For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Sunday, 25 August 2013

A Lesson in Tightropes

*ATTENTION: This is a VERY upsetting post. There were a lot of things that were distressing to me at the time and it was hard to get it down. This is part of the catharsis process for me because its there and then that I can face what went on and get through the aftermath. I have changed some names to protect the privacy of others. Please don't judge me for wanting to get this down and off my chest, this was an event that should NEVER have happened to anyone. Although I cannot fault the care from the staff nurses, HCAs and Doctors on Ward 12 that night, there was one person who made the rest of them look awful. I am pursuing a complaint against that one person and I will do what I can to make sure that no one has to go through something this dreadful again.*

I learn and relearn this lesson often, the problem is that 9 times out of 10, I am often too stubborn or cocky for my own good. Yes, I know my conditions better than anyone else, after all, I am the one living it day after day. I do hate it and I find that admitting that things are so out of sync that the only way for me is in to an ambulance to get seen to. Sometimes its easier to say "enough is enough" and just let the staff do what they may. Most ambulance and hospital staff are lovely but there are some who aren't so nice but that's life isn't it?
I know I left things a bit longer than I should have. I was, I think, determined to pull it around and settle myself. And everyone knows how hard I tried. Before making the call, I was completely withdrawn and spent most of my day either sleeping and doing treatments. Even simple things like sitting and watching TV exhausted me and I was seriously apathetic. In hindsight, I should have called on Monday when I went off and had to do 6 neb before falling back exhausted and in a lot of pain. The weird thing was, I did a tarot spread and it predicted (with spooky accuracy) the rest of my week and what was going to happen.

It all started on Wednesday after half scaring Becky to death by not breathing properly and I knew in myself that I was in for a rough ride. I don't actually remember what I did that day or what I was doing when I went off but I went off not with a bang at first, but a fizzle. Sarah* came in with me just so that I'd not be by myself, Becky had some personal matters to attend to which I was fine about. After seeing doctors and a staff nurse who took 2 hours to do as the doctors asked ("but her sats and fine!!" "stop looking at one number and look at the patient as a whole....!") and I then had the debacle of getting a bed and wound up getting a tour with an oxygen tank between my knees and 2l blowing up my nose (meaning my sats were only fine because I was really compensating). By midnight I was finally left on ward 12 where I tried to sleep but pain was getting the upper hand.

By morning I looked like an extra from a really crappy zombie film. My eyes had sunken and were heavily ringed, I was barely saying much and I was struggling to breathe despite the supplementary oxygen.
Being subjected to 8 hours of pain was torture. That evening my body was starting to shut down and my sats plummeted, I was moving little air and we were all terrified, was this the end? 2 of my best friends came to see me and they bore witness to the whole event. Medication that never got given (I was supposed to be on back to back nebs and only got about 2-3 over the space of 3 hours), because the nurses were so busy with patients being overly needy and a nurse practitioner who was more interested in standing there and discussing this that and the other rather than helping a patient whose oxygen saturations had fallen from 97% to a distressing 89% and then down to 70% for a brief time before the doctor got the nebulisers herself and turned the oxygen up a little. She just branded me as some kind of junkie who was only after pain relief for a high, even though everything showed just how genuine this pain was and how crippling it had become.

All I wanted was to sleep and not be in pain for a moment and I was getting so distressed that I stopped caring as to how the pain was going to stop. After 7 hours I think I decided in myself that I had had enough of it and tried to discharge myself, ripping off the nasal cannula and attempting to pull my IV line out. I was sure that I was going to crawl in to a woodlands, go to sleep and never wake up. The pain and feverishness coupled with my breathing and low oxygen levels had just got to me and I could feel myself losing the will and energy to fight. I got about as far as the end of the bed until the staff nurse and healthcare assistant (who were both so lovely, compassionate and understanding) actually had to put me back in to bed, put my oxygen back on and the HCA stayed with me as I sobbed and tried to comfort me with gentle hugs and sitting on my chair holding my hand and stroking my hair as I tried desperately to be comfortable but I just couldn't do it. I have never experienced pain quite so severe as this and I actually thought that was going to be the thing that killed me.

By midnight, they managed to sort me out some pain relief without that bitch of a nurse practitioner crossing it off. I had been in agony (it actually felt like I was inhaling broken glass and nails) for over 8 hours and the doctor who was asthmatic herself understood how painful this condition really is. I was so tired that I was having to push myself to keep breathing because I was not moving much air still and my body was starting to run out of steam. I was cold, clammy and my heart was beating really fast, the spasms made me flinch everytime I took a breath and every time I spoke. It was thanks to the doctor that I was given a bit of Oramorph just so that my lungs could relax and make the spasms and pain easier to deal with. With the pain gone and other meds given to calm my asthma down and after all of that, exhaustion got me and I eventually went to sleep, I think I had gotten to the point where even if Sephiroth walked in to the room stark naked and started giving me a lapdance, I wouldn't have cared at all.

That was probably the most traumatic thing to have ever gone through. I'm used to swamped nurses, but being told by a nurse to "drink and go to sleep" was just rediculous. I used all the energy I had to almost scream "If it was that easy, don't you think, I would have done it already?" although that was broken up in to 1-2 word segments. Why did she keep crossing things off and refusing to give me medication? Surely what the doctor should have said would have gone? I'm not sure what went on there but I am going to get to the bottom of this, mark my words. I came home yesterday and I am still kind of trying to re-adjust to life outside the hospital. My arms are bruised from blood tests, cannulation, recannulation and a cannula explosion (I managed to leave some strange blood trail from my bed to the nurses station). It's been a horrid week and I am absolutely exhausted, I hope I'm back on the right track, although a part of me is wondering about whether I left the hospital too early, but I could see that they would need the bed for another person eventually.

Loves (and gratefulness)
Wendy xx

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