Is 2018 going to be a bogey year for my health?

Its now June 2018 and I thought id try put in to words how the first five months of 2018 have gone?

In Short 

Definitely not to plan!

In brutal honest words

F**king Disaster

Why?

Well, in the first five months of 2018 Ive had 2 stints of IV antibiotics.

So why do I think this year is going to be a bit of a bogey year for my health? Simple. Up until December 2017/January 2018 I hadn't had a single hospital admission or IV treatment in 2 and a half years.

Since December 2017/January 2018 I've had two lost of ivs, a total of 6 weeks of IV antibiotic treatment, 3 or 4 doses of Oral antibiotics and I'm on steroid treatment.

And to be truthfully honest I still don't think ive cleared all the nastiness in my chest.

After nearly 3 years of great well a good run of health I suppose I had to have a bad year eventually. Maybe it is the start of worse things. Time will bring all answers.

Since the end of the first stint on IVs in January I thought "Right lets get back to keeping fit, lets push for a new challenge" but truth be told I still didn't feel up to it. I didn't feel physically or mentally in the right place. Whats really happened in the period between January and beginning of may i've had every infection, cold, cough and bug you can think of. Ive never really had a break or a rest and ive constantly been asking for Oral antibiotics. And nothing seems to have worked and I just couldn't shift things. So May arrived and I had to ask for help. I started IV treatment again and after another 3 weeks of treatment I feel about 80% back to where I was.

And then BOOM it's going downhill AGAIN

I suspect ive lost a little bit more of my lung function, in-fact the results show ive lost a little bit of lung function

Less than 2 years ago I was 55% or 2.1FEV1 and despite keeping kit last year I dropped to 50% or 1.9FEV1 and now I'm down to 47% or 1.8FEV1

And in-fact I had hospital the other day and for the last 3 weeks my Lung function has got above 1.6Fev1 or approx 44% 

It's not a huge change and infect I'm hovering between 1.6 and 1.8Fev1 (44-47%) depending how I feel and how much training ive done.

And there lies a big problem


To maintain a good lung function for me it takes huge physical effort to keep my lungs going as best as they can and thats where i've been struggling mentally.

Being sick for the best part of 6 months without feeling much better until recently has really affected me mentally, quite a lot more than I initially realised until recently.

Because of how I felt physically it put me down mentally and I pretty much gave up training for anything at all except the odd session, the odd bike ride, the odd swim here or there. I just didn't feel good enough to do anything really physical and mentally I wasn't in the game to be strict with myself and kick myself up the arse. I felt done it. Mentally exhausted.

I need a reset But not rest.

So I changed a few things, given certain things up, certain negative things, i'm going back to talking to a counsellor and trying to get all my books in order in my head.

Ive only started doing this within the last month so I'm a work in progress but starting IVS in may did at least help me to start finding the bug to aim for a new challenge so ive started swim training in the pool and open water swim as I'm hoping if my health plays ball that I will be able to take on a 2 mile open water swim in September.

Its taken me the best part of 6 months to start finding the training bug again, I was just worn out from last years training for the triathlon and I had to take time off it really battered me mentally last year just concentrating on nothing but training for the best part of 9 months in 2017 and I had to stop I was worn out. And thats where all the problems started. I stopped pushing myself and I got ill and its taken me all this time to recover physically and especially mentally to think I can even take something on again.

The mental sides been the toughest part.

Watching my health drop and struggling to get it back up has really played with my mind. In my head if I stop doing physical challenges I really believe id only be around a few more years before id have to make some important decisions about my health or worse.

Watching my Lung function drop like a stone and just not fully recover has been a mind muddle. Ive had to totally rethink how I go about things and how I can keep slowing the progression of CF down in my lungs. I am slowly learning (with help) to learn to cope with how I see things in my ow mind

Im a realist I know I can never stop my lungs from getting worse but I'm trying to work out the best balance to keep myself happy, not wear myself out and still train for fun challenges that benefit my health and to slow my lung depreciation down. The longer I can keep it going the better.

And this is where the mental side of it has been the real crux of things

We can never stop learning, never stop changing and trying new things for the better. Sometimes we get it wrong but I try to learn from that and find things that do benefit me.

Ultimately my head is still a muddle in terms of how I really see my future with CF. Obviously I do a pretty good job at just not paying attention to that negative side of things but its never easy and its never far away. It's coping with this part of it that I'm forever changing. And currently really struggling with.

Why? When the chips are down I struggle not to stay away from those kind of thoughts.

Ive already accepted that 2018 is going to be a bad year for my health and maybe it could be more long term, I mean Im well aware things will go down on a permanent decline eventually and that part of it got it in to my head. How will cope with that as I go along? The bit I can't work out? WHY? How bad?

Now before people think "oh you sound negative this isn't good"

I want to say first I'm not negative. Well, yes I'm down at the moment but I'm not negative in the long run. I have a list of things to do a way to change, to try and figure things out. I kind of always do.

Im still struggling with the numbers, I'm analytical man and it's my day job to analyse numbers, it's the only way I can see things and watching my lung function numbers drop and float around isn't helping me but I'm talking to someone about that. And I can feel when things ain't right and I don't have a good feeling about things but I will keep working at things till I feel like it's going the right way.

The problem for me comes from my period of stable health. I had stable health for over 2 years no real drop no physical decline, I didn't get one major infection in all that time and I felt unstoppable and I think I got a false sense of security from that.

