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, 18 December 2018

Beating Isolation

One of the hard things about living with a disability is the feeling of isolation and being unable to do things most take for granted. For example, a trip to town needs to be planned. Where are we going, how long, what regular meds to take and making sure that I have an emergency supply and the nebuliser ready just in case. I have to keep everything at hand and make sure my tank has enough oxygen in. I really find it hard to get out and about sometimes but the not for want of trying. I used to go out more but its gotten a lot more difficult. But it doesn't mean that I don't try. You have to try otherwise you risk isolating yourself further, and what's the point in having portable oxygen and a wheelchair of I was just going to lie in bed 24/7. Even when there days when all I want is to sleep until I feel better but I have to be realistic about how much "better" I can get. Brittle asthma is a very unpredictable disease and it really does vary from day to day depending on so many factors.

The one thing that makes it difficult to go out is getting on a bus. Sounds so simple doesn't it? I mean millions of people get on millions of buses a day, but how many of them get on a bus in a wheelchair? Having to ask the driver (who often looks at you like you're dirt) to lower the ramp, asking people to move from the wheelchair bay (despite wheelchairs having priority, there are buggies, some empty some not, and understandably people don't want to put a buggy down, and some people can be downright rude). Then there's the actual ride itself. Redditch buses are notorious for being awful... I guess the less I say there the better. Once we get there though, I love exploring and looking around.

When thinking about isolation, I found myself wondering something rather, admittedly, odd. In Switzerland, it's illegal to own just one of some pets, such as guinea pigs and goldfish. The guinea pig thing I can understand as they are really social animals. When Tristan died, Yugi was alone for about 8 weeks and during that time he became so clingy and just thankful of any human interaction. This happens often when you only have one pig. Patch was alone for 6 months before he got a friend and he was more like a puppy at times, always wanting me to be close by. Since getting Marik and Bakura, Yugi has been a lot happier, albeit he's still very sweet towards his humans.

So you're probably wondering where this is going? Well, after finding this out, I found myself wondering about goldfish. Do goldfish really get lonely? Turns out that they do. I then started thinking about people on the whole. Since the creation of social media (Facebook, Twitter, Instagram etc) we spend more time in the virtual world and it is the most common way that people communicate. Which is kind of worrying to think that most of our lives are conducted through glass screens (much like being in our own personal fish bowl perhaps?) Then I started looking through my Facebook timeline. The most glaring thing I found was the sheer amount of stuff people share online. I'm personally a very private person so don't like to share too much of my private life online. That kind of thing only invites stalkers or gives people the ammo to use later. I find that oversharing your life with everyone to be quite cringy and sometimes it does come across as attention seeking. There's nothing wrong with reaching out but constant moaning isn't going to fix anything.

My general rule of thumb is "would I be happy to do/announce this in the middle of town? If not, then leave it off Facebook". Besides I don't think people want to see "I'm so ill... In pain... Etc" several times a day or the same memes that are about how bad someone has it despite it being their own doing. Maybe it's because I internalise everything  because  I don't like burdening others  with my problems. I also found that Facebook makes me feel more wound up sometimes but it's the only way of keeping in touch.

All this because of thinking about a goldfish!

It was my 31st birthday last month (considering that I was being told that I wasn't likely to see 30 more than once, I've done pretty well for myself) and as usual it's given me time for some reflection on how I've grown over the years. Then noticing that at heart, I'm still that person I was 10-15 years ago. I still love the same things plus loads of new things. I've learned a fair amount of lessons though and there's so much that I would probably tell my 16 year old self to watch for and probably tell her to enjoy herself more. Things will get tough but you know something, you'll come out stronger as a result. Get out, experience as much as you can. Don't let anyone take away that independent streak and stop trying to please everyone else. Unfortunately though, hindsight being a wonderful thing, I did make choices which maybe weren't great really but if I hadn't made any mistakes, I wouldn't have met Jace and we wouldn't have our happy home here. So I guess it's all worked out pretty well really.

As this year comes to an end, it's got me thinking about the next year, what I want to do with it and how much I am hoping for better luck health-wise.

Wendy xx


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