Health and Wellbeing

Anxiety & Depression with CF

Hi Everyone,

This isn’t a guide because honestly, I’m not a therapist and the only person you should be listening to regarding anxiety and depression is a trained professional or people you trust rather than random people on the internet.

As you would honestly expect with anyone who has a long term terminal illness, it comes with it’s fair share of mental turmoils as well. From a genetic point, I’ve had a predisposition for anxiety so having CF really didn’t help me there. My anxiety is mostly under control now-a-days but it still gets me sometimes and whenever I go into hospital I need anti-anxiety pills to sleep at night. It’s difficult and taxing but if you’re facing these issues, don’t suffer alone. My boyfriend is an amazing support system for me and he understands that my anxiety may not be caused by what it is coming out as (does that make sense? I mean like if I get anxious about something silly, it will just be the first thing my anxiety has latched onto). As anyone who has anxiety or knows anything about it will tell you, it is entirely irrational and your body physically cannot sustain that level of anxiety forever. Eventually, it reduces on its own and you feel better.

Depression is another thing us suffers have to deal with. This is a whole other thing which comes across in a fear of mortality (ironically), pessimism and a range of other fun additions to our lives. Depression, unfortunately, is just something that comes and goes. Like I said, the point of this post isn’t to provide advice, just to say that this is a thing that we all go through, no one is alone.

If you want a take home message after suffering with either of these mental health problems, talk to a trained professional or people who are close to you. No matter what happens, feelings come and go. The best thing is to find a way to deal with it when it happens and enjoy the time you have when it’s not there.

~S

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Thoughts

Ways CF has ruined my life

So I’m sat in the hospital. Its 12:35am and all I’m thinking is, why did this have to happen to me. I’m sure we all think that about many different things in our lives but CFer’s know this thought all too well. So let’s list:

  1. You miss out on events because you’re ill/in hospital/suffering side effects from medication/symptomatic
  2. You feel like you don’t have time to do things. Anything. Because all your time is taken up through medication and hospital trips
  3. It ruins your self-image. Not gonna lie, before I had my gastrostomy, I liked my stomach. Weirdly enough it was probably my favourite part of myself. I liked being thin and I liked how I looked. Flash forward to now, a healthier weight (which yes I know is good for me and I wouldn’t change it) but I have to work and feeling good about myself. Scarred on both my arms and my stomach, soon to be my collar as well when I get a port. It feels like this isn’t so invisible anymore.
  4. You can’t plan for the future. I think forward a lot. I want kids and a house and a job and a degree and all of these things that normal people get. I want to grow old and know what I would look like with grey hair and wrinkles but the likelihood is I won’t get that. It’s more about looking at what you have and currently, I have 7 more years of education looking at me and honestly, I can only hope that I make my way through it. But I can’t drop out and travel because there’s a chance that I will survive and in that case, I want to give myself the best, most stable life that I can have.

To put it bluntly, there are many things that CF has done to me that’s not just slowly destroying my body and it bloody sucks. But there are some things it has done which I feel has made me a better person. Let’s put a positive spin on this and list them (and hope there’s more):

  1. I am more understanding. I feel like CF has given me the ability to empathise and be more caring towards other people.
  2. It has taught me to be organized and make sure I do my medications on time.
  3. It has shown me to appreciate my health for what little there is of it and to not take one breath for granted because the next one might just be that little bit harder.
  4. It’s allowed me to see who my true friends are. Those who stick beside me and those who fight with me are the ones I want to carry through my life with me, however short it may be.

Just a little thought pattern there for you. Felt like listing was important to me and maybe you can relate just a little to either the positives or the negatives.

Night

~S

Thoughts

My Reaction to Five Feet Apart

Hi Everyone,

So if you’re a fan of Riverdale, you will probably know Cole Sprouse. If not from there then almost definitely from The Suite Life on Disney Channel all those years ago. Anyway, recently, he released the official film poster for his latest film Five Feet Apart. This film is about 2 patients in a hospital with CF and they fall in love. Now, guess why I want to have an opinion here.

Honestly, I have two lots of opinions. Before I start however, I would just like to say that I am very pessimistic. At first glance, this film seems like a classic Hollywood trope of sick people falling in love and their illness is really just something to make it more dramatic. I had very mixed feelings after reading what little I did of it, where it came off as somewhat offensive to people who have these conditions and felt like, while it’s always good to gain more awareness of diseases such as CF, this was just going to be another ‘The Fault in our Stars”.

