Struggling – life with a chronic illness: Cystic Fibrosis

I have been unsure whether i wanted to write or share this post, but i felt i wanted and needed to share my thoughts.

After Mondays appointment at the hospital with my CF doctor it just sort of clicked for me how much i have been struggling. I have tried to suppress the feelings and thoughts i have had, but on Monday i realised i can’t. Especially not if i want to make a change.

Recently i have been struggling alot with my chronic illness – Cystic Fibrosis. I feel like i am 13 years old again and want to scream that i am normal, just like everyone else. I feel like the 12/13 year old who sat on the stairs crying because i didn’t want to be abnormal. I didn’t want to have this illness. I didn’t want to have to take medications everyday and do inhalers that take time each day. Most of all… i wanted to just be normal and like everyone else.

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Of course, now when i am older i know that so many people have different illnesses, and i am lucky that i have a rather mild form of CF. Some people with this ilness spend their lives in hospital, so i am lucky in that way. But it doesn’t take away my struggle or my feelings.

Recently it has gotten alot harder to breathe. Both due to the extreme heat which has made it hard for me to breathe deep and has limited my capability to exercise, which in turn makes my breathing and CF worse. So it is a dark circle where if i skip exercising it makes my CF worse and that in turn makes it even harder to get back into doing cardio.

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Recently it has been a real struggle to breathe. Imagine having a belt around half your lungs so that you can’t breath all the way in, and at the same time breathing through a straw…. that’s how it feels for me all the time. For the first time in my life i have begun waking up coughing in my sleep, and for the first time in my life i can actually sort of relate to the feeling of drowning from the inside, which is how some people describe Cystic Fibrosis. Because that is how i feel at the moment.

Instead of this dip in my health making me motivated to make a change and really focus on getting back on track and improving my health, it has made me less motivated. I have just felt like… “what is the point?”. Why even bother – it most likely won’t make a difference. So instead of taking my medication and doing my inhalers i have decided to be like my 12 year old self who began to rebel and just think ” f**k it”.

That of course has made my health and breathing decline and it does scare me to not be able to breath. To constantly be coughing and have people at the gym tell me i shouldn’t workout if i am sick (when infact working out is one of the things helping me and that my coughing isn’t contagious.)

Sometimes i wish i could just put a label on my head that says i have CF and have an illness so that people would know… and wouldn’t just think i am walking around coughing and being contagious.

On Monday i got my results back from all the various tests i did in May/June, and the results were as expected…. not as great as they have been or could be. A slow decline in health and lung function. My bone density being affected, which could also be due to hormones. My blood tests did come back good though and no deficiences, which is a good thing.

For a while my CF doctor has asked me if i want to talk to a psychologist which is part of the CF team, and each time i have declined. I don’t want to talk to someone, i don’t need help.

But for the first time i decided to say yes….  to say that yes, i do infact want to meet the psychologist. I don’t know when. I don’t know if i will go. I might cancel just like i have done many times in the past… but maybe, just maybe i will go and get help.

I am struggling with my illness. Both physically and mentally. My decline in health and breathing is affecting my mentally and physically. I feel tired. I don’t want this illness anymore, i just want to be able to breathe like everyone else and not have a constant struggle with one of the most basic human things.

I know i am not alone in having a chronic illness – everyone has their struggles. But we all have our right to struggle and find that sometimes our struggles are just too much.

Part of me just wants to continue saying “f**k it” and disregard everything with medication and inhalers, and the other part of me is thinking…. what if i try to do my very best for the next 3 weeks before my next appointment. What if i could just turn things around and make things better? Just like with recovery from eating disorders and depression, it is about making the choice and the change. Breaking the negative cycles and habits you have gotten into.

I need to try to find my motivation – which of course should be increased health and better well being. But i might need to find some type of outer motivation as well such as a holiday or a new tattoo if i can manage to turn things around with my health and get back into healthy habits and routines with my CF.

I may study health and promote health and healthy habits, but i don’t always do things according to the books. Motivation and changing behaviour isn’t always easy.

