It’s not over, until I say it’s over!

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‘Happiness is being at peace with what is. It is trusting that your past was, your present is, and your future will be.’

When I woke up this morning it was almost 5am. Naturally I turned to my left and lying right beside me was…him. He stretched his arm towards the alarm and immediately dismissed it. He then turned to the right and kissed me on the head.

Time for work baby, You go back to sleep’.

I pulled the duvet up to my chin and watched as he pulled on his jumper and high visibility jacket. Next he checked for his lunch money and packed all his possessions into his rucksack. Then I smiled as I knew the next part was the best, (and worst) part of my day. He gave me a massive cuddle and I clung to him, as I always do.

‘Don’t go, I don’t want you to leave’

I have to go, but I will text you when I get to work’.

With that he silently leaves, and I listen out for the click of the lock… – he’s gone.

That is my typical morning. My beautiful, normal week day morning. Everyday in which I wake in this manner, I am already thankful for the day. No matter how I feel, or how much I achieve that day, I have woken up at 5am, with my fella and with so much love.

I think that this is the point really. Life isn’t one big marching band of excitement. Life isn’t waking up to a champagne lifestyle or to the highest paid job, with a huge “social status”. It’s about the little things, the ‘auto-pilot’ things people take for granted, it’s about being at peace with what you have, and most importantly who you are.

As always, I have had my fair share of IV medication this year and it has taken its toll. I completed a whole two week course of home IVs, only to then catch a chest infection and be an inpatient again a few days later. Then 3 weeks later I need IVs again. The last stint happened to be 1 month prior to a two week holiday we had booked to Kos, a wonderful Greek Island. Understandably I was panicked. As you can imagine I had already been through the ringer, and I felt like Robin Deakin going back for more (sorry mate ha). My weight had not recovered at all since the last set of IVs, so I was swimming in dangerous waters. Unfortunately, my SATS were under 90 so I had to go ahead with treatment. Same old shit, different week as terms of care. I had to go through A & E, then spend a night on MAU then I was transferred to the respiratory ward. I had to put up with a cannula, until they could find a single soul to fit my portacath. 48 hours in, and I had to refuse continuing medication until my portacath was accessed. I was not prepared to have another cannula. Especially with the strength and regularity of my medications. When access was gained I was away! I always refuse to buy tv in hospital for the first 3-4 days because I am too ill to concentrate on it, therefore, 4 walls become my entertainment… let the boredom begin.

4 days in and the whole respiratory ward had come down with Nora Virus. A self centred visitor came in infected and it spread like wild fire. I was in segregated facilities as always, which means I am isolated from every other patient. That made no baring on my catching the bugger! I was sick and in the bathroom more than I was out. Then came phase 2 – Dehydration. Bags of fluid on permanently and holding absolutely nothing in in terms of food. Well, although I was concerned about my Holiday, I had much bigger issues. My weight plummeted to a measly 5 stone 13. And then came Nasal Gastro feeds. Most CF’s have these, but not me! I am a giant wimp. Well after trying to shove that ridiculous tube down my nose and back my throat, my body was having none of it. I kept rejecting it. Now it was time for some serious hard work. I had 10 days left until I had to board my flight, 10 days to get some food down me to just be able to fly.

So I ate. And for everybody who thinks this is easy… you are very wrong!! My day went like this:

Wake up to a cooked breakfast or large sandwiches, plus calorie shot supplement and calorie yogurt supplement.

Mid morning – calorie yogurt supplement with brazil and peanuts.

Lunch time – cooked meal with calorie shot supplement and dessert.

Mid Afternoon – Angel Delight with full fat cream, milk and calorie supplement added.

Dinner Time – Cooked meal, calorie shot supplement and dessert.

Supper – Brazil nuts, peanuts and cereal bar.

