Hello world! It seems as though I have been off the radar and off the planet for a while. Have a fair bit to catch up on but don't want to end up with another super long post, so shall try and keep it brief.
It's been a week and a half since I was admitted and in all honesty I have just gotten worse each day so far. They often say you will feel worse before you feel better, but this is getting out of hand lol. The sickness, pain and breathlessness have been unbearable; I have lost so much weight and muscle.
On Friday I asked my dad to put up a Facebook status to ask anyone except close family not to visit me at the moment. The main reason being that I don't want people generously travelling all the way here and taking time out of their busy lives just to watch me sleep! If you'd like to see that, my sister has hoards of photos she can send you to fulfil that desire ;) I am finding it very hard to talk and stay awake at the moment and just don't want to bore any of you or feel like you have wasted your time. Once I am on the mend I shall let you know and will welcome you with open arms!! I need my gossip fix haha. Thank you so much, as ever, for the love, support and for understanding my circumstances <3
I have had two of my hypnotherapy sessions now. I would have had 3 but I unfortunately had to cancel this morning's one due to ill health. It is the most strange thing ever but I feel it is working. It is almost like you are asleep, that's the only way I can describe it at the moment. Your limbs feel so heavy but at the same time you feel like you are floating. Very odd but I am enjoying it and really have faith it will work! The hypnotherapist, Helen, is such a wonderfully kind lady too and it's lovely being in her uplifting presence. Such a small world, she used to live down my road!
I have decided to raise money for the CF Unit at Frimley (the place where I am). I receive exceptional care here and I wish everyone who has CF could receive the high level of care I am fortunate enough to. I want to ensure that the unit can carry on delivering this care to all of their patients now and in the future. They rely on donations to help offer extra services such as free wifi, free parking, free TV, a snack trolley; as well as the life saving equipment. The doctors, nurses, care assistants, physios, dietician, psychologist, cleaners and reception staff go above and beyond for their patients day in, day out. I am planning on holding a few events over the course of the next year, the first being an auction where people donate and bid on services i.e. baby sitting. This auction is being held on Oct 1st. I am also lucky to have my cousin Suzie holding a quiz night, my mother in law Tracey organising a big party and my aunty Linda holding an evening where you swap plants, all for charity. Once I have more energy I will write a more in depth post about the charity work :)
My uncle Mark and uncle Jeff ran the Great North Run on Sunday for the CF Trust. They completed it in 2 and half hours and have so far raised an incredible £1020 between them! Well done and thank you so much guys.
2 more paragraphs... feeling rough, need to type these then I can lay down.
My friend George who had her tx just over a year ago popped her head in today. She's a naughty little minx but I love her for it! She looked incredible. She would say she looks fat, but I think she looks beautiful. The picture of health. She has joined the organ donation committee here at Frimley so was in doing bits and pieces for them. She stopped for a quick chat and it was so lovely to see her. She has said over Facebook Messenger if I ever need to ask any questions regarding tx just give her a message but I couldn't ever think of anything. Then when I saw her I suddenly had 101 questions, strange how the mind works 'ey. She was encouraging and uplifting and I felt on such a high after she left that I ate food! First time in days I had dinner :D
Finally, the next plan health wise. I am trying out the NIV at night time tonight. This is a machine that will help me breathe at night so my body can rest. If I am no better tomorrow then I have to have IV aminopholin again :( I really don't want to. I will have to move wards to MADU where I have no phone signal and I don't know the people there like I do down here on CFU. Things are done very differently up there. Also, I will have to have another power glide. Last time the Ami didn't work, so I am reluctant to go through all that trouble for nothing. It's my birthday on Friday and if I need to be in hosp I'd rather be on CFU!
That's all I can manage at the mo. Until next time xo