For life's little ups and downs.
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.
I'll flap my broken wings and erase it all someday... You'll see.
Wednesday, 6 September 2017
The problem with chronic pain is that it can be difficult to explain to someone what the difference in an acute pain and a chronic pain is. To me, a chronic pain is like a constant ache, a constant feeling that someone has tightly laced a corset around my entire body. Sometimes even a slight movement in bed can leave me cringing with my back or I go to get something and my elbow dislocates and sends a shooting pain through all my nerves in my arm (old injury that is giving me bother 5+ years after I had the fall). Not to mention the pain left over from my lungs and other problems, I have to take strong medication in order to be comfortable but the price for comfort is being ridiculously sleepy afterwards. I then have the issue with my back which makes my legs weak and my nerves feel like they're being hit constantly from my neck, down to my bottom. You see, along with my small curve and previous fractures to my spine (the worst of which was when I was 10 and was messing around with my brother, imitating wrestling moves, long story short, my back was damaged when I hit the wood on the bedframe. Made worse by my Dad picking me up and making me walk, I spent 6 months trying to walk properly again and when my Mum asked the doctor, we were told that it would only be known as I grew what lasting damage was done but I should have gone to hospital and would have probably needed treatment for it), I have my Spastic Paraplegia to deal with.
HSP (Hereditary Spastic Paraplegia) is something I have had issues with for as long as I can remember. It meant that as a child. I couldn't run around or do things like other kids did. I wasn't very athletic and struggled with things at times, I couldn't even straighten out my legs properly, and I still can't. When I was about 12, we saw a specialist who gave my Mum these exercises where I would lie on my back and she would have to manually lift my legs and hold them there, the pain was often unbearable and I would almost scream the house down. My Nan on my Dad's side of the family had the same problems I have in her legs too, along with eczema and a squint which I inherited as well. It did improve for a while in my late teens when I used to ride bikes everywhere, but nowadays its just an issue that I will have to live with. HSP has no cure and it is degenerative (most people don't experience the worst symptoms until they reach adulthood and the nerves that supply the lower part of the body start to have problems). It does mean that I am reliant on my wheelchair to have any kind of independence.
My wheelchair is the thing that allows me to do whatever I need to do. I would prefer to not have needed one but I think that I did OK. They told my Mum that me ending up in a wheelchair was inevitable but I managed to keep myself out of there until about 4 years ago when I started realising that I was really struggling to move around. My lungs were struggling to cope as well. Since getting my oxygen, I do manage to do things but it does take more out of me. When you only have 30-40% lung function at best, it does feel like you're working extra hard to do the same things that other people do so easily. It sucks, but the thing I am always reminded of is that somehow, I am still here, even if there are days where I feel like giving up. I had a bad day recently, I don't want to get in to it as it was horrible, but I managed to talk it out rather than doing something I would have regretted.
I have those days sometimes where I am questioning myself as to why I keep at this even when it looks pretty bleak and depressing. Those are the days where I am sat there looking at things and I get the dark thoughts, thoughts that I find hard to get away from because they hurt so much. Sometimes I feel like they follow my every move, like some kind of ghost, ready to strike with a nasty comment or thought that will plague me for a while and its awful. I hate this but I have to take medication to slow my thoughts down and calm the manic part of me that wants to run riot. The manic side of me can make me feel like I could take over the world with little more than a pair of pants and a stick and ten minutes later, I feel like the whole world has fallen apart and I can't find a reason not to cry about stuff, but that is the nature of bi-polar disorder and its something that I think people have a hard time in understanding about me. It isn't something I have a lot of control over on my bad days.
I'm fighting and I think that will be something that I will always have to do. Does it scare me? Yes it does sometimes, but I don't have to go it alone because there are always people around to pick me back up again, help me dust myself down and then I can get going. After all, none of the things I have to deal with are more than just setbacks and it really is up to me to not let those temporary setbacks have long term effects.
Friday, 18 August 2017
Living with an illness means that you are constantly battling against your own body to stay alive. On my good days, I can still get things done but I am still exhausted afterwards. My bad days, which seem more common recently, are often spent by me trying to do things, getting exhausted and then getting frustrated when I can't do something so simple. My day is regimented by a routine of medications which have to be taken at certain times, not to mention reordered, queried, chased up multiple times and then eventually at the end of a week getting them sorted (this in itself is extremely annoying when you have 30+ meds to keep on track of). This is a weekly thing and it is annoying. It is tiresome and the routine of it makes it daunting to start the process every week but there are things in life you just have to get on and do otherwise they won't get done and if you don't get it done, you WILL suffer.
