My Rheumy

This week, I had my visit to the Rheumy for my routine check up as the days approached I began to think of how far I’ve come. 

In the overall scheme of things I’ve done more than I ever thought was possible. Each day I push myself to be the best that I can be. Don’t get me wrong there are certainly times when I throw a total diva strop about having to do those evil injections & about arthritis in general but for the most part my mission is to live life to the full.

So as the appointment date get’s closer I begin to evaluate the past few months. I always write a list of questions that I would like to ask & like most people I glance at the calendar to see how I’ve been feeling.

In my mind I built a big picture of how fantastic I feel &  I’ve even managed to erase the bad days from my mind. Looking at the evidence in front me I had no option but to face up to reality I’ve my fair share of bad days. My mission - to go into my Rheumy with three little words "I’m doing great" but unfortunately that won’t be today.

“We must rediscover the distinction between hope and expectation.”
~Ivan Illich

Heading to the appointment I build myself up I’m not sure what I'm expecting but after my appointment I feel deflated.  In my mind I went thinking as I always do with that expectation that my Rheumy has all the answers including the one whereby I receive the magic potion where I’m free from arthritis. 

No matter how many time’s I’ve seen my rheumy over the years I still leave disappointment and please don’t get me wrong my rheumy is fantastic he’s given me a new lease of life but I always leave feeling deflated.

I ask myself why I fell like this? Is it because for many years I was told I would grow out of JA ?Do I expect too much?Or maybe I forget my rheumy is not god he doesn’t have all the answers or at least the one I’m looking for the big C – Cure .

Am I alone in feeling like this ???

Spinning the airwaves

It’s been a crazy couple of weeks but crazy in a wonderful way. Last week myself & Ann Marie Brennan got to head down to Spin 103.8 Dublin’s trendy radio station. We got a fantastic opportunity to hit the airwaves and create some awareness of our invisible disease Rheumatoid Arthritis.

A mixture of excitement and nerves on our way to the studio. I’ve done a few media interviews but Spin 103.8 is the station that many of my friends listen to so the pressure was on. I know many of my friends listen in at work so I was feeling a little nervous.

We arrived into the studio to meet Jonathan & Claire on their daily talk show “The Spin”.  We spoke into what can be described as the microphone from the Band Aid video and before we knew it time had flown by and we had finished our interview. If you missed us on the show last week don't worry here's your chance to listen .See below :)

After the interview someone asked me why I do interviews? The answer took me by surprise you see to me it obvious . I’ve lived with a disease that while people heard of Arthritis they know very little about it or the impact that it has on the lives of the many young people. For many years I felt alone that I was the only young person to have arthritis and if I wasn’t the only one where are these so called “young people” their not in the clinic when I see my Rheumy , their not at my physio sessions so where are they?? In fact do they exist?? 14 years after my diagnosis I met the first person my age with arthritis  so why do I do this because I never want any young person to feel alone ever again. I want each and every person who’s diagnosed to know the Young Arthritis Network exists & they are not alone .

Little things make a difference

Am I living the life I want ? If im honest I feel like I’m missing out on living the life of an average 20 something .. So I’ve asked myself why am I not ? Is it the illness or is it me?? The answer it’s a mixture of both.

What’s stopping me ?? I’m tired sometimes when I’m in pain I lose the get up & go which if left it becomes a routine. I’ve had arthritis for so long sometimes I naively think I know it all in relation to my own health but I fall into the trap of “ I CAN’T” so I decided enough is enough.

Anyone who is “stuck“ in a routine whether they have arthritis or not will become tired & bored so I’ve ditched my old lifestyle & begun changing things that I can’t do.

I’ve become interested in positive psychology & how this can benefit someone with a chronic illness. I’ve surrounded myself around positive people and I’ve really noticed a HUGE change I even notice a difference in how I analyze things. Is something really impossible? Why is it impossible? What can I do to get to where I want to go ? So now my end result to quote a very famous builder             “ Can we do it? Yes we can”

So to bring this into perspective how can this affect my life & my health?! I’ve looked at a few area’s which on a daily basis affect me….

I CAN’T do this because ….

Problem A:

I can’t do the shopping because it’s so heavy & Im tired …..then when I get home I’m simply exhausted so I call the local take away.

So Monday I went shopping & over came my fear of grocery shopping. I struggle to do the weekly shop so usually I pick up a few bits on my way from work because I can’t get carry the bags or lift the basket. So I got a trolley which I filled up with loads of fresh fruit, veg ,& fish. After I checked it out I also overcame the second obstacle & asked one of the shop assistants would they help me bring it to the car which was no problem at all.

Ohhh I felt some level of achievement by Friday I had cooked a healthy meal each evening.  I also picked up a few healthy snacks because I knew I had a busy week ahead so I avoided snacking or becoming over hungry and calling for a take away. By Tuesday I had soooo much more energy but I also knew that Wednesday I wouldn’t be home until 8 so I make a super yummy curry for the following day .

Problem B:

I CAN’T do exercise it hurts my body… well I haven’t the time by the time I get home I’m so tired and then it costs a fortune to join the gym. So join a class ? Well em I’m too afraid to go to an exercise class because of my limitations.

