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, 30 October 2014

A Positive Thing

I was wondering recently, someone asked me what at typical day in the life of me consisted of and I never really got around to saying exactly what that was like. My days vary obviously from what my peak flow/ SPo2 and every other thing says so it can be a real mixture of things. I don't think there is what we would call a "typical" day with a variable condition. Today is one of my days where I have been trying to keep myself occupied as last night we had to get the emergency GP out (it was that or they would have had me taken in, which would have been needed had it not been for my o2 and nebulisers on hand) and I had a call off my GP this morning to discuss matters. The problem with my health is that it doesn't actually behave in a "typical" way. My case isn't textbook and it has more complications than most.

10:30 my day started as it does most days with my first carer. I have been getting regular carers and it is starting to form a pattern as to who I have. I get on with my carers and I like to feel like they have become a part of my life, not just "hired help". In the morning, we have to check my peak flow (either with a peak flow meter or my electronic Piko-1 device) as this can be an indicator as to how my asthma is. A "normal" measurement for me would be around 400l/min (optimum would be 440l/min respectively, but that would generally be if I wasn't asthmatic), this morning it was a little rubbish at 210l/min and my oxygen saturation (SPo2) was about 90-92% when I took my oxygen off (I have been sleeping with it recently as my chest has been absolute hell and well, I struggle like anything without it) and when I put it back on, we got up to 96-97% which would be considered "normal" for me. I stayed in my PJs today because I have been told to rest until I feel better.

The problem I have is that I find it hard to keep myself amused when I have to stay in one place. Because of my intelligence, I find I get bored really easily and when that happens, I tend to become destructive or depression kicks in. Luckily a new "Professor Layton" game arrived, I have all but one of the Layton series and I really do enjoy the test of them. Solving the mysteries and working my way through the puzzles is a great boredom breaker. When he teamed up with Phoenix Wright (another game series that I really like) and that can stop me from going mad and getting in a tizzy. I have also been playing other games on my DS and watching The Simpsons on my laptop.

I had a phone call from the doctor today too, just to talk about how things have been over the last few days. I was asked about last night and how I was feeling. We then discussed my "preventer" medication. I had been on the Symbicort 200/6 SMART dosing (2 puffs twice a day + 1 puff PRN) for years now. I used to have Seretide 500/50 but after a while found that didn't really do a lot for me and I was switched over to Symbicort back in 2010. It has helped me and I did find it more effective than Seretide so I was happy to take it. I am now on the 400/12 dose 2 puffs twice a day. It is early days yet so it is hard to say if it is working (I also have 40mg pred in my system as well which is probably sending me loopy too) but all I can do is be optimistic. I have to believe that it'll work. Every small win is a victory and any small improvement to my quality of life is worth a go. My quality of life isn't at the "Oh my god, woe is me, my life is awful" stage that so many others would be if they were in my position. I have to think pragmatically and I have to be objective about everything. Keep a positive outlook, even if there are days where I feel like I want to quit.

You have to be positive. You can't let these things get to you or they will destroy you. Even on days where I am thinking "Seriously?!" I try and make the best of it and look at things in a better way. I suppose that my condition has allowed me a certain freedom and I have the security to live comfortably and do everything I want/need to do. I have my home, I have my friends and family and I have the pets I adore as well. I can't help but feel like I am at least lucky in that way. I do wish I could go out and have a job, my social life as I used to and do other things but I can't focus on what I've lost. I have to keep looking forward and keep moving.

We are only defeated if we allow ourselves to be.

Wendy xx

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