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.

Friday, 18 October 2013

Uncertain Times.

It’s been a bit rocky over the last week or so. I have found out some things that actually I would have rather not known about as well as sustained quite a sad loss which has been felt throughout the house and even to others who knew. It’s times like this that I try and turn to my instincts or ask “The Big Guy Upstairs” as to why all this happens and what I should do next. Sometimes I can find an answer. Others, I really struggle and it can leave me feeling very torn and confused. The truth is, I sometimes have a hard time in accepting that bad things can (and often do) happen and there is often not a lot we as people can do about it. Some people really come in to their element when they’re upset or hurting and will just let everyone flock around sympathetically and they’ll get through it. I, however, am the kind of person who internalises everything. I always believed that there was a good reason that they were called “My Problems” and that was because they were mine and mine alone to deal with. I think it’s a bad habit of mine to push how I feel aside and do what I can to help others instead but the common result is that although someone else has their problem tended and helped, I am sat still puzzled and trying my hardest to work out how I feel about everything. I’m not an openly emotional person, but Thursday was one of those times when I really opened the floodgates and I really had to scream and let it all out.

I have always said that the hardest part of being a pet owner is the time when you have to say goodbye to them. It’s something that, throughout my life, can still call up some real surges of deep sadness and emotion. You never get used to pets dying and even less do you feel the pain of such an event. I feel it the same way now as I did when I was 10 and my first ever guinea pig Sniffy passed away suddenly and it’s no secret that I do get very emotional when it happens. I cried when Alphonse died, I cried for Hope and I cried for over a week when Patch left this world and I did cry for Zell, Nero, Gizmo, the rats and even Gatsby (even though we only had him for a week) and Edward. I just didn’t think it would have hit me as hard as it did.

Kadaj was getting old and he’d had this on and off cold for over a month now (sometimes he really seemed to throw it off, others he was just not himself at all and I nursed him through as best as I could) and I think it was strange that he wasn’t interested in the cucumber and tomato that I was giving out yesterday. I had been planning to take him to a vet to get him checked over, but sadly he just couldn’t hold on anymore. Guinea pigs aren’t very easy to look after when they get sick and usually by the time they show any real signs you’re already past the point of no return and there is little, if anything, you can do for them than make them comfortable and hope that they either pass in peace or can wait to be put to sleep. I’ve done the whole having a pet put to sleep, it’s probably one of the hardest things I have ever had to do. That walk from the door where the vet was standing ready to set my Alphonse free to the door where people were waiting for me, felt like it had extended to about 10 miles and I don’t think I have ever felt so powerless and so guilty in my life. It’s not easy when you know a pet is ill and dying. Patch died in my arms and I felt him go, I think that was another time when I just wanted to stand up and scream at the top of my lungs about how cruel life is and how painful it is to love. I found Kadaj this evening, I had gone to make something to eat and felt the room seemed eerie. My instincts were to check Kadaj right away because I couldn’t see him and Miles and Phoenix were being unusually quiet. I think my heart sank when I brushed the hay and newspaper away and found his body lying there. He’d probably only been gone for about 15-20 minutes but everything about my boy was different.

Kadaj was always a spirited little fellow, from the moment I saw him in the Adoption Centre at Pets at Home (under the name Marley, he was about 5-6 months old) and our eyes met, I knew there and then that I wanted that creature and I flat out refused to leave without him after hearing about his terrible ordeal. Originally Kadaj had belonged to a person who owned reptiles and they had only gotten him, and I think one of his brothers, to use as live bait. I’d not long had Gizmo and Hope and I remembered seeing this nutty little tortoise-shell with a mottled face in the pen with them as well as another young boy. I don’t know, nor do I think I want to know the fate of the other guinea pig, but I knew this little creature needed me. He needed someone to love him and show him that not all humans are cruel and depraved and I was already feeling raw about Alphonse, despite having Hope who was blind and deaf and relied on me heavily anyway, so I had him and I raised him. Yes he was sometimes a naughty little thing and he didn’t shy away from a scrap with some of the other pigs (not to mention his “Barbering” incident with Gizmo), but he was probably one of the most loving guinea pigs I had ever known. He wasn’t stupid either, although he wasn’t really a wheeker, he had his own way of getting my attention by bounding around the cage or standing up on his back legs before rolling over backwards because, let’s face it, he was a chunky boy and was probably one of the most food motivated pets out there. He had a good life here and was loved and well looked after. He seldom bit people unless of course you were winding him up, but most of the time, he was happy enough just to have a big pile of hay, a bit of veg perhaps a good lap to snuggle up in to. He will be sorely missed by all of us here, especially the youngsters who spent most of the evening looking for him and wheeking as if to call him. That in itself was heart breaking because I knew how much of a bond those little mites had forged with Kadaj over the last month or so.

