Invisibly Obvious : My Invisible Illness and Me.

invisible_by_pyroin-d7sxmblI sat in the Doctor’s office while the nurse repeated words like ‘manage, lifelong and chronic’ , but at just 15 none of it sunk in and I had no idea what all that really meant. I expected to be medicated, sent home with a few days off school and I would feel better in a week or two and my life was to go back to normal. Little did I know that was far from the way things were going to be.

Normal is a relative term and suddenly my normal was sleepless nights, needing my younger sister to brush my hair and dress me and for my friends to carry my school bag off the bus for me. My new normal was being in agony for a weeks after one fun filled weekend of shopping and movies with my friends. My new normal was anything but normal for my peers.

People do not understand the impact Rheumatoid Arthritis can have on your life, they hear arthritis and assume you have a bit of an ache in your knee and are a hypochondriac. RA is an inflammatory autoimmune disease which affects the joints in your body  but also causes chronic fatigue , pain and discomfort and limits your mobility. In other words it is your own body attacking itself and causing inflammations to heal the body however the problem lies in the fact there were no wounds to heal in the first place.

The pain is one part of the disease that can certainly test you and push you to  breaking point but it is the lack of true understanding from others that can be the most painful. Rheumatoid Arthritis is not something that we made up in our heads or something we exaggerate. We smile and say we are fine and then we cry in agony when no one is looking  because we do not want to bring down those around us. So we play a great game of hide and seek as we shelter you from the pain we are in.

It is the simple tasks that we once took for granted that affect us the most such as getting out of bed in the morning. I doubt anyone really does this at ease but now I need to prepare myself as my bones ache and creak as I sit at the edge of the bed. I count to three in my head and take a deep breath as that is the little routine I have made for myself to ease the pain of the first movements of the day.

Everything is different now , everything is more difficult now, from brushing my teeth to carrying the shopping in from the car. The little things people do without a second thought and in mere minutes can be a real struggle for me and during a flare up quite time consuming.

People don’t see a sick person though, they see a young woman who should be ‘well able’ for these easy tasks. They see someone who is just lazy and can’t be bothered. I may not have a wheelchair or a missing limb but my body does not function as it supposed to.  I have my body but it is broken, I am broken.

My illness is invisible to the naked eye it seems but really it just takes some time to open your eyes wide and see. You cannot possibly know what every person you encounter on the street is going through and no one could expect you to. But  a friend, a colleague , a loved one has the capacity to see what is going on behind our fake smiles, and lies of ‘I’m Fine’. You just have to look hard enough and when you do my invisible illness suddenly becomes glaringly obvious.

 

This was originally published in The Clare Champion a local paper in Co.Clare, Ireland.

 

Why it’s important to be Thankful even when you have a Chronic Illness.

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My life changed when I was 15 and it wasn’t something I ever wished for but it happened. I was diagnosed with Rheumatoid Arthritis or RA for short. It meant a lot of horrible things, sleepless nights, pain for the rest of my life, limitations my peers would not experience and lots of visits  to the doctors, needles, medicine and loads of blood tests!

Like I said it wasn’t something anyone would ever wish on themselves or another but it happened and as I have grown older and have accepted my illness I have learnt a little bit about what it gave me.

Not only has my illness made me a strong person who have become a fighter but it has shown me in life how the little things are the most important and family and friends will get you through anything.

Because we feel so isolated, like no one understands our pain and like people judge us we can sometimes forget how much the people we love do for us. Will they ever truly understand if they are not ill themselves? No. Will they often say things that hurt us or make us feel as though we are not doing good enough? Yes. But do they mean to hurt us? Do they mean to make us feel like a lesser person? No.

When someone is ill, everyone thinks how it must be for that person. And I have been there it’s tough and every day of your life will be tough, you will have to fight and your life once you become ill will change. But so will the life of the people around you.

Your partner will have to help more but not only that they will feel helpless at times. When you are curled in a ball crying on the bed in agony they will be in their own discomfort. The person they love is in pain and there is absolutely nothing they can do about it. Your children will not be able to play as roughly with you, you won’t be able to go on as many mad nights out with your friends or work as late as you used to. Our illness unfortunately doesn’t just affect us but those around us.

However, there is a light in all this. That even when our problems effect our loved ones, they try to help, they try to understand and they try to not let it affect our relationships.

I have so many people to be thankful for. My mam and dad who took me to hospital appointments and held my hand when I wailed in pain, who sorted my medicine and took time off work to look after me. To my aunts and uncles who not only helped out with the hospital runs, babysitting my siblings when I was stuck at an appointment all day but who also supported my mam and dad emotionally as they worried about my health.

