Decider Day - Tuesday 23 May 2017

 

As you know I have been building up to this day with mixed emotions with the potential for hospitalisation for 2 weeks on a course of very strong antibiotics, a bronchoscopy or further medication.  None of which as you can imagine put a spring in my step.

Before I go into the appointment, I just want to go back 4-6 weeks when quite frankly I felt rubbish - tired, lethargic, lack of motivation for me.  I wouldn't ever say I was at that point of giving up as I will never be there I assure you (especially which all the support I have around me) but I just wasn't in the right mindset to take things up another level in order to get back to where I needed to be.  Lets be honest, we all go through times like that. I hadn't even prepped in the usual ‘Sophie’ like manor - I guess I had lost that fire.

I then went into the appointment before this one where it hit me like a brick wall. I had stopped caring for myself fully due to other commitments or ‘being too busy’.  Yes, we should make our lives so busy enjoying all it has to offer and so we have no time for sadness, regret or letting fear stop us pursuing the things we are passionate about but we shouldn't ever get so busy be forget why we started in the first place.

This was the kick I needed. So I made changes to my training, my medication regime, sleep, rest (these two things are very different), fun and me time. I went back to basics and kept focus.

What I constantly relearn and remind myself of is to never underestimate the investment you make in yourself. 

So, Tuesday, I admit I was feeling quietly confident despite having a bit of a tickly cough that randomly appeared two days prior. The way I see it, I worked so hard and made sure I didn't miss a treatment, I kept my training specific and I was a little selfish with my time to ensure I was doing everything I could. So when the day came round, my lungs felt strong and my mind ready to take on whatever the day was bringing - there was no point worrying about something I cant massively change at that moment.

I went and had my CT scan and if you have never had one, they are a breeze in which momentarily if you close your eyes you feel as if you are jetting off to an exotic adventure because the scanner sounds like an aeroplane ready to take off. After this I had a bit of time to waste so I went and enjoyed the sun with a hot chocolate.

It was then time to find out what the next couple of months was bringing me - sounds dramatic but I guess you just never know what is around the corner!  

Lets get down to the nitty gritty facts; for the first time ever I weighed 59.1kg and I was pretty impressed with myself (must be one of the only girls ever to be excited about putting on a kilo or two!) my lung function FEV1 95% FVC 110% a total of 4% increase in a month which if pretty good going as getting LF up is hard work! So as you can imagine I was over the moon - even more so when the consultant shook my hand as yet again I had managed to prove to him I could improve my health with shear determination and a sign off with no further action until September! 

That most definitely needed celebrating which I did. Of course I will continue to work hard as I want to be hitting those 100’s again but it has re-highlighted the importance of keeping you, your health and happiness as number 1. So remember that. Don't get carried away or so busy you forget or over look the important things. 

Make yourself a priority once in a while, it is not selfish it is necessary!!

Sophie xx

 

 

Tuesday 11 April 2017

She was powerful, not because she wasn't scared but she went on so strongly despite the fear.

I will keep this update short but sweet with how my hospital appointment went today, especially as you know how I can just get carried away!!

SO, before my appointment which was actually getting the feedback from my Annual Review I had to undergo a fasting glucose test.  If you aren't familiar with these, basically they are to test you sugar levels to ensure you aren’t diabetic as this can be a side affect from CF (our bodies sure do like to challenge us!!)

Although it may sound slightly (very) dramatic, I bloody hate them for the pure reason I have to fast from the night before knowing that I probably will not be feasting again until at least 1pm the next day! 

Aside from the feeling of starvation and without boring you with too many details these results came back fine - the first blood sugar level being 5.08 and second post drink 6.67! The other bloods from my review where also perfectly ok which I am pleased about especially as usually my Vitamin D levels are lower but I have been taking a supplement to boost this throughout winter!

Before I crack down on the finer details of my lung function test (which is the main one we all really are sitting in our seats wanting to know the result from) I made the most of this beautifully sunny day in London and I try and see the positive in it as lets face it being in an out of the hospital isn't my favourite way to spend my time out of work but arranging coffee (although mine was water) and lunch dates which I am going to share in a separate post about places I love in SW London really put a smile on my face!

