3 weeks and counting.

It’s now been over three weeks that I have been in hospital, and sadly not much has improved or changed in this past week. My infection hasn’t responded to antibiotics and i’m still left stuck on oxygen because my lungs aren’t working properly due to the infection. The doctors and I have pretty much just given up. I have an appointment on Monday with my respiratory doctors at my specialist hospital, and i’ve been waiting for this appointment since April and since April i’ve been nothing but ill. I had 6 weeks at home in April and otherwise bar the odd week or two i’ve pretty much spent the whole time in hospital. I worked out i’ve spent 6 months in hospital this year already pretty much. I just want them to do something to stop me being so ill. I don’t want to get brushed off, I want them to see how unwell i’ve been and that it can’t continue as it is.

 

So this weekend will be spent resting, not over doing it and hoping that come Monday I can get some answers.  I mean I don’t think I’m asking much to be able to just live outside hospital and somewhat enjoy life… 3 weeks and i probably wont be going home anytime soon either. I just don’t know what more i can do. I just want to get better, enough to be at home. Not asking to run a marathon…

 

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Update – ‘Escalation of care’

Firstly, I can proudly announce that I do NOT have any new blood clots in my lungs. So, straight of the bat that is one thing less to worry about. However, my ct showed that I do indeed have consolidation in both lungs (infection in both lungs) which surprise surprise didn’t show up on my x-rays like usual.  My arterial blood gasses also showed very low lactate levels showing how bad my body and it’s oxygen levels have been. So i had to have another infusion to bring up my lactate levels.  They still haven’t decided what to do about my antibiotics because mine aren’t working and the microbiology team need to decide which ones to use on me.

I’m starting to feel my infection is getting worse and because of it, it’s then starting to affect my breathing and making my breathing worse. So, now they aren’t letting me get bad and keep giving me more and more things to help. However, this involves having a daily arterial blood gas to see how much i’m improving or declining as to whether or not the ‘escalate’ their care. I know what that means, i’m already on nearly maximum ward treatment and escalation of treatment only means one thing. Intensive care.

It would help if i had a functioning call bell and if they didn’t leave me sometimes for longer than i’d like. However, I’m going to do my best to stay on the ward. I’m going to hope at some point I start feeling better and I don’t end up in intensive care.

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Nervous and worried!

So i’ve been in hospital 17 days now and it’s already been a roller coaster of health/emotions and everything in between. I started out with ‘just’ a simple infective exacerbation of asthma, a mild chest infection that was just making my asthma a little worse. That then cleared up and i moved onto the next infection which was in my lungs and made me even more unwell again. then 2 days after that kicking off i woke up with terrible chest pains and my oxygen levels just falling..

I just had a CT scan today to see if i also have a blood clot in my lungs/any more stress fractures from my brittle bones and then the x-rays on my lungs haven’t been clear so hoping the CT will have some answers as to why my oxygen levels and breathing has been so bad. However, i’ve now got to just wait until tomorrow to get answers. Sleeping all night not knowing what is happening. The suspense of it all is so overwhelming. I just want to have some answers, i’d rather have bad news and know what is making me ill than them come back saying they can’t see much and still have no clue.

Just got to get through the night waiting for results now!!

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Hello, pneumomia my old friend.

Pneumonia – 1

Mel – 0

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Had the pneumonia vaccine 2 months ago, vaccinated against 30 strains of current pneumonia virus’ and since then i’ve had it not once, not twice but THREE times. This time it nearly put me in intensive care from my sudden deterioration. My immunologist gave me my results saying he doesn’t think i need immunotherapy to help with my immune system. I updated him on my situation in hopes that he will hear my plea and realise that i really do need something doing about my immune system!

Currently on so much medication and strong stuff to try and help fight this and get me back off oxygen!

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Here’s to the doctors not believing me when i said days ago that i didn’t feel well then pretty much nearly needed to be on breathing machines to maintain my oxygen levels!

It’s been a long road so far but it’s not over yet…

I’m still in hospital, but at long last the doctors are finally listening to me that i wasn’t feeling well. So back onto IV antibiotics, IV aminophyllne, IV magnesium and IV potassium. Which means a new canula. At this point i’m just glad they are doing something so even though i need to have a new canula, they aren’t just going to try and try. They will be getting the better doctor who is more experienced and getting the ultrasound machine to help find my veins.

So hopefully i will start feeling better soon and not feeling worse. Who knows!

 

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To the people that put you down when you are already down…

This one goes out to you, the people who knowingly put someone down just to make yourselves feel better. The people that obviously have deep down insecurities that can’t say what they want to say or have an opinion without bullying or making personal attacks on someone. Especially to the people who know exactly what you are going through physically and mentally and yet still chose to kick you when your in that place.

 

First off, I was raised bulling was wrong. I wont do it, I wont use personal attacks and if i have an opinion i’m not afraid to say it however, i wouldn’t make it personal and malicious just to make my point get across. I was raised that the people who bully and put people down are just silly human beings who want no more than to feel good about themselves or just have little care in the world and no heart.

