Hey
I feel like I’m ready and want to start blogging again, so here I am I’m back. It’s been almost a year, a long summer holiday then I found myself wanting to focus on myself, work and my studies. I’ve thought about the blog a lot, but there has been lots of small, personal, circumstantial things stopping me writing, and mostly the nagging critical voice in my head that told me to keep my writing to myself.
With a little push start to get me writing again, I was asked to share my story and answer some questions for CF week at the Cystic Fibrosis Trust. I didn’t want to make a big deal of it, and for anyone wondering CF week was last week. You can find the website here in this link. I wanted to share also my full answers here
These are the sorts of things I’d like to start blogging about in more detail on this blog, and it reminded me I originally set this up to talk about being Chronically Happy, the idea that living with chronic illness doesn’t always mean that you’re suffering. Although it is challenging and it is an incurable disease, it varies widely from person to person and affects people differently. This is my story, one very small glimpse into my life.
Can you tell us a little bit about yourself?
I currently work part time as a personal assistant, I study part time at the open university doing environmental studies. I’m also in the CF trust’s youth advisory group, and a member of the NHS youth forum. Youth voice, activism and disability rights campaigning are really important to me and I’m really keen to raise awareness of invisible disability. In my spare time I like reading, writing, trying out fun exercises (I’ve tried trapeze and next I want to do rock climbing) also travelling and anything artistic and creative.
How is your health now, and has it changed much over the years?
I would say now, fingers crossed, it is quite stable and I feel relatively well. While my lung function is not as good as it used to be (currently around 50%), it’s improving, and I’m happier with my life generally. I never get a break from health with CF and it can be unpredictable, which can be quite exhausting physically and mentally draining. I worry about the future and reduced life expectancy, of course I try not to let it hold me back but I’d be lying if I said it didn’t bother me still. Like I pushed myself so hard to get through Uni because what if my health stopped me from progressing in life, I wanted to finish sooner rather than later. Ironically it was pushing myself too much with studies and other parts of life, that made me so unwell and that’s why I had to take a few years out. I’m feeling a lot better now, I make health a priority and I feel stronger physically and emotionally
How many tablets do you take a day?
20 creon, 6 vitamins, 6 other tablets, so 32 tablets a day, as well as 2 inhalers twice a day, 4-6 nebulisers daily, and insulin.
Insulin at least 3 times a day with meals, checking blood sugars up to 5 times a day, 6 nebulisers (even more time consuming)
What treatments do you do and how long do you spend on treatment every day?
In the morning to get ready it can take up to 2-2.5 hours, when I’m more unwell with a chest infection and need to do more physio this could take 3 hours in total. This includes nebulisers which can take up to 20 minutes each (I do three)
In the evening the same, three nebulisers and with physio takes about two hours, although usually I will have dinner in between my Dnase nebuliser (to allow time for enzymes to work) and physio
Doing exercise is also really helpful for clearing mucus off my chest, if I include this as treatments I could spend up to 6 hours a day just looking after my health!
Do you have any other complications from CF (CFRD, arthritis, transplant etc)?
I also have CF related diabetes, I find this to be more time consuming and its one more thing to do and not as easy as popping pills. When I was younger at school I used to go to the bathroom at lunchtime so people wouldn’t see me injecting insulin. Also time consuming is calculating how much insulin to take with food (carb counting) and guessing with new foods.
I also have liver disease as a complication of CF and no longer drink alcohol to slow the progression of the disease. I’d say sometimes I miss having a drink when I’m out socialising with friends, but I certainly don’t miss the hangover (and the wasted time) the day after!
Life with CF
The theme for CF Week is ‘time’. In what ways do you see time as a problem in CF – eg time away from friends, missing school, taking up family time, time taken up by treatment, time in hospital etc…
Doing physio every day, taking time out of work/school for hospital appointments, hospital admissions, even the smaller things like picking up prescriptions, and the time I spend worrying about my health it all adds up. The thing that made me consider CF as a disability is thinking of how “disabling” or time consuming it all is.
Sometimes I don’t see the time taken as a problem, if I always saw it as a problem then life would be really difficult! In a way it’s a good excuse when I need a break from studying I’ll go and do physio and listen to music, and do my nebulisers and watch a TV show.
What single change could make the biggest difference to giving you your time back?
One of the things which significantly saves me time is having the Tobi pod haler (which is four small pills that you breathe in as a powder), this replaces a nebuliser and takes 2 minutes instead of 20, so I have an extra 20 minutes sleep. It also means no time spent washing up nebs! Having something like that to replace all nebulisers would be great, or not having to do them at all.
I’d love to be able to only need to take a pill for insulin so I don’t have to inject several times a day (I don’t mind the pain I’m used to that, it’s the inconvenience of it all)
Is there anything else you would like to include?
If I could wish for anything at all (other than a cure for CF) it would be to be able to “bank in” physio sessions, be able to do extra when I have spare time so I wouldn’t have to do any treatments while I’m on holiday or going out somewhere nice for the evening . Something simple like going out for drinks/dinner after work, I have to decide what time to get back which isn’t too late to do at least a nebuliser if I’m too tired for physio. Having said that, I am lucky my health is fairly stable at the moment, and I can miss the occasional physio session and not feel too rough.
I think for people who don’t know much about CF it can be hard to fully understand that it’s like having another a full time job, only it’s always on my mind and it’s hard to take time off.
chronically happy 