This all had to be consumed after eating virtually nothing for 7 weeks. I looked pregnant all the time and the pain was excruciating. There were so many tears, but I never gave up, the holiday was in my sights. Baths were painful as all my bones dug into the bottom, but showers are a no, as fainting is so easy from weakness. I walked the stairs to gain strength. I forced myself out to get exercise. My man took me for meals and to McDonalds as much as I could stand. And nobody would put doubt in my mind that I could not do it. I ended up with an acute pneumothorax and another horrible batch of lung bleed. This happened days before my flight, but I was determined. Not to mention I had liver functions which were so abnormal, my hospital were going to pull the plug on my holiday, the weekend before. No way though, I was going – and I think they were very sympathetic to my situation, and an inactive, poolside holiday was agreed (with good travel insurance, of course).

The day arrived and I woke up feeling like I’d be run over with a steam roller. I felt horrendous, but I was overwhelmed with happiness. I pulled it out of the bag. With extreme hard work and dedication, not just from me, my whole family. I went on holiday for two weeks with over 50 co-codomol tablets and packets of paracetamol. I can assure you, not a single one returned. The medications I was taking could have knocked out a small horse, which meant alcohol was almost off limits (besides a few cheeky cocktails), but whatever the circumstances I had the best two weeks of my life. We had beautiful weather and went to beautiful places. We even hired a buggy and toured the Island. We went up into the mountains of Zia, and watched the sunset from a roof top Taverna. We even went on a boat trip to Turkey, and spent the day shopping and enjoying the sun. We enjoyed beautiful food, met some wonderful people and I even played table tennis & boules! It was the perfect medication and the most beautiful resort.

(In case, you perhaps fancy a trip to the Greek Island Kos, our hotel was ‘Hotel Platanista’ it is a 4* plus. It came under the Thomson Platinum selection and is a splendid choice.)

None of the holiday would have been possible without the patience and dedication of my man. He understood I couldn’t run around and therefore nothing was too much trouble. When I couldn’t get a drink, he brought one to me, When I could no longer walk, he carried me, and he dished out all of my medications, did all the shop runs, and even gave me his extra pillow! He is the most supportive and wonderful human being I have ever met. And I truly believe, the happiness he has given me has reflected in my health.

I have learned this year, that to be happy it is about being at peace with what is and like I have suggested, who you are. I will probably never finish my degree, or become a Teacher like I always planned. I probably will never have children, or go Travelling. I will never climb Everest or run the London Marathon, but does that make my life less happy than others? I may have moved in a different direction to what I once planned, but I am beyond happy. I am surrounded by love, my head is full of plans and excitement. My life is not what I expected, but I am glad. I am not sure if I believe in fate, but I suppose what is meant to be, will be. I am now almost 11 weeks IV free, and touch wood, this will continue as long as possible. I have gained a stone in 11 weeks, but not without hard work!

It is never over, until you say it’s over!

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Bound By A Curse

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Never deserved

Never of choice

She was locked in a Tower

No power, no voice

All she had was a window

A view from above

She had dreams she had wings

So she could fly like a dove

She could hear all the laughter

Watch other people grow

But she was bound to a bed

With no place to go

All her life she’s been waiting

On a magical cure

A handsome delivery

A knock at her door

What would it be like?

A life like the rest

To wear a beautiful crown

Or an elegant dress

To dance the night away

No worries or cares

To feel the warmth of the sun

The tickle of fresh air

Though circumstance has bound her

For the room kept her life

A foot out the door

Would cut her like a knife

Begging and pleading

Tears burning her face

No amount of sadness

Would let it be erased

One day whilst in sleep

A noise made her wake

Someone was stood there

The vision made her shake

Covered in jewels and beauty, oh so fair

She had wings of an Angel

Diamonds stroked her hair

She held out a vial

A pink potion within

She said – ‘Just one sip’

Would take away the sin

So the young girl she took it

And drank it with glee

A million demons left her

Her lungs they could breathe

Her once mousy hair

Spun into ringlets of gold

Her once threadbare clothing

A dress graceful and bold

Her small feet, now covered

With slippers of glass

Her once sullen heartbeat

Strong, beating fast

She thanked this dear stranger

As she pulled at the door

And entered the outside

Lonesome no more

She joined her new world

A smile on her face

An equal, so normal

A part of the human race

Weeks flew right by

She shared true loves first kiss

She went to the Ball

Her life – It was bliss!

