CF Friends, I wouldn't be without them

Well its been a while

18 months since I have posted a blog of any sort. To be honest ive had so much going on mentally and physically I didn't feel in the right frame of mind to write and post.

A lot has happened in 18 months. 

In that time Ive managed to complete 2 big physical challenges including training for them and achieving some amazing goals which is the plusses of the last 18 months, the negatives? I managed to train and try and keep a good level of fitness and complete those challenges all whilst going through 4 intravenous antibiotic admissions which luckily i'm able to do from home but that was the best part of 10 weeks of my life consumed with multiple hospital visits for tests, doctors appointments, scans, blood tests, you name it ive been through it. Not to mention the 4 times a day throughout that time having to mix and administer the iv antibiotics. I also about 12 months ago had an embolisation operation to stem some very severe bleeds on my lungs. That doesn’t even cover any of the mental toll its put on me and the counselling ive been through to keep some sort of sanity and still continue to go through today. CF is as much a physical battle as it is a mental battle 

I then started to suffer lung bleeds persistently from about November 2019. Now i'm used to lung bleeds but these were next level. It started off jus one or two small bleeds which I'm used to and then all of a sudden it escalated fast and I had a couple that were so bad that as they occurred I became completely disabled, fixed to the spot my arms and legs went heavy I couldn't breathe or talk, my senses would go and then POP you'd feel the blood vessel or vessels pop you'd get the sensation of fluids in your chest or throat and the next thing you know your coughing up or in my case a few times vomiting blood to clear my lungs and airways. As they got bigger it got very distressing as i wasn't used to it. The end of January arrived and i was having scans to try and look further in to these bleeds. And 10 days later I would be on the operating table. I didn't know it at the time but my bleeds were multiple and very severe. Im not sure some days how I managed to function and keep fit throughout this period of time. I was still doing exercise constantly to try and clear my lungs but I wasn't aware of how risky it was to keep pushing myself to the extent that I was training for my physical challenges. My stubbornness was telling me keep going keep training don't slow down. You need to exercise so you don't fall ill further. The problem is for me when a doctor says im poorly I need to be clear thats like a trigger point for me, my mental health and flip very quickly so to prevent that happening I go in to full on training mode, I put all my efforts in to try and beat whatever bugs im dealing with and do my best to try and clear my chest through cardio/weight training. I will do anything possible to help my health and more importantly it helps keep my mental health stable.

I found out whilst on the operating table I had 13 Bleeds in total which needed stemming. I was shocked. If i had known how bad things were i'm not sure how I would have reacted and i'm glad my CF team hadn't pre-warned me because they know me so well they know id of been freaking out over it whilst waiting. They did tell me to be careful and not go ott in the gym but I had no idea how bad my lungs were at that point. 

And this is where the title for this blog comes from.

Why I think it so important CF friends

My CF friends are vital to me and my sometimes daily struggles and thats why i'm a firm believer that people with CF stick together, become friends and support one another. Because without my CF friends around me and to help me understand things I would have lost my mind and maybe have backed out from having the operation I needed which If i hadn't of had I may well of suffered permanent damage to my lungs or worse. 

I feel that CF forms a bond between CFERS like nothing else. We all have different fights to fight but we all share the same battles, the same struggles but also similar attitudes to life and fighting cystic fibrosis. CF doesn’t force us together as friends but it helps us create bonds like no other friendships and losses and hard times only help to form stronger ties, I believe it helps grow friendships between fellow CFS like no other friendships we have. Its unique, Its compassionate, its kind, caring and loving friends that without CF I don’t think friendships like this would happen. 

The strength and support we all give one another and more importantly the knowledge and understanding we have about cf and our own fights enables us to talk to one another and help one another in a way that a friendships with someone who doesn’t have cf just would not be able to understand or help get us through certain things.

I have a few friends with CF that I have grown up with and some that have come in to my life over the past few years who I value dearly, In fact love them tremendously. We may not be able to see each-other face to face thanks to CF but they are always there for me just a phone call or message away and when I'm struggling or worried about something they are quickly on hand to help me learn about new experiences about CF and more importantly help me make big decisions about treatment or in my recent example help me to keep calm and go ahead with the operation.

And in this blog I want to talk about one friendship in particular that until recently I didn’t know how much and for how long I had valued throughout my life. Regardless of how much or how little we talked we was always there for one another.

