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?

 

 

 

 

Chronically Ill and Hopelessly Ambitious.

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‘I am so sorry’ I half sob down the phone. ‘I hate doing this, I really do’. At the other end of the phone is my boss getting the call for the 2nd or 3rd time this month that I cannot make it into the office today. Luckily I have a very understanding employer and I am never lead to believe there is any anger there when I am unable to work.  Still I feel it myself, I curse my broken body and wish I could just be well enough to make it into work.

Before I could even legally work I had already been diagnosed with rheumatoid arthritis. Naively as a teenager I couldn’t imagine why or how this illness would affect my career or my working life.

I was always going to be something or someone, I always wanted a career as a teacher, a writer, in marketing or PR. I was the weirdo who enjoyed school work and thoroughly believed that boredom should be classed as a form of torture.

I never stopped for a minute and thought how hard it would be to work for me. Even when I was missing school because I couldn’t physically get out of bed. I always assumed it would get better at least better enough for me to hold down a job.

It has improved from when I was 15, but I can have a flare up at any time and for a number of days or even weeks. Some days I can work through it others I simply can’t. It is not the way I wish it was. I envy those who call in sick once in a blue moon or have the option to ‘pull a sickie’.

I wake up some mornings and wish I could feel fulfilled by a life in at home, now work just me and Philip and Holly or Jeremy Kyle and the other stars of day time TV to keep me company.  That’s just not me.

I remember when a friend a couple of years younger than me was finishing exams and I asked what he’d like to do once he was finished. He answered ‘Go on the dole.’. I was so jealous of his lack of ambition in that moment. I wish I could be content in boredom and living off social welfare. I wished my only ambition was a lack of ambition.

Don’t get me wrong there are plenty of people who cannot work I was one of them for some time. However I think people have the wrong idea about us who are chronically ill. We want to work, we want to have high flying careers and climb the career ladder.

We don’t want to call in sick time and time again each time feeling guilty, anxious and unsure as to how your colleagues and employer must feel.

We want to be a success either keeping the job and status we had before we were ill or gaining that despite the fact we are ill.  We are fighters and it is only when we are physically and mentally unable that we won’t work. Won’t is the wrong word can’t is what it is.

The frustration of knowing that on a good day you can rock your job, you are on top of everything and you are willing and able to work your butt of. But on the bad days your mind can do all that is needed but your body doesn’t want to corporate.

I am lucky to have the Boss I do, I am sure it is frustrating for him too but he would never let me know. Not everyone shares my good fortune. Still, then I would look to other jobs, to alternatives to a more understanding employer or taking a break until you are well enough.

Please don’t lose your ambitions even if you are too sick to work now, that may not always be the case. Don’t give up on your dreams, hopes and ambitions…..but tailor them. Recognises that it may take you longer, it may be a harder road you have to travel but that will make you all the more successful when you get there.

That is what I have to believe to get through it. Today is a bad day, tomorrow I might take over the world. Keep going. Your chronic illness won’t give up and neither should 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.

 

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.