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.

Thursday, 15 May 2014

Home Oxygen

Well, my clinic appointment last Wednesday ended differently to what we were expecting. Or more like how I thought. I was expecting to go in, chat to the consultant, told to carry on as we were and be on my merry way. What ended up happening, because I was close to things getting really bad, was that I was taken right over to MAU triage, rushed to be urgently put in a bed (I was hypoxic, exhausted and generally not a well girl). By morning I was settled on a proper MAU female bed, given my treatment of steroid injections, nebs and oxygen. The asthma has calmed down a bit but I'm still not right. Don't get me wrong, I'm better than I was pre-admission but I'm only really recovering to a certain point (probably about 70% of how I'd have recovered about 5 years ago). Unfortunately there is a limit on how well I can be and as hard as that is, we have to accept it.

I saw my consultant yesterday, he has set up for me to have a supply of oxygen at home to use as/when/ as often as I need it. I'm gutted that its come to this, but after 6 years of uncontrollable, severe asthma, repeated severe infections and everything else, it's no surprise that my lungs are scarred and are struggling to keep me properly oxygenated while I live a normal life. I look back and wonder sometimes, had I been allowed to recover properly when this all started and bullied against getting help sooner, would I have gotten to this point? They refer to it as early stage type 1 respiratory failure, the sad thing is that as I get older, my lungs are going to get weaker. Eventually, I won't be on short burst or ambulatory and will have to be on my oxygen more permanently.

I have felt the degeneration of my lungs for some time. I don't think I'd be able to do half of the things I used to do at college, or riding my bike to college and back. I used to love going out to the pub on a Friday, nightclubs on a Saturday and trying to sober up for college on Monday. Typical life for a typical young person really. I only noticed that I started to slow down when walking from the bus stop to the college started to become something of a challenge. As time went by, I became less and less mobile and I never noticed how much I was fighting until recently. The things you take for granted, like being able to walk from bed to the bathroom and back or washing and dressing yourself, those are the things that when you are limited, you really feel it and it really starts to take away from your independence. 

I've been home for about 5 hours and I feel better than I have in months. I have energy, I want to move around more and I am no where near as sleepy as I was. I was having trouble concentrating on anything for more than a few minutes at a time and I was generally not coping well. What surprised me is that I didn't even have to suggest a home oxygen supply, the consultant said that was what he wanted to do right away and would have had it arranged for after clinic and I really can't understate the profound positive effects it has been having on me. My heart rate is slower (now because my lungs are getting some support, my heart isn't working as hard) and I am generally feeling so much better. I managed earlier to walk from the sofa, to the bedroom, run a bath and enjoy a nice soak while being able to breathe in doing so. 

I could bore you with the things I've been able to do since being able to breathe properly, but I think it would be a bit moot, instead, I am going to go out and enjoy a new lease of life and hopefully better health.

Wendy xx

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