I suppose what has been happening with my own health has also come as some kind of a shock. The problem is if we had started looking down this path sooner, I could well have been back on track by now, not a year later and it’s still not completely resolved. I have been having an almost constant run of chest infections which haven’t really responded to the various kinds of antibiotic medications that have been thrown at it. The problem is that this infection is probably caused by fungal spores which come from rotting organic matter (I.E. cut grass not cleaned up, fallen leaves and other things that normally we would come across and not have a problem with, but as I am immune-suppressed due to prednisolone use) and if we can’t shift it with antifungals and get the right lung’s lower lobe working properly one possible outcome may possibly be facing surgery to remove the failing lobe and a long hospital stay. To be honest, I have enough of an issue attending in A+E and staying overnight, being there for days while I recover just makes me feel uneasy. I have so many worries on how this could turn out. It’s kind of scary to be honest and I worry about what kind of future I look forward to, for myself and Jace. I think I need to get through the hardest part of it and keep trying to kick this off with medication. We are keeping up with antifungal meds and Lorazepam for the pain (as well as helping the distress of the pain, it helps to relax the sore and overworked chest muscles that have been making my whole body feel like it’s working too hard.)

I have another set of worries healthwise and this one is a bit more looming as it could well mean a stay in hospital in itself. Because of my gastrointestinal problems I have to be admitted to the endoscopy unit soon to have a colonoscopy and gastroscopy. I’ll be heavily sedated for this and I have no idea how my asthma is going to behave (if its anything like it is at the moment then I have plenty to worry about) before, during and after the procedure. During which they’ll be removing polyps and taking biopsies to check for the worst case scenario illness like Crohns or Colitis (and even the slight possibility of bowel or stomach cancers, even though, I stress that this is a SLIGHT possible outcome and it is more likely to be something like Crohns or Colitis). The most unpleasant part of the procedures is the fact that I will be having cameras inserted in to me in a rather uncomfortable way, but with luck, I won’t be awake enough to remember much and will probably sleep like a log for days afterwards. I just hope that this is a problem that can be put right as well as the Hiatus Hernia and problems with my stomach valve (causing my reflux) and after a bit of treatment, I can be back on track with that. Maybe if I can eat properly without pain, I can get the energy to get over all of this and move on to the next phase of my life.

The next phase of my life of course involves Jace and me living together as soon as possible. We have started making our mark on the place where we will be living, making small alterations to the layout and décor and making the place look not only warm and inviting, but the place where our love story is set to continue. I don’t feel scared of showing Jace the reality of what an asthma attack looks and feels like, how scary that can become and how it can get from 0-100 in less than minutes at times. He copes better than most people would and when I had a huge attack on the Monday, he was so calm, so kind and so gentle in making sure that I was going to recover and rapidly. I think that had it required the emergency services, then he would have coped well there and would have been more than happy to go in to hospital and make sure I was going to be alright. I think things are definitely working out for me. I don't know exactly how things are going to go, but we'll find out soon enough.

Wendy xx

Tuesday, 15 October 2013

[insert witty title here]

Since having my injury from my scooter accident last week, I confess, I hadn't been feeling like myself and my chest has suffered notably, what was a chest cold seems to be attacking a bit harder than it was and I was feeling awful in a word. Over the last few days, it has been nothing less than a small mercy that I haven't been back in A+E from my asthma becoming more and more ferocious. Last night though, I realised just what being in love and having someone who loves you with every fibre of their being feels like.

Love is doing the little things that you appreciate. When you fall asleep on the sofa together, and that person wraps you up in their arms and just watches over to make sure you're safe. Love is gently helping to tuck you in to bed and making you endless cups of tea just so that you don't have to run around when you don't feel well or watching films and talking late in to the night about music, games and other such things. Last night, I was really feeling unwell. If it hadn't have improved much more than it was, I would have had to take Jace to the first hospital run, the thought of that used to scare me. It is scary to show someone that a part of being you involves that anxious wait, those horrible sounds and seeing you in that state and in that much pain. I was anxious when Becky first saw it, I was terrified when S saw her first asthma attack and hospital admission, but I soon learned that it wasn't something to be scared of, it is just a unpleasant side of my life.

