Hand in hand, Illness and Isolation

Understanding an illness is one thing; or should I say illnesses. Understanding the isolation that comes hand in hand with an illness is a completely different ball game.

I’m not talking about the isolation I once knew too well. I’m not talking about the isolation that comes with only seeing your family for months on end. No, I’m talking about a different isolation. One that I think is much harder to explain.

I have various different people in my life, all of who play an important role. I go to college and I interact with a close friend once in a while, and I see my boyfriend when I can. That used to be all I wished for, but selfishly I still envy other people. I have one close friend, and a couple others I’d just consider ‘friends’ but none of which really get me or understand a whole lot.

The isolation I feel now is different. Back when I was bed bound and crippled by fatigue and pain, I missed out on everything. School, friends, normal social interactions. What held me back then was my illnesses and the inability to function like a remotely normal human being. I was too ill. Now though? I’ve improved enough to drag my ass through college, and meet genuine alive, non imagery, real to the touch people. So what’s stopping me?

I sit at a table in Maths, and I know no one. I’m part time which is amazing for my health, but takes away the chance to meet new people on a full time course. When I walk into a room already crowded with people, I have no place in any of their life’s. I am forced to sit on a table where the only person that acknowledges me is my teacher. I sit and think about how it must feel to be liked by so many people, and to never face the embarrassment of being the quiet girl with no friends. English is better however, I’ve managed to make some friends but the struggle is still fairly similar.

The handful of friends I do have are good, genuine people. Yet isolation comes with having them too. I watch them experience nights out with their other friends, laughing and giggling; forgetting the world. It’s hard to watch. No one considers asking me and I just end up feeling forgotten. I think this is where my illnesses play into it.

I think because for the last 2/3 years I’ve never had the opportunity. It was never a case of being asked and considering it, but always a case of it never being a possibility. I now can go out and I want to, I sure as hell have worked my arse off to get here but it’s as if I’ve been covered with a sheet and totally forgotten about. I think I’ve made it abundantly clear I want to go out and about, experience what I should of done in high school but no one seems to remember me. Part of me thinks I don’t get asked because they expect me to say no. Maybe it’s just too much trouble inviting the girl that’s sick. Both are kind of crappy.

I don’t just want to go out to experience what a house party is like or spend time with a group of friends till early in the morning, I want to do these things in hope of making friends. It’s a vicious circle really. I cant get invited to anything to make more friends which I was hoping to make at this party I never got invited to, so they could invite me to others.

My family have told me to give it time, the day will come when I’m wanted and included in other people’s life’s. I just thought it would of happened already, I think I’ve waited long enough. Don’t you think?

I hate the fact that other people’s fun upsets me. I never wanted to be the person that gets jealous over other people’s happiness; yet here I am, feeling left behind. It’s not true and I’m not alone, I have an amazing family, all of which are my best friends and always will be till I draw my very last breathe. I do have friends too. Yet this overwhelming sense of being invisible can easily eat away at my good mood.

I’ve tried talking to certain people about it outside my family, maybe in hope of some understanding and progress, but I don’t think they do understand. I almost feel desperate, wanting what they have, to be loved and included. I think we often take for granted what we have, I sure did before everything was taken away from me. I feel like people over look the impact and beneficial factors of having friends because they’ve never known any different, and not being invited to something every once in a blue moon , isn’t a big deal. From someone who’s never experienced any of that, it is. Heck, I cant even get my own cousin, MY OWN BLOOD, to invite me to a single party which he has on a regular basis.

The lack of understanding is isolating itself, but being over seen constantly just adds to the feeling I’m already trying to get rid of. At times I feel like I have to insert myself into other people’s life’s to get anywhere. I have to ask about going out, I have to reach out first. I’m always the one at home while everyone else takes for granted the memories they are making. The wild and exciting ones they’ll tell the grandkids. But I can tell you this. I’ve been through some hard times; my whole family have. Every single time no friend nor foe has been there in support, just my amazing family. If I end up a weird old horse lady with 145,876 dogs, cats and ponies then that’s fine, my family are all I need. I have a friend, a best friend and an unbreakable bond in each and every one of them. That’s all I need.

CBD Brothers Review; a healing hand

So me being me, I had to go and get a load of illnesses typical pain killers don’t work on. Yep, I just had to be difficult.

