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, 15 March 2018


I'm sorry for not being active again recently, still struggling with a myriad of problems which are likely to be clashing with each other and generally leaving me with little energy and as such, I've been a bit reclusive recently. It's been a tough few weeks and we're still none the wiser as to what is making this be the case. Things are getting harder and I'm finding myself not quite as energetic as maybe I should be. I've had 5 blood tests already this year and the anaemia is getting worse rather than getting better, despite being on both folic acid and ferrous sulphate. It's all a bit puzzling really.

I'm going to be kept busy though with a lot of appointments with specialists, scans and anything else they want to throw me in to. It's a bit daunting. Maybe it's that part of me that doesn't want to know what the cause of this is in case it's something that can't be fixed. I'm all for finding out what's going on, knowing the enemy so to speak, but I am dreading the all too often mumbled line of "there's nothing we can do." Knowing that something is there and it can't be made better is the most frustrating thing and I can't even describe as to why. I think it's because of the preconceived notions that you see the doctor, get a pill or injection or something and then magically you're well again. OK so that hasn't happened in my case as it's a lot more complicated than that but you get then gist of it.

I wish there was some cure for all of this.

I really do.

Not just for my sake but for everyone else who has the same conditions I have, because I wouldn't wish this on my worst enemy (if I had one, don't really have time for hating people, if I don't like them, I simply don't acknowledge their existence, why waste my time and energy?)

I've been keeping my spirits up with the usual fun of gaming, cards and anime. I also recently started learning MMD or MikuMikuDance, a 3D animation software where you can download characters, "motion" data and other things and make your own music videos. It's fun because you can do pretty much anything if you can imagine it. I have a number of YuGiOh characters who have been my test subjects and I even uploaded some of the results to YouTube too. What's fun about MMD is that you can set the stage and just let yourself run wild. My best animation so far has got to be my video for "Calc." (originally a Miku song which was covered using Kaito instead) in which I made 5Ds protagonist Yusei Fudo the star, along with his favourite Stardust Dragon (that dragon was awkward but I got it flying eventually), his trademark red motorcycle and a really awesome looking guitar too. I'll probably even revisit it in time and tweak the animation slightly but I am pleased with how the video turned out. I also have another project ongoing with the Dark Magician Girl but that is staying under my hat for now!

My asthma has been awful as usual but I'm trying to keep things from getting too difficult (albeit that is a little tough). I'm hoping that if we manage to fix a few of these little problems, we may be able to edge out the bigger problems a little. Got to hope that's the case anyway.

Wendy xx

Saturday, 20 January 2018

3 Weeks

I know it's been a while but so much has been happening that has been personal in nature so I'm kind of summing up about 3 weeks worth of stuff in one blog (first blog of the new year too, happy New year) but I've just not had the energy recently. It's not just with blogging either, I've been running out of energy to do even simple stuff and my lungs have been painful throughout the experience. The day after Boxing Day, doctor called at the house to check something, take bloods and generally assess as to why I have been s unwell. Turns out that I have yet another of those horrid chest infections that I'm prone to and a lovely bit of pleurisy to go with it. It's not all been bad though, to cheer myself up a bit, ordered items from Lush, basically my favourite products come out for Christmas so in the run up, I stock up on these to make sure I last the rest of the year! I love Snow Fairy and the Twilight shower gels, they smell incredible! And my asthma doesn't seem to mind them so much. There's a couple of new things I'm trying out too, solid shower gel (looks to be like a soap but it smells amazing!) And something called a "sparkle jar". Basically a massage bar (solid body moisturising oil) with a core full of dusting powder. Now I can enjoy the soft smell I adore whenever I want and this does make me feel happy. Lavender and Tonka (which smells like vanilla) is soothing to me and when it's on my skin and bedding the result is a calmer, happier me.

I feel pretty good about how CPAP is going for me but I still have my own personal feelings about it. One of which is that I'm still unsure as to whether or not I like having to rely on yet more medical equipment in my home. Along with my CPAP, I have still got oxygen and nebulisers to maintain as well as things to help me move around on a day to day basis. I'll admit that it does feel very strange, like when you play with a vacuum cleaner and it sticks to your skin! 
My back has been a nightmare recently and because of my uterus being retroverted, my monthly cycles  can make it worse. Since my back has gotten worse, I find it hard to move around properly and often suffer with numbness in my lower extremities. The thing with HSP and my curvature of my spine (which is getting worse due to osteoporosis) is that the long nerves that send signals to and from my brain are pretty much dying out slowly. My nan (dad's side) has the same and I always remember how much she struggled to get up from her sofa or up and down the stairs. I understand now what she must have felt. Especially when she broke her arm from falling over and never really went out alone again. I didn't understand why and what that must have felt like until now. When you fall over, it does affect your confidence and it's easy to become frightened of that, especially when you really fall and injure yourself.