Enough is enough this excuse is rubbish even if I do say so myself…. Let’s get to reality here I’m never going to be a gym freak it’s soooo not for me but I can get fit & healthy which is what I wanna do.

I’m tired well duh of course you are who wouldn’t feel tired when your lazing about on the couch watching tv- my arthritis has nothing to do with this.

So what can I do to change this? Split up the exercise into mini sections I’ve split walking into two parts 3km to work in the morning & 3km on the way back.

I really wanna do yoga class but I don’t think I’m strong enough just yet so I asked my physiotherapist to help me out she suggests I buy an exercise ball to help build up my muscles etc….So off I went to buy an exercise ball. 

Guess what before dinner is prep’d or while it’s cooking I’ve managed to do 30 min of exercises each day for the past two weeks it’s helped I’ve done it all before soaps start & I’ve blasted a few tunes out to keep the motivation going.

I’ve also got the Young Arthritis Walking group on the go so I’ll have more motivation to get going. I’ve  even signed up for Joints in Motion & the Mini marathon so nothings stopping me now because I'm doing it for myself.

Next week I plan on going swimming initially I would like to go once a week. So I’ve arranged a swimming buddie so I'll have more motivation to actually go.

By making both of these changes it’s made such a difference to my life over the past two weeks. I have sooooooooo much more energy in fact for the first time in a very long time I feel ALIVE in the sense I could do anything.  I’ve noticed I’m in less pain now I’ve still got pain but I have noticed a reduction.

So with all this energy I was able to spend more time living the life of an average 20 something year old. 

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A Girl’s Best Friend….

Yep yep you've guessed it high heels are indeed a girls best friend.

I’m tiny coming in at just under 5 ft so heels should be really be my best friend but it fact the are my worst enemy. Well actually I tell a lie we have a love hate relationship.

Let’s talk about the love …..

I am a shoe queen there is no doubt about it …I can’t walk down Grafton street without stopping in Fitzpatrick’s , BT or Aldo for just a “quick peek”  which usually involves spending about an hour going ohhh  ahhh  and planning how I am going to spend my next pay packet. My collection as I like to call it holds every type of shoe imaginable. I often spend my lunch time in work looking at fashion websites looking for shoes.

Now for the other side of my obsession …

As you may be aware I have arthritis in pretty much every joint so this poses three problems

1. Heels make my joints ache not just the little joints in my feet but my hips & my back ... Heck let's be honest here it can even take a toll on my neck.
2. My feet range from a size 3 ½ on a good day to 5 ½ on a bad day. Lately I can’t fit my feet into my pretty little shoes. It’s  beginning to bug me because I must keep several types, styles and sizes with me as I never know what size my feet will be.
3. Pumps, ballet , flat shoes etc…  while they are flat shoes they also pose a problem as my feet are too swollen so I can’t fit into them.

When I’m out and about I usually resort to a good old comfy pair of runners…. Yep runners while they are comfy and spacious let’s face it they are far from attractive and quite simply they look awful with skinny jeans and dresses(Let’s not even go down that road).

I’ve now reached the stage whereby I plan my outfit around my shoes depending on how my feet feel which in itself is annoying because I can’t wear what I want  and then when the swelling subsides the shoes are too big for me.

Now back to the love hate relationship ….

I had a little bit of luck recently I found a gorgeous pair of wedge heels actually I fell in love with them having spotted them on the fashionable Lisa who told me they were ever so comfy so off I went to purchase them and I haven’t looked back since. In fact I was away last weekend and received several compliments on my latest purchase. It’s amazing the confidence a pair of heels can.

I love to buy shoes but it hasn’t registered with my brain that I can no longer wear fashionable shoes in fact I think my boyfriends sister has worn most of heels more times than I have.  

I wish someone would design a fashionable range of shoes I’m sure most people whether they have arthritis or not would fork out a few extra quid for a comfy yet stylish shoes. So calling all shoe designers please please please design FASHIONABLE shoes that won’t cripple my feet.

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Let's Dance with Arthritis

Saturday saw the kick off of the ‘Let’s Dance’ workshops. Well I have to say I wasn’t disappointed. Upon arrival we had a chance to mingle over tea and coffee which was a great ice breaker. Our instructor Brian Redmond is a 3 times “All Ireland” ballroom champion, “All Ireland” show dance champion and he was also an “All Ireland” youth Latin American champion. He definitely understands the needs of dancers but I was worried he might not understand the needs of a person living with arthritis…. How wrong was I? From the second I arrived in the ballroom I was put totally at ease.

The class itself was designed specifically for people with arthritis and Brian himself was trained in arthritis management by a physiotherapist. He also told us that his dad has arthritis. I think both of these aspects really played a part in his understanding of movement and arthritis and definitely came to bear on how this class was designed. Some of the steps were even redesigned so that they are comfortable for a person with arthritis to do.

Brian taught us two styles of dance – Salsa and the Waltz. The salsa which is my personal favourite was fabulous! I left the class with the steps playing over and over in my head. I was surprised how quick and easy it was to pick up too. Brian breaks the dance down into the basic steps making it easy for anyone to learn. Once the music started playing, the class really got moving around the dance floor. The class was without doubt the right style and pace for people with arthritis.

