Friends, Hospitals and Feeling Perky!

Robyn with Ralphie playing hide and seek

Me, Charlie and Amy at Jayne's place

Me and Em in Cosmos

Can't believe I forgot to mention lots of other stuff!!

Had a trip to Wales to see a uni friend Jayne. Went to Cardiff shopping which was fab and had an evening out in Swansea. Swansea nightlife wasn't really my kinda thing but it was definitely a sight to see!! We ate our body weight's in carbs I think and I was really craving some green goodness after a few days!! Unfortunately like most times I try and go away for a few days break, I got sick and ended up in hospital there on BiPAP for a few days. Was all pretty depressing as I seem to be more isolated these days. Every time I seem to go anywhere, something happens. It was good to catch up with Jayne and co though and we had a good giggle

But alas, it wasn't all bad. My old uni house mate Emma who I haven't seen for 4 years came down from North London to see me for the weekend. My friend Robyn also came and I hadn't seen her in yonks! We had such a great time. We went out to Cosmo's for more fatty treats and just giggled all weekend. It was a welcome break from all the hospitals and dramas. Actually felt quite relieved when I survived a weekend with friends without being unwell. :) Since then I've pretty much been on a high. I've felt really upbeat and positive about life. I don't know what's changed but long may it continue :)

Donors and Twitter Strangers

Last time I blogged it was about Transplant Week and I believe I posted about Kirstie and her gift of a life saving double lung transplant. I am pleased to say that against the odds Kirstie pulled through and is now back at home at her dads with her hubby and recovering well. It's so amazing to see that in a time of such great sadness for one family, another family can feel such hope. All that because someone took them time to sign up to the organ donor register.

At the same time Tor is still waiting for her chance, 4 years of waiting and 8 false alarms. This breaks my heart and I just wish there was more that could be done. Her blog is truly inspirational and extremely touching. Tor talks openly about how she is acutely aware that her time is running out. And even talks about now having to discuss where and how she wants to die if the transplant doesn't come in time.

If only we could get more people to sign the register :(

On a much less important note.....

In my own life things have been a little up and down. I've been kept busy with 4-5 hospital appointments a week. My life seems to revolve around them these days. Despite having had to go to these for years now I do believe I seem to be developing a bit of a phobia to hospitals!! As stupid as it sounds, every time I go to an appointment I feel sick and filled with dread. My respiratory appointments have resulted in an increase in my medication, new nebulisers, new antibiotics, new physio treatments and a change to my oxygen at home. None of which are particularly the positive steps forward I had hoped for.
I've also been seeing the neurophysio for a couple of months now and my walking doesn't seem to have improved. I'm starting to thing I'll be like this for life now.

On a happier note I met a couple of people I've been chatting to on Twitter, last week. I was a little apprehensive, always remember 'ya mother always tells you not to meet people off the internet'. But I figured I'm a big girl now at 26 and it was broad daylight at a busy train station. Turns out it was great, I made a couple of new buddies and it was good to share experiences about respiratory illness and how different people deal with it. The girl, also names Gemma was amazingly upbeat despite her illness and lived a life pretty much exactly the same as any 'healthy' person her age - apart from the usual drug and physio regimes. Richard I think found it a little harder but was honest and had a real enthusiasm for his hobbies and interests which was refreshing to see. I hope we get to meet again as we had a good laugh.