Earlier this week, I saw something about a process that everyone who becomes chronically ill (or a "spoonie") goes through to some extent. It isn't like we wake up at one point of our lives and say "Hey, you know what, I want a chronic, long term illness that will cause me pain and generally whittle me down." and it's even harder when all you want is to get better but you can't. When people say to me "oh, well I have asthma and.... [insert some patronising comment here]. I can still do things and I don't need the stuff you do." it is extremely annoying. My asthma isn't like "normal" asthma. Brittle asthma is a completely different beast and a harder thing to work through and get through. I don't use a wheelchair because I gave up. I don't have help from carers because I'm lazy. I don't have oxygen because I want to have it. These things have been a necessary part of my life for some time and I know what they are and why they are the way they are.
Something that I was thinking about recently was the process you go through when you realise that you're not going to get better from an illness. Its like you go through a grief period of sorts, as if you're grieving for the person you used to be and the person you wish you could go back to. Its hard to understand sometimes but even for the person going through it, it isn't easy. Heck, before all this, I was a totally different person and I lived a totally different lifestyle. I was at college, looking for a job and I had a small bedsit in a really old shared house. I loved it. Waking up in the morning, crawling over to my kettle and making tea before sitting on the arm of the sofa watching the sun come up through the woods. I would then dress and walk down the hill to the college bus and go to class.
After class, I would go home (via Waterstones usually to get a book which I would read as I walked home), fix up something quick and easy for dinner and then eat it in my room while watching TV, talking to friends and working on assignments until I was tired and went to bed. It was a simple life I lived and I was comfortable and lived the way I wanted to. I don't think that I ever stopped for one moment and thought to myself "enjoy this while it lasts because soon you are going to lose everything." and I never once thought that one thing could turn my whole entire life upside down the way it did. I do wish I could go to my "old self" and tell that girl to enjoy her life. Don't get involved with a certain person and keep pushing yourself forwards, get your HND and live the dreams you clung to for so many years.
Although I guess on the other side of it, being in this situation has taught me a lot. Before it, I worried too much about things that didn't really matter too much and often missed the point of things. Sometimes you need to really have something that makes you take the leap back and look at the bigger picture. I had fun when I could and I enjoyed the end of my teens and my early 20s as much as I could and I have great memories and no regrets. Now in my mid 20s, things are so different and I think on some level, it has made me different because it has made me grow up. Instead of running away and hiding from my issues, I have had to face them, whether it was alone or with help. Because I have experienced that feeling of not knowing where to turn to when the world seems to be coming apart around me and I know who to ask for help and I have helped others to do the same. Maybe in some ways, going through the things I have has made me a better person? It certainly showed me that there really isn't anything wrong with asking for help. Asking for help has meant that I am in a better place and things are going to get better. I just have to sit tight now and let the processes run through.
One of the good things that came from all the stuff with my neighbour is that they allocated a Home Support Worker for me. What started out as a way to get me through this whole thing has become something so much more. I have someone to talk to when things are difficult and I need to just get it off my chest (metaphorically speaking) and it does help. Having that support will help me clear a lot of the things that have been bothering me and getting things back on track. Or on a better track and I will have a better quality of life as a result. I think that is my priority now.
When I say quality of life, I don't just mean healthwise. I mean in every other aspect that affects my physical and mental well-being and I have been reaching out to the right people to get the right kind of help. Whether it's a bit of help with my shopping or a bit of support with going to see medical professionals. There is always someone on hand to help and I am blessed really because it has made what could be (and often is) a really isolating and daunting experience much easier to cope and survive with. And for days where all I really need is a nuzzle and affection, of course I have my furry friends who are always around to make me feel less crappy.
I have struck quite a bond with my Kaiba. Out of the guinea pigs, he is the calmer one and he has such a lovely personality. He's the one who wheeks and climbs the cage to say "Hello" when I sit on the chair in the living room. And waits for me put my hand in to give it nuzzles and licks. Yugi is a friendly guinea pig but hes at that hyper age where all he wants to do is run around and play. I don't mind of course because it is so funny to watch and when he does come to see me, hes very cute and sweet. Kaiba is a momma's boy though and loves to be stroked and cuddled. His long fluffy hair makes him so soft as well to cuddle, although when he goes to sleep its a case of "the mop has plopped!" Hes a Peruvian/Abyssinian crossbreed so he has the long soft hair of a Peruvian and the spiky and crazy style of an Abyssinian, cute blue eyes and a lot of character. They both have a lot of personality and I sat for ages the other day watching them playing and running around. Yugi will calm down as he grows up so I just interact when he wants to rather than forcing him.
So, things are on the up and will continue to get better!
4 years ago