I am thankful for my sister who was just 13 when I was diagnosed, who helped me dress in the morning and take my socks off at night. Who cuddled me as I cried and who always reminds others to slow down and wait for me.

I am thankful for my partner, Aidan who accepted me for my who I am illness and all. Who rubs my back when I’m fighting back the tears and who is patient with me when I struggle with basic daily tasks. Who helps me dress when my hands are too swollen to function and who makes me laugh to try and distract me from my pain.

I am thankful for my brother and father in law who show me their affection in the form of fires and hot cups of tea to keep my bones warm. Who carry my shopping in from the car or open jars for me when I am unable.

I am thankful to my sister in law who is always trying to find ways to help cure me or make me better with natural remedies. I am thankful to my little brother who named me as his Role model because at just 12 he saw what I was going through.

I am thankful to my friends who do all they can to understand my illness and who are the biggest supporters of my blog. They carry my bags when I am too sore and only show understanding when I have to back out of plans. Who make me feel ‘normal’ and don’t treat me as a something that is easily broken.

I am thankful to my little nephews, niece and my littlest sister who make me laugh so much I almost forget about the pain. They get me blankets and give me cuddles when I don’t feel well and ask me questions in a bid to understand why my bones are different to others.

This illness takes so much from you and at times it can be hard to see any light at all. But the love people show you, the care they give you when you are unable to care yourself…people need to stop seeing that as a loss of dignity and instead see it as something beautiful to behold.

Not everyone will understand, and you may lose some people on the way. But those people were not needed in your life if they could only accept you as a healthy person. No one chooses to get sick, no one’s chooses to be in pain. Those that choose to cut you out and who don’t even attempt to understand your new life are not meant to be in that life.

Why not say thanks to those that show you love and compassion. They might not be going through what you are but that doesn’t mean they aren’t doing their best.

Thanks for reading,

The Girl with the Old Lady Bones.

Diagnosed, Dazed and Confused; A letter to myself 10 years ago.

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I nodded at the doctor and sat there puzzled as to why the nurse looked so concerned at my complete acceptance of my rheumatoid arthritis. I continued to nod at everything they said and hoped mam was actually taking in the information. I was happy that they finally knew what was wrong and in my head that was the same as them saying ‘It’ll all be okay now.’

Little did I know that wasn’t the case. I had heard the nurse say ‘manage your condition’ about 10 times in my consultation but I was 15, to me that meant I would get some medicine and in a few weeks I would be back to myself. No one told us in that hospital room the emotional and physical roller coaster I would be on for the next ten years. There is so many things I wish I could have told myself back then or have someone tell me. However until someone invents a time machine unfortunately that won’t be possible so this letter is not only for the 15 year old scared girl of ten years ago but to all those who have just found out they are chronically ill and feel like a deer in the headlights.

 

Dear Me,

 

Wipe your tears, get Dad to make you a cup of tea, sit somewhere comfortable and get ready to hear some things that no one else will tell you. The nurses and doctors are very nice and they have sat you down and told you all about your medication, how often you have to take it and that you will have to have some blood tests every few months.

 

But I’m afraid there’s a lot they haven’t told you, they haven’t explained that having your condition ‘managed’ is not the same as having it cured. The meds they have put you on will help a bit with the pain and it won’t always be as bad as it is now…but it will never be 100% better. You are not the girl you were a year ago, it is not your fault, you didn’t do anything to deserve it but it has happened. It is no one’s fault, it’s just the way of the world. Everyone has a cross to bear and this is yours. 

 

It won’t always leave you in a state of agony where you are curled up in bed crying your eyes out and it won’t always leave you feeling useless. There will be days when you feel like a superhero because you conquered something that was incredible but you did it despite the hurdles the disease put in your way.

 

Stop being embarrassed, arthritis is not something only old people get, there are babies to grannies who are all suffer with the condition and there are different forms of it too. Stop trying to keep it to yourself, start telling the world and  their dog about it and educate people on the fact that you are pretty impressive because you achieve so much even with a chronic illness.

 

Your little sister doesn’t hate you or think your pathetic, give her some time to come around to this. You may be young but she is even younger and as hard as it is for you to wrap your head around this , imagine how she feels. One day you’re her big sister protecting her from the world or at least trying to and the next your crying your eyes out every morning because you can’t button your school shirt. She will become one of the most understanding people about your condition and be with you every step of the way you just have to give her a chance to get there.