When I actually started having an attack, bearing in mind that Jace has seen some of my smaller attacks and has witnessed asthma in his brothers, he was so calm. So gentle. So supportive and loving as he helped me to set up a nebuliser and get it running, once it was finished, he made sure I was comfortable in bed to rest and we lay in bed watching films, even if I dozed off for a little while, we just lay together. One film we watched last night was "Wreck-It Ralph" which I had never seen, I enjoyed it thoroughly! For that brief couple of hours, I was happily lying with my boyfriend doing normal things that boyfriends and girlfriends do. I felt safe and despite having to use my stronger pain meds to be comfortable, I felt like I was in a good place. I had a taste of the wonderful life we have ahead of us when he does finally move in here with me. I don't think I wanted that moment to end, it was just so lovely. If it had have ended up in us going to the Alex, we probably would have taken our DS and 3DS and the laptop and he would have made it a nicer experience.

The funny thing actually, going to the hospital with Becky, S, or even Nat, I have seen that it isn't a scary place and the prelude to worse things when I got home. I used to be so terrified of asking for help because, even though at the time things were usually at life or death point, not because of what would happen at the actual hospital, but the events of what would happen after getting home. Now what awaits me is usually a nice cup of tea (or if I've been away for a few days, a nice hot bath), being tucked up in to bed and encouragement to rest, heal and allow myself a few days to get back on to my feet slowly. The process of recovering from asthma attacks is rough and when you live on a constant barrage of them hitting you left, right and centre, it is something that never seems to end and it can leave you feeling like you're on a knife edge and ready to just pack up and say "fuck this shit, I'm done." I'd be lying if I said that I hadn't ever felt that way or even attempted it at some time. There are days where I do feel like I have had enough of this now. Enough having to talk to doctors, enough of having to shovel in a load of pills, enough of waking up at stupid times just to neb or throw another few pills down. It's not easy. At times, it's anything but fun. But you know why I keep coming back and fighting another day? That would be my dedication to keep going no matter what and no matter how hard things seem. Nothing ever is as hard as we think it is anyway, but that's not to say that it's all sugar and rainbows either. What makes it easier is the friends we cherish and the people who help us through the tough times, knowing that when it's their turn, we will do the same for them.

I think, sometimes I worry that things aren't going to get much better and that I am never going to shift this thing, or if I do shift it, then it will just be a matter of time until more of these infections creep in and get the upper hand over me. As it is, it has been a year and this pattern has been a constant, frustrating thing and it has been made worse by a lot of things changing in my life. The stress of organising cover for when Becky left, the stress of money worries, one thing after another breaking down and either needing repairs or replacements, future medical treatments that if I am honest, scare me because I don't know what's going to happen. All I know is that it is going to be a long, scary and painful road, but the light at the end of the tunnel is going to be that no matter what I have to face over the next year, I am going to have Jace and he will be there, with gentle hugs, making sure I can rest and sleep, I'll have the pigs to offer me comfort and of course the wonderful safety net of some of the best friends a girl could ever wish for.

To my friends, I am thankful to have been given such a gift. Some of my older friends particularly, who have been there through everything and anything and we all grew up together. My newer friends (even if some of you live far away from me) are amazing and I love them all dearly like brothers and sisters, surrogate mothers and even some that feel like fathers or uncles towards me. To the small family I am in contact with who are never too far from my thoughts (including my older brother who has always been there for me). And of course to my readers, for reading my anecdotes and probably finding the humour in a lot of what goes on. You guys are all awesome and your support helps me more ways than you could ever know. It's strange to think that this blog is nearly 4 years old now and has been a constant chronicle of life in my rather strange and often confusing world.

Wendy xx

Friday, 11 October 2013

Still Here!!

It's been an odd kind of few weeks, I will openly admit. I confess that I fell behind with my blogging, not because I gave up, but because I was struggling on something to write a blog about. After all, a fire is unable to burn unless there is fuel, in the same way, as there hasn't been am awful lot going on, there has not really been much to write blogs about. I didn't think my readers would enjoy hearing about the constant infections and visits to the hospital and doctors or how I am having to re-adapt to new carers and new routines.

