Living with CF is an ever evolving Challenge

So this year is certainly turning in to quite a challenge to get my CF under control and to be honest I was starting to lose faith even in my own ability to keep pushing and trying to get myself sorted.

Its now July and the last few months have been a tad tricky to put it lightly.

Heres a summary of my recent events.

December 2017/January 2018 complete a course of IV antibiotics (my first in nearly 2 and a half years which im very proud of) 

End of January take a course of Oral antibiotics.

March, take a course of oral antibiotics

End of April fall ill AGAIN and have to start ANOTHER course of IV Antibiotics.

Two weeks in to this course my lung function was back to 1.8 or approx 50% and things looked good although for some reason I just still didn’t feel right and felt things still hadn’t cleared so I talked with my doctors and agreed to do an extra week as a precaution to make sure the infection had definitely been given a good beating

3 weeks of IV treatment and my lung function drops to 1.6 (approx 45%) and im just sat there amazed that things of dropped and there doesn’t seem to be any reason for it to happen. I feel okay but I can still feel within myself that something isn’t quite right.

SO off I go for two weeks thinking maybe its just because I didn’t push myself enough with all my physical exercise and training so ill go and work a bit harder.

And guess what? Nothing works, 2 weeks later im back at hospital for a check up and my lung function has dropped to 1.5 Fev1 (approx 42%) so I start ANOTHER course of oral antibiotics.

I leave the hospital do my two weeks course but over the course of the two weeks I feel myself becoming more and more sick by the day, im exhausted and struggling just to get through the day without falling asleep and even simple things like going up and down stairs are difficult and I cannot do any physical exercise at all. I just know somethings a miss Ive had this gut instinct ever since the third week of IV treatment that something was being missed.

This is where the mental exhaustion and beating really take its toll. You just go in to overdrive in your head.

Whats going on?

What have I missed?

What have I done Wrong?

Is it me causing the problem?

Is there permanent damage?

WHAT THE BLOODY HELL IS GOING ON?

So after six weeks of going through IVS and oral antibiotics and multiple check ups and tests and looking through results I feel and im sure the doctors feel at a lose. What is causing me so much grief?

Can you see why living with CF is a constant headache especially when things aint going well.

I was really struggling to find any positivity in all this. I mean there wasn’t any positivity at all.

I’d gone from feeling sick in April doing all the treatments and tests and exercise to now being nearly the end of June and feeling 10x worse than I did before I even did the IVS.

What the, oh I cant tell you how frustrating this all feels even typing this now it makes me angry.

So I go back to the hospital AGAIN about the 3rd week in June and I walk in do my lung function and well surprise surprise its bloody dropped AGAIN im now down to 1.4FEV1 (approx 40%)

I could feel it was going to happen but im still deflated. Its the question thats been keeping me awake and causing my some anger WHAT IS GOING ON?

And then, a feeling of hope as my CF nurse turns to me and says “ So I can see your not happy, We have found something in your sputum test we did the other week, MRSA is showing up in your sputum results again”.

And all of a sudden all the sickness and feelings of tiredness and exhaustion and the coughing and the way it made me feel starts to make sense. Im feeling how I did when I last grew this infection when it knocked me on my arse a few years back, the only good thing was it wasn’t quite as bad in its symptoms like it was last time, I mean last time I grew MRSA on the lungs I was pretty much stuck in bed for a couple weeks, the only reason I can think I wasn’t in this situation in fact im convinced the reason why I had been able to keep going for so long when clearly the MRSA had been kicking me for quite a few weeks (i think ive had the infection since I was on IVS) is because I'm on Orkambi which has been a real life changer for me. Anyway thats a story for another day. 

All I will say now is Orkambi needs to be made available to every eligible CF patient.

Anyway as soon as the CF nurse says that I feel a little relief to finally have an answer to the constant question thats been causing me so much grief but im still cautious. 

But in my normal stubbornness I immediately reply “ I don’t want to do IV treatment I don’t think I can handle it right now Im knackered”. I honestly cant put in to words how low and down I felt about the possibility of doing a third IV Stint within the space of 7 months. And luckily I think the CF nurse had already seen this coming as they tell me they’ve already put a plan together for me to do an oral antibiotic course to try and eradicate the MRSA infection but If it doesn’t work then I will need to do IVS.

This means 8 weeks of tablets but honestly I didn’t care about how long it would be for I was just happy to have a plan in place and answers to why I was feeling ill and more importantly hope that I can finally start to turn things around and have something to try and tackle this infection and try to get back to being me.

8 weeks is a bloody long time but its given me plenty of time to plan for exercise training and with the help of the tablets hopefully get better and work towards getting my 50% lung function back.