Seeing my health stable for so long was new to me I hadn't experienced that for over 10 or 15 years. So it kind of knocked me to watch myself and my results fall and so far this year not 100% recover what I thought I could. And I still can't seem to get back on the right path despite trying so many different things and constantly talking with doctors to figure things 

But it will happen. I'm getting help, I'm back talking to a counsellor friend of mine and she's helping me understand things.

Im going to be forever a work in progress mentally and physically

One thing I will say to everyone is never hide your problems. If you feel down talk to someone, a friend or family member, I think people underestimate how much difference even one chat can have for someones mental wellbeing.

Just don't hide things, 2 years ago that kind of thinking nearly got me killed.

What am I actually doing to try regain my confidence and to push myself again without becoming exhausted?

In essence its simple. Ive gone back to counselling as I mentioned before, ive given up certain things in my life and just putting myself first without anyone else involved and just doing what I need to either improve or stabilise my health as it is right now.

It sounds selfish in a way but I have to put myself first, give certain things up and in my head its what I feel I need to do to get things right for me.

Ive also started training for new things slowly, I'm not rushing things or trying to take on too much too quickly. No more 6 days a week of training constantly thinking train train train.

Just enjoying my swimming, my cycling and build from there. And as my mental side of things start to line up and I learn to cope with things in a more positive ways that'll increase my wanting to train more and everything will hopefully gel together and Ill be in the happy place I was about 6-7 months ago.

It sounds easy doesn't it? In theory. In reality it's not but time is a great tool to help with things.

I will admit I'm struggling a lot right now. Mentally and physically but it won't last forever.

Physically Im exhausted, all i've done for the past week is virtually sleep, I've been working, i've trained, eaten felt sick and slept. Its kind of all been done in auto pilot. All a daze, if someone asked me what i've been doing the last week I doubt I could say. I can remember the good things I do Like, I went swimming, I went golf practice, Ive been on the bike. They are to me my solace my way of feeling like a normal person.

Just because I'm ill doesn't mean I want my life to stop. Eventually the balance has to tip my way.Ive got the patience to wait as long as I need. Its why i'm easy with accepting this year as a bad year. It won't stay that way.


Of course though I'm not normal and I'm well aware of that but thats okay I like kind of being different. I'd hate to be dull. And I don't mean that badly but who lives a normal life when they are feeling like this? Affected by an illness Like This?
See what I mean about the mental side? Its crazy what goes through my mind.

Yet I always cope, I don't stay down for long. I just need off times and then I bounce back. I may be training again (well trying) and trying to improve myself but currently my switch is off.

It's not easy to switch back on but I find a way every time I go into this recluse, closed, slow down, negative mood. Then I just seem to spring back in to life. And I can't honestly say what changes that trigger moment.

My head always figures it out, some times I need help but I can also do it on my own and it always starts with one thing

Determination.

And through my determination I find my feeling of normal, of freedom

You see I don't want to rest, I never feel like I want to stop really, suddenly my drive my personality pushes me and I just get back in to this arrogant self determined mood.

You see those briefs moments in training like when I was in the lake swimming last week I felt free of my worries I felt normal again, well as normal as my life can be I suppose. It reminds me how good it feels to be doing normal things. Not thinking about my cough or the aches, not thinking It's"did I do my nebuliser?"

And that feeling reminds me why I love taking on challenges. It's a strange moment. And thats how I know I will switch back on. Its already starting. I'm lake swimming training, I'm interval training on the bike and just building myself up slowly till I feel ready to go 100% in to a new challenge.

It's the doing nothing that brings me in to the negative path I can't always get away from. So I will always go back to being as active as I can whilst my body lets me.

People say to me "Please rest" you see I can't, if I do mentally I feel weak and tired and that affects me mentally and I just want to go in to a lazy slope. Then I feel worse and its back to calling the doctors asking why. I can't do that.

So thats why I'm finding my hunger again, getting back in to training. And I know the challenges I want to take on this year. Im hoping provided my health allows me to do the London serpentine two mile swim in September. Im hunting for a little bike challenge to do. Might even make something up myself.

I'm just not rushing in to things this year. I don't want to hit burnout like I did training for the triathlon. I was so happy I did it but I was more relieved I didn't have to train anymore. Despite feeling ill, aching constantly and losing concentration towards the end I forced myself for several months to train 6 days a week. Even if I couldn't do huge mileage or a massive amount of lengths in the pool because I was tired I still did it. And thats why I hit burn out. I pretty much fell out of love with what I love doing.

So this year I'm working hard to find the right balance. Train to improve my health mentally and physically, to enjoy training and to push enough to become fitter but without burning myself out.

Im on a new learning curve. Its kind of turned in to a challenge in its own right trying to get it right.

But I am back training albeit very slowly. As I'm still not well and all I want to do at the moment is sleep. Hopefully in the next day or two my tablets will start to take affect the steroids will always boost me and it'll get me over the edge to start really concentrating on me and finding a good balance.

And you don't sign up to a stupidly expensive gym club just for the fun. Im doing it to make myself go so I'm not wasting my money plus I'm going somewhere clean with the best facilities and I hope will offer me the best chance to improve myself to help me with future challenge projects. Make me go faster.

If I am now stuck at 44% lung function I still want to capitalise on that and go as far and as fast as my lungs will let me or as far and as fast and I can build myself up to.


It's going to be a rough year this year. Im kind of ready for it, well I'm building myself up as best I can to be prepared for whatever I need to do or whatever obstacle I may face. And I still feel although time is ticking it's not run out yet and I still have more to achieve, run, walk or crawl, Bike glide or fall over the line. Swim, or float. Ill get to where I want to be.

I'll do a blog on what changes i'm making very soon

Thanks for reading