This one friend in-particular I have known since we were only a few years old. Before the whole cross infections research and knowledge was known as kids we would attend the same cf clinics, sitting in the same room all playing together and on the kids CF ward where I went we would all mix and play and it made hospital so much more fun. As we transitioned in to the adult CF units and had to avoid contact we drifted apart for a couple years for no major reason other than we were both living our lives and the real world takes over. But the last 10 years we have chatted about so much to do with CF, about life and living it with CF and we have always been there for one another when one of us had a question about CF. Infact the last few years id say it's been more me asking her for advice and chatting about CF whenever one of us had a problem or a new experience we would message and chat or talk about the ward and new treatments. A lot of people won’t understand it but having a friend like that in a situation like ours is invaluable. Like good friendships even if we didn’t speak for a while as soon as one of us would message it was like no time had passed at all. 

Some good things would get discussed, some bad things and some scary things. It was always honest conversations no matter how scary some things might be.

And thanks to her over the last 2 years in particular she has changed my perception on CF so much that she has changed how I plan to live my future with CF.

In December 2018/January 2019 I started to talk to her about the bleeds I was having. I knew she had been through similar. As had a few of my friends with CF had all been through this experience and between them they helped me to see things clearly and made me realise that it was vital I went through with it. Between her and 2 other friends with CF who had been through the operation they made me see sense they kept me calm. They never lied to me they told me the brutal truth and that’s what I wanted to hear. I do not sugar coat anything when it comes to my health. They explained about the pain and the feelings and what I would and wouldn’t be able to do. Knowledge is power and by feeding me this knowledge they helped me understand what it was all about and that yes I would experience quite a bit of pain but it was for the good of my health.

Those 3 CF friends will know who they are and I an indebted to them with changing my thoughts and my life by helping me realise I was strong enough to get through the operation. I never told them how scared I was of that operation but I never needed to tell them because they quickly extinguished my fears. Thank You

But it was this one particular friend that I’m talking about who has changed my life just beyond the operation.

You see for years since I was small enough to understand my health ive always said “if I reach 40 years old I will not have a lung transplant when I need one and I will pass away without going through all that” That was my wishes, my feelings but that was actually born through fear.

You see despite all these things I do to help my health and the picture of strength people may see on my social media I have a fear of CF. Not of dying from CF, I have a fear of transplant. 

I have felt for many years that I wouldn’t have the willpower or strength to get myself through the whole transplant procedure from assessment to the mental assessment and to actually going through the wait for the operation, the anticipation of it all and most of my fear stemmed from the fear of going through the recovery phase. 

I still feel like I may not have the strength and will power to get through it.

Sounds strange doesn’t it. Ive done all these physical challenges, pushed myself through training dedicated huge chunks of my life to these challenges, sacrificed so much, ive sacrificed relationships and love to live my life the way I do. And I would do it all over again to keep breathing. Funnily enough I rather like living. 

Yet I had feelings that I could never cope with the whole transplant procedure. And even now I still can’t explain why I feel this way. Its just one of those feelings you get that you can feel but you never know why.

But my friend started to help me see things differently. She had been through the assessment stage and was on the waiting list for new lungs and all I could think of was the fear of going through that. 

Yet my friend explained so much to me, the good, the bad, the waiting, what gets discussed, the fears she had but also more importantly the excitement of coming through the other side, to keep breathing, to keep having precious time with her family. She just wanted to live and I knew from the very first time we spoke nothing was going to stop her, she had her worries and fears but never any doubts that she couldn’t get through it.

I could sense the fear was necessary to go through and get to where she wanted to be and I could see that I had been thinking about this whole thing wrong. Id let the negatives overcome me.And never even considered the positives. 

To keep on living

She just wanted to live no matter what it took. Every time we spoke or id ask a question no matter how silly she would try and give me as much information as she could even if she didn’t realise what she was saying it helped me to realise I was not looking at the bigger picture.

And its helped me to change my mind. 

Ive always looked at it by 40 I would have lived so much I don’t need to go on and do anymore after that. Because of CF and the time I was born in I shouldn’t even be here now anyway so anything past the number in my head was a bonus. And then I could just say thank you and goodnight. Ive defied the odds to get to 34. But why wouldn’t I want to carry on?

Well after all the conversations with her and watching her journey ive changed my mind.

Whatever age I get to I now don’t feel ready to take a bow and say goodnight.

Ive lived a good life, had lots to cherish and laugh about

And I still want more

I asked my CF team last year to start discussing the process with me now, start discussing my fears with a counsellor soon to start working it all out.

