A blog from Tom

Cystic fibrosis, tobramycin, lung function, lch. All words that 18 months ago I had never heard, just like millions of people don't know what these words are today. These words were about to become words that I would use often. 

I didn't know where my life was heading 18 months ago, I didn't have a plan for the future. I was just the average 22 year old. Working full time, enjoying being young free and single. I would go out of a weekend with friends, spend my spare time playing football and going to the gym. 

Now 24 I would never have imagined I'd be were I am today. After all I had never heard the words "cystic fibrosis". I had no idea that cf (cystic fibrosis) would become such a major part of my life. That I would spend evenings and weekends in the London chest hospital (lch). That I would be caring for and looking after someone when they were ill. That I would find out the people I called my best friends, the people I thought I could rely on, wouldn't be there when I needed their support the most. But I had my family and I had my Kerry. 

I had only seen Kerry twice before she fell ill and needed hospital treatment. It was the night after our 2nd date. Facebook was how I found out that she had been rushed to hospital, just a few hours after I had left her. At this point I didn't know that she was suffering from cf. Although she was still a stranger to me I just wanted to be by her side. I remember thinking to myself "I have only know this girl for a month or so but I can feel she is unwell and I want to go comfort her." 

It was over the next few days that cf was to enter it's way into my life. I spent hours on the internet researching and learning all about cystic fibrosis. I was eager to learn so that I knew just what Kerry was going through as I visited her in hospital. We grew close over the next few months and fell in love. We would lay together and I would know when a coughing fit was on it's way, I would know if Kerry felt unwell. We shared a magical connection and we still do now. 

Me and Kerry are always on the same wavelength. We often think about the same things at the same time. All part of our connection. When she is happy I'm happy and when she is sad I'm sad. 

"We live together, we cry together, tom and Kerry for life." 

In march of this year we found out Kerry was close to being referred to the transplant team. Her health had been decling quite a lot over the last few years although the last 6-8 months had been pretty stable. Something she always says is down to me. I've given her a new lease of life, a new meaning to life and love. I've given her strength when she has needed it the most, I've given her my love and support, I've given her determination to kick cf right up the arse. I've given her all this just by being... Me. Why have I given her this? It's simple, she gave me her heart and I gave her mine. Kerry can always count on me for my love, support, strength and courage. When kerry told me about just how close to transplant she is and how much time she may have left to live if she doesn't get one, it was a testing time for us. It was a time we cried a lot and most importantly it was a time that brought us closer together. I made a promise to her that I will stand by her no matter what. And I will always stick to that promise!!! 

We made plans, there was loads of stuff we wanted to do together. We often talk about our life plans, wanting to buy the house, go on holidays and start a family. I would love to have kids one day and I know Kerry really wants to be a mum. She would make a fantastic mum! We often say we want a boy and a girl. She has so much love and kindness to give to our children and I will be proud to call her the mother of my kids. Although this is something we really want together at the moment it is not possible. It's not impossible for us to have a child now, but it wouldn't we wise to. Kerry's health isn't the best and there is a high chance that having a child would kill her. Her body simply wouldn't be able to cope. Having a child is a precious gift, but to me Kerry is more precious. I am not willing to risk losing her so we can have a child. This is something we both really want but it can wait. We will wait until the time is right, until Kerry's health is better, until there is no high risk of me losing Kerry.  I can't lose her, it would destroy me. I need Kerry just as much ad she needs me!

For now we will continue to be happy with what we have. We will concentrate on getting Kerry to maintain a healthy life for as long as possible, to always keep her smiling and when the time comes we WILL get that transplant and we WILL tackle cf, together! Together we WILL BEAT cystic fibrosis. 

Learning to listen

The hardest thing, by far, in batteling CF is learning.
Learning to adjust and learning how to listen.

Over the years my knowledge of CF has come on leaps and bounds , I understand the terminology, the facts, the science & how it affects the body,  I can picture what it is doing, I can feel what it is doing.
But the most valuable lesson I have learnt, is to listen to my own body as over the years it has required so much more.