 

Don’t worry too much about what your friends think, to them you are still you just your sore sometimes now. You are still a flirt, dirty minded and a bit of a klutz.  None of that changes because of RA and it never will. (Even the Klutz bit unfortunately)

 

Stop thinking no boy will ever love you because of it, sure it adds an additional hurdle to any relationship but you will find someone that supports you, pushes you when you need to be pushed and understands when you have reached your limits. Someone who tries their best to understand where you are coming from no matter how much it bewilders them at times.

 

Tell mam why you don’t want to do the hoovering, she thinks it’s just because well lets me honest here you never wanted to do the hoovering. We both know it’s different now but she doesn’t unless you tell her. Appreciate her and dad and all they do for you. And when they drive you mad about hospital appointments, medicine and taking it easy remember it comes from a place of utter love.

 

There will be things you can’t do, and there will be times when you feel like you can’t keep up with the rest of the world around you. Try not to let it get you down too much. Try to be thankful for all the things you can do and all the opportunities you have. 

 

Learn that it is ok to not be ok. What you are going through is tough and damn it you can have days where you don’t get dressed, where you watch Netflix all day (Netflix is the TV of the future :p) and eat chocolate. It’s ok , you need more rest than other people your age but there’s nothing wrong with that. In fact you should see that as a perk, well the only perk of the illness. If you look at it that way…it’s a little easier to cope.

 

Most of all don’t let it stop you doing anything you want to in life, it is something you will deal with for the rest of your life but you will deal with it. It will become part of you, it won’t make you less of a person, it will feel like that sometimes but that instinct is wrong. You will meet others who have gone through the same things and it will open your eyes up to the fact that you are not alone.

 

You will still have a great life, full of love, laughter and great memories. Your illness will allow you to gain empathy for people and what they may be going through and ultimately your condition will allow you to become a stronger person.

 

Don’t cry, a lot of your life will be normal, dossing in class, make ups and breaks ups and nights out and fights with your mam and dad, then there will be the days that life isn’t so normal but either way…. You won’t ever be who you used to be but you will be ok.

 

You, in ten years’ time.

 

The Girl with the Old Lady Bones.

 

Is there anything you would tell yourself the day you diagnosed? Is there anything you wish you had known? I would love to know! ❤

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To the Person Who Thinks I am Lazy

To the person who thinks I am lazy

To the person who thinks I am lazy, this is a letter for you, in the hopes that after reading this you will get a little insight into how that makes me feel. Firstly I must say It is probably not your fault, if I am entirely honest I might have made the same judgements as someone just like me before I was diagnosed. But then again I was a naïve teenager, still learning about the world and the people in it when I was diagnosed.

This is not a post to give out to you or claim that you are a bad person or even to claim that I am never lazy. At the end of the day, I am a human being and from time to time just like you I am lazy. But for the most part just getting through the day takes more energy from me than climbing a mountain might for you.

I know you may read that and think ‘what exaggeration!’ and roll your eyes but it is true. It’s ok that you do not completely understand. In truth I hope you never really do as that would mean you would have to go through the pain and exhaustion I do each day.

This is not a pity party either or a need for sympathy or attention. All people with a chronic illness want is understanding. Even if you cannot truly grasp just how difficult a regular day may be for us we hope that you grasp the fact that we are in fact not lazy. That we want to work, that we want to play with our kids, go on long walks, attend every event we are invited to ….but whilst we want all that, sometimes that is just not realistic on a daily basis.

Those with a chronic illness who are able to work count themselves lucky, those who has an understanding manager and colleagues are even luckier and those that have a family who is supportive feel as though they have hit the jack pot.

A husband who understands why he has to cook the dinner AGAIN because we are in too much pain, a manager who gets that we wish we were at work and knows that we are important to the team despite our struggles, friends who don’t make you feel guilty that you can’t make it out to see them after all, this is all we want.

We are not lazy but rather in too much pain to get of bed, too much pain to get dressed or brush our teeth. We are not lazy but sit at home willing our body to move at ease so we do not have to feel like we have wasted an entire day doing nothing.

But what you and I must come to terms with is that on those occasions we are not being lazy, nor is it a waste of a day doing nothing. It is a day our bodies need to recover, to revive and to get us through the rest of the week. A day that is unpleasant for everyone involved but that means we are re charged and capable of more in the long run.

We are not lazy, we are just broken, we need more time to re charge then others and we wish it was different too. We want to have a good night’s sleep and feel refreshed ready to take on the day. We want to wake up and the only pain and discomfort we feel is a little indigestion or a period cramp.

To the person who thinks I am lazy, I hope you never have to explain yourself like this to anyone.

I am proud of myself and those around me whom smile every day despite the pain they are in. Those who try their best to meet their goals and life a ‘normal’ life. I admire each and every one of you no matter what your chronic illness whether it is much worse than mine or much milder.