Secondly, to be someone who understands mental health and physical health, it has made me so much more sympathetic to someone else going through similar experiences and i’m the kind of person who would put my terrible day to one side just to help someone else with theirs. I’d always put them first even at the expense of my own health.

Thirdly, this person claims to know what it’s like to be really struggling and doesn’t want people to feel upset by their conditions and ‘defends’ peoples honors. however, this person in trying to ‘defend’ someone who didn’t need defending as they didn’t know the situation decided to verbally attack me, put me down and continue to make childish comments at me aimed to make me feel even worse.

I was in a bad place last night, and my physical health took a major toll because of it.

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So my message goes out to everyone reading this, please no matter what bad day you are having or whatever is going on in your life… it is NEVER okay to bully and belittle someone. I don’t care if they are the worst person in the world, bullying is never ok. Another thing, if you can see someone is really struggling mentally, physically and emotionally, whether you hate that person or you don’t know them…. a small act of kindness can go a long way. A stranger simply saying ‘i hope you are ok’ or ‘sorry you are feeling like this’ can make the biggest difference.

So i ask you all, when speaking to people… if you come across someone you think is having a hard time please reach out. Whether it’s offering a kind comment, telling them a joke or just letting them know you are there. All it takes is one person to knock us down, but it can only take one comment to pick us back up.

 

This post is for my support to mental health.

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When do you know when you’ve had enough and just give up arguing, or use your frustration to argue more?

I’ve been in hospital 9 days, I was getting better and then the last 3 days or so i’ve been getting worse.  I’ve said this many times but nobody seems to be listening. I was told that the doctors would keep a close eye on me over the weekend… yet i have barely seen a person let alone a doctor. Now because i’ve been left and ignored, my oxygen levels are worse and now my infection is back 100 x worse. Hopefully somoene sees me today if not i’m back to waiting till monday. If Monday comes and nobody does anything then i’m just going to go to another hospital. It’s horrible being left to get worse knowing they could have got on top of this days ago and each day that goes by is a day that i’m getting worse and have a longer road of recovery.

 

Just so tired from telling them i am feeling worse and worse. I give up sometimes with them all. Feel like i’m just going to wait till im really bad and then wait for them to all realise they shouldnt have left me so long!

 

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Having someone/something who makes it all worth it.

A lot has changed in my life, people have come and gone. I’m not the same person i was last year and that is a good thing. I’ve accepted what i can’t change and focused on the things that really matter to me.

Since the start of the year I made it my mission that i was going to enjoy life more, no more dwelling, no more missing life, no more not appreciating things… It was like something just clicked and I just realised what actually mattered. Working 70 hours to pay bills wasn’t important, my family and friends were. Experiencing life and enjoying nice weather that was more important.

Since being ill this year i have accomplished:

  • Learning to cook loads of new meals
  • Spending more time with my niece and nephew
  • Getting my niece back into ponies!
  • Starting this blog
  • spending more time on my friends
  • Growing things from seed in the garden and successfully growing them
  • Growing my own vegetables
  • Learning to crochet
  • Getting back into my graphics making and designing websites
  • Being a happier me.

This would haven’t had happened if i didn’t get ill and didn’t want to waste any more time fumbling through life!

Now because mentally i am in a better place i’m in a better place with friends and family as well as meeting someone who is very special to me ❤

 

So, don’t give up even when everything seems impossible because just round the corner can be something good coming!

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When the doctors say something stupid about ‘quality of life’ when you are the one suffering the poor quality of life….

So yesterday, it was a normal kind of day for me, i needed a new canula for IV treatment and as usual my veins are tiny and none existent. So the poking starts, round one… fail. Next person. Round two… Fail. Next person. Round three, two people and an ultrasound machine and after many many attempts they finally get one in. This is normal for me, being stabbed over and over and over being left like a bruised pin cushion… So, the doctor then says to me “what are we going to do if this doesn’t work and we can’t get it in?” I immediately know the answer to this because i’ve been promised it so many times. So i blurt out ” PICC LINE!” which is a  more perminant one that stays in and they can use again on other admissions.  Once in it means i dont have to keep getting battered over and over.

This admission when i came in, it took them 6 hours to get access to my veins to give me life saving treatment. 6 hours that could have killed me because it took so long. So after i made the comment about wanting a picc line, the doctor goes ‘There is no quality of life having a picc line in and you can’t just have it for the sake of it” No doctor, i’m on 5 months of hospital this year alone, thats only 2 months outside these four walls. Thats just this year. I have this everytime i’m in and it’s always the same. At this point i’ve just had 2 hours of stabbing and i’m  in agony, my arm hurts and im bruised all over. How he thinks that it’s ok to tell me that is better than a picc line i dont know!

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Back in again…

So i’ve been holding out, avoiding hospital. Now i’m back in again however, i avoided intensive care this time.. ive got 7-12 days of my IV infusion to have to help… I’m probably going to miss my hospital appointment on monday… I’ve got a nice big room to myself however totally boring!!

 

currently stuck on the horrible oxygen mask and still only have 91% sats… 😦

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