I used to work in an office for an events complex, 6 hours a day, answering phones, taking bookings, payments, banking, ordering things the Buisness needed, and I enjoyed it, mainly due to the fact that I worked with family.
I also was the bar superviser for the same place, so would run the bar at weekends.
I loved my job, I liked speaking to people and I liked having a purpose to get up in the morning.
I left my job two years ago, as the hospital admissions increased, I was having more and more time off, and when I was there I felt less than useless, I couldn't be on my feet at the bar so would find myself sneaking of just to sit down and catch my breath.
I was deliriously tired during the day and was making mistakes in the office, booking people in for the wrong event, miscalculating the PDQ machine. My treatment was majorly neglected and put on the back burner as I was simply too exhausted to do it all.
So a vicious circle of missing treatment, feeling ill, working, feeling tired, so missing more treatment began.
My health made quite a sudden decline from a fairly acceptable 60 % to 40%
I decided to leave work and focus on my health before much more damage was done.
Learning to adjust to the increased regime was tough, I would wake up in the morning, feeling depressed and like I didn't have a purpose, I'd just roll over and sleep hours away, treatment still being neglected.
After many months of being stuck in a rut and more lung function decline, I decided things needed to change.
My adherence increased, I wasn't missing medications, I learnt to admit myself for Ivs as soon as I was poorly not waiting for weeks on end declining at home, convincing myself I was fine.
A year on from this my health still was not particularly going in the right direction. My lung function now sitting in the 30s, my treatment regime was to increase again
My lungs functioning on such a low level meant I could no longer do the things I would do with ease.
I used to get up do the housework, walk the dog, go to work, socialise, go clubbing and drink far to much. Nothing particularly needed much effort or pre planning.

Learning to adjust to my new life was quite a roller coaster, pre planning trips became the norm.
I could only manage 1-2 tasks per day, maybe a bit of shopping or seeing a friend, maybe light housework the next day. And mostly learning to adjust to a life with oxygen.
My mind is extremely active, too active infact, in the mornings it will plan a full day of things to do, when in reality my body Is struggling to keep up with my mind.
Many a time I would completely ignore my body and push it so hard to do the things my mind so wanted me to do, then at the end of the day when my body was screaming in pain and exhaustion I would beat myself up "why did you push yourself that hard" " your not superwomen" " you can't do this anymore"
I would fall in to bed, not just tired but exhausted, my lungs protesting with any movement, the cough causing tearing pain through my ribcage, my head feeling like it would explode from the pressure of coughing. My bones would hurt, I'd be curled up like an old lady, I'd even shake from pain and fatigue, my mind nothing but fuzz as it tried to contemplate the day and how I went wrong, how I caused myself to get in this state.
Over these months the adjustment period to what I can and can't do was actually harder than adjusting to my state of health, I knew I was poorly but actually having to change my life was something I felt far to much. I could accept I was Ill, that I had cf, that I wasn't inevitable but I couldn't seem to accept the limitations that came with it.
I was causing myself to be iller with my stubbornness.
My body was exhausted but my mind still so willing.
As time has gone on the learning process has been a great one, and one that has empowered me in a different way. As annoying as rest days are, they encourage me to focus my energy elsewhere.

Today is one of those days.

After a few days of what my body classes as strenuous, I have decided to take a day out, I'm in bed with daytime home makeover programmes, tea and plenty of snacks, I'm doing extra nebulisers and lots and lots of gentle physio.
Keeping my chest clear will always be an essential but to rest my body is more essential than that.
This however does not cure that pesky brain that runs a 2000 miles an hour.
Another learning curve was the lesson in focusing the energy my mind has.
I won't go in too to much detail just now as I don't wish to jinx any of my plans, but I have been extremely pro activ towards causes that are close to my heart. Obviously Cystic Fibrosis, but also organ donation, while my body is resting in my extremely comfortable bed my mind is as ever, busy. 

Im eMailing and arranging events to raise awareness to both CF and organ donation.
I have made a few contacts and lets just say that hopefully you will be seeing a little more of me in a an exciting way.
Once things are a little more sorted out I will share my plans with you, but for now its a work in progress :) 

Learning never exhausts the mind - Leonardo Da Vinci

Just an update...

My last few blogs have been quite generalised about CF, so I thought this one I would give an update on how my personnel life, health and relationships are.

 I took some time out from blogging last year as I felt my health was overtaking my life and speaking of it, and its tremendous decline was not helping towards my depression or acceptance to my current state of health. 

A lot has changed in the last year. It's like I'm a whole different person writing this today. One thing that has not changed is my love of Starbucks as I'm writing this curled up on a chair with a iced caramel latte, and of course sat with Clare, she'll forever be a constant in my life, I just can't get rid of her ;) 

 I guess the most major change in my life is happiness and acceptance of the current. My Relationship with Martin came to an end, a long over due end which was more than amicable as we could both see we were wrong for each other and brung the absolute worst out in each other, our relationship was destructive and we were destroying each other mentally. A relationship with lack of communication and support was bound to end, especially when support was something I needed more than ever with my declining health. I'm happy to say that we are both happy, have moved on and their are no hard feelings or hurt on either part. 

 The realisation that my relationship was over gave me a new awakening to life, I knew what I wanted to make me happy. I felt strong and empowered, ready to take on the world again. And with this came socialising and meeting new people, new friendships were formed and a confidence in me began to grow. After many months of living the social single life I felt like I was missing out on one thing that I had always craved. Love, attention and affection.

