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 Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. 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.

I'll flap my broken wings and erase it all someday... You'll see.

Monday, 11 March 2013

Recovering and a New Rat...

You would have thought that I would have been used to the whole routine and general irksome nature of my condition right? Yeah, I'm kind of feeling that feeling you get when you look and feel like someone has sat on you, all your muscles in your chest, back and the upper part of your stomach feel like they're being tightened with an elastic band to the point where they hurt. A lot. In fact right now, all the muscles in my ribs, collarbones and back are at the point of screaming in pain. It's messed up, I know. Its weird, I go through the actual attack completely fine, a bit of pain here and there but that's about all, then nearly 2 weeks of the adrenaline wearing off and feeling as though someone parked a rather large lorry on my head. Until you have lived with a condition like asthma, I don't think you can ever really understand just how much it can drain every ounce of strength from you.

So, here I am, lying in bed, trying to keep my eyes open because I am, yet again completely exhausted and, I will admit, struggling a bit. But one thing I always forget (and I have done it since I was very small) is that when something is hurting or you feel completely like someone knocked the stuffing from you, your body is probably trying to tell you something that you would do well to take heed of. And right now that message seems to be "Slow down." or "Stop completely. Even if it is for a little while, just lie there, snuggle in to the duvet and do NOTHING... stick a film on the little TV to stare at by all means, but nothing more strenuous than that." Not something an active person like me likes to hear. I like doing things and moving around and going about my day in any way I see fit so having that kind of restriction on me is kind of a drain. Maybe, I ought to find a way of keeping myself both in bed and stimulated so that I can get the best of both worlds on this. Although my laptop, tablet, iPod and phone seem to be my best distraction methods right now.

Since Virgil died so suddenly on Tuesday (Becky found that he'd just dropped suddenly from the stress of the noisy people upstairs) Dante, Becky's rat, was feeling a little lonely so Becky got a surprise as an early Easter present. A little black and white baby Dumbo rat who we've named Sparda. Sparda was a shy little thing at first but hes quite the little baby. He loves to cuddle on the sofa with us and earlier I managed to groom him gently with a soft toothbrush. He's a handsome little fellow as well and has these adorable big eyes and ears! Dante seems to like his new little charge and happily grooms him and makes sure he's alright. I even caught Sparda (who follows Dante everywhere) lying on Dante's back and snuggling in to him. I've never really been that big on rats, but I do love keeping them. They're intelligent and intuitive little things and they are such little characters. Although no rat will ever compare to my little lady Lightning. She was a little dear and when she passed on, I was quite sad but I knew it was for the best really, she was about a year old when I got her and had had a rather rough time of it. It comforts me to know that she didn't suffer for all the time she was with me.

Of course, I do keep my guinea pigs and I do adore them so. Luckily Kadaj has stopped his one pig crusade to strip his poor cagemate down and remove what makes him our fuzzy lump! Poor Gizmo was starting to look like a mixture of a battered sausage and a skinny-pig. Poor little chap was a bit confused as to where his fuzziness was suddenly going and Becky caught Kadaj in the act (which make him look like he had some kind of ginger mustache! After speaking to a vet, Becky was assured that this kind of behavior is common in cavies (its known as barbering) and is something that would pass. Lucky for poor little Gizzy, his fur is coming back and he hasn't lost his sweet gentle nature.

Since getting Sparda, I have been besotted with him, hes so much smaller than Dante, probably just a bit bigger than Nero (who is doing very well, he had a bit of a shout and a scream on Friday but he soon calmed himself down) and in all, we have 7 nice, happy and friendly pets in our home. Yes that is quite the menagerie of rodents but to be honest, they really do give me something to enjoy, from cute things who love to snuggle to inquisitive and playful rats who seem to enjoy human interaction. They all eat well and are regularly cleaned, groomed and given every bit of loving care that they really do deserve.