My wheelchair has meant that at least I'm not stuck at home all the time. I may not like to venture too far but being allowed to is the best thing. Being stuck indoors and staring at the same walls day in and day out can become very frustrating and the feeling of frustration can turn to depression and then the worst thoughts come in. I'm not ashamed to admit that there have been days where I sat there with a pile of pills sat there and just getting the courage to swallow them. And there's even been times where I have done things that I regretted afterwards, I did those things because I just felt so desperate and as though there wasn't any other way forward. I'm reaching out more to people now but it's really not easy for me to talk to someone about how I feel, I've always put the barriers up to protect myself from other people. It makes it very difficult to get close to people and show affection. I do feel it, I just struggle to show it.

Then I came down with flu. Flu makes anyone feel terrible so imagine how an asthmatic feels with that making those lungs work more and feeling drained and exhausted. That's where I am at the moment. I feel drained and tired, my head and neck ache, my back feels like it's been subjected to a horse trying to jump on it and my sides feel tender and sore. In all, one very unhappy Wendy! The there was more bad news that my blood tests showed that I was in trouble as my red count was extremely low and have been put through a myriad of tests to work out why. We're waiting on the results but I was started on Folic straight away, I'll be able to say more when we know it. I'll find out on Monday what my further bloods came back with but it's been flagged up somewhere.
I spent the last 3 weeks either asleep or sorting through the large cache of Yu-Gi-Oh! cards that Jace's dad brought over from Blackpool. I thought that my stacks were big, they had nothing on those! Although, I did learn about and how to play another TCG, Cardfght! Vanguard. So now I'm involved with 3 TCGs. I think that card games have helped me stay sane over the last few years when my lungs have decided that they want to be anything but! I've finally completed both of my Zane character decks and they're ready and raring to go! But I've also been working on other character decks and some theme decks too so those will be exciting to show off. I've got some really rare cards and playmats which will be nice to see.

We did lose our little Red and we did take in another pig, who was unfortunately poorly, so for now it's just Yugi and Tristan who are bounding about and squeaking for food! Love them to bits though, even if Yugi is a little turd at times! His latest game is to wait until he hears humans and then squeak as loud as he can to get us to go in and give him food! He also has a habit of turning on the charm and trying to look as sweet as possible so that we melt and give him stuff! It does work as well as when it comes to guinea pigs I am the soft touch and they have me wrapped around their little paws but they are just so sweet and loving that they deserve all the time, love and care that we can give them.

So, that's about it really.

Wendy xx

Monday, 13 November 2017

On Accepting the Need for Help

I think the hardest part of going from not being disabled to having a disability is adapting to it. Having to explain to your friends that you just can't do things like you used to is difficult, especially if they don't understand or see the extent of your illness. Asthma is often seen as just an inhaler and you're good but honestly for 2.4 million of us it isn't so simple. To people whose asthma is severe or brittle, it can be hard to just do simple things. On my bad days, even getting up and in to my chair and going to sit and watch TV can be tiring. Obviously I don't think that I have it especially bad, but I think that a lot of it is down to my own stubborn nature that I refuse to give up and let myself get less and less mobile.

Obviously with the plethora of health issues I have, the only way I can guage it is by simply doing things. I don't like lying around all day in bed, I hate being inactive. Yes it is probably easier to let myself get bedbound but if that's what I'm going to let my life be, I may as well stop my treatments and just let my body give in. But I won't because I've come too far to throw it all away now. Besides I'm not a weak individual or someone who gives up as soon as it gets a little bit difficult, I've survived some of the toughest things but the fact that I'm still working towards making my life better is a testament to my personal strength.

The annoying thing is that no matter what now, I will always have my asthma and it will carry on making things frustrating and difficult. Brittle asthma is a really difficult thing to get used to. Imagine that you're stuck under something really heavy and no matter how hard you try, you can't force that air in to your lungs. I'm like that pretty much all the time and I rely on my nebuliser, my oxygen and now my CPAP to keep my lungs in check. My meds and treatments are vital as without them I wouldn't be able to do anything so I make double sure that things are taken and that I slow down. 