Each day is a battle, but you know what sometimes the illness isn’t the biggest battle, instead it is the people who refuse to at least try to understand.

Just remember you cannot always see someone’s pain, but we can see your judgement.

Rage Against the Button! Fashion & RA.

I hate buttons

From the age of a small child I had an aversion to buttons, not the delicious chocolaty ones but the ones that seemed to be on every type of clothing imaginable.

Don’t get me wrong, I think they are an amazing invention, from back in the day to allow people in and out of their clothes with ease and still covering all the essentials! However even as a child I hated them.

Now as an adult I can’t explain it except that perhaps I knew what was coming down the line, perhaps I had a premonition of sorts! You see, now buttons are not just aesthetically displeasing to me they are the bane of my life! The little ones, with the tiny open holes are the worst. If you have rheumatoid arthritis, especially in your hands I can only guess they have provoked a few angry grunts from at the very least.  

Bending my fingers and trying to twist a tiny round item into a horizontal whole can seem impossible during a flare up. School shirts were the worst when I was first diagnosed. In fact, I got so sick of the struggle each morning I attempted to wear a white T-shirt under my school jumper instead. Sometimes I would get away with other times I wouldn’t.  I was never quite brave enough to tell the teacher why I wasn’t wearing a shirt. The cold hard truth that dressing myself was too painful,  was just too embarrassing for me.  The ONLY people who knew just how bad things were back then were my parents and my amazing sister who would have to dress me practically every day for 6 months of my leaving cert year.

I LOVE LEGGINGS

And it’s not just buttons, I am a fan of leggings! I know , ok they are often described as a sin against fashion but I love them! I don’t wear them instead of pants or anything but I wear them almost every day. Why you ask? Because trying to get jeans or tights on during a flare up or early in the morning is reserved for special occasions. Socks are enough of an ordeal on a regular basis. 

My style consists of at least 90% dresses and leggings. I still like to look pretty but I march to the beat of my own drum and comfort is more important to me. Leggings are lose enough so getting them on doesn’t mean pulling them up step by step like tights or having zips or buttons to zip/close like jeans!

These are things you never even think of when you don’t have something like RA. You can’t understand why someone wouldn’t want to wear jeans or why they don’t wear makeup everyday even to work. And why would you, I certainly took these things for granted when I was healthy. 

I have always liked make up, but recently I have feel in love with it. Partially due to having another blog that from time to time trials new beauty products. Whilst I love how much  how confident I feel with a bit of a make up on, sometimes it’s just not worth it.  I would rather go to work with no makeup on and be in top form to get some work done than have a full face on and be in agony because I exhorted myself. Same with my hair, some days it nice and straight and down and maybe even shiny…. then others times it’s up in a bun and to be perfectly honest probably uncombed.

MESSY BUN

Combs/brushes are on buttons side of this war. They don’t want us to look good, or even decent they must have meetings where they get together with toothpaste cartons and medicine caps and think of unique new ways to make our lives just that little bit harder.

Ok, I obviously don’t think my everyday items come to life when I’m sleeping and have epic battles and adventures (That’s just my teddies, Duh!) But there are just some everyday routine things that frustrate me and I’m guessing that goes for most people who have sort of a debilitating illness or disease.

So some days I am going to look like someone who belongs back in the 80’s with my leggings (and I am a sucker for bright clothes). I’ll have a naked face and a hair stuck in a bun. I might be wearing comfortable shoes and maybe even cosy sock in my boots…and I may not look very stylish at all…but I am way more confident in my comfort then if I was wearing Jeans, a blouse, my makeup perfect and my hair an image of perfection. Purely because I also won’t be red eyed and crying.

smile is the best

To me comfort is stylish, I will most likely never be a trend setter, I will never be the girl who always has her nails done, make up on and hair perfect but I’ll be comfy and when I am comfortable I am happy, fun to be around and laughing which personally I think is the most stylish accessory a girl(or a fella for that matter! ) can wear!

 

5 Things People Might Say When You Tell Them You Have Arthritis.

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Once you tell someone you have arthritis, well they are usually expected to respond. Some don’t know what to say, some say the right thing and some couldn’t say anything worse if they tried. Here are some of the most common responses I got!

  1. “You’re too young to have that”

Most people do not realize that even small children can have arthritis and that two thirds of those diagnosed with arthritis in the world are under 65! Some people may even think that miraculously while you only look like you’re in your 20’s you must somehow remember when the Titanic sank! Just remember to stay calm, it’s not their fault they don’t know everything about your condition. They will learn.

