I haven’t been able to blog lately as I have been up and down with being poorly! I’ve been in hospital for two weeks and that’s helped huge! I was on IV antibiotics for four weeks altogether though, and it has made me feel very tired. I’ve missed being able to post as much but hopefully now I will be posting a lot more! L x
“But you don’t look ill”
I think anyone with a chronic illness can relate to this line so much. I have always been told this during my high school years and many times after. It’s a sentence that really bothers others and others it doesn’t. I guess in some ways you could take it as a compliment that you don’t look unwell or sick. But in other ways its disrespectful and just rude. Like when I use my blue badge, and I use it for when I’m mostly poorly or severely poorly, I always get glances and stares. Even the comment to who the person is with. And it makes me feel so ashamed and so annoyed to feel like that when actually, I can’t help it, and if I need to use it, I will use it. It’s terrible that people are still thinking all illnesses have to be on the outside so people can believe that they are poorly or have a illness. It’s also annoying when people look at me on the plane, as I have oxygen all the way. People just look over and always stare. And I always think, what makes it right that you can fully stare or fully judge me? Nonthing! I had to rant about this as everytime I use my blue badge or anything like that. It makes me feel ashamed at myself. When in reality, the person who should be ashamed is the one who is judging before even knowing. Anyway, rant over. L x
A month update and more..
Its has been very busy this past month. I went to Florida on the 19th of June, Which was amazing! I love it there and i wish i could never go home. I feel so happy and healthy there, i was also doing 20,000 steps per day. It was a bit of a struggle at the end as i stared coming down with a virus, but i got a wheelchair for the last two days. Which it super good for me as before i was using a wheelchair every day nearly. Before i went to Florida, i was feeling a little poorly again, but i picked up on the last day before i flew out! I have also been keeping up with the exercise every day also, the best thing i have found to do is to make it not seem like exercise, and to make it fun! Like swimming, or going on adventure walks with dogs. Anything is worth a try and i had to go through a lot of different exercises to find one i enjoyed. The key thing to do is to keep thinking its for your own health,body and mind. It also helps with depression, and as i have depression, i have found it has helped. Especially when i, having fun and taking photographs. I have recently found a new hobby which i love, photography! I loved taking photos on holiday and also on the walks i go on. It really helps to have something to do with isn’t related to Cystic Fibrosis. I think its important to have a hobby or something to get your mind off any illness, as sometimes i think i can become to much and stressful. Even if its sitting and watching Netflix! Which i think everyone likes to do. I will be posting photos soon on here and i really want to start taking more photos of my Cf and diabetic life. If anyone would like to get in touch about anything including finding a right exercise or hobby, i would be happy to help! I also recently found out that one of my closest CF friends has recently passed away. He was such a inspiration to me and how he dealt with things and got on with them. He always called us both ‘hospital buddies’ as we were both in at the exact times (nearly!) I will miss him terribly and i could not believe it when i found out. Breathe easy Adam, i will miss you and i will never forget the funny times we had.
NEW POST TONIGHT!
Health update and more!
So recently i have been super well! I have been able to go on more walks with my dogs, and get out a bit more. But, too good to be true! I have started with a cough again and a bad sore throat. It drains me feeling unwell, both mentally and physically. I always try to look at the good side of things, but sometimes its hard when you have tried your very best at keeping well. Reading books has helped take my mind off it, and whilst coughing my lungs up! Here are some of the things that i have noticed that help when i am feeling poorly or down with feeling poorly!
- Reading – reading is my favorite thing to do, I read at least 3 books per week, and it really helps me when i feel depressed.
- Colouring books – I have always found colouring super therapeutic, It takes my mind off coughing and helps settle my mind on something else.
- Cup of tea with honey! – This helps my throat so much when im doing nothing but coughing! It really helps soothe my throat and also its pretty nice to have.
- Disney films – I have a terrible addiction to Disney films, they have seemed to always help me get through things and its such a joy to watch also!
- Having a bubble bath – This helps me both physically and mentally. It really helps my chest and i find that it calms me down from coughing. There are obviously so much more things, i would love to hear what helps you all during a rough patch! L x
Lily!
Nala!
Photos…
Look out for some new photos this week of positive things! I have recently bought a new camera, so I’m dying to try it out and let you guys have a look! Hope you give me feedback! L x
Hospital appointment update…
It was one of my best so far! My lung function and weight have gone up, which is amazing. Especially my lung function going back up to high 60s. I was really pleased with it all, just have to try and keep it all up! I have also got back into doing my physio therapy everyday, which is really good for my chest. I think when you have a good hospital appointment, it also makes you feel better mentally. You feel better in yourself after seeing all the hard work you’ve done, especially if the last appointment wasn’t as good! My next appointment is in 5 weeks time, so i am going to basically do everything i can to keep it up. I really need to be super duper well for DISNEY WORLD in 3 weeks, as i wasn’t very well last holiday. Which was so frustrating! I absolutely love Disney, i have always been such a fan growing up, especially watching a Disney film whilst doing IV antibiotics. I will keep you all updated soon! L x
Cystic Fibrosis diabetes
I thought i would post about my diabetes side of things. Well, i was diagnosed when i was 11. I went to the doctors super thirsty and tired, and back then i didn’t know the signs for diabetes! They tested my blood sugar and it was…50. It was the highest the doctor had ever seen. I was also severely dehydrated and i was put on to the CF ward that night. I had a canula fitted for saline,IV line for antibiotics and a blood pressure monitor on my leg constantly. I think its fair to say i wasn’t a happy girl at the time! It took me years to get my sugars right since then, i still haven’t got them 100%! Through my teenage years i was terrible at testing them and taking insulin. My insulin would hurt so bad as i lost so much weight on my body, so when i injected it went into muscle. Gross i know. I would just avoid taking it and just ignore testing my sugars. That honestly for me was worse than deciding on not to do physio back then, as all the bacteria was just making my chest so much worse. I have started to take control of it again, but finding it hard not too have food with ought insulin! I have also recently come across this device from the diabetic company Freestyle. Its a monitor that sits on your skin and you test your sugars from the scanner provided! I have only just attached my first monitor, but it did not hurt one bit fitting it! It lasts up to 2 weeks and you then replace it with a new one. I will keep you updated on how it all goes. I think having CF related diabetes is something that seriously sucks to have, as well as CF! But i always try to look at the positive, even if i do sometimes remind myself as a pin cushion! I really hope this scanner works for me, as i seem to forget to test my blood sugar most times. But yes! That is enough from this pin cushion today. L x