When nobody gets it

Last  week had been a really good week for me, when I say good I actually mean bloody brilliant, I was managing simple things that a few weeks ago I struggled to do,  tidying the house, hanging out the washing taking a walk along the beach with Kian to watch the aeroplanes landing, typical Scottish weather it didn't go to plan , my perfect picture for Instagram of sun sea and my little mini Dougie, was a huge fail it started off sunny and then snowing all at the same time , hiding in the cafe with a well deserved cuppa and a piece of Nutella cake, I finally felt  like I was getting my sparkle back no more negative grumpy Debbie downer Danielle.  I finally felt like I had found my positive pants and I was wearing them proud , going to the pacemaker clinic and finally feeling like everything was starting to turn from negative to positive no more bad news, yep my heart appeared to have got even more lazy and my heart function had decreased and I was relying on this little battery, ticking over more, but I felt blessed, I felt the best I had felt in a long time,I finally felt that one step closer to making it back to work, one step closer to achieving things I felt were impossible a few months back closer to just being like the old me ,and having that glimpse of feeling well and healthy was just amazing, I clearly had forgetting what being well felt like because it had been so long.

Getting up on Monday morning I woke up up with the worst cold, now the colds just the cold right ? Everyone gets it take all the cold remedies sweat it out in a bath, lie in bed drinking fluids etc but when your  heart is sensitive to nearly every single cold remedy out there it's just not as simple. Do u see were am going with this? If u have a shitty heart like me that's sensitive to nearly anything that makes your heart work faster including getting a bug, a virus an infection even just 'that cold' then you will know exactly what am about to say because you will know exactly what it's like, it's not "just the cold " when your heart doesn't work properly your heart and health take a huge hit.

I tried to ignore it I really did, I tried to not complain and moan about having the cold because let's get real it is just the cold and as much as I felt like I was dying I wasn't and it was "just the cold", carrying on my day as normal and with a hyper toddler who also had the full blown cold and was just as grumpy as me because he obviously felt just as shit as I did.

Oh god getting on with 'just the cold'  was hard, but thankfully kian you were amazing and had a 3 hour nap on Monday , I really thank you for this,giving mum some well deserved time to lie and sulk on the sofa with a hot water bottle and paracetamol  before we took a walk to the shops to get things for dinner.

Now if you've heard of the spoon theory by Christine Miserandino, Using spoons and having none left  not going to bore everyone to death with the whole spoonie theory but basically ,  I had been trying to be superwoman all week  getting on with it all, not lying down to it refusing to admit how bad I felt simply telling everyone I had 'a cold'  but by Thursday I was wiped out and feeling even worse than I had been, I had clearly exhausted and used all my spoons up and didn't have a spare spoon left,  Maybe I should of used my spoons more wisely and not pushed and got on with it like normal people do because I guess as much as I would love to just get a cold and get over it like everyone else does it's not as simple when you have a rubbish immune system and your heart doesn't function how it should, and that cold that I had not been  complaining about, well Saturday morning resulted in a trip to the out of hours because 'that cold' was pleurisy and my heart had started to struggle, the little horse had come out to play and galloped away making me sufferer even more than I had been.

But the frustrating part of it all I spent the whole week trying to explain to family and friends yes it's "just the cold," but the cold makes my already rubbish heart ten times worse, were none of them seemed to get it," just get on with it, it's just the cold,"or a favourite "stop being a drama queen  " now maybe I should of said to people how bad things actually were, but I don't because I rarely admit how bad things are poor Dougie did try to understand and he seen how hard it all was for me, as each day passed I didn't get better and couldn't just get on with it  like everyone else does as he came home on Thursday, he knew I now needed my bed, as much as he laughs and calls me a drama queen he sees how much it effects my heart he knows me better than I know myself and what had been "just a cold" I was now  feeling unwell with my heart. but I guess it is hard to fully understand  when you haven't been there and don't no what that  is like, being completely wiped out and unable to leave bed because your heart is working overtime so much it leaves you feeling even more unwell than you already did.