As mentioned in many of my posts, I was diagnosed with M.E at just 13. If you’re unfamiliar with the medical condition M.E, it’s a chronic illness that will more than likely last for life. The two main factors of M.E, although there are many, is pain and fatigue; both of which completely wipe you out every single day in some form or another.

Pain has always been an issue for me, as I’ve gotten older my pain levels have increased, sometimes slightly and sometimes drastically. In therapy or specialist appointments, we have this brilliant little thing called a pain scale. This pain scale isn’t designed for people with zero conditions that live a fully functioning life, but for the fighters that experience pain on hourly basis. 1 is mild and its hardly there. 10 is the most excruciating pain you have ever felt, the pain that makes you question your sanity.

On most days, my pain ranges from a 6 to a 8; it’s there and I know it is and it’s really bugging me but life’s life and you just have to put up with it. Fun. On my worst days I’ve wanted to physically rip my own hair out of my skull, also of which, is fun.

Over the years, I have tried a fair few methods of easing pain. Some being natural remedies like creams, some being baths and heat, some being medication. Well, let’s just say if my pains a 9 I don’t give a crap about the natural remedies and I want some damn painkillers.

I have tried different strengths of Co-Codamol, and neurofen and Co-Codamol at the same time. Then a few others thrown on top because by this point I just don’t care, and yet none have seemed to work. Heat is a good way of taking the edge of though.

Recently I have tried CBD tablets, produced and sold by CBD Brothers.

‘The original alternative’

CBD brothers use whole plant cannabis and hemp extracts imported from Europe to produce their range of products, all of which contain high levels of Cannibidiol as well as other vital cannabinoids. Everything is completely safe and organic, with no side effects what so ever. The doses come in different strengths depending on pain levels, all at which are priced very reasonably considering the difference they have made in my life.

CBD
CBD Tablets

I haven’t been on these tablets for what most people would consider a long time, however I have had several months to experiment with different strengths and see how my pain levels have been effected.

CBD 1
Quick example of one of the strengths for the capsules

So far my experience with these tablets has been nothing but positive, so I am really pleased with how well they have worked considering nothing worked before. Taking the pills regularly has meant my overall daily pain has lowered and I haven’t been so dependant on painkillers like Co-Codamol which I don’t like taking for personal reasons.

Daily pain alone being lowered enough to notice has certainly been amazing, however my migraines have also been helped with the tablets; although not fully taken away by any means.

For headaches and migraines, you can easily purchase the CBD Brothers balm which I tend to use when I have a headache. The palm is also helpful for muscle pain, although it hasn’t been as effective as the tablets in that particular area for me personally.

CBD palm

My sleep has also bettered from taking the tablets late at night, which overall is helping my energy levels as much as a good nights sleep can actually help someone with a chronic fatigue based illness. I suffer from bad dreams regularly, sometimes up to 4 times a night so waking up is part of my nightly not so wanted routine. Since taking a dose at night, my dreams haven’t been so vivid and sometimes I am able to sleep through the night without waking up once.

There’s a huge stigma around medical marijuana, even in the forms you don’t smoke it with no side effects what so ever. However, it’s helping me hugely and I will carry on taking different strength tablets while also trying their other products in hope of bettering my every day pain further.

5 things you learn being chronically ill

Like the majority of people out there, no one tends to appreciate what they have till it’s gone. A common mistake yet still a mistake at that.

When your worst fear breaches the surface of reality, our point of views are drastically changed of how we see the world and the people inhabiting it. Yes, I’m talking health.

Just like many, until I had everything stripped away from me with one mighty snap of life’s jaw, I took my normally functioning body for granted. Granted I was 9, but none the less. Now, being ill obviously has a lot of down falls to it but it does have it’s ups too. Occasionally, maybe. Sometimes.

Taking a step back from life and watching it from the side lines really improves your ability to see what’s going on, how people react to your situation and how they typically treat the average ill person. So here are a view things you learn being chronically ill.

1. People are genuially quite rude to the disabled and ill percentage of the population.

I have noticed, as has my family, being in a wheelchair pretty much makes you invisible to the normies. Now you’re properly thinking that doesn’t make any sense what so ever, wheelchairs are unmissable right? Wrong.

