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
