11 Things I wish I Told when I was Diagnosed with Rheumatoid Arthritis

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At 15 I was diagnosed with Rheumatoid Arthritis , the doctors and nurses talked a lot and explained lots of medical terms to be but there was lots they just couldn’t have known. These is my list of the 11 Things I wish I had known when I was diagnosed with Arthritis

  1. ‘At the moment, there is no cure, but that doesn’t mean no future.’

Arthritis is something that is ‘managed’ and not cured. It is something you will have for the rest of your life and will affect you every day. However, you will still go on living. Things will be harder for you than most, but you still have so much potential and so much life to live. Arthritis may slow you down sometimes, but there is no need for it to stop you.

  1. ‘It is not something to be embarrassed about.’

Sometimes when you need help undressing or get locked in the bathroom because you can’t unlock the door, you will feel utter mortification. Stop…it is fine. You need help or take longer to do things because you are unwell. You are not useless, stupid or an embarrassment. You didn’t ask to be sick it just happened, and it is nothing to be embarrassed by.

  1. ‘There will be lots of bad days, but there will be lots of good days.’

You will have days where you can’t physically get out of bed, and it feels like the world is an incredibly unfair place (it is), but then you will have days where you laugh your butt off with friends and family or can manage a long walk or do something really impressive like dance all night! Unfortunately, you have to take the rough with the smooth, and there will be lots of smooth so don’t worry too much.

  1. ‘”Normal” People will never really understand.’

People without arthritis will never understand a 100% what you are going through. Some will try, and that is wonderful, but they will sometimes say the wrong thing, be confused as to how you can do something today but not yesterday and will every once in a while get frustrated. It is not always the case that they don’t care or don’t believe you it can simply be a case of confusion.

  1. ‘You have to grieve the old you to make way for the new you.’

The old you might have run marathons all the time or worked every hour god sends. The old you might have been able to go out four nights a week, not a bother. But you are no longer the old you. You have the same personality as the old you and hopes and dreams as the old you but you have limitations now, new fears and concerns and new priorities. Before you can fully make way for the new you, you need to accept the old you is gone.

  1. ‘Tell people when you can’t do something. It’s okay.’

Sometimes you won’t be able to pour a cup of tea from the pot or cook the dinner or carry the box from the lobby. Whatever it may be and you need to tell people that. You need to be honest because pushing yourself to do it when you can’t, will leave you in agony and not doing it at all will only frustrate those around you. Just explain you can’t. This is something I still struggle with 10 years on but it is a learning curve and its always better to just say ‘I can’t ‘.

  1. ‘It is okay not to be okay.’

You don’t have to pretend you are fine all the time. Sometimes you won’t be fine. I am not saying stop everyone on your way to the shops or into work and tell them ‘You know I am not ok’ but when a close friend or family member asks ‘How are you?’ you are allowed say ‘Not that great actually’. That’s why we have friends and family members and being honest about when you’re not ok is much better for your mental health.

  1. ‘Tell your Doctor everything.’

Tell your doctor when you feel like the medicine isn’t being effective anymore, or when you have developed a new symptom, side effect or pain somewhere. Hiding it is not going to make the appointment go quicker or make you feel any better.  Your doctor is there to help you as best as they can, they can’t do that if they don’t know the full extent of what is actually wrong.

  1. ‘Laugh about it.’

Sometimes you have to laugh and find some humor in the situation. Funny memes or cracking the odd joke about yourself or your condition can help. Laughter is the best medicine after all.

  1. ‘Cry about it.’

Yes, cry your heart out because it sucks and it happened to you, and you deserve to let all the frustration out. Cry because you’re mad and sad and cry because you are in pain. Don’t hold that in all the time. Once in a while, you need to let it out and throw yourself a little pity party which admits one.

  1. ‘Never give Up.’

Yes, there is no cure, and yes it sucks, but that doesn’t mean you give up. Life is for the living and you are included in that. In today’s modern world there are tools and gadgets to help you achieve all sorts. There are ways and means to conquer your dreams. Where there is a will, there’s a way so never stop trying.

 

This post was originally published by Arthritis Ireland on their Blog. For more stories you can follow me here or on Facebook.

Lets Talk about #TheUnmentionables of Chronic Illness 2: Personal Care

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On a Monday morning during a flare up I’m sitting at the edge of my bed, already knowing it will take me way too long to get dressed, brush my teeth and do something (anything) with my hair. I sit and agonize over the decision whether or not I need a shower.

The thoughts running through my head read like something from a movie starring a mentally ill individual in a creepy mental home constantly talking to herself.

‘I need a shower, I know I do….But I don’t smell its fine..,.fine I tell you. Hmm I don’t know about that one! Well if I shower I’ll need to climb into the bath, shampoo, condition, comb my hair, get dried…Oh God I see what you mean I am already exhausted…’ 

See what I mean. Don’t get me wrong we shower, us chronically ill are not smelly lazy BO wearing troglodytes. We have dignity and pride.

We also brush our teeth even though for me this hurts my wrists immensely most days never mind the agony during a flare up. We comb our hair even though it may take the best part of an hour and it’s not kinking the knots out that is the most painful I can assure you.