Using my wheelchair for day outs, or distances I can’t walk means I can do a whole lot of observing from down below. Personally, it’s hard enough being in a wheelchair at 17 being pushed by my 13 year old brother without adding to the chaos it brings. I am constantly cut up, pushed infront of, elbowed, walked over, and hit round the head with some stupid ladies handbags. I’m not sure why and how exactly but I’m very much convinced I’m invisible as soon as my bum touches the seat. Magic.

2. People are quick to judge.

I’m sure I’m not the first person to complain of such things, but it’s 100% true. I have a blue badge to help aid me and get me though the tough days. Even on a good day, I may need it as I can’t walk to distance intended for healthy people to get wherever I’m going. As I’ve mentioned before, I also use a wheelchair to get around the place. Anybody would think I’ve just slaughtered a new-born baby by the looks I get given. I’ve heard on multiple occasions that I don’t need my wheelchair, I shouldn’t be in a disabled parking spot or I’m simply just too young to be ill. The looks I’m given can be absolutely heart-breaking, making the whole ill and 17 concept even harder to cope with.

3. Friends don’t always stay.

Over the years, specially at the start of the whole diagnosis process, I’ve lost my fair share of friends. I don’t know what it is exactly, but maybe when you become ill you get a free ‘please run away’ sticker slapped on your forehead.  As many stressful periods of a person’s life often does, a chronic illness or if you’re lucky, multiple (insert sarcasm here), filters out the true from the fake. It hurts, but you find out who’s in it till the end and who isn’t. You can call it a curse and a blessing.

4. People are selfish.

As I’ve mentioned previously, for a large portion of my time spent ill, I spent the majority of it watching from the side lines as everyone else continued embracing life and all it’s glory. I can’t say I was any better when I wasn’t in this position but it’s something that is now incredibly obvious. Unless it personally affects their life or them, people don’t tend to care all that much.  I can’t say this is the case for everyone but from personal experience, it’s a large majority. I had no visitors or cards, not even a single text from outside my close family (parents and brother). I was 13, bed bound and persuaded I had met life’s end. Even now 4 years on, I can’t say it’s got much better people wise, I’m still waiting on that text.

I suppose being ill has enhanced my ability to care for others, and to thoroughly understand the loneliness and overwhelming feeling someone gets when facing a stressful ordeal. I can honestly say, hand on heart, I have been there for as many people as possible in the last 4 years as humanly possible and still currently am.

5. People are highly uninformed on the majority of chronic illnesses.

Everyone has heard of cancer and rightly so. However, what about the 50 million other illnesses, disabilities and chronic conditions a percentage of the world’s population face every single day? I have learnt that most people haven’t got a clue what my illnesses are, what the do or even that they are a thing. There is little to no funding for research and only a few specialists covering my conditions in the UK. It is unbelievable how uninformed  and oblivious the general population is. Yet again, I can’t say much as I hadn’t got a clue till it smacked me in the face. I think this is why it is so important to spread awareness not just among the chronic illness community but outside of it too. Friends, family, the weird guy wandering the streets. Anyone.

It’s all part of my experience learning to dance in the rain.

 

 

Identity Thief; losing yourself to a chronic illness

When living with a chronic illness, in many ways our identities feel taken from us. Whether you live with one illness, or twenty, you are mildly or severely affected, a bit of who we are is striped from us and replaced with the longing ache of who were once were, the person we wish we were.

No matter how much we cling onto the person we were prior to the dreadful diagnosis, sometimes when we look at ourselves in the mirror, we won’t always recognise the person before us. We change in so many ways, although not all bad as being ill can develop us in ways we don’t even realise.

Theft of identity while living with any illness is often predictable, one of the biggest aspects of being newly diagnosed. We’ve all been there, yet not all of us regain the control we need, the control we want.

It is truly devastating to be suddenly restricted by the name of an illness you can’t even pronounce and have no say on the changes being made to your lifestyle and you as a person. We learn to change how we do things, our hobbies and the things we once truly loved. Living in the word of doctors appointments and flare ups mean we have to make tough decisions and these decisions can be just as troublesome to make as anything else.

I’ve had to stop doing so much, simple things from netball games, to walking with my friends into town without worrying about the journey back. Things closer to my heart such as horse riding and playing on the trampoline with my brother. Losing everything at once overwhelmed me with nothing but confusion and the fear of losing myself. I know I won’t ever be that person again, I will never live without pain nor will I ever be illness free. That’s the harsh reality.

