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 Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. 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.

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

Tuesday, 11 March 2014

Changes

It's been a week since I was admitted to the hospital for my asthma and this savage chest infection. I wanted to be making more progress and from talking to Helen, one of the nurses, and Emma, a student nurse, the feeling isn't just my own. For someone my age, it has to be easier to shake off a nasty chest infection than I have been finding it.

Its kind of frustrating.

This is the longest my asthma has left me an inpatient and theres going to be a lot of assessments and safeguards that need to be completed and set in place so that I may live a more normal life and with a better quality of life than I have been. I will be assessed by pain specialists and respiratory specialist teams. Those teams will look at how my asthma can be managed better at home and make it possible for me to spend more time at home, rather than in the rather daunting hospital environment. I had a good sit down and chat with some nurses and I let my tears of frustration finally come. I have this really bad habit of pushing how I feel down further and further down until I can't manage anymore. Kind of how my asthma has been "managed".

Before coming in this time, I was just about using my nebs to get through the days faced with more breathlessness and barely managing to do the simplest things for myself. You know, things we take for granted like being able to brush my own hair or prepare myself a simple meal such as simple instant noodles. Being left to my own devices the days leading up to last Monday, I wasn't really getting anywhere. My peak flow was struggling to get over 200l/min, my body was exhausted, I didn't eat, I just slept or lay in a haze of pain and not being able to catch my breath even doing the smallest things like going to the loo or getting a drink. It's hard to think that they would think to send me home in this state as I would almost certainly be back very quickly.

I had a review from both the respiratory and awaiting to see the pain team. These specialists should be able to help me with my asthma management on a more long term aspect. Every asthmatic gets an exacerbation at some point. It's a cruel part of the condition, but its one that no matter how hard you try or how well your condition can be, its just one of those things. The problem with me lies in that this event which is normally a "one off" thing for most asthmatics is more of a regular thing. I know the staff in A+E well and some of the ward staff too. Its good to know the staff and feel like theres a familiar face waiting to help, but the whole thing is tiresome for me, costly for the NHS and means that I don't really have that much of a quality of life.

The one thing that worries me is losing my nebuliser at home, for no other reason than it being the sole reason I am not constantly in hospital. Before getting my nebuliser at home, my quality of life was so poor that I considered ending it several times. I was being taken to A+E 2-3 times a week at the worst just for nebulisers, I was never particularly great in between and I was frankly in a very bad place physically and emotionally. Since getting that machine at home, I have been able to handle my attacks myself and then be able to shake it off and rest and feel better. Without having to come in to hospital, get poked and prodded around with and then discharged late at night knowing that given a few days I was right back where I started. I remember once, I said to the doctor "I want to die. Just let me die." and that was my lowest ebb.

Admittedly, how does one measure "quality of life"? Its not a tangible, physical thing is it? Maybe it's more of a mental thing. Down to what one wants out of life. What I would want for my life would be: independence, not to be wheelchair bound, to live a normal life outside the hospital (it would be nice to spend more time at home), I'd love to be able to walk from home to the corner shop without being short of breath or needing my crutch to support my back. I'd love to go back to when I used to go out and listen to local bands and even see some of my favourite bands in concert (albeit I would have to be in the seated area now due to my health) and I would like to be able to travel stress free. I don't think I ever could go back to twice weekly exacerbations that land me in hospital for the use of a nebuliser, especially when I have enjoyed 4 years of it being available at home and has made my life so much more comfortable. I want to go back to only needing to use it every few days rather than regularly every day. 

I don't want to be in pain. I don't want to have to take strong pain killers to just be comfortable enough to get some rest. So the next step is getting a scan and having my lungs thoroughly examined so that we can find out why. Why these infections keep happening. Why I have very poor control from day to day and how we can put it right, if of course this is something that CAN be put right. And if so, how can we do it, what would it involve and would it improve my physical health to the point where I could return to my studies, get that HND I wanted so badly and still taste the bitter taste of what could have been. But before I can do that, I need to know, what is killing my lungs so much and so rapidly?

I am really hoping these assessments are going to help me.

Loves
Wendy xx

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