Lets talk FEV1 + FVC. These are the values that for me mean more than anything. To see if my hard work had paid off.  Last time I went (17 March 2017) as you may know my results where not as I wanted and I had an infection on my lungs, one that I haven't had for many years so I was prescribed 3 weeks of ciprofloxcilin 2000mg per day which is huge (although the benefit of catching the sun and getting a tan has to be the silver lining!)

My FEV1 hasn't changed it is still at 92% which i realise is pretty damn good but for me that isn't my best especially being a perfectionist but I will chat more about that in a second! My FVC had improved which is amazing to 116% from 102% so things are on the up!! Can I also just say - the beautiful physio i had today not only made me laugh but impressed me so much - she truly is a ray of sunshine with a beaming smile and full of enthusiasm and totally on my wavelength. So I thank her today for making my time in the hospital that much brighter.

After having discussions with the Consultant, who was incredibly thorough and analysed every result possible we have come up with an action plan to try and optimise my health again.  The reason being, we discussed the trend in my results on a yearly scale, this year being FEV1 92%, last year being 96%, the year before 106%. Although a gradual decrease it is still a decrease without a proper reason why.

With this we have decided to take action to investigate if whether its because mid 90’s is my baseline now or if we have missed something which can only be seen via further testing. So, dependant on my sputum (you CF’er will know what I am talking about) we have three options;

  1. CT scan to see if theres anything we have missed
  2. Bronchoscopy which I have had before and gave me answers when this happened 6 years ago
  3. IV’s (intravenous antibiotics) which is last resort as its been a fair few years since then to blast anything lurking away! Of course the other two are first and hope they will be enough,

Reflection on this.. Positive! You may think I am crazy? No! Let me explain. A set back is a set up for an almighty comeback and a negative result will only make you reshuffle life, refocus things andmake sure you are actually looking after YOU (which most of the time I'm too worried and making sure everyone else is ok!) 

Overcoming challenges are what make life so meaningful and interesting, without which we wouldn't appreciate success and struggle usually becomes the solid foundation as to rebuilding your life.  Obstacles can also be opportunities.

So aside from the medical plan, what my plan..

  1. Training - Hitting cardio 3-4 times a week with my weight training but making my lungs work bloody hard - train them like any muscle to get strong. Bonus I get to eat even more so I don't lose weight - YAY! 
  2. Discipline - make sure all my medications are done at the right time everyday. we have to remember CF is a progressive disease, it will get tough as we get older but we are made of stronger stuff than that so remember almost anything is possible if you put your mind to it.
  3. FUN! yes I said it finding that balance, laughing more, eating more good healthy food, smiling more, surrounding yourself with the best kinda people those who make you feel alive and doing the things that are good for your soul.
  4. Be me, always!! Love me more and reduce stress in my life as that will also have an affect without you knowing. 

On that note, before I get carried away - let me leave you with this thought.

Whatever you hold in your mind will tend to occur in your life.  If you continue to believe as you have always believed, you will continue to act as you have always acted. If you continue to act as you have always acted you will continue to get what you have away gotten. If you want different results in your life or your work all you have to do is change you mind.

Sophie xx

17 March 2017.. The truth as to how I am feeling

Hospital App 17 March 2017

‘Life is like a camera, focus on what is truly important. Capture the good times and develop from the tough times. And if things don't work out, take another shot’

So lets talk about my last hospital appointment on 17 March 2017.  It has been 6 weeks or so since my big annual review and if I am being completely honest, I am bloody exhausted but I have learnt a lot as well as realised that you cannot be superwoman and take on the world and beyond and expect to be springing out of bed and your health to be at its best. I have made changes but not quite enough to make a substantial impact.  

I admit I do forget I even have CF sometimes because my body I think is pretty amazing with how it deals with not only a life threatening condition on a daily basis but me constantly pushing myself in all areas of my life from work to the gym. It takes it in its stride with 12 hour days working 6 days a week and 5 hours of sleep a night.  It adapts very, very quickly and I don't always appreciate how incredible the human body can be or understand how I do it and nor do my friends and family, they are constantly telling me they don't know how I keep up such a busy life - I like to think of it as defying the odds (who would want to be normal anyway!?). 