I think the fear is being seen as your illness rather than the person the illness has swallowed. I used to and still do fear I am seen as the girl in the wheelchair, rather the girl with the great sense of humour. The girl who was too young to be ill, rather than the girl who loved to paint. I fear I am seen as Myalgic Encephalomyelitis rather than Maddie. Seen as POTS and EDS rather than who I really am. Not only did I fear that others would see nothing but the illness, I felt like I had lost a great part of who I was.

I think the trick is to understand that you can be both the new and the old you. Let the girl with the chronic illness stand out as much as the old did and don’t for one second let it define who you really are. I think we should embrace both the old and the new, after all an illness shouldn’t stop us from being who we are at heart but we should also allow it to build our character. It took me a while to understand that although I had changed drastically, I am still myself. I have learnt to appreciate and accept that although I am not 100% who I was, I am now more capable of understanding others needs, I love harder than ever and I appreciate every single thing I have and am able to do. Yet I am still as interested in music, art, I still love animals and reading and I’m still as quirky, sarcastic and smart as I have ever been.

I am not the sick girl. I am the happy, nerdy, quirky, horse loving, arty mess of a girl who just happens to be sick.

What it means to be strong

Strength is often thought to be categorised as muscular or physical ability of a person, rarely is it appreciated for the strength of someone’s heart and mind.

It should come of no shock to know it hasn’t always been the easiest for my family and I, 1 step forward 2 steps back. Whether it’s been due to illness, passing of loved ones or trouble makers, there always seems to be another obstacle in the way just after passing the last. I think it takes a certain strength to deal with the hand we were given and to every single time come out stronger.

I don’t think everyone is strong, I wish everyone could be but I think it takes a certain type of person to be given hell and then proceed to come out stronger than ever before. We often find ourselves in a place we would rather not be in, like many do, but many a time we see people spiralling down rather than climbing up.

Strength is being given hell and rising above it. Strength is fighting a war you’ve already lost and carrying on. Strength is knowing what suffering, pain, anger and heart ache feels like, and learning to over come each obstacle no matter how tricky. Terrible things happen to good people, people that don’t deserve the golden platter of doom, served with a side of extra doom and a splash of more doom. Terrible things that make us want to cry, punch, kick, scream. Obstacles that project the illusion of drowning in our own emotions, continuous waves. Things that make us want to give up.

However, strength is not about being seen to be okay, to not look broken or as if you’re struggling. Strength is about crying, screaming, being angry at the world and giving it the middle finger. Strength is about allowing yourself to be weak, and then picking yourself back up and carrying on. Telling yourself you’re good enough, tough enough, strong enough and worthy of every damn fight it takes to be happy. No matter what.

I know that determination and strength doesn’t appear over night, and it doesn’t come in swings and roundabouts. I know that the strength I carry, the strength my family carry, is worked for every single second of the day with the scars and bruises to show for it. No matter how many setbacks, no matter how many times I fall, we fall, we will set our goals and reach for them with all our might.

Not everything is easy, it never will be and I know that, I’m sure you do to. So when I’m reaching for my goals, when my mum, dad, brother and I are trying to push through the tough times, I remember that there is beauty and always will be in the many imperfections and perfections of life.

Dizzy Driving

As I’ve just turned 17, learning to drive had very quickly moved up to the top of my priority list the coming weeks before my birthday. There isn’t much difference from the casual 17 year old that wants to wiz about the place in a flashy new car and me. Apart from the small problem of being chronically ill and having the attention span of a damn gnat. Small problem I said, small. Very, very, not so very, small problem.

So this very small, not so small problem, is something I’ve decided I can overcome, if I listen to what this hot mess of a body has to say.

I’ve recently had two driving lessons, the first of which started on my birthday, and I was surprised with an actual car. Yes, you heard me, read me, correctly. I’m incredibly grateful for such a wonderful surprise and I truly am so thankful for that along with everything else my parents do for me.

So far, so good. My lessons are going very well, and I haven’t had to cancel one yet. It’s early days and I have a way to go, but so far the excitement of driving has distracted me from any symptoms I’m feeling, right until I get home. I don’t know if it’s because I have to concentrate on keeping myself safe or not, or because I’m so excited every time the lesson comes around. Either way, I’m not complaining.

