Thursday, 29 December 2016

My sweet little boy if only you could understand a kiss can't make everything better





The long list of words I mutter daily to my 2 year old is incredibly long.

'I can't it hurts
running away makes mummy very sad
No we can't go upstairs
Stop, Mummy can't keep up
No
Will you just behave
Don't run off mummy cant catch you if a car comes
I need you to slow down'

'Please slow down little one'

Since my little boy Kian started to walk the day of his first birthday he well and truly made his entrance in style he came strolling through swaying the unsteadiness in his legs a huge cheesy grin across his face, his first proper steps he was determined to run before he could walk I watched with such delight, a proud mummy moment, yet suddenly out my mouth came the words

'Please slow down'

From that day is speed of walking and running grow exactly like he did as a mum I watched and cherished these moments, everytime he ran with a huge smile on his face that brought an even bigger one to mine as he copies Mr Tumbles on the television touching his nose blinking three times jumping high in the air my heart bursts with so much pride,ever fall I kiss the graze on his knee better the tears stop flowing and he replies all gone, his arms and hands reach out to show me it's all gone.

'Please slow down' were the dreaded words I spoke a lot

From rushing up and downstairs, running along the street to the park, taking off like Wreck it Ralph in the supermarket his short but able legs  always full of energy, his mind always racing with mischief everywhere we go is always full steam ahead even to the toaster in the morning.

'Please slow down mummy can't keep up'

Having arthritis in my knee winter and the cold is a huge culprit at making my knee feel worse everything we done in the summer, the long walks to feed the ducks doesn't happen, going to toddler groups I sigh its shut as I secretly stand at the washing machine and cry for telling little white lies, everything on our to do list gets moved to the don't do list shoving him in the pram and walking slowly is now how the eventful shopping trip starts 'bad mummy' he shouts loudly the once happy face replaced with sadness the guilt hits hard eventually I give in.

'Please slow down' I would still shout trailing at the back passers by shaking their heads moving trolleys to avoid hitting him, physically I cant keep up he's faster than me I sobbed one night I can't do this I can't deal with strangers judging me staring because I let him run wild. He doesn't understand was a phrase I started to hear a lot he's just a baby having fun, learning I would bite my tongue longing for the day he did understand, longing for the day it would all get easier.





I'm still learning how to approach these moments of mummy 'can't', explain to him why ? how do I tell him that mummy has a bad knee and one day will need a new one, how do I go about telling him mummy has a pacemaker inside her chest ? do I let him feel it ? show him its different to help him understand, do I tell him mummy's a bit like a superhero with a magic battery ? make it sound fun, special, ? every superhero eventually needs a new knee. Yet how can I make out mummy's this amazing superhero yet she cant even walk up a flight of stairs properly let alone  pull out webs from her hands and climb up the side of tall buildings, how can I eventually tell him when the time right all batteries run out exactly like the phone he puts on charge to phone daddy at work does, expect its not as simple as plugging mummy into the wall, without him fearing it, without him asking too many questions giving answers that I never want to explain, machines can go wrong like the battery's which leaked in his favourite toy dinosaur, that caused him to cry for days when I told him it was broken and we needed to get a new one but yet its important, its important to me that he understands that mummy's not being bad, boring or grumpy she simply can't, so he learns god forbid something goes wrong he understands it will all be ok with a simple few clicks from a special computer at the hospital a superhero always springs back but even the greatest superheroes need a rest sometimes.


 'Everyone has a part of themselves they hide even from those they love the most'


Kissing his forehead goodnight I sat on the edge of his toy box bad mummy stuck on my brain, I will try little boy, really I will try, to stop being boring, grumpy, I will let you run around free, let you have fun, let you be curious, let you learn, forever I will keep this secret locked inside your eyes tightly shut to protect you from ever knowing that mummy's no superhero she couldn't be any further away from a superhero if she tried, mummy's more like Bambi on ice who most days can barely put one foot in front of the other.

I promise I will try and never say slow down again, I whispered to him that night because my sweet little boy you will always be quicker than me.

I admit I'm still adjusting to this accepting he's growing up, accepting it's always going to be a challenge, I'm still learning how to control the fear when he takes off and I can't keep up, god I'm even trying to stop caring what others think when I look like a mum who has no control over her son, I should of knew this day would come but I didn't in the whirlwind of the first year of being a new mum I didn't ever think that far ahead unfortunately there's no textbook with a how to guide on keeping up with toddlers when you have bad knees and a battery powered heart.






A few days later in an ironic but sad sort of way, waiting for his Nana to pick him up I explained mummy had to see the doctor with her sore knee grabbing his shoes he gave me a little wave his face full of delight and smiles for his afternoon full of adventures with someone who can run and jump, who can do everything he wishes mummy could do but can't, as he went to run off he stopped in his tracks smiled leaned down and kissed my knee all gone he said.

