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 .

Valentine's Day

Valentine's Day the day to buy cards and presents... but for me Valentine's Day represents something else. Each year all I want is to spend quality time with my other half most of my friends think I'm crazy when I say that I really and truly do not want a present.


All I want is time to be with my boyfriend because time is precious anybody with any kind of long term illness will tell you that quality time with a loved one whether it be your partner , family or friends is valuable. When you calculate all the time we've lost either because of fatigue or  illness it can really stack up and sometimes I feel like I'm missing valuable moments because there is no where I'd rather be than by his side but this is not always possible.


So each Valentine's Day myself and my boyfriend make a point of spending the day together doing something we both love for me is worth it's weight in gold. It gives me chance to feel "normal" to forget all my worries and become carefree for just one day. Valentine's Day is also a day when I let my boyfriend know how much I appreciate every little thing he does . All to often we take the little things our loved one's do for granted it becomes the norm and we forget to say a special thank you to those whom we are closest.


I know my boyfriend has had a sacrifice certain things because I am unable to do everything but he never complains about it in fact he is one in a million a true selfless person.He gives me so much without even knowing it.


Tonight I am going to go home and tell him how much I appreciate the little things and how much I truly love him because I am not the only one which this disease affects and too often it's something I forget.


When it all boils down to it Valentine's Day is not about material things it about spending quality time with a loved one and making the special person in your life feel one in a million.


Happy Valentine's Day
xxx


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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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