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


  1. Sorry you're so down Jo. We may hardly ever see you but hete we all care about you and how you are getting on. You've done so well and achieved so much xxx hope you can feel some positive vibes coming your way xxxxx

  2. Aw thank you Janet, I can feel them :D Hope you're all well lots of love xxxx