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, 31 January 2019

Copimg With Life.

People often have their own subjective opinion on what being tired is and no two people can say they experience the same thing when they feel tired. For example, when Jace says he's tired, of keansnhe wants to go and sleep. It's hard to explain what I mean when I say "I'm just tired." Because to me, just simply wanting to go to sleep isn't the same thing. I wonder if you, dear reader, have ever experienced what I am about to explain? I wonder what your thoughts are and what it's like to not feel like this on a daily basis.

To me, being tired isn't simple. My body is so physically worn out that even getting up to use the toilet makes me have to catch my breath. I ache. From top to bottom but it's like my body is still going despite that. Often my eyes don't want to focus and my mind can be just as troublesome. My back aches from where my spine is bent. My stomach hurts because it doesn't want to digest food. My lungs feel like they're about half the size they should be (well, my function is about 40% at most with 65% effective gas transfer due to scar tissue and damage from infections and asthma). I sleep a lot but have to use a CPAP machine as my lungs are so tired after a day's work, along with previous injury to my throat, I have sleep apnea, that's actually mild considering.

I'm still trying to keep doing the same things I always enjoyed. I'm still trying hard to have what could be seen as a normal life. It's hard to admit that things like taking a shower or going to the toilet are hard for me. I guess the best way to explain it would be to think of it like a health bar in a game. As a baseline we always get +10 blocks a day. Normally a person would use 8-9, depending on the activities they do. Someone like me who has health problems is different. For instance, for me, I have to "borrow" blocks from the next day and that can really bite me in the backside. So say I started with 6 blocks. I then have to almost ration my day to make it through without needing to add to the deficit. So often, I have to choose what to do and try and make it work. Once you hit 0 you need twice as much to do things so you're forever adding to that "debt" of exhaustion until inevitably, you crash.

Hard. And catastrophically.

Game Over.

It then takes a week or so of doing nothing and not wasting any energy. Usually for me, it means a trip to hospital, usually a massive bump up with extra meds and literally just sleeping. It's only then that I get to restart and get back to normality (or as close to it as it gets around here).

But just sleeping/ taking it easy/ eating better won't make the problem go away. For example, when Jace gets tired, he just goes to sleep and feels better. For me it literally can take days before I can even function at some kind of level. And it's not like I sleep all that time either. Sometimes I have to find light activities to do and make sure that I'm doing the things I have to. It's not a pity party but more of a survival party. One that I still do my best to keep up with.

And yes there are times when I find myself at breaking point with it all. I'm not ashamed to admit that. There are days where I wake up thinking "And so we start again..." and those are difficult to comprehend. It does make my mind to to dark places and it then takes us both to pull me around again and sometimes I do have to have a good cry, a cup of tea (because that fixes everything) and hugs from Jace and the pigs. They remind me that I'm still here and there are a lot more people out there who care about me than I think when I feel that way, my friends and family are precious to me as well.

So, instead of wallowing in my own sadness and all the bad things, I try and keep positive. Happiness isn't something that you should expect. It's something you work towards and do as much as you need to in order to get it. So rather than being negative and moaning all the time, try and think "OK that sucks BUT this is something good that I'm focused on." Set achievable goals. Pay it forward with kindness to a stranger (if you see someone needs some help, do what you can to help them. Even a small gesture like a kind word or a cup of tea and a sandwich for a homeless person can mean a massive amount) and remember that misery isn't a contest, and it shocks me that people treat it that way.

Wendy xx

Tuesday, 1 January 2019

Happy New Year

I'll start off with wishing you all a happy new year and I hope you all had fun and enjoyed the festive period. It's been a quiet one for us here as I have had flu for the past couple of weeks and it's really taken it out of me as it usually does. Flu is horrible for anyone but to someone with brittle asthma it can really be awful and it drains you completely. Not to mention that my body has a really weird habit of overcompensating when it tries to fight anything off. And then there's the complications of flu themselves.

This basically results in an allergic reaction. In my case, it manifests itself with hives. Hives are weird as they are red, they're itchy and they drive me crazy. The first time this happened was when I was in school. It was during PE that my friends noticed that the small spots that seemed to be annoying me all day had exploded all over my body. You name it, they had happened, looking like flat topped bubbles under the skin. I was feeling pretty lousy and one friend made sure I got home, told my then stepdad what happened as I went to lie down. At around 5, I remember my mum coming in as I was sat on the floor (can't remember what I was doing) but I remember how swollen my lips were. Luckily it was just a reaction to a virus but it still happens now, almost 16 years later. It's easily managed with antihistamines and bed rest but it makes you feel lousy.

I was determined though to make sure that I was at home for both Christmas and New Year. I really didn't want to spend a festive season in hospital again. Been there. Done that. Would rather not do that again but of course it's meant being careful. Keeping everything to hand and getting enough rest have been paramount but I can honestly say that I'm not having an easy time of it. I'm back on oral antibiotics again which means there's another infection brewing which explains the exhaustion I feel right now. Another danger symptom which has been happening is the general lack of focus on any one thing. This is probably one of the more annoying things as I can start doing something then after a few moments I'll have given up and started doing something else. It's frustrating and hard to understand and even harder to explain to someone else. I did manage to speak to someone the other night but there's not been much really in the way of conclusion or generally determining the issue. I'm not sure myself either.

Other than the usual health issues, things are pretty much as they should be. The guinea pigs are growing more confident, and I am getting to see those different characters come out. Bakura is probably the naughtiest little fluffball I've had in a long time but that's just a little boy being a little lad really. The way his fluff is growing though is probably the funniest as he has a curl on his face that looks like he's been styling himself like an "Emo kid". He's getting bossy towards the others though and often he's the one who starts (and finishes) any arguements. Then when you pick him up, he becomes like a soft little baby in your arms, definitely knows how to wrap me around his little paws. Since adopting the two, it's been great to see Yugi's interaction with them and I've no doubt that this was the right thing to do.

At the moment, I keep falling asleep sat up so I think I'll leave this here and go rest for a bit.

Wendy xx


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