The hardest part of having new people who come in just to take care of you is trying to explain to them what exactly you need, especially when you aren't that articulate about that in the first place. You have to almost pick apart your entire personality and lay it out on the line, which for a very private person like me, that is actually quite hard. I almost expect people to understand certain things that I don't like (such as continuous questioning, a great way to get me flustered and frustrated, especially when I am trying to do something that I need to concentrate on) to become almost obvious after a few days. My neighbour is learning slowly that I do need to sometimes be left to my own devices to figure things out, but she is also learning about how to spot my anxious habits or when I am trying my hardest to keep up the façade that I am well when clearly I am not. Sometimes I have a habit (and it's not a good one) of trying to do my own things when really I should be tucked up in bed and resting. It's not a deliberate thing, it is just a sign that before getting any help, be it from Helping Hands, Becky or my new carers, that all I had to do was focus on doing everything for myself whether I was well enough or not.

A little bit of independence can be a great thing, don't get me wrong, but you can be too independent and thus a liability on yourself. That's me at times. Earlier today, I was feeling anxious as to whether my new laptop would actually arrive at the right address (basically, Tesco confused the order and tried to send my new laptop to the old address that I sofa-surfed with my then boyfriend, they had tried taking it there twice! So I called up the suppliers and DPD and rearranged where the delivery was headed, it took a couple of hours on the phones but we managed to have it delivered to the correct address and now, here I am with a nice cup of tea, typing away) and I started to dust and meticulously clean the TV bench including my Halo Lego models, X-Box and TV itself, the result of which was a rather horrible wheeze and a lot of inhalers to get rid of it. Another of my anxious habits that has come about again is the way I used to pick at the skin near my nails and about 2 weeks ago, I managed to strip the cuticle from one of my fingers. Luckily that has grown back, as well as the skin on my hip and leg that was stripped due to eczema!

Things are settling in to a kind of normality now. I have started to get up and dressed at certain times, unless of course I am feeling like crap and I really don't want to move, and my medication is definitely getting done, whether I want it or not. I'm starting to stop being so shy and reserved about opening my curtains in the bedroom. I now let the light in, the other night, I was sat in my chair leaning back and thinking as I watched a few bats flying towards the woodlands. It was nice because I was just able to focus on just watching outside and nothing else. Recently I have been feeling a lot more calm, despite some minor episodes which I worked through my own way. My mental health hasn't changed much but since stopping Sertraline and moving on to Cipralex I have felt a bit more like the happy-go-lucky, upbeat Wendy that I did wonder where that person had gone. It's only been with the help of others that I have managed to find myself again and learned not to be so scared any more. I saw my Ex in town recently and instead of feeling scared, I just rolled past him because I thought about how stupid I was to ever let that person control my life.

I hold my head up high because I am on the right track to where I need to be and I am going to get there my own way. I want to keep going, not just to see the big milestones, but to be able to smile and look back and say "Yeah, they said I'd never get this far, but here I am." They said to me at 22 that I wouldn't make it to 25, let alone 30 and here I am, just over a month away from my 26th birthday and still going strong. OK so my health has deteriorated but we always knew it was going to. The trick is to just accept that sometimes things are going to suck, but when you feel like you're running out of rope, tie yourself a big knot and get a grip! No matter what situation you're in, you are no more, or no less better off than anyone else. Everyone has their own pile of shit to wade through, OK so it probably isn't the same pile of shit as you, but that doesn't matter, it's not a contest! I think it was said in the film Fight Club about how we are all the same and some of us need a massive dose of "Get-over-yourself" to sort their own lives out, well that was the thing I took from the film anyway!

Since starting to socialise and go out to places more often, one thing I have learned is to love the people you live around and live around those you love. You can give anyone expensive gifts and trinkets, but the most precious and lifesaving things out there are love, friendship, compassion, companionship and hope. When I was ready to throw in the towel before and give up, these things saved me and guided me to another way, I found that by hurting myself and doing those things, I was actually hurting the people I loved so much and who loved me. Worst still I would have disgraced anyone who had died from an illness and not have had the option to make their own choice in all of this. Suicide isn't painless. I have come to the conclusion that suicide is actually selfish. I've also come across some other rather interesting philosophies recently but I will save those for another time, as one or two may be a bit weird to comprehend right now!

Wendy xx


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