I got my actual machine on Thursday from the hospital. I was a little skeptical about how much different to the initial machine it would be, I was finding it exhausting to breathe out against the pressure of my machine (because of the long term damage to my lungs from infections and chronic asthma attacks) which had to be quite high to take my AHI (basically the measure of apnea events per hour, most people have 0-5 events, severe sleep apnea can be anything over to 30 but there are some cases of 100+) from 27 to less than 1 per hour per night. It means that my sleep hasn't been affected by me waking up to start breathing again and that's had a really positive effect on my moods and motivation as well as my blood pressure! It's not an easy therapy to get used to and it does sometimes annoy me but it is what it is. 

The nurse told me that people need to get checked more than they are. 80% of sleep apnea sufferers don't know they even have it, so if you (or a person you know) snores loudly (along with excessive sleepiness during the day, heightened anxiety, fatigue, existing breathing problems like asthma or COPD) get them to get it checked. Otherwise they're risking a whole host of medical complications and they could even die. There's no shame in asking them for help and who knows, maybe there's a way of managing it and improving your quality of life. I've been so much more myself these last few days than I have in months so it goes to show really. 

The thing with sleep apnea is that theres a certain stereotype of sufferers. One thing I have found in going to the sleep clinic is that suffers aren't all severely obese (I'm not skinny but I'm not exactly massive, I have a little extra padding!) and the people have been so kind and so supportive. Even the other patients are really nice and you do get a sense of who they are and their own stories. Since my disabilities, I've met and spoken to all kinds of people and I love to listen and have befriended other patients, because why be a hermit? Why not just take the time to sit next to a scared old lady and read something to them (one lady enjoyed me reading to a patient so much that when the patient was moved to a nursing home, she asked if I could read the rest of the book for her! Then again, who doesn't enjoy some classic literature?).

I do love to read, it's something I've always liked doing in my spare time. I don't usually mind if it's a book, magazine or newspaper, heck I scour the web often for something interesting. Jace and I enjoy our manga books (and we have a lot) or graphic novels (again we have loads, currently collecting the original Transformers comics through a partwork series, £20 a month gives me 2 hardback editions crammed full of colour and stories of those lovely giant robots). I recently read 4 volumes of the original Spawn comics, read some in the past, watched the cartoons and movie and even based a college piece on adapting the "Spawn the Undead" series. Jace has a massive interest in Marvel comics and he shares that with his dad and which is nice and some of the things Jace has shown me are incredible! Our little geeky retreat from the world is paradise to me!

I think that in life we should enjoy small pleasures and make them feel like big pleasures when we delve in. Just because you have a disability, doesn't mean you should quit. I know that now and now I am about to embrace a new chapter in my life, I can't wait to see where it takes us and to of course keep you all updated.

Wendy xx

Thursday, 2 November 2017

On Reflections

I've been thinking about things recently. I think that around about my birthdays I tend to reflect upon everything that I've achieved in the year and the dreams that I'm either closer to or new things to look towards. I think that my 20s was dominated by being stuck pinned down, every time I would do something, I'd be left with this sadness because I'd be so drained for days after and I would wonder whether or not I'd ever be able to do it again. Would I be able to travel to see Jace again (this was before Jace moved in)? I think that being told that there was no cure or that this was as good as it got enough times and by enough doctors just got to me. I have been grieving for the woman I was 9 years ago. Maybe it's because then I had reached a turning point in myself. Yes I would make mistakes as we all undoubtedly do but I think the biggest lesson learned in all of this isn't about how not to make mistakes, that would be impossible, but how to rise above it all and I think that somehow I got the hang of that. 

I think that the important thing that has come of recent events is a new sense of self awareness and self worth that has come from finally getting things back on some kind of track. OK so it wasn't what we originally planned for and there are still plenty of things we need to get on track with or adapt to but that's happening gradually. I think that in learning to adapt to life with a CPAP will be undoubtedly challenging but once I get used to it, it will be as natural as using my nebuliser or my oxygen. I do just have to be patient and keep a positive mindset.

One thing that my machine tells me is how well my apnea is being managed on a nightly basis. I wasn't convinced at first I have to say and I was a little skeptical about it but when I looked on my progress today I was pleasantly surprised. I managed 9 hours, my mask fit perfectly AND my AHI (the measure of how many times you stop breathing every hour) was down from 27 times to just 1 time. That is an improvement and maybe once I have kicked this infection down a bit (another 2 weeks of co-amoxiclav/levo to go), maybe I will start to feel the benefit. It can be a bit annoying sometimes and having to wrestle with a mask that is strapped heavily to your face every night does wear a little thin sometimes. Although one major change has been that my depressive moods have reduced a bit and I don't feel as anxious or on edge about things.

