Sunday, 3 May 2015

Feeling a bit down

Decided to right this blog now as I'm sat here struggling to catch my breath, my lungs are so sore and as I don't suffer from anxiety like many cfers at this stage or prior, however I have this over whelming feeling and fear of not being able to keep my breathing under control in moments like this, my heart is racing and it almost feels like someone has their hands around my neck stopping the air getting into my lungs, like someone is hugging me so tight I can't gasp for air and the more I feel it, I have to spend my time taking myself to a calm relaxing place, where I am distracted from my own heart beat and struggle to breathe, that is the only way I can take back control! 
I've noticed this happening more and more often recently, and a few times I've almost lost it completely, but once you give in, the feeling of all of the above only gets worse and worse and that is only harder and longer to get things back to normal!!

I never talk about these things in my blog often or I like to keep it brief, I don't want to show signs of weakness or giving in And if I say it out loud then it makes it real, but I want to be honest and I'm sure many others in my situation can relate to these feelings. 
By writing this I am no way wanting sympathy, this is my diary and when I have my new lungs, I'm sure these moments will be a distant memory, and so they should, I don't want to remember this feeling! I wouldn't wish this on my worse enemy! 

Now I've done that little dramatic start, I can move onto the good news...I'm free! I left on Wednesday! With no ivs, a bit fatty and with a lot more equipment to take home with me, our car was completely full, my poor mum had to do 4 trips with the wheelchair overloading from my hospital room to the car to load it up! 
But wow the feeling of being home was great, my own bed, my hubby and my little fur baby, mason! 

The first night was hard, I think I felt nervous too, alots changed since I went in, I was so weak, which made my lungs weaker and my heart work harder, no more sitting in a bed all day and walking a few feet to my en suite bathroom, nope this was real life now, and stairs!! And  very steep ones at that! But I was determined! 
I was warned the first week would be my hardest, but I wanted to do the stairs, no short cuts, no carrying up, had someone behind me going up, and in front on way down. My legs were like jelly! 

Feeds have been a bit slack, but I've been eating lots so balances out. Real life kicks in, trying to fit it in daily life and as I don't do feeds over night due to coughing so much and I swollow quite a bit of air over night whilst on my bipap, I don't want to risk being sick during the night or the morning, so unless I wake up early, there isn't enough hours in the day! 

Sickness has put me off a bit too, havent got everything on tap like in hospital and tablets don't work as quick, but it's better than nothing! 

Don't want this to be a completely depressing post but want to get it off my chest...
I can't help but feeling a bit low at the moment that I've still not even had a false alarm, let alone the real McCoy yet!? 
I'm so positive and upbeat about things but I'm just mentally struggling with things since leaving hospital last week, the slight changes don't help, I'm so dependant on oxygen now it's mad, I'm on 4 litres walking around and 2/3 at rest! Going out to shops or just anywhere now I'm taking at least 3 tanks of oxygen. The struggle of getting in and out of a car, even in and out of  my wheelchair. I struggle to talk for long periods of time.
Getting ready takes hours, washing completely wipes me out (don't worry I still wash lol)  

I'm really trying not to focus on this, but truthfully Life is hard now I want that chance now, I'm so scared it's not going to happen I try block that comment out from poping into my head but it's not shifting at the mo, at Harefield they are always so confident that I will get lungs but I've never felt like time is running out like I feel now. Sorry this is so not like me to blog like this... I'm just worried I'm going to be like those people that just run out of energy and they don't get there call in time, that's not how my story plans out in my head, but it's just this dark negative thought that's not going away! 

What will be will be. But I'm becoming impatient and desperate now. This isn't fair on my family anymore, I feel like a 24 year old trapped in an 80 year olds body! And I'm fed up now! 

Anyways I've had a few naughty sunbeds since I've been home so hopefully not so see through now, seen a few friends and had some lovely dinners out! 

Finished off the lovely bank holiday with my hubby in one of our local pubs for a yummy dinner!
Actually got him to smile! Haha 

Sorry promise next blog will be more uplifting! 
Also thank you for the lovely comments left on last blog, wouldn't let me post replys! Will work on it or try get on the laptop xxx