Again it created that  whole barrier of you look fine the whole invisible illness striking because you can't physically see the pain or how unwell I felt or how my damaged heart is taking a huge hit.

It made me realise I can try to ignore it not be so negative think of it like everyone else it's "just the cold," and the cruel words rephrase that ignorant words 'just get on with it' , I had been doing exactly that the chest pain and breathless I had struggled with the whole week I had ignored  it all thinking it's just my bad heart having a bad week, I had cancelled plans let friends down I did just carry on at my own slow pace, I didn't say to anyone moan or complain because the sad truth is like Dougie as much as everyone cares and  wants to help there's nothing anyone can do or say to stop my heart going haywire when I catch colds bugs and this time pleurisy  Whilst they do care telling them doesn't make them get it or understand.

Sometimes its better to keep silent than to tell others what you feel because it hurts badly when you come to know that they can hear but can not understand

You can't fully understand until you've been there yourself,
So the next time I say 'I just have a cold' don't question me don't tell me to get on with it I'm already doing exactly that ,just that I'm  not sharing and moaning about how bad things actually are because you wouldn't get it or understand what that is like and I know that must be hard.

                                                           Love and Hugs

                                                   
                                                           

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Dear younger me

Dear younger self

You think you know everything and what life is all about, at this time your imagining that when your 24 going onto 25 that you will still be doing they handstands and cartwheels you loved to do and by now you  would have a shelf full of  gold metals next to the ones you earned when you were younger all that training, hard work pushing yourself and your body further than it could go, to be able to do the splits without it hurting and watching the TV at the same time was a huge achievement, your coach always used to tell you the Chinese gymnasts you are so jealous of that you watch on TV are so good, because they push themselves to be better, so you pushed yourself harder you wanted to be just as good as them maybe even better, when you look back at your first video recording that your dad filmed  and the memory of the first ever  gold medal you were rewarded, you were rolling around dressed up as a cat that was just the beginning you came on so much , that roll soon turned to cartwheels and flips having the strength and power to walk the length of a pile of mats just using your hands, or that moment you finally managed to do the perfect bridge you would win hands down at the bleep test it was so easy while you watched everyone else struggle you weren't even trying you just had the stamina to keep going and win, you travelled the country competing against others, no pain no gain you were always told, falling off that slim beam and bursting your lip open as your balance was your biggest weakness and you did have to work on that aspect a little more than the rest, that one medal turned to a few and you dreamed of one day going far you would eat less and worry what you ate because you knew you had to be light and thin to be able to compete faster and better than all the others. You didn't have a care in the world except the fear of being fat, or falling off the beam

You imagine that you will be going on holiday topping up that tan you always had, you will have a good job making money, spending the weekends treating yourself to nice things, simply enjoying life with good friends, you dream of having that flashy car and you wish your life away thinking about when you grow up what things will be like.

Dear younger me.

I'm so sorry to tell you, this isn't the case,

You haven't done a cartwheel or handstand in years, not since You dislocated and had surgery on your knee you can barely balance on 2 feet let alone balance on two hands what you didn't know was it wasn't a talent you were hypermobile, that strength and power you had to carry around your whole body weight.. you don't even have the strength and power to walk up a flight of stairs anymore and that running you used to do without even a glimpse of a struggle.. that's long gone, its an achievement to make it to the bus stop without having to stop to catch your breath, that glowing tan faded when your heart became bad and the sun made your heart worse , most holidays are spent trying to lie in the sun with a good book desperate to get that glow back but then realising your failing miserably your body isn't like it used to be, so maybe the ghost look is something you just have to get used to ,you barely  go out with friends because the abundance of friends you had well, Most of them vanished when your heart broke and even more vanished when you became a mum You very rarely have the time let alone the energy to enjoy days and nights out with friends, You did get a good job but Your very rarely there and most days and months are spent at the doctors getting check ups and sick lines because your health just isn't how it used to be and you forever feel like the new girl trying to fit in,  even when You are well enough to work  your  to sick, or exhausted to have the luxury of treating yourself  to nice things unless it's by the Internet, and lets face it as much as the Internet is fab its not the same trying to find a dress, trying to picture what it really looks like through a screen