I also made the decision to report what happened last week to WMAS complaints team. What happened last week was shameful and what was worse? It was avoidable had correct practices been adhered to and I'd been given the appropriate level of care that I should have had. I have been getting nightmares recently about what could have happened and those scenarios really opened my eyes up and made me look at the situation properly. It has left me a bit unsteady and a bit unsure about whether I should be allowed to make these decisions. Do I know my health enough? Do I know my signs? That kind of thing. Its hard not to think about it, but the reality is that nearly a week ago, there was almost not a Wendy to be writing this blog today. The results could have been so much more tragic and we could have been looking at a funeral being planned, instead of a good day out to meet a friend from Twitter.

That is something that really does frighten us, we were so unaware of what was happening and why it happened. I want answers. I want to make sure that the person who could have done so much more and didn't is held accountable for this. Some could argue that it could cost them their job, but if they can let something like this happen, then why on earth are they allowed to do it in the first place?! It's a scary process, I had to do it before when similar happened (but not to the same extent) and I noticed that they seemed to close ranks and defend the last person I reported, although an apology letter was sent in due course. I dread to think what would happen should the A+E in Redditch close, the work they do is vital and life saving and had it not been for them, I wouldn't be here now. Which is some serious food for thought.

Loves
Wendy xx

Friday, 8 March 2013

Photos from the Ward... and Beyond (part 2).

So, here is the 2nd part to the post I started before. It has been such a long thing to post and I am only just getting my head around things.

So, from where my last post left off, I was on the Respiratory ward (lucky to have not been in ITU as they had originally thought) and I started to pick up considerably after a nights sleep, support for my breathing and some rather unpleasant and painful doses of IV Clarithromycin and IV Co-Amoxiclav (they really wanted to flush the stuff through my system I swear) I think by that point I really had just wanted to go home, the thing in my hand was uncomfortable and always in the way whenever I tried to do anything. I was glad to have a notebook with me because I wrote down a lot of my thoughts and doodled in pen to just try and amuse myself. It did work and I was feeling a lot more like my usual lively self. Unlike the night before when the consultant came to see me and I was so weak I could barely open my eyes or say a word to him. I think what was funny was that this was a consultant that I had seen many times before and he had once upon a time been unsure that I even had asthma in the first place. He'd seen me since after some of the rather rough attacks that landed me on a ward, but even he said that he had never seen me that subdued and unwell. It took any doubt from him on whether or not this was asthma (it is now 100% confirmed as brittle asthma which I suppose is one good thing to come of this whole thing) and that I was lucky. Lucky that the nurse in triage had rushed it through to a doctor right away and that the doctor was quick enough to act. I had mentioned to him about the paramedic and he looked appalled and said that he would have a word with her. I was left with the words "lucky to be alive" ringing through my head and I had had a restless night because all I could think about was "What if..." and it scared me to think about it, and even now I am still trying to come to terms with it all again.

Knowing that has been one of the hardest things to get my head around. I admit I have had a cry about it all, but then I sat there and thought that perhaps this is the kick up the backside I have needed to really remind me that life is precious and the time we have should spend it making memories and a difference to the people we love and if anything, the fact that this could have so easily ended up as one of those creepy memorials in the paper and a funeral has shown me that I really have some amazing friends and a boyfriend who I love and who loves me, as well as my nan, brother, aunt and everyone on that side of the family, and I should focus on spending as much time making memories and making the best of things, rather than leaving it til it is too late or spending too much time focusing on useless things such as hate or the past. The past is the past. It can stay there.

One thing that stayed next to my bed during my entire hospital stay (probably because they kept me connected to it because of how unwell I'd been) was the obs machine. This is a machine that is used to check a patient's pulse, oxygen saturation, and blood pressure. They check these often in the day, and for a while, I was on hourly obs and constant monitoring as I was in the high-care part of the ward (which means that there were 4 nurses in the bay and we weren't ever left on our own) and they still worried that I could drop again. The doctor was doing her best, bless her, to persuade me to have another night in but I couldn't stay in that room with that certain annoying patient constantly bitching about everything. I needed my own surroundings. I needed my own bed. And I needed to be with the ones I hold dear to me. They were my medicine and my home was the hospital ward I needed, and the place I really wanted to be the most. I may have had my Sephy to comfort me, but I wanted more than that. I wanted the familiar smell of lavender from the bed linen, The comfortable surroundings that have always set my mind at ease. The banter between Becky and I was the thing I missed the most, other than being able to tell Jace that I love him and that I wished they could be at my side at that point.