But with that in mind, there does come a point in which you have to give back and care more for you and that is where I am at after Friday. I am being sensible (for a change) and taking precaution before some bigger measures have to be taken. Sounds serious, I am just listening to my body and recognising signs before things are more concerning like 6 year ago.  What I find with CF, my CF, is I can push it to a point (which is a hell of a lot) - I have taken time to really get in tune with my body, although sometimes I never really know where I am at until I am tested and it does surprise me at times even this appointment has as it is totally better than I am feeling.  I truly believe so firmly in the power of the mind and how it can have such an incredible impact - this, although is for another day.

Don’t get me wrong, I want to make it clear that; YES, I am very well for someone with CF, and in general, but, I am at my lower end of well. My FEV1 is 92% and FVC 105%. But if we put it into perspective, a year ago my FEV1 was 105% and FVC 115%.  I understand it may not seem a lot of change but even 1% can make a difference and gaining 1% is bloody hard work (you CF’ers will be able to relate!) and if I don't address this now and it continues to drop I could end up in an unimaginable situation in a very short space of time and for that I would never forgive myself especially as at the moment I have control over what I do day to day.  

If you don't have your heath, you have nothing in my opinion - life is also way too short to be gunning it and being too exhausted and not having an equal amount of rest, fun and adventure. I value living the life you dream over anything, even money which I realise is catch 22 as you need money to do things you love most of the time. My views are very different to many people, partly due to fear deep down of one day not being able to do the things I love after being told I would only make 30 years old (yeah right I will remind you of that when I am 87 and still doing burpees), the fear of missing out and looking back knowing I could have done something sooner and having the ‘what if’s’. I also have to say, I realise I look the picture of heath and I am still able to zoom about like a mad woman and unless I told you the truth; I feel absolutely exhausted, I don't have the energy or real motivation to train, I have to nap a lot to get by, I have lost my appetite which has never happened in my 25, nearly 26 years of being here (which is normally that of 4 grown men) or even be excited about the things I am passionate and that is WHY things are changing - I have lost sight of the important things which we all do from time to time and that is enjoying my work by not over doing it and doing the things I love with people I love and making time for me.

They way I see tough times is you learn, you appreciate things and a lot is put into perspective. You also readjust your focus, which I think is really positive.  Sometimes you have to be redirected and be reminded of who you are and your values to get on the right path.  Each tough time in my life has brought something equally wonderful and at times life changing.

So whats next;

My next appointment is 11 April which is actually my annual review feedback. By then I hope to have added a couple of % to my LF as well as gain the lost kgs.

The plan;

  • Reducing my working right hours back to allow time for me to train, rest and nourish my body so my health has a chance to recover. To be less crazy and chasing about and stressed about things.
  • To do the things I love, never underestimate the power of self love or doing things you are passionate about. I have which you may have noticed been back horse riding which is where my heart truly lies. This is hugely beneficial not only for my mind to switch off but my body, its hard work riding and I miss that. Being out in the open in the fresh air, I am a country girl at heart. I haven't been doing enough of this kind of thing.
  • To have a break - to book some time off and fly to the sun to reset but also get back wake boarding and totally switching off from work which never happens (all you self employed lot will know what that is like)

I will keep you updated with how I get on.

I am going to leave you with this;

Enjoy your life now, it is not a rehearsal. And never get so busy making a living that you forget to make a life doing the things you truly enjoy because one day you will regret not making the memories doing the things you thrive on with those you love. 

My next blog is all about how I have lost my love and motivation to train and what I am doing to reignite that fire. Yes, I am human after all!! 

Sophie xx 

 

 

 

 

The Big Annual Review 2017..

D Day......

An arrow can only be shot by pulling it backward. When life is dragging you back with difficulties, it means its going to launch you into something great. So just focus and keep aiming.

The above quote is by far one of my favourites, one I keep close to mind when times seem tough and life doesn't go your way. I believe the reasons we don't always get what we want is because we are meant for greater things, or we are going down the wrong road. Its life’s way of telling you to stop, reassess what you are doing and following your heart and the only way you are going to be redirected is by sometimes not getting exactly what you hoped for. I even have an arrow tattoo on my foot as a daily reminder of this and to never stop, inspiring, being you or moving forward.

I will admit, sometimes life sucks (even if social media says otherwise) but each time it leads to better things, you just need to trust it and have faith. This is where you learn, grow, aspire and even sometimes start all over. I am always thankful for hardships looking back, they ignite the fire in my belly to be come stronger to push myself to a new level, focus on what I want for me (as I am always putting others first) and also its a time of reflection.

