I have been so interested In the Instagram for the trust they had a take over today which I found inspiring however without being negative I think it is a bit difficult for people who aren’t as healthy as her, I Remember pre transplant how much it got me down to see other cfs withour transplant have the luxury of working and being happy to be so fit and healthy when there is no matter what I did I could never be like that! I find sometimes with the trust they are so scared to show the parents the reality of cf and how bad it gets, awareness for cf is crucial and people need to see how hard it gets and can be for so many.
Get someone with 20% lung function waiting for a transplant, someone who would love to exercise without oxygen and jump on the gym bandwagon but that’s just not the case!
Cf can be so missunserstood anyway I think it needs to be real!
Just my opinion maybe they will have someone who’s in a wheelchair on a bipap machine waiting for lungs unable to eat they feel so sick and going blue when they talk, or maybe they will continue to show cf as a popular lovely illness which is not as bad so it protects the parents of young kids!
Fantasy land in my opinion x
I'm so glad that I spotted that you wrote this and I'm SO glad to hear your opinion about the Instagram takeover that I did yesterday. I agree it's so hard for the Trust to get the right balance. I feel like they've tried to do a really good job this week to show both the hopeful and the heartbreaking, especially with sharing Kayleigh's story today.
I really hope that I did come across as real. I tried to speak about how I had to leave my full-time job last year due to my health and was honest about the fact that my lung function did see a drop. I have some more content on my blog that I tried to direct people to where I've been able to more accurately, articulately and extensively convey the struggles that even more 'healthy' people with CF have when trying to lead a 'normal' life.
I still have to put in hours and hours of work every day to keep breathing and I still find it really tough, even though my struggles may be different than someone else's. I would never want to discredit what anyone is going through and dealing with as not 'real', especially as so much of someone's life is private and unseen, and I hope that people would extend that kindness to me too, even though I can appear well on the outside. That's the message that I hope that I can spread by talking about CF as an invisible condition.
I know it's hard to strike a balance. I want to raise awareness of what a horrible condition CF is to deal with, too. Regardless of my lung function results, I still have to put in a lot of effort every day and rely on my mum's stew to get me through when I'm tired, have no appetite and have been too utterly exhausted to shop for a week (as you will have seen! haha!) but being as positive as possible is what gets me through... Even when my fridge is leaking, my phone dies and I realise I've had my underwear on inside out all day (true story of what happened to me yesterday evening post-Instagram! Definitely not fantasy land...).
I would LOVE to see your story showcased and if I can do anything to help that happen, please get in touch with me.
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