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.

Saturday, 22 March 2014

Post Admission Stuff...

On Thursday I had that oh so daunting follow up GP appointment after my admission. This is usually a week afterward to see if things are moving in the right direction and that my chest is clearing. Well it's a lot clearer at the bottom with just remains in the middle/top part of my lungs. So we are getting there, slowly. I have a weeks co-amoxiclav to take and a week to keep in reserve (just in case things start raising hell again and knowing that it takes a month to get seen at my surgery, easier to nip these bastards in the bud rather than allowing a full blown LRTI to develop again). I am glad of this because I can get rid of this thing that has been making me feel miserable and hopefully my pleura will recover soon as well.

On Wednesday, I had what was one of the most painful experiences I have had in a long time. I had one of those types of attack that announce it's arrival by excruciating pain that starts in the bottom of my chest then works its way up. The pain was so intense that I couldn't move, breathe or even do anything without it. I don't get these kinds of attack often, but they are probably among the most brutal. I did try and go out and do something simple like a walk (or roll in my chair) up to the shops and back and because I couldn't focus, some toes did get squished sadly. When I came back, I took a dose of my tramadol and lorazepam to try and alleviate the spasming, but wound up needing nebs and a full 5ml dose of Oramorph (oral morphine, tastes like crap but I swear it works). Within a couple of hours and the right meds given, it eased off and I was left feeling, frankly, exhausted and just wanted to sleep. So I did.

It made me remember one attack that started that way back when I was living at my mum's in Stafford. I was about 20 at the time and had been stressing around most of the day trying to find a place of my own (being at "that age" I wanted my freedom and independence) before having work in the evening. I had noticed the pain start and had been using my inhaler (this is back when I could just use an inhaler and be done with it) and had done everything I could at the time before setting off on the 2 mile bike ride to my workplace. Back then, 2 miles was nothing and it didn't really ever bother me, unlike now where if I tried it, the only place I would end up is in the back of an ambulance. I got about 3/4 of the way there and bumped in to my mum, explained to her (as well as you can when you're breathless) what was happening and was given the advice to go to A+E after informing the supervisors that I was not well enough for my shift. My supervisor saw right away when I got up there that I was really fighting for breath and she took me aside in the office before getting a wheelchair and taking me to A+E herself. Back then, I was working at Stafford Hospital as a housekeeper.

It was the first time I had ever felt scared of what my asthma could do. I had had admissions to A+E before and had nebulisers given but I always came back from it unscathed. It wasn't until I was a bit older that I realised just what asthma really meant and how it was going to almost destroy my life and nearly end it more times than I would like to admit. If I had known what I was experiencing then was the tip of the iceberg then I would have spent more time enjoying the life I had, not lamenting what I thought I lost. I guess that hindsight is a wonderful thing and the more I dwell on it, the harder the cards I was dealt seem to feel. I was given a harsh hand in life but I don't see it as a thing to sit around feeling sorry for myself about, but more something that physically and emotionally I can overcome.

I always get a bit nervy about doctors because I find the whole thing very stressful. Theres something about going to see a doctor and having to ask about something which is on the heavy side of things. Since being in hospital, I have been on oral morphine for the pain and it is something that a lot of doctors (quite rightly) get a bit angsty over because it is a strong drug. It is a "controlled drug" (meaning that rules around it tend to be a lot stricter and it is something that has to be dealt with carefully, and unlike my other meds, I can't just carry with me for obvious reasons!) and it is ultimately very addictive and in large amounts, extremely dangerous. I was anxious about talking to the doctor about that as it has been mentioned before and denied, so I saw a different doctor who listened to everything, looked at all of my test results from the last few weeks and he OK'd me to stay on the oral morphine for one important reason. It works. It works well. The problem I always find when it comes to talking to a doctor about these kinds of things is that I always feel like I'm being judged as yet another drug seeking person after a high. Maybe that is a perception thing though. I have no idea personally, just that it is something I needed to push through. And I have and I felt better for being brave enough to stand up.

The thing with oral morphine is getting the dose right, the smallest amount possible to control pain symptoms. I have an allowance of 5ml (which is 10mg) within 6 hours. What I have found works best for me is 2.5ml every 3 hours which is what I was given in hospital. This works and keeps me very comfortable and I get good control with the other pain killers I take. It has been just wonderful to be out of pain for the first time in a long while. I had forgotten what it felt like. Not feeling sharp pains on breathing in or feeling physically sick because of the pain. That has, in turn, helped my breathing to no end and has meant that a comfortable breath in is less of a rare thing. OK so I am still not out of the woods but I will get myself there. It's not too late to hope that better health could be an option and I want to fight towards that. I won't be running marathons or doing long shopping trips on foot anymore, but it would be wonderful to be able to walk from the house to the shop, with a stick and not have to use my wheelchair.

I do love my chair, but getting to that point where I had to get one was kind of a sad thing. The problem is knowing when the time for it is and when you really can't cope without it. My scooter was alright until recently when my needs changed. I didn't just need something to get from A-B but something I could use in the flat if needs be and something that another could push on the days when I was barely with it enough to operate my scooter and needed to be somewhere (like a doctor's appointment). I have found a new home for my scooter with an old friend who when she can collect it will have her life changed for the better, just like mine was when I got it. I will continue whizzing around Redditch in my chair and carry on living life as best as I can. It took me some time to adjust to having a joystick rather than a tiller steering system and I admit I have probably run over a number of feet and crashed a couple of times. I am getting more control and confidence the more I do it.

It does have to be said though, Redditch isn't the most friendly place for disabled people. The bus drivers who should be friendly and obliging towards a wheelchair user can be extremely rude and try and get out of helping as much as they can. Rolling along some of Frankenstien's paths (paths ripped up and replaced, lumpy and bumpy) I sometimes feel my wheels leave the ground so I have to use my weight as a kind of ballast. There are areas where a dropped curb seems to be a luxury and frankly it can be a pain in the backside (literally in some cases). I remember one trip to town and back, I hit bumps in the road on my scooter, one jolted me so hard that it partially dislocated my shoulder (very painful and had to be pulled back in to place). I wonder if they will ever sort the paths out and make them less of an obstacle course? I guess it takes a lot of voices to make changes.

Wendy xx

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