I suppose that one thing that I can definitely commend is that the food at the Alex has improved a lot since the last time I was an In-Patient. OK the combination of quiche and mashed potato (major carbs, no wonder I was so energetic) was a bit unusual, but I didn't mind too much. At least it tasted like real food for once rather than cardboard like it used to. The pudding of apple crumble was pleasant too and the portion size was perfect. I was able to embark on a brief afternoon nap afterwards for an hour or two with a full stomach and the comfort that pain relief tends to bring once it kicks in. I was comfortable in there, but I really just wanted to go home. I was starting to get very homesick. Missing my snuggly boys and Becky was probably the hardest thing about the whole thing. I just wanted to hug them, tell them I was sorry and that I would never take it for granted ever again. And I mean that.

Before I went home however, my cannula, or IV line, (which by this point had been used to give me not only life-saving drugs but ones to kick start me to fight my infection) was really sore. They're not particularly comfortable at the best of times, but considering how hard it had been to get the line in in the first place, my arm was painful as the first attempt had shut down as soon as it was cannulated. The second one was becoming very uncomfortable, I felt a sudden pain in my hand down from where the site was and it was bleeding, at first only a little, then a little blood became a considerable amount and it was starting to leak a little. So as soon as the doctor said "yes" to my leaving the hospital, I was quite happy to finally get shot of the thing. IV cannulas are awkward things, they get very sore very easily and if you are like me, and you have to have them very often then your veins don't tend to like it too much and they tend to collapse which leaves you with that horrible feeling you get when your arm goes to sleep and starts getting sensation once more, but it does save on getting jabbed multiple times with many needles, so I guess it is the best trade off really.

I was happy to get home. Thanks to my friend Martin who came to collect me, I walked back in to my flat to be hugged tightly by Becky who had missed me tremendously. I was just so happy to be home that I didn't get angry that Kadaj had pulled all of Gizmo's back fur out or sad that Virgil had passed away because of the stress from upstairs.

I know one thing now. I am NOT going to take foolish risks. Ever again.

Loves
Wendy xx

Photos from the Ward... and Beyond (part 1).

One of the ways that I keep myself sane while in hospitals is through photography. I find that if I am strugging to SAY what's on my mind, I find it a lot easier to just SHOW it instead. I believe that photographs take a glimpse in to the real life events that unfold around us. Some people photograph things like animals or landmarks from their adventures. Me? Well I photograph everything that seems to make sense in my silly life (I call it that because it can sometimes be easier to think of it in that way rather than referring to the lack of quality of life I am afforded these days) and show people what it is really like when you have to live with a sometimes painful and often frustrating health problem. Be warned, a lot of these photos are very candid and show a very dark side of my life, and you may find some of them really upsetting. Some of them I don't actually remember ever taking which is the weird thing.
I guess the first pictures came just as the doctors started me on nebs and oxygen. We knew I was bad, but one thing we never knew was just how bad things had gotten. I look at this picture now and I can see just how exhausted I was. Yet there I was, putting on this brave face and telling myself that I had to get through this. I looked at the end of the couch that I was lying on and all I could see was that tank. At this point was when the doctors were getting the trolley to take me away from where I should never have been in the first place. All I could hear at one point was the doctor asking the sister who I think in turn probably gave the paramedics a grilling about why 1. I wasn't brought straight through (there were trolleys in the corridor, but they would have rushed me right through to resus had they seen it right away. No one could work out why exactly that was not the case and the worrying thing is that had I waited a little longer (or later until a doctor came which was what the paramedic wanted) what would have happened?