As he went out the door my heart ached for the wrong reason he did understand in the mind of a 2 year old a kiss makes everything better he had only learned what I had taught him a kiss made his knee better so it should make mummy's better too, its so true he doesn't understand that a kiss cant fix everything but my sweet little kian how I wish you didn't ever have to understand a kiss cant always fix everything but sometimes a kiss from the right person is sometimes all you need, I will always keep you believing kissing a sore knee really does make it all gone.

                                                                         
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Sunday, 18 December 2016

Two Simple tips for an Ist sufferer at Christmas






Christmas is full of joy and happiness from Christmas parties to Christmas markets,Santa's grotto With his cute little elves and reindeers, the cliche Christmas films that bombard the television, being aloud to eat and drink your body weight in chocolate and mulled wine, Christmas has a special meaning to us all.

Christmas is just round the corner, Its the one time of year to hang pretty stockings up on the fireplace, tie glittery tinsel around the tree, cook and have your home smelling of mince pies and cinnamon, its officially the most wonderful time of the year, you sit by the fireplace with a mulled wine in your hand, tucking into your pintrest picture gingerbread house as Christmas trees overpower social media, every Channel you flick through plays a Christmas movie, from love and mistletoe, to snow and magic, Kindness and goodwill, These movies show us what Christmas is all about but if you didn't already know, I'm sorry to be the one to tell you this isn't always the case.lets get real me and my husband definitely don't communicate with our hearts even after 5 years of marriage, I live in miserable cold Scotland but I've yet to see a white Christmas, nobody EVER in my street decorates with so many lights that you can see their house from space why ? Because movies aren't real life, they show us high unrealistic expectations about Christmas. Christmas is pretty stressful and overwhelming for the average person so for those living with Inappropriate Sinus Tachycardia or any chronic condition for that matter Christmas adds more stress and worry  to our already tachy hearts it pushes our bodies and our ability to cope to a completely different level.


Christmas to us is a bit like a coin, if we grab our party shoes and head to the Christmas parties, we sure will pay for it later and I'm not just taking a hangover in the morning or an empty purse, if we hit the busy shops for Christmas shopping, its like recovering from minor surgery, the heat from the fire makes you want to lie on the cold floor with your feet above your head or is that just me ? but on the other side of the coin, if we don't do all these things we end up feeling isolated, those closest to you struggle to understand that our fast hearts can't stand in long queues in a hot busy shop or the amount of alcohol and chocolate you 'should' consume since its Christmas sets our hearts off, if we don't make it out to the shops and give that perfect gift or join the secret Santa club a huge pat on the back for being a bah humbug.


Christmas can bring so much resentment and disappointment that our Christmas isn't quite turning out exctly the way we want it to, exactly like the way it does in movies, Christmas is more daunting than joyful trust me I know. Christmas to me is ultimately about family and laughter giving than receiving being thankful and grateful for everything I have, but since family is such an important thing to me at Christmas and  I'm not just talking giving superficial things like gifts, I want to spend it with all of them, give a large chunk of myself to sit round the breakfast and dinner table and unless I cut myself into 4 pieces its never going to happen The pass few years  have been spent dividing time between them all rushing back and forth trying to please everyone, Christmas didn't feel special it felt like a chore. This year I decided it was going to be different it wasn't going to feel like a chore because it shouldn't, instead I tried to do everything to make it magical for a 2 year old but I didn't drag my backside to the shops quite the opposite I had to drag my sorry ass' to the doctors followed by the hospital because I've now been stuck in bed suffering from dehydration and an infection with my heart going even more crazy, 'take it easy you don't want to be ill for Christmas' the doctor said  I did have to slow down, burning the candle at all ends trying to make Christmas perfect is stupid,health is more important than any Christmas dinner or gift.

Health is the greatest gift anyone could ask for, a gift that we can give ourselves if we allow the exceptions of what Christmas should be like to fall by the wayside, real life isn't a movie and you just need to remember that, I definitely had to remember that, so its brought me  to share, these 2 simple tips it might not cure our health but mentally I hope they help of course just don't forget to spread some Christmas cheer by singing loud for all to hear.

 Your not Nigella Lawson as much as you would like to be

In a ideal world we all want to be as perfect as Nigella Lawson in our tight red dress presenting the best Christmas dish, washed down with Christmas cup cocktails followed by Nutella cheesecake, My husband has a huge crush on her so the pressures on every year for me to be perfect Nigella but sadly that doesn't always work when you don't have the time strength or energy there's no harm in picking up a turkey from the supermarket or my good old favourite pick up the phone and order a Chinese. In my opinion you don't always need a Christmas dinner to complete Christmas when your surrounded by family and love.


