Sitting at the end of my bed, it suddenly thumps me across the chest like a ton of bricks. My lip trembles, I can feel the lump in my throat and I have to stop myself before the tears flow. I’m struggling to put on my socks and quickly I’m reminded that my life is not and never be what it used to be. It took me a while to grieve the loss of my former self, then even longer to realise that was what I was doing. Grieving.
And just like grief , no matter how much time helps heal you are never truly done grieving. I have lost loved ones over the years, people very special to me and I think about them every day. Now that years have passed, it doesn’t hurt as much anymore to remember them, to think about them and the beautiful memories I shared with them. Still though, I am sometimes caught off guard, I see my nana’s favourite sweets in the shop and go to pick them up and then it strikes you like a lightning bolt. My nana is not here anymore. That’s when it aches the most, when just for a tiny second you forget that loss.
It is a similar process with my condition, now that I have dealt with it for nearly 10 years it has become easier to accept my limitations, but every once in a while I long for what I had, I forget that I have limitations and as soon as I quickly remember the things I can’t do…That is when the lump hits your throat and your eyes water because all over again it’s that very real and raw pain, it’s the first time hearing the news, it’s the hurt and the confusion all once more and it’s heart-breaking.
It is a different kind of grief, it almost feels like a selfish one but it is there and I think most people with a chronic illness face it. We go through the stages Denial, Anger, Bargaining, Depression and Acceptance but it tends to be a never ending cycle just as our illness is.
All stages come in quick succession of the other, you deny your illness pushing yourself to your absolute limit and then you feel such anger when you struggle to keep up with the others or perform simple tasks. Next comes the bargaining, if I just got heather, exercised more, eat less crap, meditated more….but no matter what you do your illnesses won’t be gone. The realisation of that brings on the depression, the not feeling good enough, the feeling useless and helpless until finally and thankfully you make it full circle to acceptance again. Each time I go through the cycle, I make it quicker to acceptance and it lasts longer. Not to say I am happy with my illness but I’m fine with it. It is part of me now and for the most part I accept that. The same way that whilst I miss my grandmother with all my heart , I have come to terms with her loss.
When I think of my grandmother and how much I miss her, I also think of how happy I was to know her in the first place, to have been loved by her and have wonderful memories that no one can take away from me. When I think of my Rheumatoid Arthritis , I have to see some positive in it too. I have more than I have lost. My illness has changed me but it has not reduced me. It has made me more empathic to others, made me stronger, a fighter and most importantly it has shown me just how much my family and friends love me.
Sometimes I will grieve my old body, I will grieve the normal pain free life I could have had but for the most part I will be out there making the most of what I have got, which thinking about it, is more than enough.
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.
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.
From the age of a small child I had an aversion to buttons, not the delicious chocolaty ones but the ones that seemed to be on every type of clothing imaginable.
Don’t get me wrong, I think they are an amazing invention, from back in the day to allow people in and out of their clothes with ease and still covering all the essentials! However even as a child I hated them.
Now as an adult I can’t explain it except that perhaps I knew what was coming down the line, perhaps I had a premonition of sorts! You see, now buttons are not just aesthetically displeasing to me they are the bane of my life! The little ones, with the tiny open holes are the worst. If you have rheumatoid arthritis, especially in your hands I can only guess they have provoked a few angry grunts from at the very least.
Bending my fingers and trying to twist a tiny round item into a horizontal whole can seem impossible during a flare up. School shirts were the worst when I was first diagnosed. In fact, I got so sick of the struggle each morning I attempted to wear a white T-shirt under my school jumper instead. Sometimes I would get away with other times I wouldn’t. I was never quite brave enough to tell the teacher why I wasn’t wearing a shirt. The cold hard truth that dressing myself was too painful, was just too embarrassing for me. The ONLY people who knew just how bad things were back then were my parents and my amazing sister who would have to dress me practically every day for 6 months of my leaving cert year.
And it’s not just buttons, I am a fan of leggings! I know , ok they are often described as a sin against fashion but I love them! I don’t wear them instead of pants or anything but I wear them almost every day. Why you ask? Because trying to get jeans or tights on during a flare up or early in the morning is reserved for special occasions. Socks are enough of an ordeal on a regular basis.
My style consists of at least 90% dresses and leggings. I still like to look pretty but I march to the beat of my own drum and comfort is more important to me. Leggings are lose enough so getting them on doesn’t mean pulling them up step by step like tights or having zips or buttons to zip/close like jeans!
These are things you never even think of when you don’t have something like RA. You can’t understand why someone wouldn’t want to wear jeans or why they don’t wear makeup everyday even to work. And why would you, I certainly took these things for granted when I was healthy.
I have always liked make up, but recently I have feel in love with it. Partially due to having another blog that from time to time trials new beauty products. Whilst I love how much how confident I feel with a bit of a make up on, sometimes it’s just not worth it. I would rather go to work with no makeup on and be in top form to get some work done than have a full face on and be in agony because I exhorted myself. Same with my hair, some days it nice and straight and down and maybe even shiny…. then others times it’s up in a bun and to be perfectly honest probably uncombed.
Combs/brushes are on buttons side of this war. They don’t want us to look good, or even decent they must have meetings where they get together with toothpaste cartons and medicine caps and think of unique new ways to make our lives just that little bit harder.
Ok, I obviously don’t think my everyday items come to life when I’m sleeping and have epic battles and adventures (That’s just my teddies, Duh!) But there are just some everyday routine things that frustrate me and I’m guessing that goes for most people who have sort of a debilitating illness or disease.
So some days I am going to look like someone who belongs back in the 80’s with my leggings (and I am a sucker for bright clothes). I’ll have a naked face and a hair stuck in a bun. I might be wearing comfortable shoes and maybe even cosy sock in my boots…and I may not look very stylish at all…but I am way more confident in my comfort then if I was wearing Jeans, a blouse, my makeup perfect and my hair an image of perfection. Purely because I also won’t be red eyed and crying.
To me comfort is stylish, I will most likely never be a trend setter, I will never be the girl who always has her nails done, make up on and hair perfect but I’ll be comfy and when I am comfortable I am happy, fun to be around and laughing which personally I think is the most stylish accessory a girl(or a fella for that matter! ) can wear!
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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!
- “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.
- “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.
- ‘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.
- “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!
- “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!
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 email@example.com , I would love to hear from you!
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.
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!”
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.
‘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……………….
‘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.
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