At the moment I don’t need a transplant and I feel it won’t be needed for a while but when the time comes and if the opportunity comes to prolong my life I want to be ready and prepared with all the knowledge available to make a decision based on what’s right for me. Not based on my fears. 

If I can carry on I will. No matter what I go through. I will continue on my journey. And if I have to go through transplant I will prepare for it like its my next big challenge. And Ive never been afraid to fail at everything ive took on so why start now.

And this is why I believe having friends with illnesses similar to ours is so important. And yes we have to respect cross infection advice these days but there’s so much in the way of technology that we can become friends with multiple people fighting similar battles thanks to social media, email, video calls, messages, phone calls. Now is the absolute best time to be alive and fighting for our health. Because together we can all provide support, love, and friendship.

If you feel alone and need to talk and don’t feel like you have a friend to talk to I will always be here to talk to anyone who needs a friend, a comforting voice or advice.

If you can support one another, make friends.

There is so much opportunity to reach out to one another and its great to see how far and wide friendships in the social media world can reach and how much support it can offer to many. Myself included.

So if you can, make friends, ask for help if you need it. Offer help if you can, Even if your offer or your social media post(s) only helps one person with your advice or knowledge or positivity on a status or picture you put up online, then that is still one person who feels more positive or inspired and that one person could then go on to help someone else. Its all about passing happiness, love, kindness and care forward. Sometimes we give it, sometimes we receive it. Its a wonderful thing to feel and see when support is there. Ive made friends so much more since social media and technology made it possible.

And thats why I feel the CF community and friendships that come of that can help so many people.

One person helped me to see something different for the better. And you might just be able to do the same for someone else in our situation.

I need to add one last thing to this blog post but before I say it I do not in any way want to see this as a negative before I say this final part because despite what I’m about to say it hasn’t changed my mind for the worse I will still go ahead with a transplant when the time is right thanks to my wonderful friends advice and courage she has shown me. She’s convinced me in in such simple way

No matter what happens, no matter the fears, no matter the trouble, the pain or the struggle I may have to face

I just want to live

Unfortunately my friend lost her fight whilst on her transplant journey and I never got to ask her how that first new breath felt. 

As I type this final part I’m sat in tears thinking back to that day I was told that she had gone. I never asked her or told her how much I valued her thoughts and advice. And she may never know how much I saw her as such an important friend to me. 

And thanks to her I have seen things in such a different way for so many good reasons. I will one day owe my life changing moment to her.

And being at her funeral and seeing how many people turned up for her it was very clear she had touched so many peoples lives and I’m not at all surprised.

This is for Gemma, Thank You  

My Health will always come first

I felt this blog needed writing because I have had this pent up frustration about how I feel ive been looked at and frowned at in the past for my choices 

I don't know why this is so hard for some people to accept that have been a part of my life in the past but my health will always come first. Yes some find that hard to understand but let me explain in details as that just sounds like a silly statement to make without examples and support to back it up

So in this blog I'm going to have a rant about the negatives ive experienced and then show why you should always hold on to the positive people around you 

People will knock you even those close to you

In the past ive always had many supportive people around me from family to close friends even strangers who have all been lovely to me and supported me and even sponsored me with the many challenges ive done and I don’t think thank you can ever cover how grateful I am to those people in my life

BUT

And here comes the but 

Ive had some people in my life even some who were supposed to love and support me question why I put so many hours in to my challenges training and trying to raise awareness of cystic fibrosis and why I want to try and inspire others.

And it has always confused me why people have acted like that towards me

Ive had people in the past say to me “oh but why do you put so many hours in to your physical training ive not seen much of you lately” and ive even had some people get cross with me if ive been training or changed plans because ive felt ill and needed to train to try and help fend off a bug or just to make me feel better physically and also mentally. 

The people who have done this to me ive removed from my life, made sacrifices because if they cant see why I'm doing it then why should I bother having to keep explaining it?

Why do I do so much for my health and charity and to try and raise awareness?

It simple if I don’t go to the gym or go swimming or go out on my bike I couldn’t keep fighting against cystic fibrosis I would fall sick quicker and then not have the strength to fight against infections which could take longer to recover from or even worse, the next chest infection could kill me. So its simple

I put the effort in to stay alive for longer. Its not for fun or vanity, its a serious but simple statement. I put the hours in so I can get more hours out of life itself. 

Yes sometimes I go to the gym or disappear for a few hours on my bike or lake swimming but I do it not just for myself but also so others can benefit from more time with me if they so wish to do so.