Give from the heart, it doesn't cost a penny.

Gifts from the heart are often cherished more,give yourself in ways your able,spend quality time with those you love from the comfort of your own home, those who care will understand and those who don't, don't matter, Christmas is all about kindness isn't it? Even frame a beautiful picture that you know will earn a special place in someone's heart and home if you can't be there in person at least a happy memory will.

Most importantly no matter how your heart is feeling don't let it ruin your Christmas if you surround yourself with laughter and kindness its a sure way to take your mind off how fast its beating.

Happy Christmas when It comes  ! Xx








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Wednesday, 16 November 2016

Trust is like paper once its been crumpled it can't be perfect again







What's brought me to write this post is I need another operation, god even when I say that word I feel sick, my palms start to sweat, my heart races and I want to cry. As soon as she pulled the x rays up on the screen and asked me to look at them I knew what she was going to say before she even spoke.

The surgery I need is pretty minor, my wisdom tooth is impacted and stuck in my jaw bone so it's having to be surgically removed but my heart problems smacked me in the face, their concerned my heart will go crazy, it beats crazy fast all the time anyway so I guess it wasn't rocket science to figure out, that it's not going to behave during surgery, so I have been sent to another hospital miles from home but one were there's doctors who are able to give me medication to knock me out so I'm not aware of the surgery,You would think this oral surgeon would have gained my trust taking all these precautions.

She asked if I get anxious about going to the dentist, I didn't want to act like a big baby so I asked her if there was anyway it could be left, I told her my mind and body don't feel ready for another operation, but the damage has already started, because my wisdom tooth is impacted its starting to cause tooth decay and it's also starting to rot the healthy tooth next to it so not only does my wisdom tooth need to be surgically removed I will also have to go back to the dentist and get root canal treatment on the tooth next to it so leaving it wasn't an option.

As she pointed at the x-ray I was suddenly reminded of everything that went wrong with my heart, the nerve damage I live with everyday, my heart being damaged during my ablation, where my tooth is, its beside a huge nerve so there's a risk of permanent nerve damage. I find it so hard to trust medical professionals, I don't mean it in a bad sort of way, but I always believed they fixed things, made things better, I find it so difficult to let down my guard and trust everything will be ok, I guess my trust issues stem from everything with my heart.


 I do forget all the bad things that happened with my heart but its like my body remembers, it keeps it stuffed away until something triggers it. Whether it be a sound, something I see, a word or a person it awakens me to it all. Right now it's not even about needing an operation, or the pain after its everything that happened in the past, I've built up a wall, a huge defence mechanism to ensure trust isn't lost again but needing another operation I'm having to tear that wall down and its something that I'm finding incredibly difficult. truthfully I'm terrified something will go wrong.



Going through so much getting ablation after ablation that didn't work, it changes you, getting a pacemaker it changes you, each tablet changes you, everything that goes wrong it changes you, you lose hope but you start to loose so much trust, you feel like your constantly shoved on the end no matter how much you kick or scream, on the end were you have to put trust in people to fix you, to make you better, we constantly have to let down our guard, put our full trust in others and its scary.

When I got my pacemaker I wasn't crying because of the pain or the experience, I was in tears because I heard 'trust me he's a good cardiologist', I heard that from so many doctors, but yet he couldn't fix mine, he tried  3 times and eventually damaged it, a huge risk that was put out there but one you don't think will actually happen, so how can you trust when trusts already been broken.

Trust is something that can be hard for a lot of us, the other day my friend who's a nurse, ironically she works in a surgical ward she sees people get fixed, get better all the time, sick people put their trust in her everyday but the funny thing is she also needs surgery and over a cuppa she asked me how do I do it ? how do I trust everything will be ok ? how do I manage to put trust in others to look after you? it brought me to notice everyone has trust issues when it comes to our health, when it comes down to trusting doctors to fix you, make you better while you're in a vulnerable state its terrifying.

Trust is like paper once its been crumpled it can't be perfect again but if I've learned anything about having so many operations its just how strong we are as human beings, we DO put our trust in others despite how hard it all is, we dig deep and find the strength and courage within us because we have no choice our body needs this now but we know it wouldn't be forever, most importantly we have to surround ourselves with people who have gained our trust especially when trust is so hard to earn, when you surround yourself with the right people nothing can truly go wrong even when you fear it all will.