All I was thinking that whole time was about the people who I love. That gave me the strength to keep going and get better. Their smiles when we were all together and the glorious days where we all just hung out eating pizza and talking about this that and the other. I wanted to get through this. I wanted to survive to have more of those golden days, more of those mornings of drinking satin smooth coffee with Becky and the evenings spent just laughing about everything.

The next pictures came during an arterial blood gas. It's a painful but really needed thing. The doctor had to find the pulse at the radial artery before using the needle to slip between the bones and get the blood sample. It took 2 attempts for them to get the right spot and the nerve was hit (I was probably making some strange whimpering sounds at the time). Little did I know, but this was the beginning of a rather exhausting chain of events. A chain of events that I am still doing all I can to get my head around it.

The next picture came I think (as the clock says 3:30) not too long after having my chest X-ray (They used the portable thing, even though the tech was reluctant to do it that way because he didn't want the hassle of moving the machine, luckily the ITU doctor stood his ground) and I was lying there, just observing it. I only wish I could have got a better and more clear picture of it, but I think by that point I just wanted to close my eyes and sleep for a while, yet through it all, what makes me proud of myself is that I managed to keep that brave little smile and positive attitude that people know and love about me. I guess I'm just that kind of person really, but I did just look so tired and fragile at that point. I think I probably did fall asleep for a while and got some rest. I lay there for a while and I think when I did fall asleep, I felt so calm after my pain relief was sorted I was breathing more comfortably. I started to believe that I was going to survive this. And I wasn't going to give up. Not for anything.

Not long after I was moved to the ward, I was having a neb and decided to ask if I could try using the nasal cannula instead of that bulky mask that was making me feel claustrophobic and uncomfortable. I did find it funny that I was wearing both the nasal cannula and the nebuliser mask at the same time. I think I may have tweeted this picture with some kind of silly caption like "it's all about the accessories, darling!" The nasal cannula stayed there all night and I took it off in the morning because I felt strong enough to go without. The black and white image was taken after I woke up from the nights sleep, so I look pretty refreshed and not as sickly.

I guess those are the first ones I am willing to share at the moment, I'm going to share the rest later on, but it may take a few days to try and gather my thoughts and lose that feeling of disorientation and confusion. But I am doing better today which is good. I'm still a bit disorientated but that is something we come to accept when we live our life with a long term health problem. The next lot of photos will be a bit more unusual and theres a lot of them on both my phone and iPod so this could take a while.

Loves
Wendy xx

Wednesday, 6 March 2013

Another Close One...

I think that sometimes, my asthma likes to toy with me. It's not anything really horrible, but I start becoming more and more aware of my symptoms and I become so exhausted that I wind up sleeping most of the day. It's what we know as "Pre-attack" where we know it is going to hit, but we can't always pinpoint WHEN this is going to happen. I hate this phase as it makes me feel very on edge and more than a little bit scared. It's during this phase that I just want to get it over with, have an attack and then get it sorted so that I can feel a bit better for it.

People around me do make it easier to deal with and on those really BAD days. When things are unimaginable, I do have people who I can rely on for support and friendship as well as vital lifelines so that when things do go wrong, that there is someone who is there. In the times when things have gone to the worst, that can be not only a comfort but it can actually make the difference between recovering well or not recovering at all and winding up back in hospital within days.

My asthma is tricky at the best of times, one minute I can be alright and content to do what I'm doing, the next I can be seriously struggling and require hospital treatment. It is a pain and it does sometimes prove frustrating, not only for me, but the people around me. I am thankful that Becky and Jace are patient and caring and that hospital doesn't provoke fear in me anymore. Fear of being shouted at or punished because of it. Last time I was in, Becky was keeping my spirits up by making me smile and laugh by dancing and just generally being Becky. She's a fantastic friend and soon will mark a whole year since she moved in with me, and a whole year since Jace and I started our beautiful relationship.