We shave our legs and under our arms (I am a girl so no need to shave the face…yet anyways :p)  We paint our nails and put on our faces. We conform to all the societal norms but not all the time. 

Each of these tasks take so much time. Some days I don’t care if I have hairy legs or slightly greasy hair. My face is clean, my teeth are brushed and the smell of me won’t knock a horse dead. That’s all I care about.

I might not wear makeup some days because it takes too much energy or all the twisting and twirling of brushes leaves my hands in bits. Some days I skip a shower as it means I have energy to get to work.

So perhaps you think I am disgusting because I don’t shower every single day. Maybe you think I don’t care about my appearance because I don’t wear make up every day.  I don’t comb my hair every day and I am not always as hairless as a Siamese cat…but here’s the thing; I’m not normal. I deal with a chronic illness and never ending pain every day.

So next time you see someone without perfectly shiny hair or pristine make up perhaps take a second to think about what else is going on in their lives.

All is never what it seems.

What are your embarrassing confessions about being chronically Ill? What are the #Unmentionables to you?

 

 

 

 

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.

 

Chronic Illness, Mental Health & Me

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When you are diagnosed with a chronic illness everyone worries about your physical well being, if you are taking your medicine and how your pain levels are, are your bloods ok, how is your liver doing? You do hours and hours of tests every year to make sure your body is still somewhat functioning, at least enough to keep you alive and yet not one medical practitioner ever asks ……how is your mental health?

Don’t get me wrong I know they already have so much on their plate and their main focus is your physical health but from the time I was 15 to now almost 10 years later no one has inquired about my mental health.

The pain, the idea that your body is deteriorating and is not ever going to get better is a lot to handle at any age. But the worries, the fears, the sense of loneliness , the stigma  all of this combined takes a toll on your mental health.

I have only in the past couple of years learned that the emotional rollercoaster that I am on with regards to my Rheumatoid arthritis is normal. I have learnt that, from meeting with and talking to a variety of others with the same or similar conditions.

I often wondered if I was exaggerating all the side effects of this illness. I wondered should I really ‘miss’ an old version of myself? Is that just feeling sorry for myself? Was I allowed to feel sorry for myself? Was I too sensitive when someone implied I was lazy? And how was I supposed to feel when someone blamed my diet on my illness? These were not questions I was willing to ask my doctor or my nurse.

For the most part I just ‘got on with it’ but there would be days where I would convince myself that I was entirely useless as a human being. That I was a waste of energy and resources on my friends and family. I mean what kind of 16 year old girl can’t dress herself? No one told me these were thoughts that most people with a life long illness experience at some point or another. But then again I didn’t ask. I didn’t ask because that would make me a ‘moaner’ and that was the last thing I wanted to be on top of lazy and useless.

Then there would be times where I would feel a rush of anger towards someone’s ignorance. They said the wrong thing or just stood there in almost disbelief that I a teenage girl could have arthritis.

I worried about my future. I wanted a career, a high flying career. Suddenly I didn’t know if that would be possible. Sometimes I doubted my ability to get through school never mind college and then pursuing a career. I was terrified that I was to become a house wife but with no husband or children. I was so unsure of what the future held it was worse than any horror film for me.

These were all things my mind did each and every day, question why me? Or wonder if I had caused it? Wondered if I had done something to deserve it? Wanted to tell someone how frustrating it all was! How angry it made me feel when no one understood and how devastating it was when people just thought I was lazy.

My mind came up with new questions each day, new things to worry about. To be honest the mental toll is often worse than the physical one. The pain wouldn’t be so bad if we could accept our limitations, or people understood or if it didn’t make us feel as though we are a shell of the person we were before. If we could better deal with the emotional side effects of a chronic illness the physical ones would be much easier to get a handle on.

Mental Health no matter how physically healthy you are is vital and the world is beginning to see that. It is slow but it is progressing. Having a chronic illness is not the same as having anxiety or depression but it allows you to develop those conditions too. You have to look after your mental well being no matter who you are or what you have or don’t have in life.

I find writing has helped me leaps and bounds, not only does it allow me to get everything off my chest but as I publish it to the public it allows me to connect with others who say “Me too!”. If writing is not your thing a chat with a friend can do the world of good. You just have to be brave and tell them how you are REALLY feeling.

You learn so many coping mechanisms as the years go on. Little ways to make your life easier, but you also learn how to deal with those thoughts a little better. You learn that it is ok to not always be ok. That crying can relieve some of the frustration and that feeling hurt when someone implies you are less than you were is more than justified. That grieving the old you is normal and even healthy and that from time to time you will feel a little useless.

If you accept these feeling and actually DEAL with them you will be all the better off for it. Your feeling are not invalid, they are never invalid. So right now this minute…take a moment or two to write it all down, or talk it all out or go and scream into a pillow. Whatever works for you…but don’t hide from your emotions you can’t hide from your illness and you certainly shouldn’t hide from your feelings.  You may feel broken but you have the power to be the strongest you have ever been you just have to take it.

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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