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.

Tuesday, 28 February 2017

Keeping Busy

So, just lately my intestines seem to want to wriggle their way out of my belly button. For 5 weeks now I have been having pains whenever I eat anything and have spent hours on the "throne" trying to get rid of this feeling. It has been like I was trying to digest boulders and I felt everything move from the top, right round to the bottom which in a word was awful. So then I discussed with the doctor who said "well we did say we suspected Crohns and this certainly supports the diagnosis and the tests you had done". I'm being given another medication to help with the spasms and stomach pains and to make food easier to tolerate but this is a problem which I have been warned can wax and wane at any point, a bit like my asthma actually.

On top of that, I then find out that the fungal pneumonia is back (I get issues with this often if I'm run down). We  took a sample of the gunk to the doctor and he listened to my chest before saying "You have another acute infection." There has been a bacterial aspect as well and I have been on a grueling course of antibiotics as well as starting on a course of strong antifungal medication to clear the rubbish. Theres been a bit of blood in the stuff I have been coughing up but that usually means that I have been coughing a lot and that inside my airways is sore. It isn't a pleasant thing to experience and it does make me feel quite washed out and tired. It takes time to clear as well and it can also cause other complications as a result. I'm not overly concerned at the moment though as I am holding my own at least but it is starting to wear me down a bit more than I would like to admit.

So I have been a bit quiet recently because I have been spending a lot of time just lying in bed trying to shift this rubbish, although my Opus 1 booster pack box did provide me with some welcome distraction to it all. I am a bit of a TCG junkie these days and I find not just the games to be wonderful but I like collecting the cards as well. I've been cultivating a rather lovely collection of the Opus 1 series and am readily awaiting next month when Opus 2 hits. There looks to be some things that both of us want from the set and of course I do intend on completing my collection of Opus 1 cards too, but that is something to work on and of course it keeps me occupied as well. I am poud of my collection folder but its something that we can enjoy doing together. I have also started to sell cards that I don't need or have loads of. This way generates a small income which I can use to get more cards, kind of like paying for themselves. Getting myself a little reputation for being a good seller too.  Collecting trading cards is something Jace and I share with each other. Between us, we have a lot of Yu-Gi-Oh and Final Fantasy cards. His deck of choice is based on Final Fantasy X and mine on Final Fantasy VII and we are proud of our decks and we love how much fun the game is. Cards of much loved characters and it's still growing. .

I was supposed to get my new wheelchair, but there was a clerical snag BUT we are now just waiting for that last bit of notification to say "Approved" and that should be done in the next few days. The chair is built, tested and ready. Because I am on enhanced rates for both my PIP components (PIP is broken down in to 2 components, mobility and care), I am entitled to use the Motability scheme. To someone who doesn't know, Motability is offered to people who get the enhanced rate of the mobility component to lease either a car, scooter or powered wheelchair. You get a lease for 3 years so you don't own the chair, but this does mean that any issues you have can be resolved a LOT easier and after 3 years you are offered an upgrade (if you are still entitled) and when your lease ends and you continue with them, you get a bonus as well. So that is kind of nice. The new chair is basically a few models better than my current chair. I have a Karma Ergo-Traveller at the moment and it has served me beautifully. The new chair is a Karma Falcon which has a number of brilliant things that it does, such as the way you can move the armrests to allow ease to get in and out as well as kerb walkers and an oxygen bottle holder. Things that to someone like me make a difference. 

Although on reflection, these things also serve as a stark reminder that I am one of the "lucky ones" whose PIP was sorted almost immediately and without any kind of problems. Then again it is probably hard to deny that my disabilities do have a profound effect on my life and how I live, I know this. I have had to accept this. I hate it when people assume that people with disabilites are a certain way. Like if you aren't in a wheelchair then you can't be disabled or that people with anxiety are all just "taking pills and staying at home" (such an offensive thing to claim) and certain illnesses "can't be THAT bad because [insert name here] has [insert condition] and -THEY- get along just fine..." I suppose ignorance is bliss really.

So where this leaves me now, well I am just doing what needs doing, resting and keeping on top of my meds and trying to keep my asthma from flaring up. Yesterday was awful and I am really suffering for it today but knowing me, I will find something nostalgic to watch on YouTube, snuggle down and carry on working on my own Terraria "Railway" idea. I was inspired recently by the adventures of a certain blue tank engine and well, since I started work on it, I haven't been able to put my project down! I spent nearly an entire day crafting this out of materials and I have to say that I am really pleased with how it turned out. Even down to the use of marble for the face and the gold number 1.

Wendy xx

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