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 26 September 2017

Cards, Games, Guinea Pigs.

First off, I'm sorry I haven't been updating much recently. I guess there just hasn't been too much going on and I didn't think that my readers would like to read "Well, I got up, did meds...did a few other things then slept for ages..." over and over again.  My asthma has been really bugging me though recently and its not been so simple to settle it. I don't post whenever it's bad because I don't like when things get repetitive. I have been keeping busy with some cross stitch and some other little bits and pieces. I'm currently sorting out a load of cards and other things, in fact I have boxes of both Yu-Gi-Oh and FFTCG cards to sift through and sort in to binders but it is kind of a job for a day when I have more energy. I am gradually working in that but as I say, it'll probably take me a while as there is so much that needs sorting (including boxes of cards from Opus 1,2 and 3 as well as my spare Yu-Gi-Oh cards and again, there is a lot!). I eventually want to sort the binders so that I can have playsets of certain cards together and even get some of the spare stuff on to eBay so that they can be used by someone other than sat in boxes gathering dust. 

I am also planning to show off some of the decks soon too so watch this space!

I find it irksome when I look at cards on eBay and seeing the states some people's cards end up in and the amount that some more sought after cards can be sold for even though they look as though they were fed to the dog somewhere along the way. I also hate when people put up a stock photo and the actual card they supply is not the "mint" "first edition" you so badly wanted, or (as happened to us recently) the card they give you isn't even real, and not even convincing as a fake! The thing is, it isn't exactly hard to keep your cards in good condition. If anything it costs less to look after the cards you have than to keep replacing ones that have gone tatty (especially when you have a 40-50 card deck and some of them are quite expesnsive rarities, some cards can actually be worth more than £100, just to put in to perspective). When I get cards myself, I always use sleeves (and colour coding) so that they stay neat and clean, as well as boxes so that decks and things can be gotten to whenever I want them. I also brought myself a couple of new mats to accompany my new Aster Phoenix (Destiny Heroes) deck and Zane Truesdale decks (Cyber Art and the Underworld Cyber Deck). These were particularly interesting as they are both rare and hard to get hold of in themselves. The Zane one has a rather fun story in that we had found one after searching and the seller was being a pain, then as if by fate or something, this other one in better condition came up just in time for PIP, we had to snap it up and we got a bargain with it. Well both of them actually, Aster still goes for around £30-£60 but then you have the import charges and Zane is even harder to get hold of!

Jace and I love our character decks. And we like to make them as good as they can be. Things like the print, edition and rarity are important here. There is something
nice about when you get a first edition of an older card and its in the best rarity and the condition is immaculate. It makes the deck look and feel so much better and shows that you really care about the game. I recently got my hands on a first edition "secret rare" (they're just so sparkly!) print of the card "Power Bond" and the condition was pack fresh, probably never even used before. We were really impressed by it because of how beautiful the card actually looks. The decks are coming along and we really do enjoy our evening duels. Sometimes it can get down to the wire and sometimes it ends in a really funny way (or like one occasion where it ended, exactly as it had ended in one of the anime duels with us both using a card called "Final Fusion" where you both take damage equal to both your monsters at once. It's a last resort kind of card really, but in the anime, a duel ends in that exact way and we even had the same monster cards on the field!).

We adopted 2 more guinea pigs as well recently. I have always been a guinea pig lover and I think that they are cute, funny little balls of sass and charisma. Our new friends are the same sort of age as Red (or maybe just a little younger) and they are both settling in well. Joey, our ginger pig, is going to be the dominant member of the group I think. Even if Yugi is older, he is too much of a baby to be the alpha pig and Red is probably going to have a little struggle with Joey to start with. Who knows, they may just settle down in to a routine and be happy. Tristan and Yugi tend to curl up together or sit there munching while the other two bound about and try and assert themselves. It's normal dominance play in guinea pigs so I don't feel too concerned to be honest. As long as there is no lunging or attacking then I am satisfied that they will be a good herd. Pictured here is the lovely, and rather docile, Tristan, he has a cataract on one of his eyes but it doesn't stop him from being adorable and sweet.

I am amazed though at how good Jace is with them. He hasn't ever owned them in the past so he has had to learn a bit about these little creatures and he has stepped up with enthusiasm and he too loves how funny they are and how unique each pig is. Our new additions have made friends quickly with our existing pair and now we get greeted by a chorus of guinea pigs singing for us to come and see them. They are such funny little critters really but we love them. Even if they sometimes get a bit mischievous and they can sometimes be a handful, they are very interesting animals and I do think that they are quite intelligent sometimes, (I have had some rather dense ones though!) and I would love to attempt to teach some tricks to them. I think that out of the 4, Tristan and Yugi seem the most receptive to us, but with the right treat any guinea pig come to you. This here, is a picture of Joey, the little pumpkin pig, hes the more boisterous member of the herd.

We also got our hands on the new versions of the classic Crash Bandicoot games. I LOVED these when I was kid, Crash Bandicoot 1 was the first game I had on the Playstation way back in 1996 and the second one was my favourite. I still have my original copy of Warped as well. I never realised how hard those games were! But it was nice to get such a blast from the past and it made me feel warm and nostalgic. Of course, I am looking forward to the FF7 remake and the Oddworld game Soulstorm, hopefully it will live up to New 'n' Tasty which basically blew my mind because it was so good! I hope they make more of the games we grew up with as kids as they were simple and focused on just having a good time.

Here's hoping.

Loves
Wendy xx

Wednesday 6 September 2017

Good Days/Bad Days

The last few days almost caught me off my guard. I don't know what it is but for some reason, my asthma has made things so much more difficult and I am really struggling. I think that the heat hasn't helped me at all. But then again when does it ever really help me? Last night was a tough one because I had several "episodes" in the night and poor Jace, who really is wonderful in how he takes it in his stride and doesn't hold it against me in the slightest, had to keep making sure that I was able to breathe and my pain was managed. Even on the days where I actually have trouble understanding it myself.

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.

Loves
Wendy xx

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