But, soon she had noticed

Something was not right

Her hair became tangled

Her breathing became tight

She returned barely living

To the only place she knew

The Tower and the Bedroom

The place she once grew

Her breathing it stabled

In her bed she lay

She turned on her side

And slept there for days

When she finally awoke

She summoned the beautiful stranger

Why aren’t I cured

By your wonderful elixir?

Dear girl, It will give you time

Away from this life

But it won’t cure you, sweet darling

For an everlasting cure, has a price!

No money, no cure… Donations for the CF Trust are needed. Help us from the fate… None of us deserve.

http://www.cftrust.org.uk

Meet me in St Elsewhere

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For Joshua

Listen to my words

For I have to say

This is my declaration

A promise I’ve made

On the darkest days

At any lonely hour

There’s a secret only we know

An unbreakable power

With our heads pressed together

In small whisper, I voiced

Where I would end up

If I no longer have a choice

Where white doves take flight

Only elegance and grace

Where warmth from the sun rays

Stroke the angles of my face

No harm can become me

No place for hurt to hide

All pain is removed

All the sorrow left my eyes

Meet me in St Elsewhere

Where the birds always sing

Where peace is a promise

And I’ll gain my wings

When I hold your hand

For the last time alive

Don’t fret for a second

For there’s a place we’ll revive

When the sun is the brightest

When the moon glows at night

It’s my message to you

For I’ve no paper to write

I love you, I miss you

Every single day

But I’ll be waiting right here

Until we meet again

Who helps, when you can’t help Yourself?

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Moving swiftly into October, and today is the first day the cold has really been felt. I rushed to grab my jumper and leggings today, which hasn’t been a regular occurrence, I can assure you! I am usually slobbing around the house in my pyjama shorts (!)

I can’t believe I have been home from Magaluf for over a month. It was an incredible holiday with so much sun. I didn’t suffer too much with my CF which was really what I was most afraid of. I have been struggling with Aspergillus for some time now, obviously alongside the Mycobacterium. I found the sun really helped my lungs if anything. I have suffered with a horrendous amount of irritation on the upper lobes of my lungs, and it really has been such a strain on my everyday life. I am guessing I am not the only CF sufferer to encounter irritation, but with it being untreated (or not effectively treated), I am literally unable to walk up the stairs some days. I cough and cough until I am sick. I was given Prednisolone Steroid medication for 8 weeks when I went to The Royal Brompton, however, the medication made me feel so unwell and poorly, I am not entirely sure it was worth the effort. As soon as I came off of the medication the irritation came back and 8 weeks of my life I had to put up with moon face and so much water retention underneath my skin. I gained all this weight, which seemed like a good thing at the time, but it soon dropped off when the water weight had disappeared. I was then left untreated due to acute liver failure, which was no doubt caused by previous strength inadequacies on prior Intra-venous medication (which I will touch on a little later).

Furthermore, I have just come off a set of Intra venous medication about 10 days ago. It has to be one of the worst admissions I have experienced in my local Hospital (and I have had some bad experiences). I am not the sort of person to hold back on my beliefs, but I am really not the sort of person to lose patience with people I believe are trying to help me. However, it is not an irregular occurrence for the people who are ‘supposedly’ trying to help me, to display nothing but a shower of almost complete incompetence. When I set foot in The Royal Cornwall Hospital I feel just like the Suzanne Collin’s character Katniss Everdeen. Not only do I feel as though I have to shoot the hearts out of every Doctor in the Respiratory sector, and am completely alone in my fight for survival; but I am also f*cking starving. It really is ‘The Hunger Games’. 