Ill be honest I was right at the end of my tether with it all and I was really struggling to keep faith that things would get sorted. I was feeling down and out. 

Living with CF is an utter head fuck at times, Im not sure I can put in to words how it takes me feel sometimes when im in a situation like this.

Any way I leave hospital and I think “fuck it im glad I know whats lurking down there, A couple days rest to let these tablets kick in then im getting off my arse and im getting back in to training for my swim challenge to September”

I take a few days out and to be honest the tablets kind of knocked me ut at first I pretty much slept ALOT whilst still trying to work and handle life in general. I do the zombie look quite well I think.

And more importantly In the first couple days I get my gym membership sorted and put together an ambitious training plan to push myself over the next few weeks to try and give these tablets the best chance possible to work and hopefully start to work their magic on my lungs.

Lets cut a long story short (yes I know ive waffled on already)

So im now 2 weeks in to the 8 weeks oral antibiotic treatment plan and I had to visit hospital for a check up and to see how im getting on. I definitely feel like ive improved and im working my arse off in the pool with my swim training to get ready for september. Don’t get me wrong Im still a long way off feeling myself especially mentally but I feel things are on the up but I was still cautious 

I walk in to hospital after having had virtually no sleep and feeling knackered, im still struggling with exhaustion but not to the degree I was two weeks ago.

Whenever I go to hospital its always the same feeling of nerves but I always enjoy seeing the CF team and chatting about things.

We discuss how im feeling and the usual questions we have to go through. Hows your bowels? Are you coughing? Whats your phlegm like? Headaches? Appetite?

I am getting random headaches a lot at the moment and dizzy spells but I can at least say my phlegm has reduced and is moving easier, im still tired but my body is dealing with a lot so thats bound to happen. The headaches are a tad concerning but the team will keep a close eye on me and my liver levels are still hoovering a bit higher than they’d like but thats a work in progress and for the foreseeable future I have given up drinking because I know my liver is ever so slightly important and it needs all the help it can get (notice my slight sarcasm there) plus after drinking im suffering with a kind of vertigo feeling which is a bit worrying so the doctors advise not to drink on the tablets as they are quite strong and more than likely causing the problems im feeling.

I dont intend to try drinking at least until ive finished my antibiotics. (Although if England make the world cup final I may just have to suffer with the vertigo feeling after celebrating the final, its worth the risk haha)

And I tell the team ive managed quite a bit of exercise the last two weeks and noticing an improvement physically and within myself im feeling positive but ill stay reserved until I do my lung function.

So out comes the lung function machine and I choose to blow the candles out as im blowing (dont ask)

Anyway lets cut a long story short. My results show that finally FINALLY that after all these weeks and months of trying and failing and my lung function slowly decreasing I may have finally changed the pattern of things.

My results show that my lung function is back to 1.6FEV1 or for me in simple terms its back to 45%.

Have I finally reversed this downward trend? I Let myself have a little smile. A small victory in this moment after many months of feeling lost and losing my patience with it all.

I was really starting to feel defeated. Actually I was feeling more than that. I wasn’t starting to lose faith in myself and wondering what I was doing wrong. Why couldn’t I stop things getting worse??

So many emotions had been going through my mind over the last few weeks and months I was becoming resigned to negativity. And its hard to come back from that. Im just lucky that I have some many positives to draw strength from and somehow even when Im down something refuses to let me stay feeling like that an inner strength that seems to come out of me when up against the odds.

Its difficult to explain how that makes me feel when im going through all that but even when im down after. Short period of time things seems to change and I start to bring myself back up.

I think it may be anger. Im not saying im an angry person on the outside but inside me when things are not going my way something inside me builds up and pushes me to get up and push myself. People say to me slow down rest up and get better but thats not what im about I cant sit down and do nothing because mentally I feel like im not doing something to help myself. Even if it could be bad for me I have to be doing something, I have to be moving.

And it seems that this attitude of mine to never stop is just starting to come good again.

Its been a long long few months and weeks on these new tablets worrying things were never going to work and mentally I was beat especially at the thoughts of having to do more IVS, im just not strong enough yet to do it. And thats why I would rather do the tablets for 8 to 10 weeks than IVS for 2 weeks. Whilst doing those tablets I still have the freedom to go train and workout and id rather push myself training physically and feel my body ache from trying too hard than feel the mental pain IVs makes me feel.

I just hope the next few weeks that attitude pays off and gives me the results I want or ill have no choice but to do IVS. I just wont prepare myself for that as that would be like conceding defeat.

Thanks for reading