Of course there will be days I feel like I’ve been running that much I could actually star on Scooby Doo, but I’ll face those days wisely. I don’t run by the way, like ever. If I ever run, it’s either away from something scary or towards a fridge. Either way, you’d better come with.

Brain fog is as much as a problem for me as fatigue and pain is, so not screwing up massively and plummeting into the nearest lorry is a good sign so far. I haven’t found listening and understanding what Lee (my driving instructor) is saying too hard. In fact, I would very easily say that your instructor is the most important part of this process. If I had someone who didn’t break it down for me, wasn’t aware of my disabilities and had little to no patience with me, I’d be in a completely different state of mind right now. My mum made sure that he was suitable before we even welcomed the idea of booking with him.

As far as actual lessons and my fatigue go, if I wake up and I have that gut feeling I’m not going to be able to even talk normally today, the lesson will be cancelled. I’m not about to risk anyone’s life. Actually passing will be similar. On days I really feel like I can’t, I will ask someone else to drive me. I may not like it, and I may very well have to have a good old talk to my body, a good telling off, but its better than anyone getting hurt. I could never live with myself if I hurt someone, so I will just have to suck up my pride and ask for help. Shouldn’t be too hard, right?

I haven’t just thought about driving, and how I will have to achieve my goals using alternative routes if push comes to shove, but also what I should carry in my car. Now the obvious stuff like a spare tyre and a first aid kit isn’t what I’m talking about. I’m thinking more, ice-cream backup spoon, well spoons, medication, heart rate monitor and a million pair of sunglasses. Maybe a million and one if I’m feeling extra sassy that day. The spoons for well, duh ice-cream, medication for surprise headaches and back/joint pain, a heart monitor just in case my POTS wants to come out and play, and the sunglasses to prevent any headaches in the first place. I’ll add to the list as we go, but for now I think that’s a good start.

I’ve been looking forward to being able to drive for a long time, as many new doors are opened and a little bit of independence is given. It’s early days though, and I have much to experience.

Sugar Fuelled Day

Yesterday was a busy day, to say the least. I had to attend another college meeting about my next year at college, as I’m unable to keep up with a level 3 course and 2 GCSE’s along side it. In simple turns, if I tried, I would crash and I would burn.

This year at college has been hard enough, a lot of challenges to overcome but all which has added to my overall determination. The plan is to do my English and Math’s GCSE’s, achieve the best possible grade and try and catch up. Long story short, I’m 3 years behind where I should be. A couple reasons for that being my sorry excuse for a functioning body, and my high school denying me my entitled home tuition time.

Despite being at home, I achieved a B and a C in my Science GCSE, and a Distinction** in my B-Tec Art and Design. This year at college, I managed to get my English functional skills, hopefully fingers crossed a Merit in my Level 2 Digital Media course and I’m working on my Maths functional skills as we speak. Even if it is a bit of a ball ache.

Anyway, after a very long chat with some staff members from college and noticing her wonky eyeliner dragged across her eyelids, we managed to get the help we wanted and a goal in reach. Nothings set in stone, as what we want if above the college, but I have a feeling for once it’ll go our way.

I’ve had an extremely busy week, well two weeks, with college and constant trips to a hospital 3 hours away for some fairly unpleasant tests, so as you can imagine I was fairly drained of energy. How can I get a short but much needed energy boost you ask? SUGAR. Mama took me to a place called Oatcakes and Milkshakes, our first time there actually. Now when I say these milkshakes are monster sized, I mean you could feed a whole country with just the damn toppings.

I had a Unicorn something, I cant remember exactly what it was called. However, it was pretty much made with a dash of unicorn dust, a can of cream, a handful of sugary sweets, a fountain of bubble gum flavoured drink and a huge spikey multi-coloured lolly sticking out the top. My thoughts; a unicorn pooped in my cup. My mama had a banana split monster milkshake, I’m not entirely sure what flavoured milkshake it was, whatever it was it was certainly a dance for my taste buds. The jar was covered in hard dripped chocolate, a banana placed under a mountain of cream, a few glazed cherries on top, finished with a splash of some sort of yellow sauce. Safe to say my mum enjoyed hers as much as I enjoyed mine. Thanks Ma!

