To the Person who doesn’t ‘BELIEVE’ in my Illness.

 

dontbelievemeillnessThis year marks an official decade of having Rheumatoid Arthritis. Not something I will be going out to celebrate but still I am proud that I have gotten through the last 10 years.

I have met many people along the way, people who suffer like me, people who don’t know or care about my illness, those who want to understand but can’t, those that do everything in their power to be there for you and then those who don’t really ‘believe‘ in my disease.

Sorry but it’s time I said something…what does that even mean? My disease is not a fairy you don’t have to believe in it and clap your hands for it to be real.  Or rather is it that you don’t believe that it affects me the way I claim it can?

You see me smile and laugh, I get up I go to work, I don’t spend every minute of every day depressed or crying so it must all be in my head. Or maybe ‘it is just not that bad.’

I get not understanding what is going on with my body , hell I don’t really understand it but that doesn’t make me a liar and it doesn’t make this illness disappear.

I feel each time you roll your eyes into the back of your head when I talk about my disease. I feel your condescending tone when you explain how ‘easy‘ a certain task is. It is not easy for me. Every day brings new challenges that my body doesn’t seem to want me to overcome.

I have spent a considerable time of the last 10 years wishing it is all just my imagination. A bad dream, a storyline or a game I had gotten too wrapped up in. Sadly for me this is not the case, it is very real and I don’t need someone to pinch me to prove it’s not just a bad dream.I would love to come to the realisation that I was in some Sci Fi novel where the monster possessed by body causing me pain and I only had a few more chapters to endure and it would be slayed and I would go back to my life. But this isn’t a book or a movie this is my life. I have to live it every day, in pain.

Honestly if you don’t or can’t understand just how much this affects me and others like me I get it. I don’t hold that against you. It’s something I am still trying to get to grips with a decade down the line.

But don’t insult me by saying;

‘I don’t believe it’s that bad’.

‘I don’t believe it effects you that way.’

‘I don’t believe in it.’

This isn’t Santa or the Loughness Monster. My Arthritis is not something for you to debate. It is fact. It is an incurable fact of my life and whilst you might not believe, I have no choice in the matter as I live with it each and every day.

 

You don’t have to believe in ghosts, magic or true love but my disease is not up for discussion. Bear in mind this is not me telling you not to have an opinion, not to have a joke or not to ever doubt that sometimes I am a lazy cow (Cuz I so am) but it is me telling you to get a grip on reality.

I can’t clap my heels three times and wish it was all ok, well I can but nothing will happen. A handsome prince isn’t going to kiss me and cure me so that we can live happily ever after. This is not a Disney Fairy-tale this is life and frankly whether you believe or not it doesn’t make it any less real.

 

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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.

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.

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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Telling The World

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‘What do you mean, How did I catch it? It’s not the common cold or an STD!’ I questioned my cousin. My sister and I, and our two cousins had met up in the village to go for a bag of chips and a catch up. I told them about my arthritis. Now that I knew what was wrong at least I could explain to people. It was easier than trying to explain that I felt sore a lot and for no apparent reason. Of course *Shane would ask something ridiculous. Although at least his reaction made me laugh, I mean I had to laugh at the fact that he thought this was something I could give him. That if he accidently touched me, or if I coughed close to him he might ‘catch’ it. It reminded me of when we were young children playing in the back yard and *Shane thought we would give him cooties because we were girls!

My parents had told my Nana, whose reaction was just as I had imagined.’ Oh the poor creator, oh god isn’t that awful. Well at least she wouldn’t be able to wear those shoes anymore. Those high heels are dangerous things!’ My aunts and uncles were very inquisitive about how I was feeling and if my medicine would help much, but in general they just expected me to get on with it. I liked that though if I’m honest. More than anything I wanted things to go back to normal and while they would never be exactly the same as they were at the very least they could be similar.

My younger sister was amazing! She gave me a huge hug when I told her and asked loads of questions so she would know how to help if I was having a bad day. There is only two years between us and we have always been close. At that time of my life I really needed her and she really came through. She had just the right amount of sympathy for me to make me feel like I wasn’t an idiot for feeling like my world had been turned upside down whilst having just the right amount of nonchalance to make me see that it wasn’t the end of my world… just a big change.

Telling my family wasn’t really what scared me. I knew they’d be supportive if I ever needed help. I knew that they’d understand if I needed to sit out on a family occasion or needed to walk a bit slower than everyone else. It was the dreaded fear that every 15 year old is possessed by at one point or another. What would my friends think, my class mates, the boy I liked at school? Would they think I was boring when I couldn’t jump that fence, or lazy when I’d come last in the fun run? (Which I walked)

My mam rang the school to talk my year head. She explained that packing my heavy books into my school bag and walking fast to my next class was sometimes going to prove quite difficult for me. That sometimes even writing would be hard as my fingers and wrists were very badly affected. I was in Transition Year at the time and my year head also happened to be my English teacher. I thought he was wonderful, I really respected him and still do and I loved my classes with him. Yet there was one day I had a fleeting moment of anger towards him that looking back was quite immature of me. He told everyone in the class all that my mam had said. That I had arthritis, that some of our more physical trips out would prove difficult if not impossible for me and that to make sure I didn’t need any help carrying my bag to my next class. He was just trying to help and make me feel as though my class mates would understand. I didn’t feel as though they would however. I felt like I was the ‘special’ kid who needed help. I thought they were all laughing, thinking, “this weirdo has a granny disease!” In hindsight, I don’t think any of them thought that. In fact most of them if I’m honest, didn’t care. I really shouldn’t have been so insecure, but at that age everything is, ‘a big deal’.

