Sorry for my absence!

I firstly want to apologise for the fact that I have been absent from my blog for so long. It is very frustrating for me also because there is so many things I want to be doing but when pain and exhaustion is present at such a high level I have no choice but to sleep and rest in an attempt to recharge my batteries! I have decided that from now on if I don't feel able to update my blog I will get Mum to step in more often to fill you guys in on how I am doing (although I haven't made mum aware of this plan yet haha!) 

I am so thankful I was able to go to Phils surprise birthday party, thank you to all those who looked after me! 

I am struggling with my joint pain right now, and my shoulder is proving problematic as it is dislocating with little movement. We have put this down to the fact that I am using my arms more than I have been pushing myself in my chair, my shoulder has been problematic for a long time. I am also very 'jerky' at the moment, my legs especially are participating in a lot of involuntary movement. This is worse at night time/when I am asleep meaning my sleep is very rarely restful...vicious cycle! 

The first time I put make up on in a long time! 

For the past few days I have had a very very slow feed set up to run through my jej tube, the feeding tube in my stomach. Currently this is extremely painful and I am only tolerating 2.5 hours at most. Since starting this I have also started vomiting again which doesn't help the situation! Today I am hoping to change anti-sickness medication in hopes I can combat the sickness which would make my life a little easier. I have also seen the nutrition team who help with complex nutrition cases, they are going to try and raise my hydration levels as being a bit dehydrated may be contributing to my exhaustion levels. 

Despite all this I have woken up this morning in a positive frame of mind. I have been blessed with the opportunity to spend some time off the ward recently and whilst doing this I have made a few observations. The leaves on the trees right now are beautiful shades of reds, oranges, browns and even purples at times. They are falling to the ground creating pools of colour where ever they land. Autumn is my favourite season by far, but now I realise I cannot do some of the things I used to love...crunching leaves under my feet and walking the dogs early in the morning whilst the grass is still crunchy with frost. I realise now that I cannot do those thing, but there is plenty of things I CAN still do. I can still experience the colours, as I am blessed with sight. I can still hear the birds tweeting chorus early in the morning as I am blessed with hearing. I can still take a deep breath of the fresh, cold air as I am blessed with the ability to breathe. We often forget the things we take for granted are what others may be asking for in prayer. 

A picture I took last autumn, hopefully I will be able to take many more soon :) 

Then came my second thought...where did summer go? My experience of summer this year was sitting in a stuffy room with the (pretty rubbish) air conditioning full blast. It was the few moment I spent sitting on the grass before having to come in because I needed medication of pain relief. My experience of summer this year was not the best but atleast I didn't have to deal with awful hayfever! (I secretly prefer the colder months anyway) 

I am VERY excited about Christmas. I think this is because it's something I have control of planning and organising in a very out of control situation. It is a time I know my family will be together which is not the case right now and it is a time filled with laughter and love, which is always nice! So if you have any great wrapping, decorating or present ideas and any yummy Christmas recipes please do share, I would love to hear them! 

Christmas last year- this is roughly when I began to feel more unwell. 

I think that is all for now! I will leave you with the henna design I did on Mum's foot the other evening....