I was put on a trio of antibiotics again, which isn’t unusual when I am experiencing fevers. I was put on my usual suspects: Amikacin, Caspofungin and the infamous Tigecycline. Yes as per usual I was quickly immersed into the joys of sickness where I was given Apprepitant and an eight hourly dose of Cyclizine. Not only did this make me feel like a rat’s ass, but some clever Doctor managed to keep me on all of my oral antibiotic medications too. Yet again, if it wasn’t for my droning on about the in-appropriation of being on oral antibiotic and IV I probably would have spent the whole two weeks on too many drugs. Then the Doc’s would be scratching the arse’s trying to work out why I had yet more acute liver failure. Whilst in, I was adamant I would give over sputum samples for testing. For me this is a huge deal as my productivity isn’t huge (which is very unusual considering the infections I carry). I managed my samples and I was so very adamant I would definitely receive these results, if it was the only thing I would achieve during a two weeks admission. I asked everyday and the same old bullsh*t answers were given to me. ‘No Zowie, the results have not come up yet’, or ‘We will take a look for you’, and they never come back. Then there was a Doctor’s minion who came in and told me I was still growing positive for Mycobacterium Abcessus (some major damn surprise there-not!) Aspergillus (Again not a surprise to me) and Pseudomonas… WAIT?!!? WHAT??! So I lose my mind. I am pissed because I also have gained another bacterial infection, but I am also doubly pissed because they knew and just do not pass on the information. I hate how I have to ask and ask until somebody tells me what an earth I am growing inside of my lungs. I had Doctor’s changing my antiemetics without my consent – causing me more problems. I just despise how Doctor’s haven’t the time to read my notes before hand to realise that the majority of well known antiemetics do absolutely nothing at aiding my sickness, or better still – coming in to talk to me!!

Back to The Hunger Games; I came in at 7 stone 3 and left two weeks later at 6 stone 7. This is not just due to sickness as they would have you to believe. This is due to the absolute shit they serve and even have the cheek to call it food. Not only is the food disgusting, but it is also given in rations. 1 scoop of pasta and an ice-cream pot. Seriously? For people like me with a shot pancreas, no enzymes and probably receiving half the calories I put inside my body, what an earth is that going to achieve? And then I have the dietician’s worrying about the weight loss trying to load me up with calorie enhancing drinks and milkshakes. How about, feed me a proper damn meal and then we will see how much weight I lose. I feel sorry for the older patients with memory problems, or those unable to speak up for themselves, because the food is horrendous and at least I have my legs to walk to the W H Smith’s situated in the Hospital and buy myself a measly sandwich. Who are standing up for these people?

I could go on. And through all the misery and million complaints I could make, will there ever be change? No. And for someone like me who is in here every 2 months minimum, it really isn’t good enough. I just get told to move to the nearest CF Centre, which is Exeter or Bristol. They are having a complete laugh. I can’t afford to drive there for every admission. Nor will I be able to see family or friends for weeks on end. I can’t afford to go there for clinics. I am already part of The Royal Brompton and Herefield and for a month or so stay, it costs an absolute fortune. What bugs me more than anything is that I do not claim Mobility either – morally. I have never claimed this benefit because growing up I never needed it. Now that I am entitled to it and very much need it, will my local Hospital help me claim this? No. Every single time I have asked for Doctor’s notes or help with form filling, it never gets followed through in time and it is like taking blood from a stone. I am on long term sick – forever more unable to be employed and basic carer rate benefits just do not help me in the slightest. Why do I struggle so much?

Honestly, I wish things were different in areas such as Cornwall. We are a largely populated County with Older people who are sick and therefore, the Hospital is full to the brim. The Hospital can’t afford to look after patients, such as myself who have life limiting illnesses and are needing the funds of the Hospital to survive. Living in Cornwall has it’s perks, but it very much has it’s weaknesses too. I pray for a cure for Cystic Fibrosis but I have no hopes in it being funded in the South West.

Life is a Roller-coaster, but you haven’t got to ride it

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It’s that time again! Summer is almost over! It is over 3 months post my many week stay at The Royal Brompton, and I have been doing very well regarding the Mycobacterium Abscessus. I have to admit I haven’t (fingers crossed) had a single fever since my admission. I have however, had IV medication – but that was completely my own call… as I am going to Magaluf. 