As my pre op to make sure am fit for surgery draws closer, (it's the start of December) I'm worrying the actual surgery will be before Christmas. I feel this huge chunk of happiness drain out of me Christmas is a time to celebrate and be close to loved ones and a lot of my Christmases have been spent being unwell or recovering from surgery, it was only last year I was stuck in bed with an infected pacemaker part of me thought I would be ok this Christmas, I would be able to enjoy it, I didn't think another operation would be on the cards, I'm devastated by it, there's always something else, always something wrong with my body, sometimes it feels like there's not a part of it that's right.





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Sunday, 13 November 2016

Depression doesn't happen to people like me !

 


People like me don't get depressed, depression doesn't affect people like me, I'm always smiling, happy, always the first to make a joke out of a bad situation, if you hand me lemons I'm the first to grab a large glass and make a gin and tonic full to the rim, I'm naturally an optimist.  

People like me are always 'good thanks' always lending a shoulder for someone else to cry on !



I remember the first time I opened up to a friend about how I felt  how I was diagnosed with anxiety and depression "how can you be depressed" stab right through the heart she didn't mean it in a nasty way she was asking a simple question she sat glaring waiting for a reply, I couldn't answer. I seem to have everything a husband who loves and cares for me a healthy little boy,who's smile brings so much joy, I have a house, a job I go on nice holidays, I'm surrounded by so many people who love and care about me what more could anyone want ? I GET IT totally. But I didn't have the one thing most people do have I didn't really have good health,my heart doesn't beat properly now it barely bests on its own at all it mentally that hurts.  

Money can buy a Ferrari right ? and you can have the luxury of crying in your flashy Ferrari but money doesn't bring you happiness  nor does it pay for someone to sit with you and take your hand in the car. As selfish as it may sound I have all these things ( not the Ferrari btw) but you get the picture was it acceptable to be sad, to my friend its like it wasn't, It's like because I had all these things my life wasn't bad enough to be depressing, The worst part was I felt  I wasn't as lucky as everyone else  I didn't  have my health to enjoy all the things I was blessed to have, things that do play a huge part in happiness.  

 

          ' I have this happy personality and a sad soul in one body. It feels weird sometimes' 

                         
    
  It was like a Pandora's box had been opened with so many different emotions and I didn't know to deal with them I didn't know to deal with sadness, it was an emotion I simply didn't understand. I felt like a burden to everyone around me I felt Like I was draining the life and happiness out of everyone exactly like my condition was doing to me, most days my heart didn't allow me to get up and go to work in the morning like everyone else did It didn't let me just be me, be a mum, I even thought at one stage life would be easier for everyone if I wasn't around if I packed a bag and ran away hopefully the sadness doll in my head wouldn't follow at the back I grow tiered of living in a body that's damaged and can't be repaired things I would normally carry in my stride I couldn't anymore, every setback every difficult moment,anything that went wrong it,tore another huge chunk out of  my sanity and it's like one day a light was switched off my able-bodied legs gave way from underneath me and  I fell into complete darkness alone.  

With depression I always imagined someone looking sad and miserable someone who lay in bed and cried  everyday, someone who if I handed the glass of  gin and tonic to, would just see the glass half empty, I basically imagined the doll sadness from the film inside out someone who's smart but yet pessimistic and negative all the time  that the best and only thing to do in life  is to lie around and cry over everything, That person wasn't me In fact I rarely cried it's like my tear ducts didn't work exactly like my heart didn't, I just felt numb, I didn't lie in bed crying everyday Instead I woke up in the morning just to go back to bed again at night it's like there wasn't any purpose to life.      

   When I was diagnosed with anxiety and depression, I couldn't accept it I didn't believe it, I felt sad but I used to think the sadness I felt was nothing compared to what depression feels like, if what I was feeling was even half of what  Depression feels  like it's such a horrible lonely place to be in but I wasn't depressed , I couldn't imagine what having Depression was like because it doesn't happen to people like me. Part of me even felt ashamed for feeling the way I did but I couldn't find the switch to turn the light back on I didn't even know were to start looking, it just sort of became a part of me, a part I didn't really like but I Just had to get along with anyway. I've had people close to me suffer from lots of different mental health issues, I didn't judge them, I just felt compassion towards them I would help them but I just couldn't see myself with depression, how could someone who normally sees all the positives in life  just see negatives it's like my rose-tinted glasses had fallen off.





My Nana always used to tell your minds a strong powerful thing and that you shouldn't judge someone else's mind because you never really know what's going on inside it the ironic thing was the first time I witnessed mental health it was with her, she had bipolar and a few years down the line she was diagnosed with dementia, that saying she always told me stuck, it made me compassionate to others who were going through things I didn't understand Especially mental health, you don't judge someones mind when you don't understand what's going on inside it.  

