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 23 October 2019

Death.

Don't worry, I'm not going anywhere just yet. This is just a post about my thoughts and feelings on then subject. After all, we are all going to have to face it sooner or (hopefully) later, it's a certainty of life. Obviously if you have any thoughts of suicide or anything like that, please reach out to someone, we are all loved and have people out there who will support us!

Right now that's out of the way, let's get in to this. 

Death.

At the end of the day, the sun sets and we rest in the knowing that we've lived another day, yet we know that tomorrow will bring us another day, as it always does. But like the certainty of the sun setting, we also know that somewhere, someone has taken their final breaths and left this world. It's a subject that is sobering and yet incomprehensible. We know it's going to happen to everyone eventually but it's human nature to kind of push it away, bury our heads and pretend it won't happen. We fear it. But we don't understand it.

I've been watching a channel on YouTube called Ask a Mortician. In her videos the delightful Caitlin Dougherty tells us about everything from what happens to our bodies biologically to how the corpse is laid to rest and options for our own bodies after we die. It encourages people to open up about any fears they may have as well as the concept of "The good death". The latter is the most important thing to a lot of people because it's what everyone should want. After living your best life, who wouldn't want to go out in a way that they felt best with? 

But the question is, what is a "good death"? During my recent time in hospital, I was browsing the net and came across a moving story. A man and his wife who had served together in WW2, were married for 70 years (I always find marriages that last that long, you can imagine the things they faced and came through together) and passed away on the same day after spending a day just lying together in their nursing home (the were in separate rooms for a while due to failing health). 

https://iheartintelligence.com/couple-served-wwii-pass-away-on-same-day/?fb=777&fbclid=IwAR0_uTxMS2c8LdmWIgfA6bODvg6Y-DtIEHTHPsJqxH8O1uSIePplOjKtVVc

The full article is here, but I suggest you get the tissues ready. It was a beautiful story. And it made me think, that lady and gentleman literally followed eachother to the end, it was the one thing that they both would have wanted and they got to be together again. I'm not sure what's out there after we die or where we go but I'd like to think that somewhere we go back to who we loved most and from there I'm not sure. 

What I am sure about though is what a good death means to me. Having spent a good amount of my adulthood in hospital, I've seen my fair share of older people dying. One that I remember most was on Ward 5, a lady asked her family if she could be taken to have one more cigarette, her daughter took her in her wheelchair, brought her back and got her comfortable in bed again. They embraced and she left. After she left the lady just closed her eyes and that was that. She died with a smile on her face, no one was jumping on her chest to get her back and running around. It was peaceful. It was calm. It was dignified. On the other side, I've seen families crying and screaming at nurses to resuscitate a dying loved one despite them saying that it was futile, seeing the person connected to everything and unable to even breathe by themselves, heart failing and quite probably a lot of pain. I know myself which I'd prefer.

Again, I'm not going anywhere yet so don't worry. I have thought about what I want for my own death. One of the main things I have always said was if there was a chance that I'd be reliant on machines and unable to do anything for myself at all, it'd be my wish that my family let me go. As hard as that may be for anyone, sometimes it's the kinder solution and I wouldn't want to be in a vegetative state like that. I'd want my final hours to be with friends, family and with Jace and our piggies by us. I wouldn't want to die in a hospital ward with people milling about and who knows what connected to me. I'd want to pass peacefully and with a smile on my face. I wouldn't want to be embalmed as it damages the environment and the people who do the procedure. Instead, I'd want to be cremated and my ashes scattered in my favourite places, including the Arrow Valley Lake. I would also have letters to everyone I cared about saying that no matter what happens I loved them and thanking them for loving me. Instead of a traditional service it would be my request to have something simple, maybe with people sharing a cup of tea and goofy stories, oh and wearing something purple. Happy times spent with them and good memories. 

I guess that's the most I've thought of when it comes to my own death. Has anyone who reads thought about their deaths or planned their funeral? I'd love to hear from you.

Til all are one!

Wendy xx

Friday 11 October 2019

Tired Wendy = Grumpy Wendy

OK so this is probably going to be a bit of a rant or tangent but right now my asthma is annoying me. It's not the usual low grade poking and prodding kind of annoyance either. This is the kind of annoyance that comes when it takes me a few moments to summon up enough energy to get up and in to my chair or makes even doing normal things frankly harder than they need to be. Team that up with a cough that makes sleeping difficult and then you have the recipe for a rather hacked off and tired Wendy.

Tired Wendy isn't a good thing. When I'm tired, I feel grumpy and don't want to talk to people. There was a time when I would decide that if I was not able to be around others and I would go in to a kind of hiding in my room (this was back when I lived in a room in a HMO and as I was the only one in the loft I was able to just shut myself off, do what I needed to and then recharge enough to want to be around people again). Obviously I can't just do that nowadays and theres always something that needs to be done or sorted so its not an easy option. I don't mind that so much as I am with someone I love being around even when I just feel like a bear with a sore head. Jace understands that sometimes I just need to be by myself and do what I need to and he does what he wants to do as well. It works because we both have

I hate that my asthma still makes me feel this crap. It's been a nightmare this last week and I have still not been able to get a doctor's appointment as the surgery is so busy (as it is this time of year) and I don't feel as though we are quite at "medical emergency" stage. I'm managing, just, with nebs and I have a lot of home equipment at the ready to cope with things, incluiding oxygen and nebulisers. Without those valuable things I would be completely lost. I think I get really annoyed with it sometimes as it can still come out of left field and hit me hard between the eyes. Even getting up to use the toilet can sometimes be difficult, let alone more indepth tasks like showering, hair and make-up. Not that I don't keep trying because once you stop trying, you stop living and there's just no point anymore.

You would have thought that by now I would have been used to such things. It's been 10 years since my asthma got like this and its not been an easy adaptation as I have had to learn rigourous routine of medication and making sure that certain things are in place. I have to arrange things carefully before going out and make sure that everything is set up. A lot of people think that the disability life is easy and that all we do is lay around watching TV or something. I wish it was that simple! I don't mind my lot in life, don't get me wrong, it sucks sometimes, but I know that it could be so much worse.

Maybe that's why I don't tend to moan too much on Facebook. I know that I won't be able to get enough likes or comments that will make this better. It doesn't work that way and to be frank to quote Squall "Sympathy is a burden I don't need". It just perpetuates the feeling and compounds it that its something to take pity on. So when I see Facebook blowing up with "Woe is me" memes and people moaning about every tiny twinge it just makes me turn off instantly. How I see it is that if I was to complain about every single pain, every single cough and time when I have needed to use the nebuliser, it would be constant. And no one wants to see that. I mean, you don't update your status every time a raindrop falls or a car passes do you?

Right now, I think I'll just enjoy listening to the rain falling outside and maybe play on my latest new toy, yeah, I have a Switch now. Currently playing the new Yu-Gi-Oh! game on it and so far so good!

Loves
Wendy xx

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