I think it is true what they say – healthy mind, healthy body and recently with all things considered, my mind has been reasonably healthy. I owe much of this to my friends. Over the few weeks, I have spent time meeting people and having some of the best times of my life. I can honestly say I am happy, something I could have never envisioned a few months previously.

I have finally been met my past head on, quite recently actually. It made me realise that there are people in life who are worth forgetting…

When I had to finish University things were not easy for me. Having lost so much weight and lung function, plus my boyfriend of the moment – I was looking for something new. I was looking for somebody to save me and that is what I had found. I found the person who saved me, and changed me and helped me grow. I found the person who I believed I would spend my life with. I found the person who I felt grateful for, somebody I thought I knew. I am thankful for all the things this person has given me; over a course of two years of my life, I owe him so much. I was lucky to meet someone who repaired the broken me in such a beautiful way; but like everything in life nothing is perfect. In life it takes the true flaws of a person to finally let go. I divulged into my past and now I have finally let go. So… what I am trying to say is Thank you for helping me forget what I had been through; and finally thank you for helping me to forget you. 

My life has been one big fair ground for the past 3 years. I have been up and down like the Big Dipper. I have been spun by my illness, (until I’m sick) like the Waltzer. I have been shut in the dark like a Ghost train. However, my favourite ride was always the Ferris wheel. I felt safe here, it was reliable and fun. And here I have been stuck for a couple of years, going round and round, never moving forward. I have finally been let off and retrieved my candyfloss; life is finally sweet and I have left the fair ground for good! And there is no looking back. My past is closed and I am ready to move on with my illness, and with my trust in people. As far as I’m concerned the past is Chernobyl and it is only toxic to return.

I am truly loving my life, for the first time and I have really flourished. I am handling nights out, I am handling drinking and I am really excited to be going on a girls holiday to Magaluf in 4 days. I am proud to be letting go and even more proud to look back and see how far I’ve come, under all my circumstances. I finally welcome the future.

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3 years of hell – What life can do

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Two months home, and two months IV free so far. Although I am proud (and it’s given me the break I’ve needed) being free has its limitations. Being free allows reflection, and the ability to re-live things you chose to forget.

When you’re busy getting doped up on drugs or being thrown head first into a situation, which is out of your control, you adapt. There’s something in our bodies which says fight. Now that the storm is settling in my life, its time to start cleaning up the debris. Much of this can only be done by reliving, and accepting what has happened to me.

Most of my issues started a long time ago. I suffered with an eating disorder. Many years of denial followed this; I truly believed there was nothing wrong with me. I had counselling, I had been shouted at, threatened with nasal gastro feeds, but nothing worked. It was a numbers obsession. As long as I stay below 7 stone, I will be fine’. I counted every calorie I ate. My diet consisted of Diet Coke, Apples and Angel Delight. I would spend my day avoiding food and eventually I hated food, because my life revolved around it. I was buying Diet Pills online and doing silly exercise regimes to burn the food up I was eating. It was complete madness. It took me to become very ill before I realised what I had done. I never once had to look in the mirror to know my state. The look on my families faces was enough. I left for University in 2011, in a very physically vulnerable state due to the lack of eating. I never in a million years thought I would return in the mess I did.

I went to University in 2011 and returned that same year. When I came home I honestly don’t remember much even now. All I kept thinking when I was lying in Hospital was ‘This is it’. I thought I was going to die, I have never been so terrified in all my life. My Mum was on holiday and I remember lying there thinking ‘I’m going to die, I’m not going to see my Mum’. I had a flare up with Mycobacterium Abscessus on a very large scale, mixed with Pneumonia. I can’t possibly describe the weakness it bestows upon a person with CF, but it is something I have never felt. I lost my muscles from being inactive and I lost a horrendous amount of weight. I lost everything at this point, I just didn’t know it yet!