I am struggling at the moment and feel extremely low on energy and just low on motivation and life motivation. But i hope that i will turn things around that with improving my physical health i can also help improve my mental health.

Being strong doesn’t always mean being alone and fighting in silence, sometimes you need to reach out to others and just tell them how much you are struggling so you can get help from others.

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19 Comments Add yours

  1. I hope sharing here helps you. Dealing with a chronic illness is not easy because it never goes away. Give yourself a break, but know you must get back on track. Set a reward like you said that’s a great idea. Take care, keep writing and sharing. 😊

    Liked by 1 person

    1. Thank you so much. It does suck that it is an illness i will always have, but i have dealt with it for 22 years already, so i know i can deal with it for another xx years. From time to time i get these dips though, but hopefully it will go away quickly!

      Like

  2. Sophie says:

    I’m so sorry for you, it must be so tough. Life’s not always fair 😦 I really really hope that you take help from the psychologist, follow your own advice that you give to others. You’re not strong by trying to fix things on your own, you’re strong if you reach out and let other people help you ❤ I know you can do this!

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    1. Thank you so much for your kind words. I don’t really know what i need right now, whether it is a psychologist or just to try to find my own motivation. I know i can’t ever be free of my CF – which is the thing bothering me the most – but just like with past illnesses, i can atleast make choices to make life better and not worse!

      Like

  3. M. says:

    Thank you so much for writing, Izzy. I do feel for you. I really hope you do find people to trust and share these things with more.

    Like

  4. Lily says:

    I am so sorry to hear that you are struggling in that way, I wish I could help you, like the way you inspire struggling people. I hope you’ll get better, and I believe in you! And I guess I am safe to say that all your readers wish you all the best!

    Like

    1. Thank you so much for your kind words. I hope things will get better sooner rather than later, and even if i may never be free of my illness i can atleast make choices that will benefit me and make it better, not worse!

      Like

  5. Paola Petri Ortiz says:

    I’m so sorry you’re struggling. You give so much good to the world that you deserve to have that good in your life too. I know you’re a very strong person and have battled a lot of difficult -almost impossible- things in the past, so I believe 100% that you can do it again this time. Sending love and strength for you!

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    1. Thank you so much for your kind words. Right now this feels like a very different battle than before because now it is my physical health that is not so great, but i know that i can still make certain choices and changes to make things better even if i can never be free of the illness i can atleast try to make the symptoms less and life better!

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  6. Silverio says:

    I believe you have already a step forward to share with the blogosphere and that is not easy too. If exercise is what you like and what helps you to feel better don’t stop, set goals and rewards!

    Like

  7. This is exactly what I needed to read. I also have CF and recently my health has been a rollercoaster. It’s exhausting, frustrating and defeating. I came here searching for someone, ANYONE who can relate to “the” struggle. I also feel like “why bother” and giving a giant middle finger to CF. Thank you for being real and sharing your feeling about struggling with this disease, it has greatly helped me feel like I’m not alone in feeling this way as well. I do hope you are feeling better and keep on fighting the fight.
    Sending a germ-free hug your way.

    Like

  8. Sometimes just voicing these fears and frustrations can be helpful! Writing is the most cathartic thing I’ve found – its my therapy! I think everything you’ve described is completely normal. I hope you do get to talk with the psychologist and that you find it beneficial. Best of luck!

    Like

  9. Art&Roses says:

    In struggling with this as well right now, especially how you described your 12/13 year old self. I hate feeling so hopeless and just wanting to me normal, thanks for sharing, I’m sending virtual hugs❤ stay strong!

    Like

  10. kelseyliz says:

    Hi! I also have CF, and I really enjoyed reading your post. It was raw…and real. You have a beautiful gift for writing. I hope things are looking, we are warriors!

    Like

    1. Thank you so much. Yes, we definitely are warriors… i don’t think many actually realise what a daily struggle it is to have CF. Infact many have said they didn’t even know anything about CF until they read my post about it/heard me talking about it and sharing my struggle.

      Liked by 1 person

  11. Lots of hugs and thoughts coming your way. I’ve got CF too and like you it’s a milder form. I’ve just started my own blog. Look forward to following your stories X

    Like

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