25.8.16

Better Place...

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So the past few months have been really hard for me, I haven't been dealing with the situation that well or at least not what I would consider well. I suppose from other peoples perspective I've been dealing with it fairly well and I guess considering the situation and all that stuff I haven't fallen a part at least. You know I don't even think its the really big thing of potentially dying that I'm not dealing with very well it's all the annoying little things that I don't deal well with. The side affects are the things that seem to get to me. The steroids make me crazy, I am not the Stacie you all know and love when my steroids are higher I'm a bit of a depressive mess on steroids which is then exacerbated by the fact that my nails start breaking and become very frail and my forehead breaks out in about a billion spot and plus a mouth full of ulcers which has just been fab! I just don't feel like myself at all. So I've been dealing with a high dose of steroids which has been making me feel completely abnormal and not myself and then adding more and more stuff to the mix. I'm now on a steroid inhaler which isn't bad really it just makes me appear like some sort of drug addict and makes me shake a lot which is just annoying more anything and slightly amusing when you're attempting to eat you know peas or soup or you know just anything you can't physically poke lol. 

Last week my antibiotic got upped to everyday this was the one I was dreading and so they gave me anti sickness to counteract it. The anti sickness DID NOT work, like at all! It made me worse and I can honestly say Thursday and Friday of last week were two of the most horrendous days I have experienced in a good long while. I was very lucky that I was being looked after very well. My hair is also getting to me I know I complained before about it but it's awful at the moment and we all know how much I like my hair and some days it just makes me want to cry, this one I'm dealing with though and getting my hair done Tuesday and I'm very excited! 

I feel like I'm in a better place though, mentally. My steroids have started to come down and I'm feeling a bit more normal I'm the brighter happier Stacie that I prefer to be, it's much easier to remain positive when you feel like yourself. Things don't seem as impossible or as frightening when you feel a bit more normal. 

I have been feeling a bit better but whether that means my lung function is better remains to be seen, I felt a bit better before my last clinic and yet my lung function was still rubbish. I'm refusing to do my lung function at home which admittedly the hospital aren't to thrilled with but I just know that would not help me at all, any number I saw on that screen would just make me very upset and for the moment I just don't need that and thankfully the doctors do seem to understand that a little. My breathing does feel a little easier though which is nice but it could be down to many things of which I have no idea which one it could be. My anxiety being down, inflammation being down, lung function may be up, I'm just getting used to it... who knows but it's just nice not to feel like I'm struggling for every breathe. My boyfriend got me a wheelchair so when I'm at his it makes getting out and about so much easier and I don't feel like I have to worry about how far I'm potentially going to have to walk which makes me really anxious if I don't know. 

I feel like i'm getting somewhere, I mean who knows what's going to happen in a few weeks, a few months but I feel like at least I'm not drowning under a sea of what if's, maybes, negativity and death.

We WILL get there   

As always, thank-you for reading and chat soon
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