#hyppxia

[incurableoptimistest1994]

So, y'all are probably wondering where I've been lately... or probably haven't, but I'm gonna let you know anyways! Truth be told, I'm a pretty poorly girl at the moment. I've had three hospital admissions in ten weeks., and more in the last year. I've had 18 kidney infections in 18 months... five of those infections became sepsis, of which three led to admission to hospital, IV antibiotics, severe tachycardia, and respiratory distress, two led to internal bleeding, one led to extreme vomiting, and another one to kidney stones. The infection has come around so often it's now resistant to a few antibiotics, hence why I often end up on IVs. I am trying not to think of the day that I become resistant to all antibiotics. I live in terror of that day. My body is getting tired. It's struggling to cope with all these infections. I'm now classed as high risk of kidney, liver and heart failure, and I'm tachycardic during every infection, and often even when I don't have an infection... I can now become tachycardic just from overdoing it a bit. I'm also now on oxygen overnight; all night, every night. This is to treat severe hypoxia that has developed in the last year, and that was so bad it almost caused me the loss of several toes. Thankfully after three months of oxygen therapy my tootsies are no longer black! Phew! However I do have to have one of my toenails removed, as it's died from the lack of oxygen... I can't even have the nice normal operation, because of my spasms! I'm waiting to hear if I might have to be admitted and have a general anaesthetic just to have a stupid toenail removed. Boo! My most recent admission was particularly scary, as I had a blood clot on my chest... this has never happened to me before, and it made me extremely unwell. I'm home again now thankfully 🙏 But for how long? My palliative care team are calling for me to be admitted for a full investigation. They can't believe I'm still waiting to see the renal specialist... they were even more shocked that my appointment in October is a big improvement on the original date in January, that came about after a number of phone calls were made about me by various family members and medical type people... go Team Amy! So we can't really tackle my kidney problems til I see this guy. But they're worried something else is going on, and they're missing it. They're worried that my body is deteriorating faster and more severely. They're worried... and so am I. Mental health wise, I am actually coping surprisingly well. My psychologist would be proud; even months after my discharge from psychological services I am continuing to use the techniques I learnt. And they're working, for the most part. I mean, I still have Bad Days... but I'm not suicidal or clinically depressed. I'm just allowing myself to feel sad/mad/bad about the scary things going on in my life, which is far healthier than what I used to do (bottle everything up, ignore it, then deal with an explosion of badness that resulted in severe depressive episodes and becoming suicidal). Most importantly, I am communicating with my family and friends; about the good AND the bad. I can honestly say that my family and friends are what keeps me sane. They make waking up day after day to fight the good fight worth it. I'm blessed 🙏 and so thankful for them. My palliative care nurse told me on Monday that she is so impressed that despite being so poorly, I am continuing to try and get on with living my life. This was nice to hear 😊 but I can honestly say that I don't have any other choice. The day I stop trying to live the fullest and most fulfilling life I can live is the day my disease wins... and I'm not having that. It will kill me one day, but it will never win. I will live every second of my life as fully as I can. And that's what I'm doing. Anyways, I'll keep y'all updated... there will be news after I have an important appointment with my neurologist, and lead consultant, Jenny, on Friday. Adios amigos!