Saturday, 25 May 2013
Thursday, 23 May 2013
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.
Wednesday, 22 May 2013
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?
Tuesday, 21 May 2013
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.
Monday, 20 May 2013
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.
So where did it all begin for me?
I was first diagnosed with M.E/ CFS about 2 years ago. I was having the time of my life, doing a stage management masters degree and was enjoying a good social life. It was around Easter that I started experiencing chronic pains in my abdomen, I know this as I was oooing at Kate Middleton's wedding dress and aaahhhing in pain. I had to take a month off college due to the pain limiting my movement. At first I didn't really think much of it as I'd experienced similar symptoms in the past. However I was admitted to hospital 6 times in the space of that month, each time with suspected appendicitis, I was dosed up on morphine but all the tests came back clear. Still in pain but maintaining it with a tens machine and knowing nothing serious was going on (basically I wasn't going to explode) I returned to college and got stuck in to stage managing a production. I was working long hours and still in a lot of pain but I kept ploughing on as I was enjoying myself and proud of being a stagemanager.
Then one day my legs went from under me walking down the stairs and I was whisked to A+E with a nasty sprained ankle. Funnily I was still looking over some notes in the waiting room, in between playing "Why are they here?" I found it quite funny that out of all the people it could have happenned to it had to me.
So there I am after the weekend with my foot up, hoping along in college still laughing when the next day I wake up with a sore on my cheek and significant swelling under my eye. I was starting to think that things really do come in threes. The doctor put me on antibiotics but the next day I was well and truly walking around looking like Quasimodo with my limp and swollen eye. It's okay you can laugh, I do. I started to feel really sick and get headaches so I headed back to my favourite place (droll) A+E. Turns out I was right to, I had to spend the whole weekend hooked up to a drip because they were worried about the infection spreading any higher or into my brain. I also had a scan on my face, with a very strange looking machine. It felt a bit like being inside iron man's helmet. It did feel rather silly being in hospital with a sore face, especially when there was a family sobbing over a dead lady in the next room. On a personal level it was annoying when there was lots to do. I remember waiting for a bed to become available and having to contact the director because the fight choreographer was stuck on the motorway.It was definitely getting to the point where I was losing my humour and couldn't afford to be 'out of action.'
After that it's all a bit of a blur. I remember trying to get as much done as possible at college and feeling quite drained from the antibiotics. During this time I also had to come back home for an MRI scan of my small bowel, from the six hospital admissions I'd had previously and became quite unwell with the medication they gave me for it. Shortly after my mum also became ill with a kidney infection that got into her bloodstream and was rushed to the hospital. I hated being away from her, we are really close but there was no way I could get back home until the weekend. I felt as though I couldn't even ask for the time off with the amount of illnesses I'd had and it was definitely not a good time to leave the team. This just made me seek solace in my work even more, so that I did not have to be alone and plagued by nasty thoughts. I would go into college for 8.30am and leave at 10pm, so that I could only be in my flat to shower and sleep. My lunch breaks were usually spent at my desk or busying myself in town looking for a prom dress. Although looking back I'm not sure how productive this was. At the time however it was all I could do to ensure I wouldn't get an anxiety attack, as I'd suffer badly from them in the past and my resolve was already low from poor physical health.
When the weekend finally arrived I managed to get home. Mum was home but still tired. Personally I was shattered too (not surprising really) and I started to having mild panic attacks. It was like my body was giving in to what I had been trying to suppress all week or possibly longer. When I went to go back I had a full on panic attack at the train station and had to go straight to the doctors. I felt like such a failure, I needed to get back, I wanted to go back but my body and mind were screaming for rest. Of course at the time I didn't know that's what I needed, back then I just thought "what on earth is wrong with me? I want this, so why is my body not cooperating?" I definitely wasn't seeing the funny side anymore.
After some medicated sleep and waking up to 'concerned' texts and phone calls about my whereabouts I knew I had to make a big decision. My body was telling me it needed rest and had given me lots of signs in the stomach pains, falling down the stairs, the infection and finally the panic attacks but I kept pushing through till my mind told it to shut down. I knew what was ahead of me in the next couple of weeks with the show and then going straight onto a placement. There was lots of long hours and physically demanding work to be done. Realistically I knew I wasn't up to it. No matter how much I'd prepared or absolutely wanted to be. So I decided to ask for leave. It was the right decision I know and the only one really but it broke my heart and I was crying out whilst collecting all my stuff from college and handing over the paperwork.