As I got older telling people wasn’t an issue. I didn’t exactly go shouting it from the roof tops or introducing myself as ‘Gloria, the girl with arthritis’ but I wasn’t so insecure about telling people. Most people are surprised and don’t realise that you can even be diagnosed with arthritis during childhood. I find friends are often very accommodating and don’t seem to mind opening bottles or even carrying a heavy shopping bag or two.

One encounter with a friend made me wonder though. *James was on my course for a year where we became quite friendly, about six months after the course was finished he began dating my sister *Kirsty. One night as we were all out in Limerick city, I happened to be quite sore, I couldn’t move my right arm without a lot of pain. I soldiered on and my sister was great. She carried my handbag, ordered any drinks I was having and carried them to my table. She also ordered my food and took it out of the bag, salted my chips and opened my curry sauce in Supermacs later that night. I was very grateful to her, I’d managed to have a good night out because of her and my friends help. However as we were leaving *Kirsty held out my jacket to help me put it on. I heard *James say something quietly to her. He asked her ‘Could she do anything herself?’ At first I was kind of taken back, nobody that night had complained about me needing help. I suddenly felt like a great burden. * Kirsty quickly answered him back telling him to get off my case, that I was sore and that arthritis can be very painful. He looked at her and me laughing… He honestly hadn’t known all this time that I had a condition of any sort other than a big mouth!

That got me thinking, my friends often carried most, if not all of the recording equipment when we went out filming, they helped carrying my shopping bags to the train station for me after college, they poured my tea from the pot at lunch and *James had seen all this and what? He hadn’t realised there was a reason they were doing this. ‘Oh god!’, I kept thinking, he just thought I was a lazy cow. He couldn’t have thought anything else, but that I was sickeningly lazy and made my friends do everything that required any sort of effort.

I have to say I was worried who else saw me as lazy and sometimes I still do. I often think is it better to be thought of as the girl who is being lazy or the one with the excuses?

I haven’t really decided yet……………….

The Diagnosis

ee84aaee5f96b929e49545b8ce1b666a‘It’s not something that can be cured but we will help you manage your condition…..’ started the nurse. As she spoke I nodded quietly, mam was sitting beside me soaking all the information in while I just heard, “can’t be cured”. I felt that maybe it was a little ridiculous to be so shocked, I mean, I wasn’t dying. I had just been diagnosed with rheumatoid arthritis.

It wasn’t cancer, I wasn’t going blind, and nothing horrific was happening. I didn’t need to have a 17 hour surgery or anything insane like that… but still, I felt like I had been punched in the stomach. Those words, “never be cured” kept creeping into my head. The nurse was absolutely lovely and talked me through why I felt stiff and sore, why I was tired all the time and the medication I would be put on.

I kept hearing the words, “manage” and, “control”. At fifteen this didn’t mean much to me. I thought the usual ritual would have occurred, doctors, tests, medicine, a few weeks rest. I thought I’d be feeling fine and back out to the disco before I knew it. However this time was different.  I had been to the doctors for about a year, gone through various blood tests, x-rays, scans and examinations by several doctors and nurses and only now was I getting an answer. Six months previous to my diagnosis I was at the point of being so frustrated at not knowing why I was in pain, that I really thought I would have been quite happy with just an answer. An answer as to why I found it painful to do things a year ago I completely took for granted.

Yet, once given my diagnosis I was only momentarily relieved. I put on a brave face. I was always good at that at the doctors. “Oh yeah, no problem doctor, I’m not bothered by that needle even if it is the length of my arm!’ I nodded politely and listened to all the nurse had to say. My mam was really great. She reminded me it could have been much worse and that now I had medicine I would feel more like myself very soon. She also gave me a cuddle which made me not feel so foolish for feeling a bit sorry for myself.

I was told I had arthritis in most of my joints, this included my knees, wrists and fingers.  I soon began to realise that even with medicine I would have good days and bad. Some days I would wake up and feel relatively fine, I mean, I don’t think I’ll ever climb Mount Everest but maybe, just maybe on a good day a large hill would be my bitch! I’ll never be able to do a handstand again but I don’t really require that skill for any of my life goals so I’m doing ok. Still, there are some days when something as simple as brushing my teeth can prove difficult and painful. It’s the little things you take for granted when you have your health that suddenly become your biggest obstacles. From squeezing the toothpaste out, to turning a stubborn tap on or holding a toothbrush.  On a bad day, they can all seem like climbing Mount Everest to me.

At 15, I felt embarrassed to tell my friends that I had arthritis. It was known as, “something old people got”. You’d expect your granny to have it, not your school friend. My cousin even thought it was contagious, but he was just being a complete idiot! I made jokes about my old lady bones, and I still do. It helps to make light of it, it’s not the most horrendous thing in the world! Why not laugh? It makes people more comfortable too, I find. However I must admit, I didn’t feel like laughing much the day I was told. I know I had arthritis a while before they actually told me in that nurses office, but still that day changed my life. I wasn’t just Gloria anymore I was the, “poor creator” with arthritis, “your one with the fat fingers”, and “the girl with the old lady bones”.

The hardest thing at times is people not understanding me, or my condition. If one person reads this and feels like someone else understands even a bit of what they are going through then I have been successful in what I am trying to achieve.