Finally the class finished with the waltz. I was worried about this one given the traditional ‘hold’ puts a lot of pressure on the upper body. I need not have been worried however as the first step we were taught was an adjusted hold which is a lot lower, thereby reducing the pressure any one of the joints.

Before I knew it the class was over. So what was the highlight? The fact that I learnt to dance while exercising and I didn’t realize it – Now that’s what I call a genius idea!! In the cold winter months I think this will definitely be my preferred method of keeping these joints moving!

The ‘Let’s Dance’ workshops continue throughout the country. For more information, clickhere 

Laughter the best medicine ???

Yesterday started off as just your average day I’m still feeling a little under the weather so I was having a lazy morning . Made myself a cuppa and I went back to bed to catch up on  the latest episodes  of Grey’s Anatomy and Desperate Housewives. Not long after I was tucked up in bed I received a text from a friend to see if I wanted to go for a bite to eat.

We met at one for lunch at Michie Sushi which was the perfect way to start the afternoon the food was fab afterwards we strolled over to a local cafe for some hot chocolate and a chance to have a a bit of a catch up. Pondering what to do for the rest of the day we decided to go to Dundrum shopping center for some ice skating. A quick visit to pennys for some extra socks to keep my feet warm we were ready to skate.

 As a child I loved to Rollerblade I had no fear I would zoom down the hill without a second thought so naturally I love to ice skate.For that one hour I thought I was a child again & I managed not to fall or more to point avoid the children who whizzed around with no fear until the fell but within seconds jumped back up.

After the hour I was tired and cold but for that one hour I put that thought to the back to my mind and concentrated on having fun. Afterwards we went to Hamleys toy store and stopped at the new Xbox Kinect which I enjoyed a bit too much and we finished the day off with Dublin’s best chips Burdocks Yum.....

This morning I’m paying the price for my eventful day but you know what ...? It was sooooo worth it ... I had a ball in fact I had the most fun I’ve had in ages....it was a day filled with laughter & fun. Laughter really can be the best medicine!

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The pain freeze

The silence of the night makes the past hour feel longer I'm alone in my apartment in the middle of a flare up I feel awful and alone. Its late to late to call anyone I’m trying to distract myself from the intense pain I feel in both legs.

My journey home from work is a short fifteen minute walk but today it took 35 min. It started off with a struggle on my crutches trying to  reach the nearest bus stop approx 750m away, today it took me twenty five minutes to get there by the time I reached the bus stop I was exhausted. When I reached home I thought I was going to pass out with the pain so I collapsed on the couch unable to move.  Luckily my boyfriend was on hand and made dinner before he carried me into bed where I have been   since 7pm unable to move.

Today was my first day back at work after three days sick leave to say I was embarrassed is an understatement my colleagues never saw me use a crutch before as my legs are very rarely a problem . Work were great everyone offered to help me even though for most of the day I was stubborn I didn't wanna ask for help.By 3.30 I was exhausted and didn't have any energy it was the little things I found hard going to the printer and making myself a cuppa thankfully they all knew I have an addiction to tea and I was supplied with several cups.

I woke an hour ago by pain rushing though my body depriving my body of much needed sleep my knees and ankles are warm, sore &  inflamed easily twice the size they were a few hours ago.  My legs feel like cement, I can’t move them, it’s impossible.Usually I curl into the comforting fetal position to sleep I cant tonight in fact I cant do much I feel useless.

So now I’m wide awake I can’t move just a few hours ago I was able to move a few steps without my crutches so foolishly I left them in the sitting room. I’m thirsty and in need of a glass of water so I try to move using all my energy I try to get out of bed but the pain is horrific and so I lie in silence waiting for the morning to come minutes seem like hours. My body is shattered but pain will not allow me drift asleep its impossible to get comfortable each time I move it hurt’s.

Its times like this I find the having arthritis a nightmare which myself and many other young people must endure . I feel angry that I can’t do a thing I try to stay positive but the longer I'm awake the more positivity dwindles into despair and I enter into battle with my body while it battles with me . It wears me down and down as my body get increasingly tired I begin to drift into a restless sleep but minutes later I am woken by pain once again .

I know I will make it though the night but right now it doesn't feel like it will. Knowing I have work in the morning I desperately want to get some sleep as I know tiredness will only add to my problems . I took my weekly dose of methrexate yesterday all ready my mouth is covered in mouth ulcers my tongue is swollen I must easily have ten.

I’ve never felt so alone while many of friends went out tonight I had to stay at home because I can’t move let alone walk. My friends are gone to a gig, something I used to enjoy.  I too had planned to go but having arthritis means sometimes things don’t work out.  I need to think and plan and re plan. Tonight was no question of that being impossible.  On a regular night out when I walk into a bar the first thing I look for is not a drink but a seat . Anyone who knows me will tell you that I love music and most of all to dance but for the past while I haven’t had the energy to dance. I feel like I’ve lost something within me,  a little sparkle that comes out when I dance.  Today I am 24 trapped in a  94 year old body.

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