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.

Let’s talk about the The Unmentionables of Chronic Illness ; The Bathroom Trip. #unmentionables

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After spending 10 minutes trying to ensure I have successfully locked the cubicle door, I awkwardly pull down my tights and I let out a little cry as I plonk myself on the toilet seat.

This thing we all do daily, as simple as going to the bathroom can be a struggle for me. It sounds ridiculous but it is the smallest of things that can be the most difficult in my daily life. As my hands hurt it is such a huge effort to do something we all need to do numerous times a day. The whole thing during a flare up can be an ordeal. Trying to lock the bathroom or cubicle door to removing tights, jeans or whatever clothing you are wearing from trying to turn on taps and redress yourself and don’t even get me started on trying to re -open the door.

I have literally been locked in public bathrooms because after the whole ordeal of a trip to the bathroom my hands won’t function enough to open the door. Sometimes it can be quite embarrassing when I’m at a social function and I disappear to the bathroom for maybe a half hour at a time (who knows what they think I’m at), simply because I’m locked in.

Nobody has any idea how difficult this is for me, why would they? It’s not like we talk about our toilet activity with anyone. It is a completely private moment and for the most part it should be. However this ‘unmentionable‘ is a real struggle for me.

A healthy person doesn’t even consider this, they need to pee they walk to the loo , do what they need to do and go back to life. I on the other hand spend time agonizing over do I really need to go…and if so how badly, especially during a flare up and most especially in public places. (As the locks are the worst!)

The best way to explain to someone without RA what it is like for those few minutes of life every day is try to imagine a time you were so drunk you barley knew your own name. You make your way to the bathroom, locking the bathroom door just seems like it should be a task in the game show ‘The Cube’. Then you stubble around the cubicle like a baby calf trying to undress and when you are done you need a nap on the toilet seat because the effort of all that was exhausting. And now you have to somehow manage to muster up the energy to get re dressed, get yourself out of the bathroom, turn on a tap that is as stiff as a porn stars ding dong and get your hands washed. By the time you leave the bathroom you pray it’s time to go home because you can hear your pj’s calling you.

Well for me it’s kind of like that every time I make a bathroom trip. Except I am not drunk, I am in pain. Why am I telling you this? I suppose I feel it is time we start talking about what life with a chronic illness is REALLY like. Why it is so different to that of a healthy person. The struggles we go through that no one really sees or knows about.

It’s not like when people ask you how arthritis affects your life you can say ‘Well actually wiping my ass hurts now so that’s new!‘.  Arthritis or chronic illness sucks and can make you feel like  life is exhausting. The most exhausting part of it though can be trying to justify why you do the things you do the way you do. So let’s talk about The Unmentionables. The things no one talks about. The things like going to the bathroom being a pain in the ass and not the way one might think :p

 

Have you found toilet trips difficult? What other daily tasks do you struggle with that the others in your life have no idea? I would love to know.

If you liked this piece I would love to hear from you, or you can contact me on Facebook where I share some funny memes, inspirational quotes and any tips I have on dealing with my chronic illness. 🙂

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.

 

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! ❤

For more stories, helpful tips and funny memes follow me on Facebook here.

 

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.

The Frustration

 

 

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 As a chronically ill person, a sufferer of RA or whatever way you want to describe me my life is quite often lived in a bubble of frustration.

 

Frustration at being Ill, frustration when I can’t do something, frustration having to cancel plans, frustration at not being understood or believed & frustration at feeling constantly frustrated. Ironic I know.

 

Since I was 15, I have been in this never ending loop of frustration and sometimes I think frustration is one of the most infuriating emotions.  It can be cured with a cup of tea and chocolate like sadness, or a huge bellowing scream like anger. It’s just there, following you around your daily life hanging over you and in truth it’s exhausting.

 

This blog is about trying to see the positives and realise things could be much worse, don’t let your limits stop you and I still believe all of that. However, it’s also important to be honest and realise that life with RA (and other chronic illnesses too) is not a walk in the park. Far from it and sometimes you have to let yourself be honest, even if people roll their eyes, or call you a whinge bag or think your being dramatic.

 

What if I told you I know you’re not being dramatic? I know that it hurts and I know that the frustration of knowing that it will never not hurt is heartbreakingly infuriating. I also know that whilst you have days like that ,where all you can see is a big black cloud following you around there will also be times where you will laugh so hard you will forget about the pain, even just for a second. There will be times you are so overwhelmed by love, maybe from a parent, a friend or the little people in your life  that the pain will melt away if even just for a few moments.

 

There will be times that you will be so proud of yourself, your partner or your child that the pain will not matter so much so that its barely there.

 

They may only be moments, or minutes or hours but they are precious and they will come. These are the moments you have to think about when the idea of getting out of bed is all too much. They are the moments you have to think about when making a cup of tea feels like climbing a mountain. They are the moments you have to think of when existing has become a struggle.

 

To those reading this without a chronic illness, I probably sound melodramatic and like I am just exaggerating. But anyone who has ever lived with or is still suffering with chronic pain will know that life with a chronic illness means just existing is a struggle. Just sitting on your bed, is painful, breathing is painful, existing is just painful. And we laugh and smile and joke because it makes existing that bit easier, and we go to our rooms or hide in corners to cry because we are embarrassed and besides we don’t want to drag others down.

 

And we can be happy and we can fill content and we can feel sadness that has absolutely nothing to do with our pain just like everyone else can. We are human and we hurt  in other ways but we can also feel total happiness and it’s those moments where we feel vaguely normal that we hold on to that get us through the rest of the time when we are struggling with just being, living, existing.