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