Dear younger me,

Things didn't turn out how You had hoped or dreamed they would in fact the complete opposite, you didn't  know at the age of 21 your life would be flipped upside down and you would battle everyday to feel normal, you didn't know back then when your  24 going on 25 that you would spent it being sick and in hospital getting a new pacemaker. You didn't know that you would see more doctors and specialists than you do friends,that they holidays you used to go on constantly are few and far between because you now have commitments, that you would have a heart problem and sit in the same hospital ward and clinic were you reflect  back to your younger self without that care in the world except to be thin now being fat is the least of your  concerns and do you know something?  you did gain weight because your active lifestyle of being a gymnast faded along with your younger healthier self.

Dear younger me,

You will be faced with challenges you didn't know existed, you will cry, feel fed up,lonely, grieve for your old life you will want to give up at times, life itself will feel impossible and who could blame you ? life  has been really hard for you, It will be tough, but your stronger than you think and you will get through it.

Dear younger me

I'm here to tell you, you might never do that handstand again or even walk up that flight of stairs ever again, but you have found new talents and ways to do things,you didn't know how easy it would be to teach yourself knitting by using a book and you wouldn't of discovered how fun it is and how much you could do if it wasn't for your heart being crap, mentally you are stronger and don't care that people might think your lazy for taking the lift rather than the stairs or the bus for one stop, they haven't experienced the pain and breathlessness you have, they friends you lost along the way were never really friends in the first place you just had to find that out the hard way you will be blessed with new friends ones who try to understand and are forever, who are always at the end of a phone no matter what , who go at your slow pace , it doesn't matter that you let them down from time to time, they know its not on purpose and there's always another day they know how frustrated and upset you are that sometimes your just not able, you will meet mum friends since you now  have the courage to go along to groups and classes alone something you would have never done before, if that bad day hadn't  happen were Kian just cried for what felt like hours for no reason you would have never just shoved him in the pram and  walked to that toddler group found that chair beside some mums all for that 5 Min's peace,  your days will be filled with cups of tea, laughter and the joys of watching your children grow up together and become friends You will get married and be blessed to have a husband who cares loves and looks after you who worships the ground you walk on, it doesn't matter that you might never be that slim beautiful wife because he loves you anyway and he knows how hard its all been because he's witnessed every single hard moment that was just as hard for him.

Dear younger self

I guess I'm just here to tell you life will take a turn for the unexpected, you will learn to smile to be happy to cherish every moment and the things you do have, to never take anything for granted, just to enjoy the present life your living now, stop dreaming and thinking what things could be like because you will miss whats right in front you, it's going to be okay even when sometimes it feels like it isn't life will knock you down on more than one occasion but it will always get better, that is just life.

Love

older and wiser me.

  

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To the nurse who restored my faith when I didn't have the strength.

                               

 You didn't really know me, you came through the ward door onto a night shift and all you knew was the basics that the nurse before had handed over, as you shouted up the large ward that had been full and busy with people all in for different reasons they had all been and gone there was just me and another 2 old ladies left.  At first you frightened me, with your high pitch loud voice shouting 'I don't know if your in pain you have to tell me' I buried my head into the pillow as you grabbed the blood pressure machine to check my blood pressure, I didn't speak to you I simply smiled, you seemed rude, scary, one of they horrible nurses that everyone hopes isn't looking after them, the sort of person I would avoid like the plaque and I wrongly judged a book by its cover.

You see I have spent a lot of time in hospital, meeting endless doctors, nurses receptionists the list goes on, but they treat you and look after you as a number on there list of patients,  I mean you can't ask for more can you ? their all doing there job rushed off there feet with small breaks in between, stressed exhausted, longing and counting down the hours for their shift to finish to get home to their own life.

Maybe it was your voice that made me judge you or your attitude I don't know, or the way you walked around, I was sore yet to scared to say anything to you as you muttered away to yourself making up the beds for the next day. I was to scared to be an inconvenience.

