Thursday, 29 September 2016

Evening post

Evening all! I have an hour alone so thought I'd try and write a blog post; get some things out of my head. It's been about 10 days since my last post and my family and I have got into a good routine now that seems to work well.

At 8/8.30am dad arrives to help me start the day. Bless him, he is so supportive, patient and just the best dad you could ask for! Some mornings are hard and painful, some are better and we can actually have a conversation. Either way, dad is there smiling, comforting and holding my hand every step of the way.

My aunty Linda then arrives around lunch time and we have a catch up and do exercises together. We focus on legs, arms, pelvic floor and flexibility. It's great to have someone to exercise with who motivates you everyday, even if all you want to do it curl up and sleep- that won't build muscle now, will it!

Dad leaves around 12.30 and it depends on Linda's day as to when she leaves. Alex is next to come up to help me; sometimes we just sit in silence as I'm so tired and find it hard to talk. We usually eat a snack together and watch something on Netflix.

Then my mum and siblings usually come up in the evenings to see me and help me get ready for bed. It must be hard for them as they have just worked a full day, then driven all the way to the hosp, but they still do it and I am so grateful! We do my meds, try and have another snack, wash and teeth cleaned and get me comfy for bedtime.

I try to get the best night's sleep I can so I am ready to start all over again the next day. My dad says that for now we must just take it a day at a time. No big plans for the future that are unattainable; just one day at a time.

With CF, and I'm sure other illnesses, you have "good days" and "bad days". The last 3 days have been "good days", which is encouraging. I have had a lot, lot less panic attacks, no temps, and have been eating and exercising well.

For a while I had asked not to be told my numbers: CRP, lung function etc. That's very unlike me. I usually want to know all the information I can. I've just been too scared to hear them and if I knew them and they weren't good, I felt it would just make me so upset. I'm breathless enough without adding in crying! Today though, Emy asked if I wanted to know my CRP; I said yes. She told me that on Sunday it was 332- WHAT?! 332?! I was admitted at half of that! How had it spiralled so badly out of control?! Not cool!!! Then she got today's CRP and it has thankfully come down to 27-something. Still no where near good, but at least it is is coming down.

On the plus side, I have managed to put on 2kg of weight in the last 5 days! I'm determined not to have another NG tube after that disaster.

There's still a lot of work I need to do in my adjustment of life; I've accepted that, for now, my life is going to be very different from what I had hoped. Until transplant, then I can get back on track! The two main things are eating without getting so breathless and not being so scared to be on my own. It's only in the last few weeks that I have started to become uneasy being alone; I think it's because I feel so out of control at the moment. I can't control my breathing how I used to and the breathlessness makes me panic and a vicious cycle starts. I just feel if someone is with me they can hold my hand and tell me to take slow breathes and that it will be ok etc. I need to build my confidence.

Finally, it's my first charity event this Saturday at Ruxley Church at 2-3pm. It's an auction with lots such as reflexology, gardening, weekend breaks, baby sitting, paintings.... If you're around, come along! Cheese and wine provided :) All the money will be going to the CF@FP charity, which supports the CF Unit I attend.

Until next time! xo

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