Yet here I was comparing the doll sadness from a film linking her to what people depression look and act like. I was so wrong to do that, it took a doctor telling me my sadness was depression she saluted me for holding it together for as long as I did, like I deserved a badge of honour, a badge I felt I didn't deserve to wear, because I still didn't believe my sadness was depression. It took that for me to recognise depression has so many different faces and forms, mental health can affect anyone it doesn't matter if your fat or thin, rich or poor, it doesn't care if your male or female nothing matters,it is what it is, it strikes without warning and takes over your life, You can't help the way you feel, you can't just snap out of being sad, there's not a happy pill that you can take which instantly lifts your mood so your happy, It takes going to hell first, lying in hells bottomless pit to eventually reach the white cloud up in heaven.  

Admitting it wasn't easy nothing is easy about accepting you have a mental health problem nothing was easy about going further down the rabbit hole taking tablets that make you feel worse before they made you feel better but yet admitting it and accepting it was like a release button had been pressed  it finally made me let go, I wasn't dealing with it alone now it was out in the open accepting depression eventually brought true peace because I seeked helped and was open and honest about how I felt. Sharing all my emotions online with strangers took courage, I feared being judged,  because there's so much stigma surrounding mental health.I feared people I know reading because I didn't want people to pity me, that was the furthest thing I wanted,when I felt like I had  lost my voice and I couldn't speak writing was my greatest comfort because truthfully I didn't know how to cope  with the feeling of sadness, it was an emotion that I simply didn't understand why it had effected me the way it did an emotion that I wanted rid of, I wanted my own joy doll to come running with open arms and save me from the sadness that had invaded my head.

  As much as I've hesitated over this post, because people will judge it's inevitable but if people like me don't open up about the reality of mental health the stigma surrounding it will always be the same. One voice is like a small drop in the ocean but all together it creates a huge wave speaking up about depressing has the Power and the ability to change what people think and see.

I always thought  it wouldn't affect me, people like me don't get depressed,  till it did. Life's likes a bottle the bottle eventually becomes full the lid explodes and sometimes you just need help to start filling it back up again, it's ok to ask for help,it's ok not to be ok, it's ok for nobody to understand because you don't understand what's going on in your head either. Keeping it hidden on the inside feels like the safest place for it to stay but actually there's nothing safe about it you just end up feeling like your drowning in sorrow while everyone else is breathing around you.


                                                                  
 
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Monday, 31 October 2016

Forget Drugs face the Chilli Pepper patch,( How i ended up feeling on fire)




Whenever I told anyone, I'm getting Chilli Pepper patches  to  help my nerve pain you can imagine the weird looks I was met with, I mean Chilli Pepper to help nerve pain. ? but yep you heard it right, lyrically chilli pepper, it wasn't a case of standing in the hospital while the doctor crushed up chilli from the local supermarket, It came prepared in a small patch (a very hot patch)

Back in March when my infected pacemaker was removed I've suffered from pain, my cardiologist refered me to see a pain specialist and spoke with a plastic surgeon who both diagnosed the pain I was experiencing as nerve damage, Since then I've been placed on a variety of medication and painkillers to help combat the pain, the huge problem was these drugs are ok to take now, but being young and wanting more children in the future, that kind of threw a spanner in the works. All the medication I'm on isn't safe to take during pregnancy, I also didn't want to be on painkillers long term.

A few months back I happened to stumble upon the program 'the doctor who gave up drugs' were the doctor in the program Chris van Tulleken  stopped patients from talking painkillers and instead tried other methods, part of me felt this huge weight of worry, I was scared that was the route the pain specialist was going to go down, scared of the unknowing, scared of suffering pain and nobody helping me, I could see the pain in the girls eyes in the program knowing exactly how she feels, knowing that must be torture.

As I swallow Tramadol, Macklemore's new song 'Drug dealer' plays in my head  I sing this song at the top of my lungs as I'm hanging up the washing, it's one of they songs that its tune struck a chord but suddenly a horrible feeling hits my stomach , because as much as I like this song he paints a picture of drug abusers but blurs out people like me who have chronic pain people like me who don't want to take pain medication but have no choice, the pains to much,  one of the tablets I'm on Gabapentin isn't just one tablet a day it's split up into taking 3 a day and the side effects are nasty, one day as I woke up, for a split second It felt like I was falling, as though the bed I was lying on had disappeared from underneath me or another night, As I woke Dougie in the middle of the night, I told him something was wrong with my body, because the numbness and tingling was horrible, the left side of my body was completely numb, its like my arm and leg weren't attached,  the tingling hits me as I sit in the car as I try everything to bring the feeling back to my body, but without them I cannot function, the pain hits me hard, it  takes my breath away and I end up crying real snottery tears. When I first met the pain specialist he told me sometimes nerve pain gets better as time goes on,but most of the time it didn't and it was most likely I was going to have this pain for the rest of my life, that was hard to swallow, it took a while for it sink in, he did go down the route I thought he might like Chris the doctor in the program, but instead he mentioned  Chilli pepper patches and figured it was worth a try, I didn't have anything to loose, he warned me it was painful and if it didn't work we would cross that path when it came to it, I could still take tablets if need be until the time comes when I want another baby.