So by now you'd have thought that that was that, er not quite. The following weekend it was the Summer ball that I mentioned, which I really wanted to attend as it was a chance to goodbye to everyone before they went off on their placements. I had had a lot of rest that week and felt reasonably better, so I saw no problem in going back. It was a great night. However the following day I was exhausted again and experienced a very big panic attack. My body was screaming at me to do something, that I wasn't safe and my thoughts turned dark, which scared me even more. I was due to go home the following day but I knew that I had to get home 'to some kind of safety' straight away. I got on the next train and was desperately ringing everyone to see if they could pick me up. Why is it that when you desperately need to do something it feels like everything is working against you? I was phoning up my family for a lift from the station but everyone was either out or had had a drink, plus the trains were only running part of the way. Luckily my brother was free, I'm just surprised he could hear me through all my blubbering. When I got off the train I just managed to get into my brothers car before falling asleep.
I was asleep for near enough three days straight, only managing to keep my eyes open for a short time. Mainly when I was hungry, although I would normally take a few bites and then fall asleep with food all down my front. I'm still waiting for the photos to appear on facebook. So I needed help eating and going to the bathroom. As well as feeling weak my muscles ached and my head throbbed. The doctor came out and I barely registered he was there, he sent me straight to hospital in an ambulance. Needless to say I didn't see much of the ambulance but I was told afterwards that the paramedic took a shining to my Randy Orton calender.
At first they were concerned about meningitis but all the tests came back clear. They were trying to get me to open my eyes and do lots of exercises like following the doctors finger and touching their finger then my nose but my eyes just wouldn't stay open. Well that was the reason I was there. When the blood tests and x-rays came back clear the doctors became obsessed with telling me that I'd drank too much or had taken drugs at the ball yet I hadn't even had a drink and they could see my bloods were clear. I very rarely drink, no not because I'm boring but because it plays havoc with my stomach and it's havoc enough already, so I've found that it simply isn't worth it. After reading through my notes and seeing that I had a history of depression they became even more intent on this 'line of questioning.' I even had a psychologist shout across the ward whether I was suicidal; no I was not and I'm not deaf either. I was really weak and felt hounded; of course I did feel a bit depressed I'd just had to call time on my masters, if I didn't feel depressed about that then something would be wrong. I was the happiest I'd been in a long time, it was just my general health that was letting me down. What's more I had come into hospital to try and get some answers but I was just being treated like it was my fault and there was a woman in the next bed who shouted all the time and kept pooing herself, loudly. Once I'd explained this and they were happy with my psychic evaluation and test results they discharged me; telling me to rest and recharge my batteries and hopefully things will improve.
Well here I am two years later and I'm still very much in the grips of the condition. In no way is it all bad but it is definitely still very prevalent. The only thing I can say is that I have a better understanding of the condition and a deeper self awareness. What's important to understand is that I'm not saying if I hadn't have had chronic abdominal pain, fell down the stairs or had an infection that I wouldn't have M.E. I think it was a combination of those things as well as the added pressure I put on myself at college and not letting myself rest and recover properly. I was living my dream and I wanted to keep it. It's no good trying to pin it on one thing or wishing I'd have done things differently, because I probably wouldn't have; that's just who I am and being who you are is the best thing that you can be.
Sunday, 19 May 2013
M.E is not a condition that has many answers, there is no cure, no set timescale nor is there much conclusive evidence (despite extensive research) as to why an individual will develop the condition. No medical test will tell you that you have M.E; infact they will probably come back "fine" or "clear," now how many times have you heard that fellow sufferers? Yet physically you are dragging your self around, if not being dragged around by someone else,trying to keep your eyes open whilst in chronic pain and mentally you're calling a straw a fork (true story). That's when you're not fast asleep on the nearest flat surface. It's extremely frustrating. I know a lot of people would say "oh I'd love to be able to sleep anywhere" or "I'd love to be able to sleep all day" but trust me after a while it becomes well to use a bad word, tiresome. Would they also like the insomnia, muscle aches, head aches, gastro problems etc etc? The only relief as such can come from managing individual symptoms, such as taking pain relief or massage and learning to somehow live within your means.
With this blog I hope to reach out to others who are suffering from M.E or their friends and family and let them know that they're not alone in this. We might not have many answers or even be able to get out and go to a support group but there is always information to be accessed. Other people suffering from chronic illnesses may also find this blog useful. In particular I believe that it's really important to talk about mental health issues and how prevalent this can be with sufferers of chronic illnesses. Hopefully this blog will provide some handy hints or as I mentioned to help reduce that feeling of isolation. It's always nice to know that you're not the only one looking like a drunk and falling asleep on buses. Plus I hope it will be cathartic and help me appreciate my own progress. So I hope you enjoy reading my posts and if you fall asleep reading them I won't get too offended.
For more information about M.E or to find a local support group visit; www.meassociation.org.uk
Or for more information on mental health issues visit www.mind.org.uk