Friday, 4 April 2014

My pink & sparkly story of medical nightmares...

Sorry for not being in touch sooner - I've had another small health nightmare, which you will find out more about as you read on! I orignially wrote this version of story for the amazing Lifeblood, but I thought it would fit in nicely here too! So here it is... 

My Story

Having been born ten weeks early and weighing only 2lbs 2oz, I’ve always considered myself lucky to be alive.

Growing up, I had no issues with my health – then suddenly in late 2007, aged 22, I noticed a problem with my breathing. I went to the doctors on several occasions, and was eventually diagnosed with asthma.

At that time, I was training to be a primary school teacher; but whether or not it was because I was poorly but didn’t yet realise, in early 2008 I decided that I couldn’t cope with the demands of the course, and instead left to concentrate my efforts on finding a full time job.

It wasn’t until March 2008, that I noticed my breathing was getting progressively worse. One night I was trampolining with my friend, and after jumping only a couple of times, I felt as though I was suffocating. I told my friend that I was fine, and that I just needed to rest - but as I sat beside the trampoline my chest felt as though it was about to explode, and I was close to passing out. A few sips of water and a couple of minutes later, I felt much better and was convinced into going on the trampoline, only for the same thing to happen again. I lay on the trampoline, and jokingly asked my friend to call an ambulance, although subconsciously I think I was actually deadly serious. My friend commented on my lips looking blue, but I brushed it off, saying that I was just cold. At the time I didn’t realise the severity of what had just happened.

Taken a week before being diagnosed.
Only a couple of days later, I got out of bed, and walked downstairs and started gasping for air. It felt as though an elephant was sitting on my chest, as I frantically searched for my asthma inhaler. The next I knew, I was coming round from passing out and my breathing had settled down. No one was home, and I had convinced myself that it was asthma that was causing the symptoms. I decided to lie on the sofa for the rest of the day, feeling sorry for myself but not at all worried by what had happened. Having had no previous experience of asthma, I told myself that it was probably just something that happens occasionally…

Over the weekend, my symptoms got increasingly severe. It got to the point that I was having to be carried upstairs, as even walking up a single step had me struggling for breath. Lifting my arm made me feel as though my heart was about to pop out of my chest. I was eventually convinced into going to see the out of hour’s doctor. The next I knew, I was on oxygen and an ambulance had been called. The doctor said she thought I was suffering a pulmonary embolism, but I had no idea what that meant. I burst into tears, terrified by the prospect of my first stay in hospital. I had no idea just how poorly I was.

Tests discovered that I had a massive pulmonary embolism in the pulmonary artery, and multiple smaller clots in both lungs. My heart had enlarged to five or six times the size it should have been, and was beating at 220 when it was first checked in the ambulance. I spent the next week in the Coronary Care Unit, on oxygen and attached to a heart monitor. Every time I tried to move it would set the alarms on the heart monitor off, because even the smallest movement caused my heart to beat over 200. Initially my parents were told to prepare for the worst, so I know that I’m extremely lucky to still be here!

I was put on warfarin, which I was told would be life long because of the extent of my clotting. I was also told that it would take me a very long time to recover, but that to me, meant a few weeks or perhaps a month at the most.

My tattoo of the date I got diagnosed - a celebration of the 'new me'.
Today, six years later, my body still hasn’t really recovered. In 2011, I suffered a massive retroperitoneal haemorrhage in which I lost six pints of blood. Initially the doctors thought that there was gynaecological reason for the haemorrhage, but after investigation, the only thing that they’ve been able to pin the bleed on is the fact that I was on warfarin. Please don’t let this scare you though! I have been told on several occasions that it is a very rare complication of warfarin, and that I was actually just very unlucky, (or you could say very lucky as I survived!) As the doctors couldn’t find that I had any predisposition to clotting, and they felt that my clots had been caused by the contraceptive pill, they decided to take me off of warfarin because of the risk of bleeding again.

