Well firstly, my favorite things to do are reading, walking with my dogs and watching anything to do with bobs burgers. I read pretty much anything and it really helps me relax after a rubbish day or in hospital! I also love anything and everything to do with Disney, its been one of my favorite things ever since i was young.It helped me get through so much when i was younger as i would need IV antibiotics and also other things at the hospital! It would cheer me up no end. I have a lot of support from my family but also my fiance Jamie. He is such a kind hearted person, and he helps me through thick and thin. He even knows me that well that he even proposed in Disney World to me! It was such a special day, and also my Birthday! My cystic Fibrosis is very up and down, i have been admitted 5 times in 7 months. So its very hard getting it balanced especially with having diabetes making my sugars out of control. I am trying very hard at the moment to have at least 3/4 months out of hospital, so wish me luck! I also have a very big obsession with tea, any kind of tea i will love! I also love getting messages and emails from anyone who wants advice or tips on anything, or even just a chat! L x
it was quite disappointing this time! My lung function is down and my CRP has gone loads higher. Felt so deflated, I have tried so hard to do as much as I could. Tomorrow I’m starting two new IVs, so hopefully that will get me back to my normal (ish) self in time for Florida. Cystic Fibrosis never gives you a break, never! L x
#cysticfibrosis #cf #diabetes #IV #chronic #chronicspoonie #chronicillness #chronicpain #spoonie
I recently have started seeing a psychiatrist again, and it has honestly helped me a lot already. Maybe one day I can be as confident in real life as I am on the internet! So here are my little tips to help with the bad days, or panic attacks or anything that will make you smile!
1. When I have a bad day, I know the best thing for me to do is to do something. Not sit and think about it, or it gets worse. I normally colour, adult colouring books you can get anywhere now, I love the mindfulness ones the most. It’s nice to kind of not think of anything as escape to a little reality for a bit.
2. Escape into a new series or movie series, it’s nice to relax and not think about anything else. I love getting into a new series!
3. Writing! I love writing everything and anything, when I have bad thoughts or when I know I will have a anxiety attack, I write down whatever my mind is thinking. It can be about anything and it takes your mind away from the moment. It helps physically writing it down also. I also have a notebook especially for it, so decorate one and make it special to you.
4. Fidget cubes! These are especially handy if your out and about and can’t exactly write. There small and they are pretty handy.
5. If I’m also in public, I have a mobile app called Be okay, and it helps with panic attacks. There’s loads of different apps to help with mental health, and ones that I’ve tried are really good!
6. Talking. It might seem hard, but it really does help. I try and talk to my fiancé when I feel bad or feel like I’m going to have a anxiety attack. Taking to whoever helps. And knowing they will listen and help is even better.
7. Photos! Having an album on your phone or computer is really good. Everything that makes you happy and calm, like photos of friends, family, pets, holidays, food! Anything.
8. Reading! This is especially good if your having a bad day. I love reading adventure and mystery books, and that always keeps me interested. Having a book can really help take your mind away from things.
So they are some little tips and advice on how to handle certain things! I hope you enjoyed reading! I’m always here if anybody wants to chat also!
I also would like to say I’m starting IV antibiotics tomorrow, which is a pain for my arm, but hopefully I will start to pick up in time for Florida! And get a goodnight sleep! L x
As it’s cystic fibrosis awareness month, I will be sharing my personal stories and experiences with having this disease and the impact mentally for me and other cf’ers!
With having any chronic illness or any other type of illness, there’s going to be some bad and some good days. Many days are still bad but you managed to do something that makes you feel happy. I was around 13/14 when I started to feel more bad days than good. I stopped taking my medicines, stopped my physio, didn’t do anything for my cf. I hated it and just wanted it to go away. I would stay in bed till late afternoon and would just feel exhausted. I felt so different to my friends at the time that I just stayed at home and didn’t want to leave the house. Fast forward to around 16, I started seeing a psychologist. It was such a huge relief and weight off my shoulders telling this individual my feelings and letting go everything I had bottled up for almost 5 years. It helped me mentally get back on top of my meds, and I started to do physio. My depression started when I was 13, and it hasn’t got better, but I have learnt to handle it and to try and see past the bad days to the good. Don’t be afraid to ask for help. Don’t be afraid to admit you might need a little guidance. I did and I don’t know what I would be like now if I didn’t. Mental health has always being a bit part of my life growing up, and i hope it will get better as I grow. Please, don’t be afraid to speak. L x
#cysticfibrosis #diabetes #mentalhealth #cf #cysticfibrosisawarenessmonth #chronicillness #chronicpain #spoonie
19. The nickname for cystic fibrosis is called 65 roses! It comes from when children couldn’t pronounce cystic fibrosis, so they came up with a nickname! I think it fits pretty well.
#cysticfibrosis #diabetes #cf #chronic #chronicillness #chronicpain
I would like to start with whats been going on since the last time I posted! So a couple of weeks ago I had another admission for 17 days, which was the longest I have ever stayed. I was on IV antibiotics for about 3 and a half weeks, and it made me feel so ill! I was put on anti sickness tablets and others which helped. I finally got home and I started to get back into normal life (if I can call it that?) and was heading in the right direction! Yay. But this post is all about Cystic fibrosis awareness month. As I have missed quite a few days already, I’m going to put up 17 facts about Living and dealing with cystic fibrosis.
1.Cystic fibrosis is a genetic disease which mostly affects the lungs,pancreas,liver,intestines.
2. 1 in 25 people carry the defective gene.
3. Most CF patients take over 30 pills a day.
4.Males are usually infertile.
5. We usually have salty skin!
6. Thick, green, sticky mucus clogs the airways, which makes lung function decline.
7. Around 30,000 people in the US have cystic fibrosis.
8.There is no cure for Cystic Fibrosis.
9. As the mucus builds up in the lungs, the bacteria grows thus leading to frequent chest infections.
10.Higher risk of diabetes.
11. Around 10,400 people in the UK have cystic fibrosis.
12.Cystic fibrosis is the UK’s most common life threatening condition.
13.There are over 2,000 identified mutations.
14.Many people suffer with nasal polyps
15. Joint pain affects more than 1 in 10 people.
16. Clubbed nail beds are very common.
I will be posting more as the month goes on for awareness!
#cysticfibrosis #cf #diabetes #awarenessmonth #cysticfibrosismonth #chronicillness #chronicpain
This day is very special for awareness for all kinds of rare diseases! As many of you know I have a genetic disease called Cystic Fibrosis, it affects the organs especially the lungs and digestive system. The organs then become clogged with thick sticky mucus which is why we cf’ers need to frequently do treatment like nebulisers and physiotherapy. I would say it is still one of the rarest diseases in the world as it is estimated that only 100,000 people in the world. So I would say I am quite rare myself! With my cystic fibrosis I have also got CFRD (cystic fibrosis related diabetes) Its very rare a day goes by that my blood sugars are under 15! I don’t just want to spread awareness for for cf, I would also like to spread awareness for every other disease that isn’t really known. So please, SPREAD AWARENESS! L x
#cysticfibrosis #diabetes #rarediseaseday #chronic #chronicillness
Lovely day watching the snow and doing my nebulisers !
#malamute #nala #alaskanmalamute #dog
#dachshund #lily #sausagedog #sunday