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?

 

 

 

 

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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.