I knew whilst I was at University I was out of my depth. I was so ill I couldn’t walk to my lessons from the Campus Accommodation. There was one lecture in particular which was horrendously embarrassing for me (although I can laugh now). It took me 20 minutes to walk a 3 minute walk, and I got to the lecture and could not breathe. I sat down and the room started spinning (Oh fuck) I was going to be sick! I projectile vomited everywhere, in front of everyone. I got up sick down my front, ran to the nearest bathroom and continued to be sick for a further ten minutes or so. I couldn’t breathe and I clear as day remember sitting in my own sick, because it all happened so fast I hadn’t even had the time to turn the flipping light on! I was miles and miles from home and I was actually very scared by now. I remember getting up and dragging myself outside to a wall. I was debating on my next move and seriously considered phoning myself an Ambulance. At a point of desperation because I couldn’t walk the 3 minute walk home, I called a Taxi. They laughed at me, and I cried and told them I was poorly and couldn’t walk home. ‘We don’t do journeys that short, I’m sorry’. I was humiliated people were looking at me covered in sick and I couldn’t breathe properly. Did anyone help?… Of course not! I got up and walked and then I sat down to stop, and walked on and repeated this at least 5 times until I made it to my block. ‘Fuck, this is fucking bad’, is all I could manage to think at this moment. I stayed in bed for a whole day and night with no food or water. At this point I couldn’t muster up the energy to even walk to the kitchen.

I phoned the on campus Doctor building, which was luckily 30 seconds from my building. Even that was too much for me to walk. When I arrived in the building I lost all faith in humanity. I was as white as a ghost and couldn’t breathe, would anyone give up a seat for me? Don’t be stupid. They watched me sit on the floor, like a dog. When it was finally my turn the ‘Doctor’ (the only PHD she should have is one for being a ‘Pretty Huge Dick in my opinion) wrote me out a prescription for some medication. My next question was ‘Where is the nearest Chemist?’, ‘It’s in the Town Centre’. Okay so that’s 3 miles away from where I currently was and I couldn’t walk 30 seconds. After trying to explain this to her she told me that there was a courier service but it would be a few days. Obviously I couldn’t wait a few days so I broke down in tears. The best she could do for me was to book me a Taxi to take me to Sainsbury’s Pharmacy. Reluctantly I got into the Taxi and travelled down. Once I arrived there I dropped in the prescription and the Pharmacist told me it would take a day. I burst into tears right in the middle of Sainsbury’s. I went back to my room and got into bed and tried to sleep. At 8.30pm I had a knock on my door. I answered and there was the Pharmacist holding my medication. He was that worried about me, he travelled all the way up to give me my medication. There are some Angels in existence.

By the end of the week I was rescued by my Dad and brought straight to Hospital where I spent weeks. Consequently I spent the next three years being afraid of being alone. I’m still afraid of being alone.

As the year went on I did struggle with recovery having bouts of relapsing with the illness. I had a real struggle with my weight but I managed to keep myself over 7 stone which enabled me to continue having periods, and therefore be fertile. I fell pregnant in the Autumn of 2012. Unfortunately, I suffered a miscarriage. It was far more complicated then it should have been. I had an infection too so I had to stay in Hospital for the pain. It was excruciating, but like everything else in my life, I had to deal with it. I have never admitted this, but I felt like I failed. I was lying there getting the remains of my child pulled out, so undignified. That was my baby. My one shot. It eats me up sometimes, watching other Mother’s have children. It was like a cruel joke from God. Giving a gift and snatching it away. Now I have been to The Royal Brompton and been told children are never going to happen for me, I find it even harder. I will never find clarity in the situation, but I will learn to live with it.

2013, I nearly lost the most beautiful girl in the world; my Sister. I won’t go into detail here, but Christi had been very ill from another condition and had to have major emergency surgery. It was one of the most heartbreaking things I have ever had to watch. The reason I struggled was because I couldn’t take the pain for her. Her physical pain or her mental pain. I am used to being the one who suffers, and to watch and not take the bullet hits just as hard. She looked so tiny and fragile. She was unbelievably ill with cannula’s in her tiny hands. I couldn’t bare it and keeping positivity in her life, when her world was being turned upside down was like swallowing acid. Only a person with a Sister as close as mine could even contemplate how this felt. Whatever I’ve been through she’s always been there to make it better, and I couldn’t find a way to make this better. It still hurts to think about now.