I do wish that my asthma was as easy to control though, I seem to be relying heavily on my medications to keep my lungs from trying their hardest to close and make me feel short of breath or wheezy. I know that is kind of what the life of a brittle asthmatic is like, I was under no impression of it being any different to be honest, but the winter is usually a very tough season for me. I know that I can get through all this and keep myself going, heck I've managed it for nearly 30 years now and I will carry on getting through the little bits and pieces that pop up from time to time. Life may not be a bed of roses sometimes but its worth remembering that it isn't a pile of poop either. It's all about celebrating the little things that make it better, appreciating those little things remembering that things may not be perfect but they're not too bad either.

So, lets see what my 30s have in store for me!

Wendy xx

Tuesday, 31 October 2017

Starting CPAP

I've started on my CPAP therapy and am finding it a little bit difficult to get my head around it. So far it's been a few days but I'm not really feeling better as yet. I'm trying hard to just be patient and even if it's making me cough, I'm trying to keep that mask on. Like my oxygen. Like my nebs and wheelchair. It's hard not to feel like this new thing is like a life sentence. I hate that I rely on things to keep myself going and in myself, I'm finding it hard to accept it. Maybe it's because I didn't expect to be coming in to my 30s with everything that's happened to me but in a way, I hoped that I wouldn't need so much help.

For anyone who doesn't know what CPAP is, it's short for "Constant Positive Airway Pressure" and it basically pushes air in to your lungs to act like a splint to make them stay open. If you have sleep apnea, basically your muscles in your neck relax and go floppy, causing them to close up and basically makes you stop breathing. Obviously this puts immense pressure on your heart and lungs, which for someone whose lungs are not as good as they should be is particularly dangerous. It pushes up your blood pressure too as well as interferes with sleeping. To have the CPAP on is very unusual. Imagine you're standing in the middle of a gale and the wind just takes your breath. It's like that really, I'm sure that it will get easier but that's the way it is for now.

It does seem a bit bittersweet that I'm reaching an age that doctors thought I wouldn't ever reach. Maybe it's because I see people I went to school with as they have wonderful lives, children and are in their prime, don't get me wrong it is wonderful to share in those wonderful things and see them so happy but it is a reminder that there's a lot I won't get to do. Personally I am OK with not having children (I was told when I was 17 that I wouldn't have one due to problems with my uterus and ovaries) and maybe my pets do fill the gap. I'm not OK with having enough equipment for a hospital ward in my house! But I can't change that, I can't just not have it otherwise I'll just get worse and it could even be deadly in some respects.

Something that did annoy me about all this was that I had been saying for nearly 5 years that my breathing and my sleep were problematic but it wasn't until January when I had a particularly confusing appointment with the oxygen nurse that I finally managed to pursuade her to do a sleep study to prove what I was saying (because she wasn't listening to what we were saying and she kept saying that because everyone does naturally desat at night and she had asthma too so it couldn't be a problem, right?). I think she thought it would prove her point and when it didn't she then changed her tone completely! What worries me is how many other things are being ignored or going unchecked? What would have happened if we hadn't stood our ground and got the test done? Luckily now it's the Respiratory Nurses at the hospital who manage my oxygen for me and they're doing a great job! They were concerned that my sats did drop to as low as 70% (without oxygen) and I was stopping breathing 27 times in an hour (which makes my OSA "moderate"). The one thing they really wanted me to understand was that it isn't being caused by weight (pred made me pile on the pounds), more because of the anatomy around my neck.

The first night of CPAP was weird. I managed to tolerate it for 4 hours and then had to get the thing off, neb (as I'd been wheezing) and at some stage I'd put it back on. I felt like I'd slept for once but I didn't feel the immediate energy boost others had. The second night was awful. Last night was a little better but it was difficult to get settled for a while, not to mention the cough and pain in my sides (pleuritic like pain again, not pleasant). I'm keeping a short diary on things so that on Saturday, I can be as honest as possible. They said there's other things we can try, dental appliances and some surgery, but obviously this is the gold standard of treatment for OSA and as my lungs are struggling due to the whole effects of brittle asthma, it's a very complicated situation, I seem good at baffling medical professionals. I've been confusing the staff at the Alex for nearly 10 years now!

I'll keep trying to get as much sorted as possible, but it's not a simple "take this, feel 100% cured" kind of thing. I think that deep down I always knew that, even if my instincts tell me to fight tooth and nail against it. What more can you do? OK so it was hard to get this taken seriously, I had to fight but in a way it's good that I did. Something wasn't right and it couldn't stay as it was.

Wendy xx

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.

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.

Wendy xx


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