


After a while though Id start to get bored and irritated. Cabin fever was setting in. "I've got cabin fever it's going to my brain, I've got cabin it's driving me insane, la la la la la, la!" A little reference there to one of my favourite films , Muppets Treasure Island. Writing this blog I am realising just how often I could break into song. It' the theatre darling, yah! To try to relieve some of these feeling my mum would take me out, mainly shopping to a shopping centre about 15 minutes drive away. I do love to shop just not when it's busy though or ever on a Saturday in Liverpool Primark, or the January sales when the shops are just full of tat from 12 seasons ago and people thinking it's the best thing ever. I never really managed to get round many shop though, sometimes only one and then I'd either feel like I was going to fall asleep in the middle of Tesco or fall asleep in the car on the drive home. The more this happened (not always shopping but visiting family or going out for dinner) the more frustrating it got. It seemed to not matter how much I slept and I just thought to put it mildly "what on earth is going on?" So I went back to the doctors and explained that how much I was sleeping but I was still wanting to fall asleep no matter where I was. He said that it was strange but as it had only been a relatively short period of time he couldn't give any definite answers other than to check my bloods for thyroid problems, vitamin levels and glandular fever and to just keep on resting as I had been.


The bloods came back clear but still a month later I felt no better. My mum had mentioned M.E a few times before and had even asked the doctors in the hospital about it but it had been dismissed. I began to do some research online and found that to be diagnosed with M.E you have to have been feeling overwhelmingly fatigued for over 4 months and experience other symptoms such as headaches, muscle pains, sore glands, brain fog and gastro problems (there are more but I'd be here all day.) It was enlightening, I thought that this could explain everything although I hadn't reached the 4 month stage then. Now just a word of warning about researching medical symptoms online. It is very easy to convince yourself that you have stomach cancer when you're probably just hungry. On my next trip to the doctors I asked whether it was a possibility that  had M.E and he said that it was possible as I'd seen no improvement so far but it was probably best to give it a bit more time. I had mixed feelings about this, on the one hand it was a relief that there could be an answer out there but then on the other hand  I had to wait a bit longer to get it.


So this is now my 3rd post from back in the early days of my M.E journey and I'm aware that  haven't even got to my diagnosis yet and that is oddly what waiting for a diagnosis feels like, a long wait. I hope I haven't bored anyone but I feel it's all relevant. Those first 4 months are in some respects the hardest because you have no clue what's happening to you and medically your body is classed as fine. This is so frustrating to try to explain to others, especially when your seeking time off because they want answers too and you simply can't give them any. If anyone is going through this at the moment then try to persevere. Find a GP that understands and don't be afraid to voice your concerns. M.E is a recognised condition now, we're no longer laughed at or called lazy (well not by everyone) as people were in the 1980s. At the very least they can rule out other conditions that can cause fatigue. Likewise please pass on this blog to anyone you know who suspects they may have M.E. 

Legless but not drunk

My next post was going to continue on from the last but as other M.E sufferers will know you have to deal with every day as it comes and things always seem like they are sent to try us. For a month now I have been having a bad time with a flare up, which has been made worse from a chest infection (a normal illness, yes we even get them too.) For the last week or so my legs have been in a lot of pain and very weak as you may have read from a previous post about me getting stuck on the toilet. Anyway for the past few days I haven't been able to sleep from the pain, now I know at times with M.E it's difficult to stay awake but not being able to sleep is just as mind boggling.

So after another sleepless night and being very limited movement wise I rang up for a doctors appointment first thing this morning and luckily was able to see the doctor this morning. This was an adventure in itself needing help to get dressed and get downstairs and into the car. When we got there my mum went and got a wheelchair but in the meantime a car had parked right up close to the passenger seat, where I was sitting, so I had to cramp u even more to get out the car and be dragged sideways to the chair. It is amazing how many people are oblivious to people in chairs and how not even the desk to check in is low enough to see over. Anyway the doctor reassured me that the blood tests they took last week showed no signs of muscle damage but as he previously said there were some signs of inflammation. Last week when I went to see him we were both quite reluctant to try any anti-inflammatories, such as ibruprofen or naproxen, because of my funny tummy. However today we decided to try some that are used to for arthritis sufferers called celebrex and are known to not be as severe on the stomach. It's definitely worth a try because I'm getting to the end of my tether.

Since then I have had only had 1 tablet so far and caught up some sleep and have actually noticed some improvements. I haven't been needing as much help getting around the house. I am even downstairs watching the tele without being too fearful of being caught short or creating more pain by walking upstairs. So I'm feeling quite thankful. Please note that I am not hailing these pain killers as a miracle cure, because we know that unfortunately that that simply isn't the case and tomorrow or even in a few hours time I could be in agony again.

