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, 20 September 2018

Hospital and New Piggies

Last week was a tough one. Basically I gradually started to run out of steam and when that happens and my lungs just do what they do best and constrict, well it's pretty obvious where that ends. It'd been nearly 2 years since my last admission, maybe I was getting overconfident and I likely left it to the point where I couldn't set my symptoms straight. I woke up about half 8 that morning with all the muscles in my legs and back constantly spasming and trying to stretch out. If you use a lot of salbutamol it can cause your potassium levels to drop and the biggest symptom I get when this happens is that all my muscles to haywire, like I can't stretch them out so they hurt. I didn't want to wake Jace up so I went and flopped over the futon, chest was tight so I was on nebs too. I lay there for a while, even putting on some Simpsons to distract me. I really wasn't feeling good. Jace woke up and tried to get me to bed and we tried to get me to eat, by that point, I hadn't even tried to eat since Wednesday lunchtime. Didn't feel like I wanted to. I wasn't drinking either, nor was I "going" to the loo.

Then during another neb I had to get up and was violently sick. Throwing up bile isn't pleasant at the best of times and we knew then we were getting stuck. After the neb we realised we couldn't have done anything now and we pressed my lifeline button. Somewhere along the way, either by coughing or retching, my rib fractured and even breathing was making me cry out (which is something that I almost never do unless it's bad). My temperature was really high (I think we hit 39.5°C at one stage) and my oxygen levels were struggling, even on oxygen. I remember having a paramedic put a drip in to give me paracetamol but then it's kind of a blur of people coming in and out, apparently I was really calm or just didn't really know what was happening. When I got to MAU, the sister told me exactly what was going on. I was starting to develop sepsis which is why the doctors put me on IVs for pretty much everything. All I wanted though was to sleep.

I had a lot of doctors, nurses and ITU people come to see me. The A&E reg didn't think my asthma was the problem (no wheeze but I wasn't moving air either... ) then ended up being told that I was having a serious asthma attack and needed loads of Hydrocortisone, Magnesium, nebs and high flow oxygen. It's no shock that once bedtime came, all my meds were sorted (mix up...ugh...less said the better, when your pain meds aren't prescribed properly is the most frustrating thing), I just plopped. I was happy enough to sleep until about a nurse was worried as my blood pressure dropped. I felt better though, just very tired, being awake at 6:30 after getting to sleep around midnight. The problem with hospitals is that you can't sleep well, unless you're elderly or drugged up to the eyeballs. I think it's the openness of the situation. People are going in and out and you can hear conversations at the nurses station.

I find the whole thing awkward, you're sleeping in a room with people you don't know and are usually 3 times your age so there's little to talk about. I do try and make an effort with everyone because it makes it easier to cope with. I got talking to the relatives of the girl next to me, her story was sad but her mum was lovely and so funny as she told me about her journey. I won't discuss the girls story as its not my place, one thing that we do here at "My Journey" is to not discuss other people's physical or mental issues (or private lives, including personal info) without permission to do so.

One good thing that happened here was some new arrivals. I am on guinea pig groups on Facebook and got talking to a lady from a local guinea pig rescue, Puddleducks Guinea Pig Rescue runs a sanctuary for guinea pigs who need to find their "forever home" and I had been talking to a lady called Gemma about a group of 7 pigs that she had received and this week, we adopted these two little balls of white fluff. Marik is 2 years old, he's quite skittish but when he calms he loves cuddles! Bakura is 6 weeks old and he's insane! I found the little nutter trying to climb the side of the cage, I've never seen a piggie do that! Marik is very protective of him but it's good to see how much happier Yugi has been since.

I guess that's all for now, I'm a bit tired still so I'll probably blog again soon. So until then, please enjoy this picture!

Wendy xx

Friday, 7 September 2018

How to Be Accepting of Life

The not so fun thing about having a disability and not being able to work is that people are often quick to make assumptions about what thats like. There's a big difference between not working because you can't or because you won't. The truth is that most people I know who are in the same boat as me would love to work and contribute to society. Being on benefits has a stigma all of its own and I've heard enough people complain about people like me having to live on benefits. I've been accused of being too lazy to work (I would love to see someone work when they struggle to do the basics, have to rely on oxygen and over 30 different meds). I've always sat down with people and asked them why they think that. Then I explain that my "job", if you like, is just staying alive. To tell my story and hopefully empower other people to be OK with not being OK. But I also want to help people to see that just because we have a condition, we don't need to be pitied or treated differently.

Don't get me wrong, illness isn't something pink and fluffy. Being in pain all the time isn't cute and when you pity someone or baby them, you make them believe that they're a victim somehow. Or (and this is actually grotesque) there are those who only feel safe or loved when they're getting sympathy so they actively seek it. I've always said to people that I am Wendy, Wendy has many things that make her interesting. However Wendy happens to have long term health problems but those are only a small part of her. It may sound weird but I may have to deal with a lot but there is something more in here. Something that is worth hanging on to.

My day starts with the usual checks, it's important for me to monitor my peak flow, symptoms and other signs as the slightest dip in anything can be the signs that something has started to happen and it's vital that we know before it becomes an issue. Peak flow is the most important thing to monitor for an asthmatic. It's a measurement of how well your lungs are working and sudden drops can be a sign that you need help. My peak flows are currently very low as I have a chest infection and it's a stubborn one. I know that any sudden drop off or shortness of breath is an indication that I could have an asthma attack unless we get on top of it. After checking to see what's what, I then take my first lot of meds.

My meds are hard to manage as the list is ever growing and I am constantly checking what I have, trying not to be too much of a bother by asking for things to be brought in and ordering what I need to (which often has issues with the pharmacy not ordering what I ask for or some other break down in communication) and the subsequent having to chase the doctors or pharmacist to make sure I have what I need. I don't want to be on meds, I just know that without them, there's going to be a lot of pain and the possibility of even dying without them. I don't like that I have to ask for help and I hate that I have to disturb Jace when he does things, it makes me feel like a bad girlfriend sometimes but I know that I can't really do it all myself anymore.

I try though. Every day.

My hobbies are keeping me sane. I love playing TCGs and I really love collecting the cards themselves. Making little animations is another thing I do (usually MMD videos) or drawing and sewing. It's true that I have a lot of hobbies to keep me busy but they're only possible when my body allows them. Recently I have had a bad chest infection that has pretty much limited me as to what I've been able to do. Pain is a real part of what I had to cope with and being breathless can add to that as well. It makes you feel like you're doing 4x the work. Seeing something you'd worked on come to fruition, even when you struggled with it, is such a great feeling. If anything, the struggle makes it more worthwhile. I'm hoping that things will get even more busy when club comes back though, especially now I'm a registered judge.

Being a judge is great! Since joining the roster, it has inspired me to take my game up a notch. I have a deeper understanding of the mechanics of the game and it's really opened my mind to new strategies. It's been an amazing journey and I can't wait for things to start up soon and I can start doing what I enjoy.

So what I want you to take away from this is the courage to live your lives, be happy and don't look at just the things that are wrong, take in the entire picture. Take in every detail, however small because there is always something worth working for.

Wendy xx


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