Now I understand your probably reading this and thinking how can Chilli Pepper get rid of nerve pain So I thought I would explain it all here.

The patches contain the active ingredient Capsaicin which is the natural substance found in red chili peppers which gives them their heat. Capsaicin works by desensitising the sensory receptors found at the end of nerves. When activated by painful stimuli they send nerve signals to the spinal cord and brain that results in the perception of pain, but when capsacin binds to these pain receptors it initially causes a painful burning sensation, but with continued use of capsaicin the pain receptors become overloaded and eventually they desensitise which makes them less responsive to painful stimulation this is what relieves the nerve pain. (http://www.netdoctor.co.uk/medicines/aches-and-pains/a8755/qutenza-patches-capsaicin/)

So I had my first patch placed last Thursday, the patch was placed by a nurse and was to be left in place for an hour, an hours nothing right so I kept telling myself , but it was the longest hour of my life, when she asked if I wanted a cuppa  or would I like to go for a wander and come back in an hour,(sooner if I feel the pains to much) which  straight away I didn't like the sound of but I figured how sore and hot could one patch be, I mean one small patch would be nothing right, a walk in the park compared to 3 ablations, when it was first placed it didn't feel like anything. Dougie knowing me better than I know myself said we will go for a walk,  which I'm so glad we did,slowly I felt the skin under the patch get hotter and hotter until it was burning hot, red and itchy, We walked round the charity shops beside the hospital which took my mind off how much it felt like my skin was on fire, as Dougie pointed out nice dresses, something he never does but I think my facial expression said it all as I was stupidly waving my jacket like a fan over my chest trying to cool it with the cold air.  I think if I had sat drinking tea it would of been a completely different story, this is the reason I drag Dougie to appointments like this for that purpose  because without him, I would of been crying even more snottery tears and the patch wouldn't have lasted half an hour let alone an hour  As we returned back to the hospital the nurse looked at me and said how was it ? your still smiling anyway so it can't be that bad there's still another 10 Min's to go, 10 minutes which I sat on the end of the bed biting my tongue for as she explained to Dougie what the patch does.



Its still early days to know if they've been successful or not at helping my nerve pain it takes 2 weeks to feel the full effects but fingers and toes crossed it works, the pain's still there although not as bad and the stingy pain that random hits hasn't so  its defiantly doing something, if they do work I will have to brave it all again in 12 weeks. It's amazing that there's so much out there that can help pain not just drugs that you don't hear or even know about, I mean I hadn't ever heard of chilli patches.

If you have nerve pain don't let my experience of the pain put you off, its like having really bad sunburn for 2 days and then it disappears, as much as It hurt I'm definitely going to give it another shot, so if your like  me and have nerve damage and pain, ask about  chilli pepper patches there worth a go, a pain specialist who specialises in  nerve pain is the person to get in touch with who can assess and guide you.




                                                           

                                                                    
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Sunday, 16 October 2016

Just because others can't see it doesn't mean it's not there





As humans  we all seek understanding and empathy to our problems and the obstacles we face. Seeing is believing and when there's nothing to see it's inevitable that most of the time we don't get the understanding we desperately need or want . In the world we live in, people judge us for not meeting what their vision of pain and illness is, our struggles and obstacles no matter how big or small  feel invalid because of how subtle they are. Although it shouldn't matter wither people can see them or not,because there still there even if they can't be seen but for some reason it does matter. We feel  we need people to understand about our pain and illness because it's a part of who we are.


When you suffer from chronic pain  it means a lot of  things change and a lot of the changes that happen are invisible, you feel invisible, it's like your  living behind an invisible window isolated from everyone and everything outside of it,  the pain you feel is unique and personal, it cannot be seen or measured, there's no textbook or magic wand to make it better, consider yourself part of a secret  group one you wished you didn't have to find or join, there's the people in the group who get it and then, there's the ones who don't. the ones who dismiss you as being over dramatic ,lazy even making a mountain out a molehill, it's hard to explain what it's like and it's even harder to imagine especially If you've never experienced it before, even people who have experienced  pain in the passed have a hard time remembering, unless there unlucky enough to experience it again.