Then the trailer came out and honestly, my opinions changed a lot. It’s about a girl who is very pedantic about her medication waiting on the transplant list and a boy who doesn’t really care about his meds but is being forced to do them as he is still 17. They meet and fall in love and it’s all about the distance that they need to keep, being that they are CF patients. In this short clip which you can find on YouTube, we can see clear displays of ports, oxygen tubes, real ventilators rather than just oxygen tubes straight out of surgery and other very realistic aspects of living with CF. Being the pessimistic person that I am, I was still unsure as to how this movie was going to be. Obviously very corny but from the perspective of someone living through this disease, how realistic is it?

Now, I don’t know if you will know about this girl but an amazing inspiring person with Cystic Fibrosis actually consulted on the movie to make it more realistic. This person was Claire Wineland and unfortunately, just two days after receiving a transplant, she suffered a stroke and passed away. Her videos are still on YouTube if you would like to know more about her story and the amazing work that she did for CF.

After knowing that and watching the movie trailer, I have a lot more confidence that this is going to be realistic and while it will be corny and almost certainly make me burst into tears, I’m interested to see where it goes. Awareness raising is always good and while I am still wondering how much this film has romanticized this illness, I think it will be a good watch anyway (although my mum is insisting on watching it before me so she can tell me whether or not it would be a good idea for me to see it)

If you have any opinions about this trailer, let me know or if you’re going to see it next year then let me know what you think.

Hope you all have a good evening!

~S

Updates

Update #1

Hiya,

Long time no see! Sorry for the absence of posts over the last month, I’ve just moved out to University! Big step and there will be a guide coming on how to manage CF as well as Uni. Trust me, that one’s important.

Thought with my first post back I would give you a little update on what’s happened with me both health-wise and not. I’ve started writing for my university magazine. Have one article waiting to be published on the online monthly version and one article in the process of being written for print. It’s quite exciting and satisfying that someone else reads my writing on my opinions and enjoys reading it! I’ve always loved writing since I was a child so I think it would be a great stress relief for me to get back into.

In a similar vein to the magazine, I’ve started drafting a novel. I love writing fiction and I have always wanted to have a book of mine physically published. If you don’t know, which you probably don’t, when I was 12 a friend of mine and I worked together and self-published a book on amazon. It wasn’t the next Harry Potter or anything but it was fun and we enjoyed it and it made me feel like I did something. The novel I’m drafting at the moment is about a girl in her late teens with cystic fibrosis. The funny thing is that I actually planned this novel about 3 years ago but didn’t end up writing it and the plan I drew up is kind of what’s ended up happening to me so we’ll see where I take it now.

The thing with CF is it’s never out of your life completely. After rocking my longest time without hospitalization in 3 years, I now have IVs scheduled for 5th November. Wish me luck I guess. At least it gives me 2 weeks alone with my laptop and I should be able to get some writing done when I’m feeling okay.

Hope you guys are all doing well!

~S

Thoughts · Uncategorized

Sometimes…

Sometimes life is shit and you know what, I’m not going to counter that. Sometimes you think you’re having a great time and then people say some shit and you drop thirteen hundred feet to where you’ve tried to dig yourself out. And you know, sometimes the only way to fix it is sleep. Sometimes you just wanna sit in your room and cry yourself to sleep. Sometimes you want to shout and scream from the rooftops and other times you would rather just go back home, back to when life was simple. Back to when you didn’t realise people were inherently awful or that nothing in life is good. Back to people you know care about you, be it friends or family or a partner.

Sometimes, some of us are lucky enough to have these people. Sometimes, we lose them along the way and sometimes they find their way back.

Sometimes we think that all hope is lost and in the dead of night when the sun is still 7 hours away, that may be true. Sometimes trashy TV and crappy movies are all that pull us out. Sometimes we never make it out.

But other times we get there. Other times we pull ourselves through. Most of the time, things are always better once the sun has risen. Life moves on. The clouds part and really, nothing that happens to you is too big that the Earth will stop spinning, the sun will stop setting and the night will stop ending.

