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.

Wednesday, 31 October 2018

Why Self Advocacy is Vital

Suddenly it's gone cold. Personally I prefer the cooler temperatures over sweltering heat but my lungs aren't exactly 100% happy with the sudden change of temperature. Maybe it's not helped that I don't really feel that I have actually gotten better from last month's hospital admission, I started to get there then the antibiotics ended and then it's just snowballed from there. I'm not overly worried but I am taking precautions and keeping an eye on things. Should my peak flow be really low and unable to bring back up then I know what I need to (reluctantly) do. I'm just praying that it doesn't come to that because I have an awesome month coming up and need to be well enough for it!

One thing I am noticing at the moment is that there's a lot of backyard bonfires and wood burning going on. I can't really stop that as there's no real laws against it but the smoke is affecting my asthma. Smoke in any situation will usually result in me coughing and wheezing. Cigarette smoke is one of my biggest triggers. Actually, passing someone outside whose smoking has an adverse effect on me. When I lived in Abbeydale, there was a woman who used to talk to my next door neighbour while smoking and standing on my doorstep (and the ventilation duct that led straight in to my bedroom) and it would make me cough until I started speaking up. The did stop as well. I've been admitted to hospital a few times due to 2nd hand smoke so for an asthmatic, it really isn't something to take lightly. The bonfires though are all part of the annual "Guy Fawkes" tradition so again, it's nothing that can be helped but it's only until around November 5th so that's not too bad and it'll pass.

The one thing that really annoys me is when you go in to town and people stand outside the shopping centre (there's a narrow street entrance, and despite being designated no smoking, well people do it anyway) smoking, often around prams or pushchairs containing small children. I find this galling. Smoking and damaging your own health is one thing but when you smoke over your pram where your precious bundle of joy is sleeping is just awful. I almost want to go over and ask if they want their child to grow up with severe breathing problems and potentially end up like me. I don't because I have to remind myself that it's not my place to say anything. It's crazy, in a society where some parents choose not to vaccinate their child due to the possible side effects, others will choose to expose their child to toxic smoke and cause other health problems.

Trigger avoidance is actually difficult. You can control the confines of the home to an extent (my home is strictly "No Smoking" and there's notices outside to visitors. Not only because of the trigger for my asthma (and that it is just gross anyway) but also because if someone came in here smoking it could cause an explosion with the oxygen cylinders around here! Even outside exposure to cigarette smoke can trigger a bad asthma attack and it's happened more times than I care to think of. It's difficult to explain to other people but sometimes people realise the problem and stops doing it near you. You just have to speak up, be polite though. I find that saying "Excuse me, would you mind not smoking around me as I am severely asthmatic" can actually have a positive response rather than swearing and shouting at people.

Sometimes people have to be told and only you can do that. I've had to learn how to self advocate, especially in situations where you need to get through to someone and get the help you need. It's about having the courage to say "actually, that isn't right" and not accepting a lower standard of life because someone else thinks you should. It's not being "entitled" or expecting special treatment, it's about getting what you need and getting people to listen to you. Something everyone is entitled to. No one should have to accept that and it can be difficult. Some people will try and stop you but you have to keep moving forward and get where you need to.

It's about never giving up.

Wendy xx

Thursday, 25 October 2018

Autumn Cleaning.

I've always liked autumn. The colourful foliage and the hazy sunshine always feels much better after a long and hot summer. This summer was just uncomfortable and far far too hot for my liking. I mean, it's alright if you want to lie there in as little as possible while feeling like you're melting but it's not really my idea of fun. So I'm actually glad that the summer has ended and autumn has officially begun.

OK so that means that winter is coming and that usually means that my lungs can strop and will strop. I think I did really well though to manage 18 months without an admission, pretty impressive but there were times when really I should have but just didn't want to be sat around waiting for hours, usually for a bed on a ward which obviously has its own set of challenges for me. I'm a very private person and need to be able to shut myself away from others because being around people all the time stresses me out. I'm not sure why that is, but it is what it is really. My lungs have been twitchier than usual and that usually doesn't bode well for me. I think there's a number of things that are potentially making it happen but as for what they are, I'm not entirely sure. I think maybe the sudden cold wetness has had an Impact, I've been doing my best to just lay low for now when work on getting things under some kind of control. I have a lot of things in the upcoming weeks, not to mention that my birthday is coming up soon as well as Christmas. I've not made any particular plans as yet but I'm sure that will change sooner rather than later.

One thing that comes in autumn is bonfire night and that always means that there's backyard bonfires, fireworks and everything in between. I have never been one for fireworks but the smoke from chimneys, bonfires and even people smoking while out on the street can be bothersome to us asthmatics, I personally find it galling to see people abusing their healthy lungs while there's plenty of people who would love and cherish a set of good clean lungs that actually did what they were made to do! I tend to ask people to stand away if they're smoking because not only is it a huge trigger but with my oxygen.. well it doesn't take a genius to know the outcome of that.

The one thing that I have been doing is bonding with the new boys. It never ceases to surprise me how diverse their personalities are. I've been getting to know my floofies and work out what they like and dislike. I have found that Marik likes to cling to me like a limpet and coos when he gets tickled. Out of the two, he was the more skittish, 2 years of very little human attention can do that to a guinea pig. His fur is getting fluffier as well and he's just so docile. Bakura is crazy. He runs around squealing, generally being a young guinea pig. I do wish he could stay this small forever though! He's a palmful of soft floof.

I've also been sorting cards, making some decks and practicing with them. Between us, we have some amazing decks and can't wait to use them and their strategies. But we are having a clear out as we have literally too many cards! (Because apparently that's a thing?) All joking aside though it's going to be a fun few days to sort out what we want and what we don't (I do mean the "roll eyes" kind of fun) but it's something you need to do every once in a while, clear out the nest a bit, put some items on eBay perhaps and make room. I'd like to start up a custom pig enclosure in the new year for the boys so that would be a fun project.

I guess keeping busy has been a part of how I stay sane in some really less than sane situations! I never like oversharing on Facebook about every single bump or bruise. The older I get, the more that I find it more fun to post interesting things I've done in the day or ideas I have about things, drawings, things I've made. That kind of thing. Celebrate life's victories and achievements and sod anything else really because in a year's time, you'll remember the better things you did and the bumps and bruises you get along the way will have healed and probably disappeared completely, so why worry?

What did an experience teach you? What happens now as you move forward?

Remember one thing, if I've ever taught anyone anything it's that no matter how many times I may have fallen down (be it my fault or anyone else's), I haven't failed because I always got back up and kept going. There's been times when I've come close, heck I won't shy away from the fact that I've sat there more than once with a load of things there and I've just wanted it to end and to go to sleep. I've been there. I've got scars to prove it. But the reminder is that I survived. I've reached milestones that no one believed I could. And I will keep doing that because there's still plenty of life in me.

Wendy xx


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