I do try and give myself other things to keep me occupied though during my treatments. I like to draw and do craft. Obviously I can't do that all the time, its actually quite a demand on on the body when it doesn't feel up to much. Sometimes I am happy to read, watch TV or even play games but again these things are only really what I do on better days. Heck, I've still got 2 boxes of Opus cards that I need to sort through, binders to update (Yu-Gi-Oh and FFTCG). I keep telling myself that I will get it done, I think I am just waiting for a day when I have the energy to do it. Or a day when my pain is a lot less restricting.
Jace and I have been playing more duels between each other and we've been working on our newest decks. My deck is probably one of the strongest I have used, based off Zane's "Underworld" deck (complete with Cyberdark Dragon and its 3 components) and I have been really working round my ideas and strategy there. It's been a lot of fun and it has been a good mental work out. I've really taken to it lately, but then again, I have always enjoyed a good game. Even more so when that game is a good test of the mind. I like keeping an active mind, I always have.
I'm back on antibiotics again (usual Levo/Co-Amoxiclav combo) for 3 weeks this time to see if a little extra time can kick this infection back a bit. Its gotten to the point where I am spending my mornings trying to get as much purulent muck out as possible and its even had moments where it's been bloodied, after pained nights and poor sleep as it even hurts to just rest down. Not pleasant, but respiratory infections rarely are and I have had to nap just to keep myself going. The problem is that when these things get ingrained. They get ingrained and they take a lot of effort and work to get rid of again I'm having to be patient with myself and take my time in doing things. No running myself ragged or doing things when I don't really feel up to it.
I guess that for now, I need to just let my body fight this thing and get stronger.
Saturday, 12 August 2017
I have Bi-Polar Disorder.
I have Obsessive Compulsive Disorder.
I have Borderline Personality Disorder and Schitzophrenia.
I have borderline Aspergers.
I have attempted suicide more times than I can say.
I do struggle with my urges to harm myself.
My body covered with scars.
I have accomplished a lot of things.
I have always managed to regain control of myself before it's too late.
I have wonderful friends and family as well as my fur-babies.
I have a boyfriend who loves me despite the things I have wrong.
I have my own little place.
I have always been me. I will always be Wendy.
With all the things around suicide (particularly the death of Chester Bennington, still can't believe that) and people actually embracing the fact that they have fought that mental battle. The way it can make you fight to just find a reason to keep moving. There are times when you want to just do it, despite the fact that it would only cause your family to suffer. People say that those who do take their lives are "selfish" but try and see it from their side of the fence. When you get to the point where all you want to do is close your eyes and just not -be- anymore it's hard to get past that. It's almost impossible to get that out of that place. It can be extremely overwhelming and it can be terrifying.
Reaching out when you feel that way is hard and because of other people's attitudes it can be embarrassing. The worst thing is when you are at the point of falling apart and you have to try and tell someone for them to either not care, not understand or just offer an old cliche response. People have asked me "why do you feel this way?" and I just looked at them. The weird thing is that sometimes I will explain it, sometimes though, I just can't. I can't explain why I feel hopeless and like giving up when I can't even understand it fully myself. I find it even worse when I feel like I have to justify myself and how I feel and it can be so insulting when someone almost expects me to explain myself. I feel like saying things like "can I not just feel the way I feel?" or "Why should I explain my reasons? Why can't it just -be- what it is?"
I remember my first real "breakdown". I was about 14 and I had had 3 years of verbal, physical and even sexual abuse in school (including one of the bullies trying to get me to pleasure him sexually in the bus parking area otherwise I was going to get beaten up) and the teachers of the school weren't doing anything other than trying to blame me for everything. I'd started getting in to trouble just so that someone would even notice I was stressed, leading to being branded a "problem child", I remember I was getting ready for school, I was dressed, ready to go until I was about to go. I just calmly sat on the stairs. At first my Mum responded, like most would, with firmly trying to tell me to go and get my bus, then, understandably she got angry, then when I finally told her why I was not going anywhere from where I was, she phoned the school authority and thats when it all came out. I did go back for a couple of weeks afterwards, I was told to write everything done to me down but when even the teachers seemed to have it in for me, I couldn't do it. Imagine the shock my Mum had when she came home to find me sat behind the sofa with a kitchen knife. 3 weeks later I was taken out of school. I never ever went back to that place. They did try and get us in trouble but the Education Authority were amazing, they backed us and got me accepted in to another school which was nearer to my home.
The fact is, mental health is real. It isn't a joke and it isn't a shameful thing. It can damage every aspect of your life and because people can't always see it, or you don't fit the picture, it is often treated as though it isn't there or genuine. If someone does try and say "OK so my mental health is being an issue", please don't shun them. Please help them. Please tell them that they aren't alone. Please make them feel loved, and if you're the one whose suffering, please don't give up. Please reach out.