Its not like im disappearing to the pub or on the lash for days on end. Im trying to stay alive.

And thats why im annoyed by people who have moaned at me in the past. They want me around for longer and say things like “oh you’ll live for years yet “but then used to get the hump if I was busy with training. I cant live for longer if I don’t get on with things and try and stay healthy.

What is it people want from me? They want me to live longer! Yet ive had people get angry at me and take digs for me when ive said im going training. Its simple logic 

IF you want me around for longer you are going to have to give me and time and support I need to be able to have my own time to go training, to go to the gym, to go running, to go biking, to go swimming.

On the positive side and how I flip these niggles in to driving me on, I hate when someone moans at me because I want to do something good for my health and when I get annoyed with people like that ive known myself to go and train harder and for longer.

One day I can remember doing an indoor bike session I was at home alone on my turbo trainer putting in a few miles and someone I was with at the time came to my house and moaned and was like “do you ever stop pedalling on that bloody bike?” So you know what I did the next day cancelled our plans and I went out on a 4 and half hour bike ride and did something like 50 miles because I was so angry I didn’t want to be around anyone incase I snapped and said something I regretted.

Maybe this is why ive chosen to be single for so long?

Truth is Im very picky when it comes to choosing people that I want in my life and theres good reason for it. 

In the past people Ive loved and thought loved me gave me the feeling at times that they couldn’t have given two shits to what I was doing with my physical challenges and how I wanted to try and help others be it through health campaigns with the CF trust or raising money for charity or trying to just raise awareness of my illness. 

And do you know what it took me a long time to realise who were the negative people in my life and to say thanks but no thanks I don’t want to know you anymore. 

I used to find it hard to see these things and get rid of negatives but as ive got older and wiser ive found it easy to put myself first. It was something I struggled to do for many years and I could never see it until certain things happened in my life. People may find this silly but one thing I did which id never done before was go for a tarot card reading and it really opened my eyes to things. She basically said theres nothing good coming of my life when I never put myself first and im scared to push the wrong people away. And it made me think a lot about that and although I kind of already knew that it made me think “if someone I don’t even know thinks im being stupid and hiding and not being myself then why couldn’t I see that?”

What have I done to change that and push negative things away?

So over the last few years ive done many things to change my life into something full of positives even when im feeling down or negative about myself or my situation I always have positive things to be able to feed off and pick myself back up again.

Over the last couple years ive sacrificed a lot of things, Firstly theres the training I sacrificed time with friends and loved ones and even relationships to put my health first and make plenty of time to go training and stick to a good plan that I feel benefits my health and not one of my friends has moaned when ive said no to things because im out on my bike or im at a swimming session. Ive given up on love and even ended relationships because I felt like always I wasn’t being shown what I was giving and because some people just couldn’t support what I wanted to do with my life be it on purpose or some they didn’t even know they were pushing me away but I wasn’t going to be somebodies mug. Why should I give someone my time when they cant let me have a little of my own to stay healthy so I can be around for them longer?

I mean they could of come with me if they wanted to and do some fitness things together would have been nice. Or even sat and supported me and enjoyed a nice walk whilst I went running in front. Not hard to give someone a bit of encouragement and support is it.

And Ill be honest ive not found that yet. I get some people don’t do it on purpose but id like to have someone like that in my life. Like I say being part of my life isn’t always easy and its not for everyone. 

I need someone with a strong heart. The faint may not apply within haha

Being in my life isn’t for everyone its not easy and I can be difficult but thats because if I don’t feel loved and supported then it isn’t going to end well for that person they wont be in my life for long.

Ive changed a lot of my negatives and ive started letting more positive people in to my life. I was never arrogant but sometimes I didn’t appreciate what amazing things friends and family and even strangers gave me in terms of support and love but now I feed off it.

I regularly bore people with fitness posts and videos about how my training is going for new challenges and although some people joke and say christ you post a lot of rubbish they are also the first people when im having a bad day to say “please rest up take care of yourself and tell me how strong I am and I cant thank all you lovely people enough for the messages ive received the phone calls ive had and cards and donations to my causes that give me such a boost so I want to say a simple line here.

Thank you to each and everyone of you friends and strangers alike that send me messages of love and support they are all gratefully received and used as motivation to keep pushing myself and to stay positive none of you are forgotten and every message of support is read with love and a smile.