Since the PE, I’ve had ongoing issues with inappropriate tachycardia, (heart rate over 100bpm). Despite the fact that the clots have dispersed apart from some residual scarring in my lungs, my heart continues to work really hard. My resting pulse can often be over 130bpm, and my heart rate rises inappropriately when I stand and walk. This makes life extremely difficult, as even the smallest tasks feel like a huge mountain to me. I’ve had endless investigations, and the doctors have found it find a reason as to why my heart is so fast, and neither can they find a medication that can control it. In 2012, after a tilt table test, the doctors diagnosed me with Postural Orthostatic Tachycardia Syndrome, or POTS for short. Simply, POTS is described as an abnormal increase in heart rate on becoming upright, among a myriad of other symptoms. There has always been a question about whether POTS is actually the cause of my heart rate symptoms, but for now, that’s the only thing that they have been able to attribute it to.

Then most recently, at the beginning of March 2014, I was diagnosed with multiple clots in my right lung. I am, of course, nowhere near as ill as I was last time - but the clots have still had a huge impact on my breathing, and that familiar feeling of having an elephant on my chest, is back. It’s come as a huge shock for everyone, especially my doctors, as they always felt that the only cause of my previous clots was the contraceptive pill, and now of course, I no longer take it!

Hospital - November 2013.
Since my PE’s in 2008, there have been many times that I have run to the doctor complaining of breathlessness and chest pain, but nothing has ever come of it. This time it seemed different - I saw the doctor on several occasions complaining of breathlessness and despite the fact that my vitals seemed ok, this didn’t reassure me and I was still determined that something wasn’t right. Eventually I had a d dimer blood test, which came back extremely elevated. Shortly after, a scan determined that I had indeed, suffered further PEs. The lesson I have learnt on this occasion, is that you should always trust your instincts – you know your body better than anyone!

So now the doctors & I have been left with two questions - the first being, why and how did this happen again? The second is to work out what the best long term treatment is, because of the bleed that I had. Currently I’m on blood thinning injections whilst I wait to see the haematologist, but there is speculation that the injections might be the better long term treatment for me. Right now it all feels so surreal, and I can’t quite believe that I’m in this situation again. But it highlights just how incredibly lucky I am to still be here to share my story, as my body has been through such a lot over the past six years. I’m counting my blessings, today and always.

Undoubtedly there are days where I feel sad, upset and angry; and others where it all seems so surreal and I can’t actually believe that these things have happened to me. Despite the fact that there have been some really dark days, and times where I don’t know if I can find the strength to get through it – I wouldn’t change any of it, it’s made me the person that I am today; a ‘new me’.

My experiences have taught me so many valuable and important lessons, all of which will stay with me for the rest of my life;
 ~ I appreciate those around me so much more, and love those close to me more than ever before. I know now who my ‘true’ friends are; those who have supported me, and have held my hand on every step of the way.  
 ~ I have been reminded just how lucky I am to have such an amazing & incredibly supportive husband - who takes care of me when I’m poorly, and who still fancies me even when I haven’t washed my hair for weeks! 
My gorgeous husband & I, on our wedding day.
·         ~ It has confirmed what I already knew - that I have the most incredible family, and that my Mum really is my best friend, and my rock!
·         ~ I have realised that I am stronger than I ever thought I could be, and I will never take life for granted ever again. I am proud of what I’ve managed to overcome, & will count every day as a blessing.
·           ~ I will always remember that even in the darkest times, there is always something to smile about, no matter how small it may be!  

I truly believe that there’s always a silver lining in everything that happens, and mine is that I’m able to share my story in the hope of raising awareness and preventing others from suffering a similar fate. Over the past six years I’ve had some of the darkest days of my life, but as a good friend once told me, “it’s always darkest before the dawn”. You’ve just got to take it one day at a time!   

Pink sparkly kisses & cupcake wishes x

Thursday, 27 February 2014

Only me!

Hope you've all had a gorgeous day?

It's really hard to know where to start in telling you my story. So much has happened over the past 6 years, yet in many ways it feels like time has stood still. Carl & I have just celebrated our fifth wedding anniversary, & all of our plans, dreams & wishes for the future that we had on our wedding day, are still on hold. I count my blessings everyday, that I have found a truly wonderful husband who is prepared to stay by my side, no matter what; but I'm forever feeling guilty for holding him back & for not being the wife that I had planned to be. It's true what they say, that "love conquers all."

Life today, has no comparison to what it was before I got poorly - apart from the beautiful people who have stuck by me throughout. I'm so incredibly lucky for surviving what I have been through, & there isn't a day go by when I don't say thank you to my guardian angel for looking after me. But, from the very moment that I open my eyes, life poses a challenge. Small tasks that I used to take for granted, are like climbing gigantic mountains on a daily basis!

