Thursday, 1 September 2016

September is here!

September is here! My birthday month, although I'm not really that excited this year. I usually have a big house party with my friends to celebrate but this year I just don't have the energy, which saddens me. I'm going to be 24 not 94!

Almost 2 weeks since we came back from our lovely holiday and I am pleased with how we have managed back at home. I have had one hospital appointment, which went smoothly and have another one next week. I'm visiting a lot more regularly now, every 2 weeks. It's mainly to have blood tests to check my liver levels due to the anti-fungal medication I'm on; but it is also reassuring for me to know that if I start to decline, I won't have to wait long until an appointment with them.

Since being back at home we have managed to organise ourselves a lot better. We are still sleeping downstairs for now so it means we have less space in the living room, so we needed to make sure we had no extra clutter and everything had a place that was easily accessible to me. My daddy loves that sort of organising and he was a great help at getting the job done while I told him where to put things. That's another big step we have taken: my dad, now that he has retired, is going to become my carer as from Monday and Alex is going to put all his time into looking for work. He has been looking for a while but with my health getting worse, he has had less and less time to focus on it. It will be great for Al to have a career; he is young, enthusiastic and such a hard worker. He needs to be out there living his life to the full and not having to worry about me. It will do worlds of good for his mental health, routine, self confidence, socially and hopefully he will have more money than he does on Carers Allowance, which is only £60 a week- less than £10 a day! Shocking!!

Me and Al are so lucky to have such lovely friends and family who are so understanding and go out of their way to help us when we need it. One of my besties Emily came over to cook us a delicious spag bol- with left overs for another eve! And my neighbour Christine baked us some lovely Bake Off Style jaffa cakes. Due to being on O2 all the time, I'm not allowed near flames so Alex is having to do all the cooking, with his specialty (and only dish) being bacon sarnies haha so we welcomed the change! :D

We try to get out everyday (God, we sound like old fogies!), usually to the shops, seeing friends and family, running errands, hospital, chemist etc as it's easy for me to just sit in my pit (huge nest of pillows and duvet I have made on the sofa bed) all day and get lazy. That will do me no good! Need to keep exercising these lungs and keep the strength in my legs, arms etc.

My aunty and I are starting yoga as from next week too. On holiday we did it and I found it so helpful so we have found a local one. I am also starting hypnotherapy next week. I have had quite a lot of psychology help for my needle phobia in the past, but as much as I have improved, I'm still not 100% comfortable with the idea of needles jabbing me left right and centre. I've never had hypno done before but I am so willing to try anything to get over this fear as it's something I need to deal with for my whole life and the needles are only going to get more and more intrusive as I get older and more unwell. The ideal would be that I can be put in a trance and have absolutely no idea what's going on and feel NO pain! :D

Finally, another shout out to my uncle Mark who is running the Great North Run for Cystic Fibrosis Trust in just 11 days time! If you'd like to sponsor him, here is the link:

And another wonderful friend of mine Katie is Skydiving for Cystic Fibrosis Trust in October! Her link is:

Until next time! xo

No comments:

Post a Comment