If I hadn't when I did, I don't know where I would be now.
Thursday, 3 August 2017
Today its just been a bit of a struggle to keep myself at a relatively safe level and not have to neb every so often, usually though, when I am having to do it more than hourly, we know I am running in to real danger. At the moment though, we seem to be averaging out to 2 hours. Usually a neb should last me for 4 hours but unfortunately, no one seems to have told my asthma that. Its pretty frustrating sometimes because I feel so restricted on what my body will allow me to do yet there are so many things out there that I am itching to work on or get done. I get really angry with myself sometimes because there used to be times when I could do this stuff and more and not break a sweat. I have to remind myself that I didn't ask for this. It didn't happen to me because I did something wrong. It just is.
Jace and I have been watching more Yu-Gi-Oh recently (we finished the original series, all 5 seasons, as well as GX and have watched the first season of 5Ds) and have been inspired to build new character decks and cosplays. We won't reveal too much just yet but when the time comes, but lets say this, it will be pretty cool! I have been busy experimenting again with Cyber Dragons (I love those things!) and currently have some new strategies and combos that I can't wait to try out and play with.Of course, building the deck has been the easy part, learning to use it at it's best is the challenge and probably the most fun part. With the Cyber Dragons, its all about getting the groundwork put in, then it's pretty easy from there. Once you have the right cards in place of course then things just kind of, well, happen.
I suppose that I look to things like games, sewing and other things to help me to work through the troubling side of life. It's just my way of coping really and it has worked so far. I try and think that every day that I manage to finish without incident is a day where I have won the battle.
Thursday, 20 July 2017
Today, one of my favourite singers from probably my all time most beloved band died. If you knew me growing up (well, in my teenage years) you would have remembered my deep adoration for Linkin Park. Their music helped to shape me from what I was back then to who I am now, even being a catalyst to me ending up here in Redditch after leaving my hometown (twice). The story about that lies in my membership to LPU and meeting my first boyfriend Mike, although that never worked out how we thought it would, for 2 kids, we did OK. I celebrated the start my adulthood with them (seeing Linkin Park live with my Mum, one of my most cherished memories) Chester Bennington was a huge part of how I, and millions of others who were in the same boat, managed to get there and his influence and legacy will live on through the hearts and minds of those who will remember him.
And the best way we can show that is through solidarity in mental health and by choosing to live on. Choosing to never give up. Listening to Meteora now, it's like the lyrics hit a deeper meaning to your subconscious. Maybe the saddest thing is that the depth of someone's depression, not just the sadness but the anger, frustration, loneliness (when you're in a crowd, it's still possible to feel totally alone) and isolation. Maybe it's true when they say that an artist's message is deeper when they're no longer around.
Chester was a deeply tormented man. He had overcome more things before his 20's than most people overcome in their entire lifetime. When I first found Linkin Park, I was only about 13. I didn't really like the screaming at first but over time, I came to love it and would find it comforting and moving. Like someone was saying "it's OK, you'll make it out of here and when you do, you'll be a stronger person for it."
There's something inside me that pulls beneath the surface...
I didn't really understand back then what that was. Depression is like that, it kind of swells under your skin, deep in your heart and mind. It writhes and grows. We try and hide it but eventually the cracks start to show and the pieces fall away until you see yourself looking at your own reflection and you have to face that is where you are. It's sobering. It's frightening. And it's hard to take it, stand up once again and realise that you aren't going through it alone.
It's crushing to hear that Chester is gone but I'm not sad, I'm just thankful that for nearly 20 years, the music he and the others made served as guidance, support and a reminder that no matter what, there was nothing you couldn't achieve as long as you turned your strength to it.
Thank you Chester. I hope that now you are able to find the peace you were fighting most of your life for.
Thursday, 1 June 2017
Sometimes you even need oxygen at home to help you cope with day to day life which can add an extra level of complexity, going out you have to check that you have enough oxygen in your cylinder for the time you will be out for, tubing (don't even get me started) and making sure that everything is set up properly. Asthma to me has been a difficult thing to work out but somehow I've managed it and through conscious effort and thought, I've not allowed myself to be a victim of circumstances, instead I have chosen to thrive, although there are still things that do throw me for a loop but that is OK too. At the end of the month, I am starting with CPAP to help with my night symptoms and desaturation, I feel a bit uneasy about it still, I mean it is still a huge thing to get my head around and its not surprising that I am a bit worried about how this is going to work.
So, here's to a month of good stuff!