Even waking up is a huge challenge in itself! People may see this as lazy, but my body is working so hard all of the time, even when doing the smallest of things - so I'm constantly exhausted. Imagine how tired you'd be if you ran everywhere - & that's how I always feel. Sitting up, standing, & walking a few steps; my heart works so hard. I'm always running on empty, with every step sucking the last little bit pf energy that I have left. Because of this I could easily sleep 12-14 hours a night, but obviously life & appointments, mean that isn't always possible!

The next challenge, is actually getting out of bed! Standing up after laying down all night, turns me into Bambi. My vision turns to black & my ears start ringing, as I hold on to my bed rail in the hope that it'll stop me from falling. It soon passes - but it's always there, waiting for the next time that I need to stand from sitting; it never ever leaves me alone. 

Usually just the simple act of getting out of bed is enough to make me want to get back in it! Showering is easier now I have a shower chair, but washing my hair is like proper work out - so you're truly privileged if my hair actually looks presentable when I see you! Getting dressed is a nightmare, resulting in me sounding like I've been smoking a million cigarettes a day. You know you're poorly, when pyjamas are your preferred choice of clothes, & a onesie is for special occasions!

There are days where the challenge of getting out of bed proves even greater than usual, & standing results in me collapsing in a sweaty heap on the floor. On those days, bed is the only safe place to be, as my body can't be trusted to keep me on my feet. My head feels like it is in a washing machine, & not even chocolate makes me feel better! Heartbroken that I can't join in with the real world.

When I feel like my body is against me, I try to focus on the little things in life that make me smile! Such as: 

  • One of my tablets is PINK! 
  • I can look silly in a pink leopard print onesie, because it's allowed when you're poorly. 
  • My hair is in better condition because sometimes I can't wash it for days. 
  • I get lots of sleep, which means I have more energy for seeing lovely people when I'm feeling better. 

I truly believe that there's always a silver lining, even when it's impossible to see anything but darkness. 

Feeling poorly all of the time can, undoubtedly, be super depressing & completely devastating - but it really does make you incredibly grateful for the times that you feel a little better, & are able to do more than usual. On the days when I manage to get dressed, put my make-up on, & am ready to face the world - that's an achievement in itself. "Big journeys begin with small steps".

Today, my body isn't a happy bunny, but things always seem a little brighter with pretty nails - especially as they match Millie, my pretty pink wheelchair friend, perfectly. Thank you so much to my lovely friend Corinne, for injecting a little sparkle into my day. It's the little things that make such a huge difference!

Wishing you all a lovely evening, full of hot chocolate & pink cupcakes x


Friday, 21 February 2014

Hey you!

Hello lovely people -
It's amazing to see you here!

If you'd asked me back in 2008 - I'd never in a million years, imagine that I'd soon be the owner of a pretty pink wheelchair called Millie. I was told that my recovery would be slow, but at the age of 22, I thought that meant I'd be back on my feet in a few weeks; a month at the most!

But here I am at nearly 29 years old, posting a picture of Millie & I for the world to see! Not only that; I have truly embraced my shower chair, I take advantage of my perching stool when making a cuppa, & I thank my bed rail on a daily basis, for preventing me from collapsing in a sweaty heap when I get up in the morning. Small things that make a huge difference to my life & allow me to retain some independence. A shame that society assumes you must be aged 80 & above to use such things!

These small tasks compare to climbing a mountain on a daily basis. From the moment I open my eyes, I am fighting against my body, begging it to behave! Just the simple act of getting up in the morning, is enough to make my body throw a wobbly. Getting dressed is a miracle in itself & you're truly privileged if I manage to wash my hair before seeing you!

But - I am so lucky & I count my blessings on a daily basis! Medically, it is probably a complete miracle that I survived my pulmonary embolism in 2008. On oxygen, surrounded by machines & millions of doctors, I was in complete denial - refusing to even contemplate what was happening to me. My parents were told to prepare for the worst - but here I am! Life can be a struggle, & particularly challenging at times - but I truly appreciate all that I have & am so lucky to have so many wonderful people in my life. It's thanks to one of my most favourite girlies that here I am writing this to you! It is so true what they say, that "only in the darkness, can you see the stars".

Wishing you all the loveliest weekend, full of pink & sparkle x