Having nerve damage in my chest its painful, it's there everyday but nobody can see the pain its hidden underneath the clothing, clothing that's a challenge to figure out, because as cheesy as it sounds a wardrobe full of clothes but nothing to wear always comes to mind because  straps, buttons even wearing a certain bra exacerbates the pain more, others cannot see that dragging yourself out of bed in the morning, is a challenge because every movement hurts, others don't see that sleep is so hard to come by because the pain haunts you,  you feel like you've  been buried in quicksand and there's nobody there to save you, there's no escape.



when you suffer from chronic pain you don't want others to feel it or be in your shoes, you don't want them to imagine what it's all like, you just want people to acknowledge and recognise the difficulties you have, you just want to feel valid as a person with those obstacles and difficulties regardless of what is seen and what isn't.

 
So here I was sitting in the chair at the hospital waiting to see the pain specialist for a follow up wondering what she would say about my chest pain, the fact that things were improving but now it just feels like I'm  taking 1 step forward and 5 back.  Would I be hung for not taking my medication how I should or for taking more than I should just to keep things under control would I be shot for not giving the lidocaine patches a chance to numb my chest and work, it kind of feels like your in trouble for not improving.


Instead she did something I wasn't prepared for when I explained my pain was the still the same, the pain still wakes me up during the night with a pitiful smile she listened and let me carry on talking  when I explained how I hate taking all this medication. Because I hate  feeling out of control, I sleep but I don't feel like I've slept in days,  I feel dead to the world yet I'm alive and awake, the room sways slowly from side to side even though I'm standing completely still,  she told me we would go ahead with using chili pepper patches to try and desensitise the nerves, I said ok not knowing what else there's left to try if they don't work.


What came after I wasn't prepared for, She stopped writing and  handed me the information booklet about the patches. as she spoke I felt this huge weight of worry suddenly lift.


" It's unfair all this happened when it probably didn't happen to anyone else that day, I know it can't be easy being young and having a pacemaker, sort time off work, sort someone to look after the baby, sort someone to be there for you,  have a read and call me when your ready there's no rush just as long as your happy"


Instantly I felt my defence walls crumble, it felt like it had been years since someone did something as simple as  recognising I'm a person who is in pain, recognised I'm a mum and a wife who had responsibility's, a young girl that beneath the clothing and smile still felt vulnerable, god she even acknowledge that having a pacemaker at 25 isn't easy it's completely life changing.


When you live in a society were hardly anyone has empathy and understanding to what they don't physically see validation and  recognition doesn't happen often, not only did she validate me and my feelings, she recognised all the obstacles and difficulties that were there , it was like she read every thought that was running through my brain, it's like she was saying she could see them, she could feel how heavy the weight was, she even reminded me I was important I needed look after too, my body was important it needed time to heal.


It took everything in me not to cry like an idiot it was like suddenly I remembered  I am in pain, I do have permanent nerve damage, I am young to have a pacemaker, I'm not dramatic, or lazy  I have feelings and my feelings were important, My happiness was important.
In that small 5 minutes she reminded me I'm only human, we're all vulnerable , we all have unique circumstances outwith what we came to the hospital for, it's ok if the rest of the world can't see or understand them  because she did.


She was just doing her job she helps me manage my pain, but she put my feelings of happiness before anything  she  wouldn't realise how much her words touched me that day, for once I felt my feelings and problems were valid I actually felt happy about the situation  because she understood living life like this isn't easy.



                                                                  

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Sunday, 4 September 2016

A small moment to remember your so much more






Mum guilt we all feel it, it seems to come along brutally as part of motherhood, a phrase that before I had my little boy I would roll my eyes at but it's very much real and next to impossible to get rid of.

Becoming a mum  life becomes a huge jigsaw puzzle trying to slot the pieces back together, trying to place everything back exactly were it was but with a child in tow and when you have a chronic condition that throws obstacles and difficulties  from every angle and makes that puzzle even harder. Since I had my little boy Kian a huge piece that I had wanted to place for so long was going back to work.


Now I realise how selfish that sounds, I would rather work than be with him, but here's the thing, kian's the most important thing in my life but that didn't mean  he had to be the only important thing.


I had so many opportunities to say screw it, my hearts knackered, life's so unfair,every opportunity to give up, my health set me back constantly all that ever came out of trying to work again was that white piece of paper ticked unfit for work and in the passed going back to work didn't last long because my health would just go straight downhill and it became harder each time to go back, the anxiety of another setback became unbearable , but the tears that flowed every time I left the doctors were painful because the truth is work was a huge part of my life before I got sick and an even bigger part of my life before I became a mum, I was also stuck with, how could I set a good example to Kian if I let my problems win, the only example it sets instead is how easy it is to give up, things that are important aren't worth fighting for, and working is such an important factor to me.