If you have been following my social media (Instagram) you will be aware I have recently (6 February 2017) had the biggest appointment of my year for my Cystic Fibrosis, and in case you wondered I have Double Delta 508 which is the strand.  Its a day full of tests, bloods, lung function, X-rays. You name it, its on there. Each year is the same bar perhaps one or two things and so for me this is now very routine at 25 years old.

This year for the first time I was a little apprehensive. I hadn't felt my best, work has been insane, the last 6 months of my life had been tipped upside down with sadness, new adventure, exciting times, a lot of change. I hadn't been able to focus on me or train as much as I wish or perhaps as much as I should. The appointment came round so fast that before I knew it, the day was here and so of course with everything I do I gave it my all.

The results went well, some were pretty amazing with increasing the way my small airways functioned to O2 transport but that one we all focus on, FEV1. For those non-CF’ers, or if you have never heard of it, this basically means the volume exhaled in the first second of forced exhalation. 

I work hard to keep well and my lung capacity as high as it can be, but genetics is a whole new ball game so to keep this simple. Every person who has CF, their body deals with the faulty gene differently hence why its so difficult to treat, let alone cure. So yes I work hard, I do my medication but it also comes down to what you inherited from your parents.

So, this year I didn't get what I wanted or worked my ass off for (kinda effort shows.. hard work pays off - this I know in my heart I haven't done enough of)… Of course with the initial disappointment in the result, myself and the fact I had let something slip I fight so hard for. As we all do I had a sulk, I was quiet and basically felt sorry for myself - I am human although usually very upbeat and positive. Those who know me will know this will last around 3.5 minutes before I am sprung back into mission mode to turn this around because I am competitive, I am naturally a fighter and positive and want live my life to the fullest.  Now a few days later I see this as a very positive thing for a number of reasons.

  1. I had let my health slip without really realising but, it gives me a chance to reassess my life balance of work, fun, rest. I get told I do too much sometimes you need to be shown. This was my wake up call.
  2. It kicked me into the realisation you are always number 1. If you don't put yourself first very often things you are passionate about will go on the back burner at times. This is your driving force. Without it you will lose you.
  3. I need to make more me time yes, I also need to make time to take precious opportunities to see my family and friends. Make time for those who love me and care. Memories over anything. I am a firm believer in that. 
  4. Reassess what I want out of life rather than get carried away and let the weeks go by. What do I want to do, achieve, am I satisfied in my work life, home life etc. Be more mindful and productive of time.
  5. Without your health, you have nothing. Money cant buy health so always try looking after yourself the best you can with this manic life we all lead.
  6. Lastly, keep the positives in my life, realise the negatives and try reduce them completely.

So to summarise, my FEV1 is now 90%, I know it can be well over 100% so I am determined to get this back up by refocusing everything to optimise my health because partly I have no choice its a progressive disease I will always have to battle what is thrown my way, its part of me and I wont let it stop me living a life I love. 

CF is an awful disease that takes too many lives too young some before the age of 27. I am not telling you that for sympathy I am just stating facts — CF has made me ME, for that I am thankful.  But, I wont let it beat me because I have living to do - I am on a mission to create awareness and educate families, friends, loved ones and those with CF via social media, youtube (soon!) and speaking at events, to change peoples lives so they can lead long happy fruitful lives until a cure can finally get rid of this heartbreaking condition. I am fully aware for someone with CF it is a bloody brilliant result, but for me thats lower than it should be and never will I take for granted my health - I work hard but I am lucky. Over the next month before my next appointment I will be working on getting an increase as high as I possibly can while being realistic. I will also be adjusting my life a little.

Life is full of awful times, but without them you wont know the amazing times. So if you are going through anything right now, please remember this. The storm will pass, you just need to ride it out and keep moving forward, put your positive pants on. Setbacks allow space for exquisite comebacks and above all don't be afraid, never give up and realise you always have the power to turn your life around no matter how hard or unfair things seem. Always do your best and you are always one step away from a different life.

If you have any questions or anything you would like to know please contact me - I will be happy to help or answer anything.

I hope you got something from this and can relate to things you have going on - I am sharing the real me and written from my heart.

Sophie x x