As I lay there, you knew I had just had my pacemaker removed and a new one implanted but what you didn't know was really how broken hearted I was, that I was missing my little boy who I had left behind on so many occasions with no choice, as he would wave goodbye to me it killed me inside that I was his mum and I wouldn't see him for a few days I felt like a failure, like I was letting him down, forever left wondering would I miss the first word he ever said, did he miss me at night ? Did he wonder why Mummy was always sad and not around much , that I cried myself to sleep every night I had been in hospital which had become my second home,  grieving and longing for the life I used to have, or the tears I shed after every soul destroying moment that I was told my heart couldn't be fixed but they would try again, but that try again was always just a try and that try kept turning into a fail, the jealously I felt just wanting to be like any other 25 year old, I would be reminded as my facebook feed filled up with pictures of my friends and work colleagues out enjoying themselves I felt forgetting about that invitation out with them turned to a quick text after a while that text turned to nothing, loneliness filled my  broken heart that I would forever be the one who is always too sick to do anything, my birthday was just 2 days before and instead of celebrating I was consumed with sadness knowing I would be spending it in hospital and spent the next day packing my hospital bag, you didn't know that I had been through what felt like hell and back again, that my heart was now damaged beyond repair, that I was the girl who if you held my hand or touched my shoulder you would feel how heavy the weight was, the anger sadness and frustrating eating away at ever last piece of me that didn't  already feel broken.

But what you didn't know was that how a random act of kindness made me feel that little bit better, you restored my faith during what was a really horrible time for me . As you seen me lying there you noticed my pillow and sheets was soaked and covered in the cleaning solution, mixed with dark spots of stained blood, my own blood were just a few hours before I had lay before being put to sleep praying and hoping I would wake up to the same pacemaker and that it wouldn't come to it being took out and I wouldn't be met with a new horrible scar and a new pacemaker all that hope had been shattered just a few hours before, I mean I owe my life to this little piece of machinery propelling my heart to beat so you could question was it such a big deal ? but it was it meant another couple of weeks of being pushed further back from were I had wanted to be .My long brown hair was stuck together and painted red, you helped me up to the chair striped the blood soaked bed as you muttered away some more and said 'everyone who's unwell needs a clean fresh bed', you were just doing your job but not only did you give me a fresh clean bed you guided me to the toilet  that was close yet felt so far away walking and standing was a challenge,  I was sore and tiered and didn't care how I looked but you sat me down and washed my hair despite how busy you were you didn't give me the option to lie down and sulk about it all, telling me how can you feel your best if you don't look it.You guided me back  found my pyjamas helped me out of the horrible hospital gown and tucked me into my clean fresh bed turning the lamp above my head on, and wished me good night.

I hadn't  had a good sleep for weeks before hand, everyday had been another long day spent worrying, undergoing tests hoping it wouldn't come to my pacemaker being removed so soon, and that just maybe this one more course of antibiotics would kill the infection that had struck and was  slowly taking over my tiered body and this whole nightmare would be over, or that before my pacemaker I would wake up during the night gasping for air struggling to breath because of  my heart pausing or beating too slow,or the times my husband would shake me violently to wake me up as I was  yet again having another nightmare were all the difficult times would flood back to me. I would be frightened even though I struggled and it was a fight to keep my tiered eyes open I would lie awake scared  in case my heart did pause and never unpause again forever wondering if I would make it through the next day the next hour without that faint happening just scared of the unknowing but that night I slept like a baby, all my fears were washed away like the blood and dye you had washed from my hair.

Maybe you seen through the fake smile as I had smiled as you took my blood pressure, maybe you had even been there yourself, but you took that few seconds to notice despite how busy you were. You did make me look that little bit better which made me feel a million times better . And that simple act of kindness of washing my hair tucking me in and wishing me good night made that horrible day and few weeks that little bit brighter and for that I am forever grateful and from the bottom of my broken heart thank you for restoring my faith and washing my hair when I didn't have the strength to wash it myself.

                                             

Yours sincerely

The girl with the broken heart




                                                             

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