Going back to work when Kian was 18 months old felt like the last piece, after months of setbacks , I finally felt like my life was complete again, I'm far from supernanny but I had work and looking after a toddler going smoothly and my health being the best its ever been since my heart problems started my jigsaw puzzle was complete.....Except being selfish wasn't anywhere to be seen in that complete jigsaw puzzle.



The thing is returning back to work only made me even more less selfish,  Your forced to work have the house tidy, dinner on the table putting everyone and everything before yourself, you ask how everyone else's day has been but nobody ever bothers to ask how your crap day has went.
Even when your unwell as a mum, what does mum do when she's sick, or should I say what doesn't she do ? of course she doesn't put herself first, being a mum its like your automatically programed not to be selfish all the time.



The sad thing is, I realised I had lost my inner self, I was too busy focusing on getting my health back. so I could work, to busy trying to balance motherhood and work To busy trying to do the mum role perfectly that I  got so lost with trying to be a good mum that I wasn't a good wife or friend I wasn't a good me.



When my husband said to me one Friday night  as I reached for the tea cup instead of the wine glass that I was so boring, I actually felt this huge weight of sadness wash over me, I felt sad and guilty that I had lost the fun bubbly me, the person who was the first and  last to leave a party now turned down every invite to instead sit with knitting needles and a cuppa, but the thing was deep down I knew she was still there, underneath the yogurt stained T-Shirt, the weeks unwashed hair pinned back, the handbag full of dummies and toy cars she was, the same girl who still dances stupidly around the living room to Steps still done that at most opportunities.



All mums do feel guilt but having an illness that guilt is amplified ten times more and being a working mum that guilt is amplified hundred times more so when you have an illness and go to work that guilt eats you alive.




You feel guilty for being a shouty mum, guilty for being unwell, , guilty for hiding your head in the fridge to eat, guilty for wishing you could go back to work and have a hot cuppa and some adult chat, but the thing is now I feel guilty that I'm not a stay at home mum, you always find something no matter how big or small it is to feel guilty about.

'I need a break', were the words I held back for so long, I feared being judged. Working mums get a break, we get the best of both worlds right? , but that couldn't be more further from the truth.



As a working mum, it's no fun leaving them for most of the day, its no fun coming home and seeing them peacefully asleep knowing you missed a whole day of their precious little life's, others hearing words and seeing precious milestones and moments. It's also no fun the tears you shed  when you walk out the door, you spent most of your day clock watching, as the saying goes a watched kettle never boils, that's how your day is, But here's the thing going to work isn't a personal break, your not going to work for some time out, and when you finish you don't actually clock off, you've just finished one thing that's expected of you, and coming home you've used ever single ounce of energy that's left  that you become that shouty tiered mum who's no fun and then you feel guilty for making work be an important part in your life.

When I say those words 'I need a break' it didn't mean I wanted to put my feet up, or go out for a drink, It didn't mean I wanted to kick back with Netflix and the Game of Thrones box set,  it didn't mean I wanted to step back from my responsibility's , it means I wanted to take a moment to feel human again, In days and weeks that are all mould  into one, putting everything before yourself you just want a moment to be selfish, when your burning the candle at all ends, trying to do everything ,you just become exhausted from trying to do everything right except you feel like your doing none of the jobs perfectly.



When I do 'get a break' I don't use it for fun, I don't use it to even hit the gym or go shopping, I don't need a break to unwind, have a party being me on my own instead I find myself lying in a quiet room or I go for a bath but the thing is I sit with my own thoughts were I switch off for a few seconds, without something being expected or wanted from me.



I do the one thing that I need to do, to work and keep up with the never ending needs of  my beautiful Kian, two important things in my life, being a stay at home mum would be easier, I wouldn't risk setbacks, I wouldn't worry constantly if my hearts going to play up, I wouldn't live in fear of having sick days and I wouldn't have so much guilt for leaving him to go to work but that would be giving up a huge part of me that makes me who I am, I worked before being a mum and I worked long before I got sick and I'm more than just a mum,  my breaks allow me to recharge those battery's that are on energy saving mode a lot because of my heart.

I put absolutely all the fuel  I have stored in the tank  into being a good mum and working from the minute I opened my eyes in the morning till I close them at night there isn't a single second I'm alone with my own thoughts, Where I'm not been needed and were demands are expected of me, not at work, in the shower, or even in the toilet.



When I say 'I need a break' it's because sometimes you just need a moment to be yourself, to remember who you are, a moment to stop and catch a breath to make a choice for yourself, we need a moment to feel like we still exist as a person, who doesn't just go by the name mum. Because you can't love others when you don't love yourself and to love yourself you sometimes just need a moment to remember who you are.


                                                               
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