Tuesday, 25 February 2014


Exercise is important for everyone, as we all know. For people with CF it is beneficial in a few ways.

1. Weight gain- muscle weighs more than fat and it is harder to loose muscle than fat. By having a stable weight/not be under weight you have a better chance at fighting off infections as your body is stronger. If you do get ill and lose your appetite, your body won't loose as much weight if it is stored as muscle.

2. Circulation- People with CF often have cold hands and feet and have clubbed fingers. All this is due to poor circulation. By exercising you are getting your heart to pump more blood round your body, making your circulation better.

3. Physio- Doing exercise will make us cough, clearing our lungs :)

4. Arthritis- I have found that, personally, doing exercise helps my arthritis in my knees and ankles. Of course if you wake up in the morning in pain, you don't feel like getting out of bed let alone doing exercise! But once you've got started, I find that it eases the pain (maybe because somewhere else in my body is hurting haha).

There are probably other benefits for CFers from exercise, but these 4 are what I'm hoping for for me.

I used to be very active and do a lot of exercise. I did gymnastics, cheerleading and horseriding but stopped all of these in during my teens. At the same time my health declined... coincidence? I think not lol.

So now I'm looking into what exercise I can do. I want something that I am going to enjoy and not see as a chore. I went to my first pole dancing class last week; 2 of my friends already go so it was nice to know someone there. It was good because you didn't realise you were even exercising, it was really fun. The next few days though I was aching! Hadn't realised I'd even used my muscles so much. I found it super painful to do any physio as coughing uses stomach muscles- all of which were painful. I am also going into a gym on Saturday to find out membership prices and stuff. I will probably do one or the other as both will likely cost too much. But I'm excited to start exercising again!

Food wise, I have stocked up on double cream, nutella, cream eggs and anything else with high calories. I am waiting for my supplement Calogen to be put on my prescription.

I have taken measurements of my arms, legs, stomach etc and taken photos of what I look like now. In like 6 - 12 months I will repeat this and see if my hard work has paid off :)

Monday, 17 February 2014

Unexpected good news!

Since my rant the other week, I've been way more positive. I feel like I have accepted what is happening with my body now and I'm focused on trying to maintain what I already have.

Today I went to hospital for a check up and had some unexpected good news (no I'm not pregnant lol). For the first time in years my lung function has gone up after being discharged from hospital. Today was FEV1 62% and FVC 92%! I know the FEV1 has only gone up up by 3% but every little helps plus I am in the 60's, which is way better than being in the 50's!! My oxygen levels were 97% too, which is high for me :D

Also I was so surprised to hear that the new bug that I had, Serratia has gone! When I first got told I had it, back in 2012, the docs thought I would be stuck with it for life like with the pseudomonas. Thanks to those tiger IVs (never learnt the actual name lol) it has been defeated! Of course there is a big chance it will come back, but for now at least it has gone and it is reassuring to know that it CAN be eradicated from my lungs.

Now the PEG... I felt soooooo awful telling the doctor this seeing as I had been nagging on at them for years to let me have one... but ever since the chat with the surgeon I have been having second thoughts. Having the PEG is quite a big decision as it is there for life and I will permanently have a tube coming out of me. I know that it will probably be a necessity eventually, but I knew that if I didn't give all the supplements just one more go I'd regret it forever! So that's what I'm going to do, along with actually doing some proper exercise, I'm hoping I will put on weight and bulk up a bit lol.


Thursday, 6 February 2014

There's got to be more to life than this...

This is probably going to be a negative post, but I don't even care, I need to vent! It's been 2 and half weeks and I have already plummeted back down to how I was pre-admission. I know I will try to go for a few more weeks without IVs, but it's going to be torturous weeks of pain, exhaustion and frustration. Then 2-4 weeks of IVs to get myself back up to the 50's percentage of lung function. So that's basically around 6 weeks of the pain etc for just 2 weeks of "healthy" living. It's just not fair! And during those 2 weeks, it's not as if it's like a holiday from CF, you still have to do the endless routines of physio, nebs, force-feeding, exercise, tablets etc. I just want a break.

When you're feeling this low, looking to the future seems gloomy too. Unless a cure, or miracle medicine is found, what does the future hold? Most likely, more frequent admissions, decline of lung function, less independence, transplant list, early death. As negative as it sounds, that's the realistic conclusion.

So obviously, I and anyone else I know with CF or any other kind of illness, try to live the life we've been given to the full. That in itself can be difficult. I want to do so much, but my body just doesn't agree with me. Alex and I would love to live independently again, but we have so much against us now it just doesn't seem to be happening for us. Landlords won't accept housing benefit because they think you are unreliable or can't be bothered to work or are a benefit fraud; they won't accept "caring for wife" as a good enough "excuse" as to why Alex isn't able to work a full time job- even though it would be more expensive for us if Alex were to work and I hired a private carer. Plus we have a dog, which we know if our own "fault", but when having a family is pretty much out of the equation, having a pet or two REALLY makes a difference and sort of soothes a woman's maternal ache.

My family, friends, husband and pets are what get me through these low moments. I would be nowhere without them all and I am so thankful to know everyone I know. I wish I still had the energy to be the person I was back when I was 15/16! I feel like I'm not "me" anymore. But somehow my friends and family still stick by me and keep me company even if all I want to do is sleep. They all have so much patience and time for me, they probably don't know how much it means to me. I love you all so much and I'm so grateful to have you in my life xxxxxxxxxxxxxx