When you experience downs like this where you are very limited physically and are relying on help from others it makes you question "how long this will go on for?" and "will it get any worse?" Now I try not to think about myself being disabled, although I know it is a recognised disabilty and many people are reliant on disability allowance to get by. So in no way am I having a go at those that claim because we are perfectly entitled to it and it may even be a route I need to go down yet. I merely mean to comment on my own state of mind at present and that is I am not sure I am ready to be formally known as disabled, even after 2 years. I'm scared it will knock my confidence even more and make it look like I'm not trying to get well. I was told by a M.E specialist to not to refer to M.E as an illness because it has a negative affect on your outlook on the condition and I think it's somehow stuck with me. To me I am still that determined woman who will keep laughing through the pain and that's what I hold on to, to stop me from going back to a dark place.

I do still have good days and manage to get out, at the expense of some extra time in bed, so I guess part of it is also public perception. I don't want to be seen as a free loader or to personally feel like I can't go shopping on a good day. I should be feeling exstatic about having a good day not guilty. Another M.E sufferer I know once described it as feeling like being a fraud, because you look fine (well questionable) on the outside and yet you feel terrible on the inside, or that night you can be stuck in bed.

This is something I'm going to have to think carefully about in the next few weeks or months and at the end of the day how are they to know your benefit status? Other than me announcing it on here. Does anyone else share this opinion, or have any experience on claiming benefits?

What shall we do with a drunken sailor?

So going back to when I got out of hospital after being told that I needed to rest and recharge. At first I was just relieved to be out of there, I'd only been in overnight but I was already fed up of being treated as though I'd ended up there deliberately. I was trying to suppress my panic attacks but I just felt so upset. How dare they? They knew nothing about me, as I wasn't particularly up to talking, I wasn't up for anything. The only things they knew about me was what they had read in my medical notes, all be it a very big set of notes. Honestly they can put them on the end of the bed and I'd be catapulted off into the carpark. Hmmm maybe they should have done that. I will discuss that in another post, my notes that is not my need to be catapulted into the air like Gonzo. I was crying my eyes out so much that in the end they called my mum in to console me and wait with me until I could be discharged by the consultant, who would hopefully be a bit more understanding and have some answers up his sleave. Well he was slightly more useful. It helped that I could open my eyes and was more conscious by then so that I could talk properly and get my story across. He sent the psychologist (or was it a psychiatrist, I can never tell the difference) that I mentioned in the post 'where it began' and after explaining the events of the past few months again him and the consultant agreed that it was just my body telling me to slow down and get plenty of rest.

And so I did, well there was little else that I could do, I was tired all the time. I told myself that if that's what my body wanted then that's what it would get; surely then I would start to feel human again. If you want to sing the song from Beauty and the Beast you may. I thought that if I got plenty of sleep now then come September I could go back to college and that thought made things more bareable.

Because I'd left my flat in such a hurry the day after the ball I'd still got some things down there so at the weekend my parents drove me down there. I wasn't completely up to going but it was the last date before I had to hand in my keys, so  pretty much had to. Whilst there I thought that I'd go and see a friend and go to the cinema as we hadn't had the chance the week before. I knew that it was quite a lot to ask but I thought it's a 3 and a half hour car journey, which I would be sat down for and I can try and sleep and also I would be sitting at the cinema and for the car journey home. Well who knew sitting is also no good for you!!

The journey down I managed to sleep a bit but I have never been the best at travelling long distances in cars. I used to get really bad car sicknesses and yet Mum and Dad would insist on holidays to Scotland, which is about a 6 hour drive if not more. Although I let them off because Scotland is stunning and I used to love horse riding up there. Once we got there we had to clear my flat, well room, as I lived in student halls, which is an experience in itself. I had more stuff to pack than I thought. It was a good thing I hadn't tried to get it all back on the train with me, although my pillow and blanket might have been useful but who knows where I would have ended up. So there was a few trips back and to to the car and then we headed into town. I had about a 5 minute walk to meet my friend and then 10 minutes to the cinema, it's not a lot but it was more than   I'd walked all week and I was feeling tired from packing. I was quite relieved to sit down for a few hours in the cinema although I did think that being in a darkened room might not help so I told my friend to nudge me if I started snoring.

On our walk to the cinema my friend was telling me about how he'd been asked to help out on the show that I would have been stagemanaging that week. I wanted to hear about it but at  the same time it was painful to hear. In theatre the show really does go on. I just grinned and bared it because of course I was interested, the show had been my bubble for a while but now I was I was outside that bubble and it hurt. Now in absolutely no way am I saying that my friend was mean to say this, after all I had asked and quite simply he doesn't have a mean bone in his body and can always be relied upon to brighten your day. I wanted to go back to college as soon as possible, I missed it so much. Does that make me strange? Well I don't really care if it does. They say "that you should do what you love" and that when "something that you enjoy doing becomes a career then you are blessed." Or something like that I will have to try and find the quote again. That is however exactly how I felt about stagemanaging.

The film ended and fortunately I hadn't fallen asleep, luckily Transformers had enough action to keep me from being a social embarrassment but I was feeling very tired. By the time I walked back to the car I was swaying like a drunken sailor (yes I was singing it in my head, then and now) and my legs were aching  so much I felt like I was walking on hot sand. I flung myself into the car in an exhausted heap. We had only gone about half an hour though when my legs were in agony, I thought I was going to throw up from the pain.   We stopped at the next services and I tried to stretch my legs out but each step just made me wince in pain. I just wanted to get home and get back to my bed so I took some painkillers and sat in the front seat so that I could have a bit more legroom. It felt like the longest car journey ever, longer even than all those trips to Scotland and I sobbed the whole way. My bed that night felt like a sanctuary and so itg g would become one.