 Through encouragement of a few friends, who had tried and tested the taboo world of online dating, I decided to sign up, what did I have to loose, I'd been single for a while and my ego needed a slight boost as most people's do at some point in their lives, I felt good about myself but almost craved that recognition from the opposite of sex for validation. 

The messages started coming, "you look gorgeous, wanna meet up for fun" wink wink, "you look like the sort of girl who would look good in my bed"

 Absolute disbelief and shock washed over me as I was discussing these morons with Clare (over a coffee) I said to her I felt like a piece of meat, being window shopped by men who just wanted me for one night, I wasn't sure I wanted a serious relationship, but I wanted more than that, no wonder the world of online dating has just a reputation, this reputation was proving itself to me with every sleazy message that popped up in my inbox. I didn't fancy shopping for a man online, I was going to deactivate my account and online shop for shoes, guaranteed satisfaction everytime ;)

 So I logged in to my account, flicked through the final messages of sleaze in my inbox and located the deactivate button, a quick flick of my eyes over the screen one last time and something stopped me. Now I'm going to sound like a mills and boon novel here, but a guys picture really caught my eye, what can I say I'm a sucker for dimples, so a quick change of heart, I thought ok so im not going to meet my mr right on plenty of fish but if I can't beat them ill join them... so I clicked on mr dimples picture and sent him the most cringe worthy message EVER...

Hi, couldn't pass by and not say hello to someone with such a cute smile...send! Oh my god, I was Laughing with Clare at the sheer pathetic content of that message, defiantly one that would be worthy of the recycling bin if it was in my inbox...but to my surprise an almost instant reply,.. Haha thanks, you look really beautiful.... oh let the cheese begin. 

 We ended up messaging for some time, and I found myself looking forward to the beep of the online app, Tom had messages again I gushed to Clare. After some weeks we swopped numbers and continued to talk over text, we both deactivated our accounts from that point.

 I could continue and tell you how we met, where we went on dates, at what point we felt this was something special, even the point we fell in love, but I won't. I'll just say when we did fall in love & I felt happy.

 Moving forward 14 months and me and Tom are living together and he has given me courage, strength, and a love I never thought could actually happen. A truly amazing strong man has that has not only changed my life for the better he has given me a positivity I never thought existed in me, we are now fighting together and I have to Win this fight now, for what better reason is there than happiness to keep you alive.

 My last blog, as I recall was based on the fact my lung function was stuck in the 30's this is still unfortunately the case. This is quite possibly the sickest I have ever actually been, my lung function is sitting stubborn in the low 30's. There has been the addition of oxygen, I use this on movement, I.E housework, walking, anything really aside from sitting still and sleeping. The absolute horror of having to overcome leaving my house with an oxygen cylinder strapped to my back was more than I can bare. In fact I refused to leave the house for many months while I adjusted to this visible sign that I wasn't the same as my piers, I was in fact sick, something I had always tried to hide, but here it was every evidence of sickness was visible with the nasal specs up my nose as I moved through the swarms of people staring at me as. Even worse when I was in my wheelchair which is now essential for long journeys.

I was everything I never wanted to be, but yet somehow once I got over the embarrassment, and realisation that I would die far to soon without these aids which my lungs so badly craved, I almost embraced this new look. I almost took on a gay mans 'I'm here and queer chant'  accept it was I'm here and I have a tank of air. 

This tank of air was the thing that was allowing my lease of life, it's surprising how you can actually walk a little further with that magical substance called oxygen, something god so kindly forgot to gave me a good enough supply off :) 

The stares that used to render me useless, a crying mess in the middle of town was now, my new accessory, like a handbag, I embraced the stares. I may be a slightly different, and my face furniture may not be stylish gok wans but its my face furniture and I'm strangely proud of it. It's got me to where I am now, so for that I have to love olly and will...(olly the oxygen tank and will the wheelchair)

 I don't feel I want to talk about my health much more than that at the moment, I'm not entirely sure why, but I think it's because I don't want every aspect of my blog to be about mundane Cystic Fibrosis, it does get boring :)

 I think I'll talk more next time, so Untill then....

Thanks for reading :)

Tattoo Pictures

 My tattoo, 'They now fly with angels, They now breathe easy...In memory of my 2 friends, Danny Valentine and Jamie Moles, R.I.P Angels

Toms tattoo 'Cystic Fibrosis-I wish time was on our side

Two pieces of art, dedicated to Cystic Fibrosis and just two of the people it took too soon xxxx

Me and Tommy

A photo purely to see if I could figure out how to upload pics....Ta dah :)

Cf - 'Sufferer' ??

Collins English Dictionary defines the word suffer in this way.. 

Verb:

To undergo or be subjected to (pain, punishment, etc) 

To undergo or experience (anything) ⇒ to suffer a change of management 

To be set at a disadvantage ⇒ this author suffers in translation

To be prepared to endure (pain, death, etc) 

 As a sufferer of Cystic Fibrosis I find myself looking towards the meaning of the word, and its negativity. 