One thing is certain. Night will fall. Always…

The Whole Guide · Travel

A Cfer’s Guide to… Travelling With CF

Hiya,

So last week I got back from a week long trip to Croatia on a music tour in an orchestra. You’ll never guess what instrument I play… the FLUTE! Not very well I have to say but proud nonetheless with the fact that I can play an instrument which requires controlled breathing with a lung disease. Anyway, that’s not a story for now. What I really want to talk about it the fact I spent a week in another country completely in charge of my own meds for a long period of time on my own.

For any older people with CF, this may seem kind of arbitrary but as a new 18 year old, there has never been a time when I have had to do all of my medication on my own without an adult except this. Especially with my NTM diagnosis, I have become especially prudent with my medication so there wasn’t really anything I could cut out. To make sure everything was good for my trip, I had a clinic appointment with my doctors. In it we checked my lung function and discusses whether or not I would be okay without oxygen and my feed. Given I only have oxygen over night we thought it would be fine and going a short period of time without my feed isn’t normally an issue.

This left my actual medications. The night before I left, I had forgotten the fact that I take tablets more than once a day and therefore only had half as much as I needed. Fortunately I hadn’t left yet so quickly packed that up in the morning and didn’t have any other issues throughout the trip. That was because I sat with my mum and recited everything I did during the day in terms of medications about 8 times so we knew that I had everything.

Really nothing except routine will prepare you. I knew when I had to do things and how much of it I had to do and once I was underway, it was pretty easy. I would say the key is preparation. Talk to your doctors and make sure that everything is safe for you to travel and then just go. If you don’t do it now, when will you?

~S

Health and Wellbeing · The Whole Guide

A CFer’s Guide to… Shortened Life Expectancy

Hi everyone,

Wow, we’re already in July! Is it me or is this year flying past. Anyway, in today’s post I will be attempting to talk about dealing with the shortened life expectancy that comes with CF. Disclaimer, this post will be discussing death so if this causes any negative feelings or is a known trigger then stop reading now.

When my parents were told that I had CF back when I was just born, they were also told by doctors that if they could get me to 10 without a hospital admission they would be doing well. My first one was when I was 6 and then not again until I was about 10. I couldn’t possibly imagine what being told your child has CF is like and honestly, I wouldn’t want to. So speaking from my perspective and my perspective alone, shortened life expectancy is tough. We all have goals for the future. I want to get a degree, maybe a post-grad and at some point in my life have a family. I still plan for these things because you don’t know what will happen, but there is always a little part of your mind that asks “well what if?”. At the time of writing, the average life expectancy for someone with CF is 41. This is ever increasing as medicines advance and I can only hope that drugs like Orkambi help to lengthen my life span.

I’ve recently come to terms with the fact that I have an NTM infection. While this doesn’t affect my day-to-day life, it does contribute to some decline in my lung function. It also makes me ineligible for transplant due to the complications. This means that the lungs I have now are the ones I’m stuck with and I need to start looking after them. For other people though, lung transplants are a really positive thing and can significantly improve someone’s life. There is a 50% chance of living an extra 10 years with a lung transplant and that is improving so quickly as well. We live in an age of medicine and incredible medicinal advancements which means that now, people will CF who are already aged 30 are more likely to live into their 50s (according to a study done by the Cystic Fibrosis Trust).

Dealing with a shortened life expectancy is hard and sometimes it hits you that your future goals may never happen. No one is ever ready for their time to run out and having not even started uni yet means I have definitely not done everything I want to in life. But I’m working on it. You can’t drop out of school and tour the world because of a possible shortened life expectancy. Then if you do live longer, you wouldn’t have achieved as much as you could have. Obviously if your passion is travelling then that’s a different story, but for me, my desired career path requires a high level of education and I just couldn’t do that if I went travelling. The best thing I can say here is that you need to find a balance. Most of the time, I just don’t think about it. Quite often it makes for great comedy around like-minded friends. But if it is something that you’re really struggling with then I suggest talking to your team of doctors and support groups. They are here to help you and they can only do that if you talk to them. Everyone is here to support you and if you don’t know where to look, the Cystic Fibrosis Trust website (for the UK) has a forum with people talking on it who can help you or help you find support in your own area.

The best thing to do is to enjoy the life you’re given. Not all the time because that’s impossible, but make the most of a bad situation.

~S