I also wont listen to negative people who mock me or knock me for what im trying to achieve. Be that strangers, friends or even people who are supposed to be close to me or love me, Negative hits used to really affect me but over time I have grown strong against it and now I find it very easy to say no to negative people and use it as motivation be it people who I thought were friends and even dates ive had if I don’t get a good feeling or someone doesn’t fill me with good vibes to make me think yep they’ll support me through good and bad ill not even consider a future date with that person. Sometimes I get that others have things going on in their life too and if I think things wont work just because we cant support each other I realise its best to go our separate ways as in times of bad health I may not be able to be the person they need and vice versa. Its all about finding the right balance and sometimes that isn’t anyone ones fault its just best to leave it instead of try for the wrong reasons. Im not a horrible man I just know what I feel strongly about and what im looking for.

If you cant support what I do why should I let you even be in my life or listen to your opinion if its just disrespectful.

Why have I stayed single or not let myself get close to someone? Or let a new partner in to my life over the last few years

Its simple really ive become strong willed and more decisive in what im looking for because of past partners and dates that have turned into negatives or not supported me.

Like the example I gave earlier ive dated people who have shown no interest in what im doing and not even given me a little bit of support on days where ive needed it and even had people who I thought loved me actually get cross with me because im trying to improve my health and keep fighting fit. 

And its those people who have made me become really cautious when it comes to dating people and allowing people in to my life

Infact I'm grateful for the bad experiences ive had because its just helped me to see things in a better way and not waste my time on things that will end up going nowhere or that could hurt me. 

And even people I used to date or were partners still think they know what I go through just because they knew me at some point in my life when the truth is they paid hardly any attention back then to what I was going through or how I was trying to better myself then so how would they even know what its like now when my health has changed so much over recent years? 

Truth is they have an opinion that I wish not to listen to and I don’t need look for those kind of people in my future plans either. 

I want a simple life with someone who isn’t going to put me down. 

But I wont just pick anyone for the sake of it. Im in no rush im not one of these people who can jump from person to person, I an very analytical I look at everything in my own way and ill take my time until I have the right answers or have any problems figured out in my head.

I dont want to force myself to find love, I just want it to happen with the right person without looking for it. The best things always turn up when you least expect it.

My life is complicated enough so I don’t need someone coming in and not being understanding of my faults and understanding why I do all the training things I do and why I want to try and help others be it through my honest blog posts or through social media or through charity challenges trying to raise a few quid to help others.

Why is it so hard to understand that I just want to try and stay healthy and fight against my illness for as long as possible and try and give something positive back to others. 

I didn’t get to where I am today without help and I want to give something back by helping others in need be it in a small or a big way Im not looking for a running partner or a swim buddy or a saddle lover to go on rides with. 

I just want a simple relationship that when things get complicated they just hold my hand and when im well and I want to improve myself so I can fight against my illness for longer they’ll just say “okay have fun and ill see you when you get back” Not come in and moan because I have my running shoes on or because im many miles away from home on my bike because the only reason I do all my fitness stuff and challenges isn’t just to benefit me its to benefit people around me. I cant love someone when im dead can I? 

But by doing all my challenges ill be around longer to enjoy a fulfilled life with someone 

Give me the time I need and ill give those kind people around me all the free time I have to enjoy a laugh and make life fun.

I dont ask a lot although some people im sure make out like im asking the earth 

When all I ask from anyone in my life be it friends loved ones or new people and strangers in my is a bit of support and most importantly understanding or at least trying to understand what I go through.

I have good days and bad days, strong times and times when im weak. And when the good is here I can give people in my life the best I have to give but when im down or sick or tired and feeling a little lost I won’t ask much of anyone in my life and sometimes I hide a lot but if someone can just look at me in my darkest hours and try and shed some light on what im dealing with then thats all I can really ask for.

People ive now moved out of my life I did so because I felt they either could not cope with what my future was going to bring, the good and bad. I don’t want to be a burden on people and thats how ive felt with some people around me in the past and I moved myself out of those situations to see more positives in the things I do in my life, to make things feel more fulfilled for myself.

A little understanding goes a long way to making my life feel easier when im trying to be there for others even if im struggling myself.  

When I'm in my darkest moments don’t block out the light. 

When Im laughing I hope you can laugh with me 

Its taken a long time but I feel I have good reasons to push negatives away and not let bad people drag me down. I only want t feel good things , like support, kind words, warm embraces, loving people

Ive become stronger from those negative experiences and ive learnt a lot

One day I will have to cry my last tears and all I want is to see those I have allowed in my life to give me one last smile and support my last moments with no bad feelings

Only love

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