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  1. “You Don’t Look Sick”

People will see you living out your daily life and I find often people say “Oh well you don’t look like there’s anything wrong with you”, I just tell them “You haven’t seen me on a bad day yet!” I just think of it like this if people can’t tell I’m sick I must be doing a pretty good job of getting on with life.

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  1. ‘You can’t do that!’

People may try to tell you that there are things that you can’t do now. Don’t believe them, because only you know what you can’t do! Also try and remember it may seem like they don’t have faith in you or your ability but really they are just looking out for you because they don’t want you to push yourself and get hurt.

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  1. “You Can Do This”

Once again when people tell you that you can still do something once you’ve told them that you can’t, remember that only you know what you can and can’t do. Don’t push yourself to please others. You have to decide what is worth the pain the next morning and what you are physically capable of.  Often they will tell you this by means of supporting you, so while you may want to murder them for saying it, try to understand they just don’t want you to miss out on anything!

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  1. “Oh right, If you need me to help with anything let me know”

Most people don’t really want to know everything there is to know about your condition. They just want to get on with what has to be done, or they don’t see what your condition has to do with your friendship. Most people even offer to help should you need it. So don’t be afraid to tell anyone, its not a big deal to them so it shouldn’t be to you!

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I would love to hear the response you received when you told people about your arthritis or what you said to someone with the condition (or something similar). Comment below or email me at glorialouiseshannon2392@gmail.com , I would love to hear from you!

You Can Do This!

Torcc Waterfall 1

I stood half way up a small hill looking at Aidan, and the rest of the hill just past him. Aidan and I were on a weekend away to Killarney over the summer and we visited Torc Waterfall. Torc Waterfall was beautiful and if you have ever visited you will know that it really is a lovely place. I was feeling sore and even the 500 metres of rough ground from the car park to the waterfall seemed like it was defeating me.  We had looked at the waterfall, taken some pictures, sat and talked by it and all I could think about was the huge row of steps behind us, which I knew Aidan would want to explore.

In situations like this I often feel like a burden or a kill joy to my friends. It can be tough, not just for me but for my friends too. They want me to be able to take part in activities but they don’t want to see me in pain, whilst at the same time they don’t want to have to miss out just because I have to. Something they don’t know is sometimes I really am okay with that. There has been and will be many more times where I will have to miss out on an activity, and that really is okay. It’s fine because I would rather miss out on something than be in pain for days just because I pushed myself. I have learned to weigh up the situation around me and decide whether something will be worthwhile in the end or not.

Torc Waterfall 2

That day was not one of those times though! I really wanted to see what was at the top of those stairs, not just for Aidan but also for me. I braced myself, and took the first step in what looked like a never ending staircase. It’s at times like these I really am grateful for my support network, Aidan being a major part of that. We have been a couple for just over three years and he is really great with regards to my condition. He has always been understanding and supportive since the day I told him.

Aidan is not exactly the sporty type but a large hill or a long walk would do little to scare him. He has a very curious nature and whenever we go anywhere he wants to explore. This means that sometimes I am left telling him to go ahead without me, something he will rarely do. It can be frustrating to watch him look longingly at a long walk way or steep hill and just walk away, both of us leaving unsatisfied. I want him to be able to do all that he can do despite the fact that I am just not up to things like that a lot of the time. I see his brother and his girlfriend play fighting and even messing with airsoft guns, having shooting competitions and I think, “Jesus I can’t even hold the gun never mind shoot it”, and honestly I often feel as though he misses out on a lot because he fell in love with me.

However on that day at the Waterfall Aidan pushed me, but I needed it. It wasn’t actually climbing the stairs that was bothering me as much as not knowing when the stairs would end! I was already feeling sore and tired, what if the stairs went on forever? Obviously that was an irrational thought but when you are there looking at the steps in front of you, you don’t think like that. You just think “I can’t do this!”
The View One

I looked at his face and I saw his belief in me, as corny as that sounds. Knowing that he knew I could do it, I felt like I could. In fact I knew I could. Trust me I still moaned the whole way up, I panted like a dog in heat and I was sweating like a pig but I did it. Slowly mind you, but I made it to the top, I stopped plenty of times and was coached by Aidan but I got to the top. After that, I made it through the whole “yellow trail” which I must point out is the easiest walking trail but I still felt very proud of myself. The views at the higher points of the walk were amazing and though it took a lot of effort on my part and patience on Aid’s part it was definitely worth it.

Yes I have a lifelong illnesses that makes my bones ache but I am lucky that I can still walk, I can still climb. Yes, it is tough but someday I really might not be able to do these things and I am learning that it really is worth at least trying while I still can.  No pain, no gain!

You just have to remember that sometimes “You can do this!” you just have to try a bit harder than the people around which really makes the experience all the better.

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