Going back to my post about social media from the other day, I have decided today to make a list of people to watch on social media to try and make me more social with the people I love speaking to and getting replies from. It will help me manage things better, I am a person surrounded by endless lists for things because my illness can make me too preoccupied with trying to manage my symptoms such as coughing mucus several times an hour and that sort of thing, that I can often forget to do important things such as drinking fluids, eating and even socialising.
Paul has suggested in saving up to get an Alexa for me, so that it can remind me every half an hour to take a sip of my drink because it is becoming a big problem for me and he thought as well that this can remind me to eat and even socialise. I sometimes go two weeks between reading emails too, because on bad days (and I am getting more and more of them) two weeks can feel like two days to me, there are times where I haven’t spoken to my favourite cousin online for six months, but to me it feels like two weeks, when I look at the last time stamp I apologise profusely for the time span between our last chats and overcompensate by talking for three hours when I do finally get to contact them again. It is bad to consider that I make more posts for my blog than I do in contacting people I know in reality.
I really do lose such big chunks of time because of my illness, I go into a groundhog day whilst the entire world moves on and have normal different days and they get to partake in the events of the future whilst I am still struggling to breath and thinking its Sunday. Henry comes into my bedroom to shake me awake as I am too deaf to hear him say good morning until I put my hearing aids in and I ask him;
“Why are you wearing your uniform on Sunday”?
“It’s Thursday mum” he says.
“Oh that happened quickly”, I say whilst trying not to fall back to sleep.
But a lot of the time I don’t go back to sleep for twenty minutes because my chest needs clearing and I have to go to pee, but it is a struggle to get there whilst choking and I have a bucket midway between the bedroom and the bathroom because I often choke so bad I vomit.
On bad days those coughing fits don’t calm down for nearly two hours before I can rest again. It is difficult to be like this when my personal doctors surgery is only opened for 8am to 4pm every day and they prefer to use after 12pm as emergencies only – I never really had a planned appointment from the doctors because my personal GP rarely works the emergency shift and if I want to see him I need to wake up around 5am just to clear my chest, get dressed and eat then rest for an hour after eating just to get to see him for 10am, they are aware of this but I am sure they think I exaggerate!
If I get the flu it lasts for 4 to 8 weeks on me because by the 5th day it always turns into bronchitis and by 2 weeks it goes into borderline pneumonia or pleurisy, doctors are worried by this, it is happen too often and I am showing signs of antibiotic resistance too!
To all those people who work full-time and hate on people like me who rely on benefits to live and often say venomously how they wished they had my life sitting back watching TV all day instead of working – well I beg your pardon, most of the time I am too deaf to watch too much TV because of severe ear infections and I can’t hear music either during my bad days, all I get to do is read or be online and sitting at a desk is tiring, so you want my life huh? You can have it if I can have yours! I’d love nothing better than to work if it means I get great health with it and a great social life!
Welcome to my life for the last seven years, pretty isn’t it? Yes, please do be jealous of this so-called lazy fat bitch, because my life is great isn’t it?