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.

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.

5 Things People Might Say When You Tell Them You Have Arthritis.

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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!

  1. “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.

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  1. “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.

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  1. ‘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.

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  1. “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!

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  1. “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!

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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 glorialouiseshannon2392@gmail.com , I would love to hear from you!

You Can Do This!

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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.

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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!”
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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.

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Telling The World

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‘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……………….