After a sugar high, we ended up visiting my Grandma and Grandad which was nice, I don’t seem to see them too much at the moment. College and various other things have been getting in the way, so it was really nice to catch up and watch my mum get a little stress break talking to them.

I think I mentioned earlier, I had a rather busy week. Well, all honestly I’m surprised I’m alive. I’m surprised I’m even functioning to be honest, but here I am just about hanging on. Homework is coming out my ears and even when I think I’m done with college, the work still piles up. It wont matter too soon anyhow, we’re off on holidays abroad Sunday. All I have to stress about then is the flavour of my ice cream.

Guilt

With pain and fatigue comes guilt.

Guilt. It’s something we all experience throughout our lives, ill or not. However, the stomach aching feel of being a burden to those in your life becomes increasingly harsh at times when living along side a chronic illness.

Something for me personally that differs in difficulty, however at times feels like the entire world on my fragile back. At times, it can be my greatest enemy, tricking me into a state of mind I don’t want to be in. The sort of state that leaves you feeling like you’ve wrecked your families lives.

I know that’s not true, no matter how hard it has been to fight, my family have always dealt with it full force, as have I. I know they’re still happy, maybe not all the time but they are.

I’d like to say it gets easier, but overtime things start to become more noticeable with only yourself in mind to blame. I wish I could be healthy, I wish I didn’t have such a huge affect on my family, but no amount of wishing will solve my problem. No matter how tightly you close your eyes.

Being ill, it gives you a new life. A life I didn’t want for myself or my family but a life at that. Which once was a time of joy and happiness, days passing by spent with my little brother playing Lego or creating dance routines, has now turned into all but a fond memory.

They say you shouldn’t feel guilty, it’s not like I asked for it they say. No matter how many times I am told those same exact words, I will always feel guilty for how my health has affected us.

I remember in the summer when I was younger, back at our old house, my brother and I would spend the whole evening in the garden bare foot, playing together. We had a little orange slide in the back of our garden, too big for us now but at the time felt like the biggest slide in the world. One of us would lie at the top, half on the steps, half on the slide. Then the other person would lie flat on the slide, hold onto the other persons hand and the person standing on the steps would have to pull them up to safety. If we couldn’t and we lost grip, we’d fall into the sharks or lava. Whatever we came up with at the time. We could of spent forever doing that, boy were we close. He was my best friend, still is.

We had a lot of days spent like that, my brother and I. We would build shops from Lego, make the funniest dance routines on the trampoline to show mum, dress up together, anything. One of my favourite memories takes place in the back garden, mum sitting on the bench  just to the right of the kitchen window. Lewis and I chasing each other round the garden, cartwheels and picking daises. My dad came home from work, made his way to us and the dogs, Golly and Gemma, sat down next to mum and we just spent the evening like that. Something I’ll always remember.

This illness, this thing, it makes me so mad.

We can’t have ‘normal’ holidays anymore. We used to spend two weeks in the caravan up in Scotland, my favourite place to be. Days spent walking in the woods, visiting different sites, playing in the sea and a family game of football. At my worse, we couldn’t do that. I remember we went up to Scotland again this one year, and everyone was so excited to go visit this museum place if I remember correctly. I was so mad at myself for not being able to walk up those damn stairs to just get into the place because they had no wheelchair access at all. They said it wasn’t a big deal and we went somewhere else but that sort of thing sticks with you.

Not only did I ruin potentially good memories for us, but I feel like I ruined a whole lot more. My mum quit work to become her 13 year old daughter’s carer. For a portion of my brother’s life, he grew up without his best friend, his sister. Holidays ruined, anxiety heightened.

With friends, you can very much hide them away from the pain of it. It’s easy. They come and go as they please, they have a choice. They can stay or they can go. However, with family; close family, they have no choice. Just like me, they can’t press the pause button.

I think out of everything my mind manages to focus on, thoroughly flipping over every little thing, taking Lewis’ big sister away from him was the hardest thing I’ve ever had to deal with. He got so mad, and couldn’t understand why I wasn’t able to do everything I could before. You can’t ask a 10 year old to understand that.