A few months later we had another earthquake. Our Parents had decided to divorce. The most consistent thing in my life was about to be destroyed; my family. Again, just another thing we had to just move with. Moving home was the hardest thing. Leaving behind all the memories and the things that made us well ‘us’. It was for the happiness of my Parents, but another adjustment. At this point I was falling with my NTM again. I was now doing 2 week courses of IVs every 3 weeks in Hospital, and trying to be around for emotional support. This has been a real struggle. By now my support network had disappeared. Most (not all) of my friends had forgotten about me, and I had no support when I could have done with it the most. You get used to standing on your own and not needing friends after a while. Now I find it hard to reciprocate all the qualities that make me a good friend.

The very last stress was 2 months ago when I spent nearly 2 months in Hospital. I went to London, as you know. This has left me scared to return to Hospital and being locked up. I found seeing other CF sufferers at later stages of the illness very disheartening. It’s that same old thing, you want to know, but do you? The admission was well worth it because I gained so much education about NTM, but to know the state of my health is devastating.

So, this is my honest after storm debris. The last 3 years have been a real challenge for me, and I am sure there is still much more drama to experience with my illness and life in general. My ultimate goal is to try and reach a point, where I can put it all behind me and be free to move on.

‘Accept me for who I am’ – CF and Relationships

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Acceptance – ‘The process or fact of being received as adequate, valid or suitable’.

As each day begins, and we go about ‘living’ our lives, there are many things we expect from ourselves and others to gain the best experiences. We expect to become educated, meet people, make choices (make mistakes), choose a career, find a partner, build a home, raise the children and make every experience count, until as old as possible. For the majority this path is set in stone, and why would anyone expect any different? However, for some of us we were born for our paths to be different. 

Imagine growing up knowing all the things that make a person ‘normal’ is out of your reach and will never happen for you. Imagine, being at School and planning your future and your career, and deep down knowing in your heart, no matter how much effort or focus you put in to your studies, it will quickly amount to nothing. Imagine growing up and knowing your different, but there is bugger all you can do about it. People like me (or people like us) spend our life waiting to be ‘accepted’, and it never goes away. Life for us is predominantly controlled by our illness, and secondly by peoples acceptance.

This does not come easier with age and from personal experience, the more we grow, the more heartache there is to come.

When I was young, I felt I could do or be anything, because I have always been protected by my Parents. I felt I could go to College, I could go to University, I could go Abroad and explore; any of these things I could do because their barrier of protection was there. The one thing I couldn’t be protected from was relationships. 

Finding the perfect person to accept you for all that you are has become my biggest problem. As the illness is progressing I am not only running out of time, but I am also running out of heart. I have definitely become numb. Finding someone to accept your fate is the hardest thing I’ve ever encountered. The person who chooses someone like me, has to give up so much of their own life, for me. A person who chooses to be with me has to not only take the good, but also hold hands with the bad; and finding someone with that much bravery, has proved more than a challenge for me. 

I can understand, who would choose a life like mine? Going into hospital all the time. Going through the tears and tantrums, watching the pain & suffering, watching their partner’s heart break into two. Missing out on children, missing out on a family. Their priority becoming oxygen, wheelchairs and becoming a carer. Why not be with someone easy? Be with someone who can give them everything?

I hope this spell for me breaks and one day I do become accepted. I can understand why a person would be scared, but I feel I have so much to give also, if not the best future. My fairytale has never been a big lavish wedding, or pushing a pram with a beautiful baby. The fairytale for me has always been to have someone kiss me goodbye, with the best memories I could have possibly had through all my circumstances. All I want is to be loved for who I am, and not what my future brings. At this point in my life I am finding it impossible. 

There is nothing harder to accept, than not being good enough because of who you are…