Friday, 24 January 2014

Pain Pain Go Away

A couple of weeks ago I had a really bad episode during the night and couldn’t get to sleep until gone five am due to the pain being so unbelievably bad. Usually I can deal with the pain I am in, I’ve got used to coping with it. However, that Thursday night I was crying pretty much constantly for over five hours. Mum was there to comfort me until the wee hours of the morning. I don’t know about you, but I always want my Mum when I’m poorly so I was glad she was there, offering leg rubs and a hot water bottle.

After phoning NHS direct and then speaking to the out of hours doctor, it was concluded there was nothing anyone could do. The strongest medication that the doctor carried, I have got used to, so no longer lowers my pain. The next step up from that medication is Morphine. He isn’t able to carry that. The doctor then told me that if I went to A&E they probably wouldn’t give me Morphine, as they don’t know me or know much about ME. I felt abandoned and given up on. It was fine for the doctor to say “just try and ride it out, try and go to sleep,” he didn’t have to endure the pain I was in.

I eventually fell asleep and woke up the next morning in considerably less pain. I have had to wait until today to get an appointment with my GP, he’s semi-retired, been on holiday etc etc! Anyway, today he gave me a small number of low dosage Morphine tablets. I am excited but a bit scared, (all the side effects). Anyone who has been in any kind of pain before will know how tempting a painkiller is! After being in pain for over two years constantly, imagine how tempted I am to take a Morphine tablet! I feel like a child resisting a sweet. Those tablets are downstairs and would (hopefully) take all of my pain away. Usually it’s the chocolate in the cupboards that call me, now it’s Morphine!! I know I must only use it for really bad episodes but when I don’t have pain relief day to day, they would bring me a very welcome break from the pain!

Take care,

Rachel x

Tuesday, 21 January 2014

Anyone Know The Date?

As I think I’ve said before, I never know the date, not even the year; I still think we are in 2012. I’ve thought about this and maybe I am in denial. Maybe I don’t want to believe we are now in 2014 because this means time isn’t standing still, it’s moving on and passing me by. I’ve been ill for over two years now and I feel like I haven’t progressed in any area of my life. I do not really feel like I am living my life. I don’t really enjoy many things now, I’ve had a couple of fantastic holidays and my amazing friends and family are around me and I love spending time with them but I feel like the period of time I have been ill for has stood still, and I wish it had in a way because I want this time of my life back. I want to be well and relive my very early twenties by partying hard and enjoying all of my hobbies. I feel like days are just passing me by and I haven’t done anything productive. I’ve watched a film and 2 episodes of Great British Bake Off. Well that’s not really a story for the grandkids is it?

If I look at my situation overall I know that this illness is teaching me lessons and building me into a stronger, more understanding “better” human being but its so hard to see that day to day. I’m not working, I’m not contributing to the world, I’m not passing any knowledge on to anyone, I’m just sitting and resting and it seems sometimes as though I’m worthless. I don’t have an identity, except I have M.E. That has become who I am. I was a gymnastics coach, I adored it, it was my passion and I passed on my knowledge and taught people my passion. That was who I was. I lost that and it still upsets me that I am not that person anymore.

I want to progress in life and I want my life to mean something. I hope with time, and lots and lots of sleep, my body will heal and I will be able make those memories that I can eventually tell the grandkids!   

Take Care,


Wednesday, 15 January 2014

New Year, New You – My Rethink

I think when I wrote my last post I was in a bad mood because it was quite pessimistic. However, I am now in a much better mood and trying to be optimistic. Kerri – my dear sister, read my last post and was complimentary but also gave me some advice. New Year resolutions don’t necessarily have to be fitness related. This hadn’t even occurred to me. I guess my brain is so focused on exercise and fitness still, that I didn’t even think about other goals that I could set myself that would be realistic considering my health.

Kerri and my auntie have suggested that I write down my M.E journey so far and continue to do this until, hopefully, I recover. My auntie said she would then turn this into a book. I am out of my depth when it comes to writing, I feel like I can barely write this blog, let alone a book! (With a bit of luck this offer still stands from my Auntie!! We haven’t spoken about it in a while!) This WILL be one of my New Year resolutions.

Another of my resolutions needs to be to sort out my diet. I know what I eat is not ideal for someone with M.E, however, knowing what is ideal to eat and eating what is ideal is very different for someone who can’t stand up for long enough and doesn’t have the energy to prepare a meal! I try to get my five a day and I drink a lot of water but if no one is around to make me any food I will leave it hours before I eat. Hopefully, with the help of a friend I am going to start eating more regularly throughout the day, and with any luck this will help my energy levels increase!