"Be subjected to pain or death" 

Death in all of us is inevitable, it's the one thing we can guarantee in life. But should death mean making old age in a painless way. 

 Everyone at some point will most likely suffer from something, illness, heartache, depression but most of these are short term, something the mind and body can overcome with help, encouragement and possibly medication. 

So I ask my self if suffering is actually the correct word for a long term illness. True you will suffer in ways most healthy people wouldn't but on balance I feel sick people actually have a healthier outlook on life, a passion, a yearning to better themselves and do things they were told they never could.

 The illness itself seems to be much less dramatic to the sufferer than it is to their piers, as its there life, it's day to day living which seems so normal, no matter how abnormal it actually is. 

 I realised recently that the life i deal with everyday may in fact be viewed as abnormal. I was arranging a weekend away with my partner. Of course we went through the rigmarole of choosing a destination, the hotel, any extras we wanted to include in our booking. For most this would have been the end of it, a weekend in the Cotswolds booked, done and dusted, but then the abnormality part of my break kicked in. 

 I had 2 nights and 3 days away from home, I would have to ensure I filled my medication case precisely so nothing was missed. 

 140 tablets packed in their separate containers, 20 each morning, 10 each night and a further 30 during the course of each day. 

Two inhalers. 

 Two separate nebuliser compressors for 3 different inhaled medications, as well as a cool bag to keep them at the correct temperature. 

Insulin pen, blood glucose monitor, testing strips, needles and a good supply of glucose tablets

 Nasal spray and gel. 

Portable oxygen cylinder, the mains charger, the in car charger, the back up oxygen cylinder should the first one fail, along with different masks/nasal cannula for each cylinder.

 A jab containing adrenalin should i have an allergic reaction. 

My prescription slip and a letter from my healthcare team should I need to be admitted to hospital if I get acutely unwell and need to be admitted to a hospital when I'm there. 

 My wheelchair I'm not even sure if that's all of it as I don't have my usual checklist to hand. 

That was just the packing. Before all of that could actually happen I had to ensure my chest was in optimum condition so I had to arrange a course of antibiotics to last 2 weeks prior to my breakaway to ensure any bugs that may have been brewing in my chest were killed off so there was less chance of a flare up whilst I was away. 

Our English dictionary defines 'suffer' to be set at a disadvantage. In many ways I know, and can accept that I am at a disadvantage, yet it somehow feels so normal.

Another definition is to endure pain, which I feel is the more relevant definition in association with Cystic Fibrosis, I have wrote in detail before how the pain of CF can be so debilitating and unlike any other pain I have known, it's a tormenting mental pain as well as a physical pain

What does suffer mean to the majority, a question I often find myself asking.....

Great Things

If you cannot do great things, do small things in a great way - Napoleon Hill

 As an author of literature, I feel Napoleons words, in some way, should be recognised as insightful and true.

I know I will never, in my eyes, do great things, so I do strive to do small things well. But do people's opinion of great things differ in many ways?

 Making old age I won't, that great thing is unachievable, but the small things I do along the way I hope are great. 

The love I show for my friends and family are great, as is my gratitude for their care.

 The respect I show for my healthcare team is great. 

But I fear my life achievements are not in there selves great. I know many things I'd like to do are limited, my high flying career as a doctor unfortunately will never happen, I would pose to much of an infection risk to patients, as they would me. 

 Travelling through Europe, isn't what I would call an impossibility, but the sheer spontaneity of my illness would make it extremely difficult, not to mention the cost of insurance as an oxygen user. 

 Having children, again not an impossibility but before transplantation of my lungs would be unbelievably reckless and irresponsible, not to mention selfish, as my longing to be a parent could possibly leave a young baby and and boyfriend without me.

 These are what I call 'great things' achievements....normality.

 I'm very optimistic that I will find a donor when my time comes, and even more optimistic that I will recover well. I am also realistic, so would not go in to this procedure not knowing the risks and difficulty of it, mentally and physically, but without optimism, without hope, where would we be.

 Untill I'm post transplant I know I need to keep my plans on the back burner and concentrate on the now....the smaller things.... Maintaining my current health of 32% lung function, by continuing with hospital admissions, the medications, inhalers, nebulisers, increased calorie intake, oxygen & physio. A small price to pay for health and happiness.

I feel I have a great life, I have my home, my friends, family & partner. I'm very lucky to have the support network that i do, which I know many people don't, I have never gone without things (other than a little oxygen and lung function) ;)

But I am happy, more than happy. I feel lucky and appreciated and most of all loved.

Maybe all these small things, are infact, some of life's greatest things. 

Maybe great is just how you perceive it?.......