So what did I gain from this? Other than more quality time with my bed of course. Although I was horrendously tired I was actually quite positive. I knew that there was a reason why I felt that way. I'd simply  overdone it. Even by normal standards that's a long day. What was clear to me was that I was right to have left when I did, I could very easily had had a nasty accident during the fit up (when you put all the set and equipment together for a show) or could have been responsible for someone else having an accident. The last thing that you want is to have steel deck fall on top of you, that stuff is heavy. Or fall from a tallescope (very big ladder on wheels with a cage at the top.)

What was even more clear to me was that I was determined to get back there and if that meant taking to my bed for the next few weeks then so be it. My body was telling me to rest and the psychologist and consultant  at the hospital had told me to rest, so I rest I would.

I wanted to cover a bit more in this post but I feel that's a good place to end. Hindsight is a marvellous thing, I'd remembered far more about that day than I thought. So stay tuned for my next post.

Sometimes laughter is the best medicine

It's 4am and I am wide awake, which may come as a big shock to some people. However I am being kept awake by relentless muscle ache in my back and legs. I've taken some cocodomol but they're not having much of an affect so I'm just trying to distract myself. I've been reading a great blog by another M.E sufferer (I really do need to come up with a better word) Samantha McInnes at www.samandme.org and I'm finding a lot of similarities in our M.E journeys, which is quite comforting. Although not particularly nice for Sam or myself. I've also been reading a book called 'Me before You' by Jojo Moyes and am falling in love with it, I love reading but this book seems very poigniant at the moment. For those of you that don't know it's about a girl who gets a job as a carer for a man who is paralysed from the shoulders down but unbewares to her she has basically been employed by his parents to try to relieve his deep depression and to be on suicide watch. Sounds a bit maudlin I know, infact had I known this before I started reading it I probably would have thought twice but I am stickler for not reading the blurb on the back cover because I think it somehow disturbs that escapeism of reading. I am the same with tv guides, I've stopped getting them now because they give too much away and can make a program seem dull because you're thinking well I already knew that. For me I only want that feeling because of my savvy detective skills and ability to read all the dramaturgical signs, ooft what a big word; well I didn't spend 3 and a half years studying theatre for nothing. Anyway getting back on track and yes I'm aware of the tiny spoiler I gave you which contradicts what I have just said.

What's most embarrassing of all though is that I've just had to be lifted from the loo by my Dad, of all the people! Luckily I managed to get my pants up first otherwise I really would have been mortified. My legs just didn't have the strength to lift myself up.  So to be honest I didn't have much of a choice. I had to walk like a toddler learning to walk along the furniture just to get there in the first place. At the end of the day it was either that or stay on the loo until a more reasonable time in the morning when my parents got up for work, by which time I probably would have fallen asleep and fallen head first into the bath.

I absolutely hate being reliant on other people and I like to be in control. This has been one of the hardest things to come to terms with in the last two years, it may seem small but when you're used to being independent and putting others first, it is a big change. I think this is why I dislike flying, because I can't see where I'm going and you can't even see the pilot to tell him to watch out for that strange looking cloud formation; but it's something I endure because there's lots of sunshine and a sunbed or an exciting city waiting at the other end. So rather like flying I've learnt to relinquish some control by accepting more help, not because there's something nice waiting at the other end but because it is at least safer than trying to get anywhere on these Bambi legs. That would only make the situation worse by needing to be lifted up from the floor/ stairs etc.

I do feel particularly annoying when I need help, especially in the middle of the night. As well as disturbing my parents sleep I feel like "I am a grown woman I should be able to get myself a hot water bottle and especially be able to get off the loo." I know many people would be horrified to hear this and think that it's the ultimate in laziness and selfishness but let me tell you I hate it. It is bad enough to want to fall asleep in public places and feel constantly run down but then to lose your dignity and have the simplest of tasks elude you can be soul destroying.

Somehow I'm managing to keep my humour about it, like they say "if you can't laugh, you'll cry" and trust me I've cried a lot and will no doubt cry a lot more. As my Dad was helping me back to bed last night, holding my hands, I did my best Brucie impression. No not a tap dance unfortunately but a wobble and a "keeeeep dancing." I am extremely lucky to have parents like mine, they just understand and are always there, no matter how many times I ask. I guess that in part this comes from seeing me at my worst, they were still fab before that though. They see the things that people in the outside world don't see. Like me needing help to get out of bed before I wet myself. So I try and keep my humour up for them too, to let them know that I'm still fighting and that I'm still me. I've just had to learn the hard way to ask for help, no matter how much it stings emotionally.

In future blogs I'll chat more about the perceptions of the outside world but for now my arms are aching, so I best give them a rest.