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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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 

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.

Click here to find the Young Arthritis Network on Facebook