No matter how guilty I feel, I will always be thankful for having such a truly amazing family to support, love and help me through my journey. I’m surrounded by such wonderful, selfless people every day, it truly makes everything so much easier. Living with M.E is hard, I imagine watching someone you love go through it is even harder. So thank-you. You may not have a choice in whether I’m ill or not, but you got given hell and you made it beautiful. I will be so thankful if I grow up to become half the person you are.

To my brother; I’m sorry. I’m sorry you lost your best-friend for a while but I have every intention of being there for you forever. Your best friend and the person you should call to hide the poor git you ran over.

To my mum and dad; thank-you for being such amazing parents. You make me laugh every single day. You both have made me the strong willed person I am today. You have both shown me how to dance in the rain.

 

 

How I explain a part of m.e

I get asked on a regular basis why I’m restricted in many ways a healthy person would consider ‘normal’, and like always the words ‘I’m chronically ill’ seem to spill out my mouth without a second thought. It’s become a common phrase in my English vocabulary, natural.

Not so often but often enough, I’m asked by fellow warriors how I go about explaining my conditions to someone who hasn’t even heard of anything but cancer.

Both of these questions always seem to lead onto more questions, out of curiosity or genuine concern. However, more than likely they’re just being nosey. So how do I explain my condition/s?

M.E otherwise known as Myalgic Encephalomyelitis destroyed what I knew and replaced it with a life I have had to work hard to have. I don’t understand the condition myself, so how can I possibly go about explaining it to someone else and expecting them to understand? Whether they understand or not at the end of the day doesn’t matter a great deal, they probably only asked for their own self interest anyway. It’s more than understanding to me, it’s accepting and supporting.

So the question I get asked the most: ‘What’s wrong with you’ or ‘What’s that, what’s M.E?’

When asked this question, a different answer seems to crawl from my brain in the form of words almost every time. Why? Because I’m constantly trying to find the best way to explain such a huge part of my life. I used to be so scared to tell or explain myself, why I was in a wheelchair but could walk a few steps and stand up. It was embarrassing being stared down at like you’re some form of scum using a wheelchair you don’t need. Wrong. I did need it, more than you could understand.

This is how I’d like to explain it:

M.E is a chronic illness with no known cure or cause.

I’ve just ran a 30 mile marathon,  I haven’t slept for the last 5 days and I now have weights tied to each of my limbs forever weighing me down. I haven’t eaten in 2 days, my backs been stamped on multiple times and I’ve has a constant migraine for the past 3 days. On top of all that, I’ve been dropped in the middle of the ocean and I have now been paddling to keep myself afloat, my head just above the water, since forever.

None of that is true but, it’s exactly what it feels like.

I have to deal with that everyday, no break, no pause button. All that and I’m still expected to come out smiling.

How I actual explain it:

I get really bad pain throughout different areas, and over whelming fatigue that riddles my body. No amount of rest or sleep will make me feel any better.

“No, I can’t walk very far.”

“Yes? Yes, that’s why I can’t come to college all the time.”

“Em, no. There’s no cure.”

“No, exercise and diet will not help.”

In reality, I don’t spill my feelings and pain out, not like I wish I could. I quickly learnt that no body really cares and if they do, which still shocks me down to the core, I’m then given an hour long speech on how their friend had the same and they cured it with exercise and a healthy diet.

Anyway, I was interested in how people in my family work around the whole explaining the wonderful and mysterious impending doom that M.E just happens to be. I asked my little brother, who isn’t really that little at the moment, how he explained my illness. His reply was:

“I told my teacher you had M.E and when she asked what that was, I said it stood for Myaldhfhfj Ejfkhffdhhtkf -tis. I told her it meant you were in pain, it wasn’t very common and you were tired all the time.”

If that isn’t one of the best explanations you’ve ever come across, you’re doing life wrong.

I love you Lew.

I asked my mum earlier when she was drinking her well stirred, still hot cup of brew parked on the sofa. She said she’d given up explaining and now told people that it’s best to look it up on the M.E association website. A good answer indeed.

Truly, I have discovered no easy way of explaining my illness. The easiest way to understand it is by spending time with me, being there on my bad days and good days. Comparing the two.

I suppose M.E doesn’t deserve an easy explanation, after all an easy explanation is not best suited for a complicated illness. Finding ease within explaining the condition could potentially be insulting the jungle of madness which is M.E, and those who battle it every single day.

Maybe learning how to explain something like M.E is something I’ll figure out while learning to dance in the rain.