I hope all of your New Year resolutions are going well and you are sticking to them! Is it too late for me to make my resolutions? I’m only two weeks late! Those who know me wouldn’t expect anything less!!

Take care,

Rachel x

Friday, 10 January 2014

New Year, New You?

I am all for self-improvement, god dammit that’s part of the reason why I’m ill! I was so consumed in trying to improve myself; I forgot to actually take care of myself, leading to this horrid illness. Anyway, like I say, I love it when people want to improve their lives but please just stick to it!! Set a goal and try your very best to achieve it!

64% of New Year resolutions will make it passed the first month; only 8% will be successful.

I'd love to be making one of these resolutions like, I will start to exercise 3 times a week. Actually, I would like to be making a resolution such as, I will start to exercise everyday, but both of those are unrealistic for me. I get insanely jealous when I see people running along Brighton beach, practicing at my old gymnastics club, or even talking about going to the gym. Exercise was my life before I became ill. Although I am jealous about not being able to do these thing myself, I get even more annoyed when people say “I’ll start running next week.” Get up and do it for you and do it for me too please because I would love nothing more than to be able to go for a run along the seafront again.

As for the new year, if my friend hadn’t have text me to tell me it was new years eve I wouldn’t have even known. I never know what day it is, what the date is, what month we are and most of the time I don’t know what year it is either. I usually write 2012 if I’m writing the date down. I don’t really have anything to distinguish between days because often my mum has been to work and is back home by the time I wake up. Dad has crazy work patterns so I can't use him as a guide, so most of the time I use medical appointments to figure out what day it is, but really why do I care anyway? My pain and exhaustion levels don’t change depending on the name of the day or the year that we are in!

At present, a new year doesn’t mean much to me apart from reminding me that other people are setting goals, improving themselves and moving forward with their lives and I feel very much like I am standing still.

I received several lovely messages wishing me well for the New Year and hoping this would be the year that I start to get better. These were very touching and its lovely to know that people care so much. I really hope this is the year that I start to improve and I wish everyone else happiness and health.

Take care,

Rachel x

Thursday, 2 January 2014

My Inability To Switch Off!

It's crazy how an illness that makes me so terribly exhausted, forbids me for going to sleep at night. 

Until recently I thought I was a bit of a fraud. Surely I wasn't actually ill if I was still awake at 2am some nights? This doubt in my mind made me think others would doubt me also. I thought people won't believe I'm ill if I tell them I can't get to sleep. I could imagine people saying, "How can Rachel really have M.E if she can't get to sleep at night? She's meant to be tired all the time!" 

After reading posts by other blogging sufferers I soon realised that I wasn't alone in my inability to switch off, which although unpleasant for them, it was reassuring to know I wasn't the only one. I wasn't a fraud but in fact "normal" among other sufferers. ("Normal" is not a word I use in my vocabulary anymore so it was great to use the word to describe myself!) 

I've tried a few different ways to get myself to fall asleep; listening to calming music on YouTube, listening to music on my iPhone, playing solitaire on my iPhone, watching something on BBC iPlayer, deep breathing, laying in the pitch black, (thank you black out curtains!), trying to think of nothing but falling asleep. The more I tell myself I need to go to sleep the harder it is to drift off. My brain doesn't really like to work during the daytime, whilst I'm trying to have a conversation with someone, or trying to concentrate on something, but my brain loves to make up for it and work overtime as soon as its passed 11pm and everyone else in the world seems to be asleep!! 

There's the bloody brain and then there's the bloody pain. Constant leg and back pain, with the occasion wrist pain or headache, is not the kiddie when you're trying to go to sleep. I can only lay in certain positions and then I can only stay in those positions for a short amount of time. Trying to find a comfortable position is a harder task than you would think. 

I dread the part of the evening before I fall asleep.. I just hope for the least pain possible and my brain to have an early night, hopefully all leading to an easy drift off into the land of nod. 

After all, less sleep equals more pain and more pain equals less sleep. 

One thing I can be thankful for is that once I'm asleep, apart from position adjustments which are carried out in a sleep haze, there's no waking me up! 

"Please can you listen out for the postman tomorrow, I'm expecting a parcel, Rach?" 
"If its before midday, Mum, you've got no hope!" 

Take care, 

Rachel x