The next few months are set for more change, but it will be a good change. Hopefully, soon we can move to a 2 bedroom place, although we do cope well as we are when Jace is here but it will be good for us to have our own space. Don't get me wrong, we love our little nook, but it would be nice to have a bigger place somewhere, perhaps a bit more private and in a different area. It would be nice for the animals as well (we will always want a garden for the guinea pigs).

It finally gave in on Monday afternoon. I was really fighting for breath and I couldn't even think. I called the ambulance and when the paramedic came (admittedly she seemed to think I was alright despite the fact that I was breathing so fast just to keep my sats up at 97%, when I slowed it down, I was down to 89% and she still refused to do anything... but such is life really) and I was taken to A+E triage. I didn't stay there long and I think the doctor initially took me to minors before getting someone senior to come and take a look. I was rushed right in to resus on a trolley without delay and an ABG was taken... at this point, I was on a o2 driven nebuliser and my sats were only 92%. Once the blood was tested, it quickly became very apparent that I was seriously unwell and my Po2 was just 7.7 (normal range is about 12-14), about just half of what I needed. My PCo2 was way down at 2.97 and I was really exhausted and fighting just to keep breathing, an ITU doctor came to see me and they were seriously considering intubation if things didn't improve. It really didn't look good.

Lucky for me, after rapid treatment with IV Mag, IV Hydrocort and a hefty IV dose of Co-Amoxiclav and Clarithromycin and high flow oxygen, I started to pick up and start recovering a bit. I think I must have slept for a while after Becky had to go home because I don't remember anything between her going and her coming back and the consultant came to see me, it was a consultant I had been under before so he knew what I was normally like, unlike what he described as lethargic and a complete polar opposite to the Wendy he knew. I couldn't even move so he could examine me, but I had been lying on my side. He was really nice actually and he just looked at me and said "You are really struggling aren't you... the good news is we can definitely confirm your asthma at least, but I think we'll get you to the ward and let you recover there..." I then dozed off only to wake up on the new Respiratory Ward, in one of the High Care beds.

All I'd wanted to do was sleep. By the time I managed to settle myself down and get to sleep, it must have been about 1 in the morning, after some more IVs and being allowed to swap from a non-rebreathe mask to nasal cannula, I think by the time I fell asleep, it was like I didn't want to wake up the next day. I managed to talk my way to getting allowed out (against the advice of the doctor, but my sanity was grating as one of the people in the bay was SO demanding all the time, I will spare the details, but people like that get on my nerves with the whole "look at MEEE!! -I- NEED it..." and the nurses were doing all they could to look after another patient who needed suction to clear her airways frequently) and by the time I got home, I was so happy to just sink in to a nice warm bath, get in to some clean pajamas and snuggle down in to my own bed, Sephy clutched tightly (even while I was there, after Becky brought him to me, I didn't want to let go of him) and I think I fell asleep pretty much straight away.

I suppose the moral of the story is that I need to stop trying to leave it too late before getting help, its a combination of pride and pure stupidity really because I didn't want to cause a big fuss or be in everyone's way, I guess that kind of worked the other way round. If I ever see the team of doctors who looked after me, I will have to give them a hug and thank them, had it not been for their speed and excellent care, I may not have been alive now to tell the tale.

Loves
Wendy xx

Saturday, 2 March 2013

Stuff...

Its been a pretty good week as far as morale has been concerned (admittedly my asthma has been a bit of an issue again but it does that when it feels like it) and I am really very happy with things. We finally did the finishing touches to my laptop's new look (its all purple and sparkly with a Sephiroth decal, very stylish and VERY Wendy) and I spent time with Becky and Jace, which in itself has been the best medicine for me. I love it when Jace comes over because we get to spend time together as a couple and as a group with Becky as well, we don't always do much but we do all enjoy each other's company, and the company of our very loving animals.

The rats have settled in very well now and are content to run around the cage and on top of each other. Dante knows his Mummy is Becky and Virgil is always a little angel for me, sitting in my lap while I stroke him or talk to him. Rats are fascinating creatures to watch, so agile and full of life. It's amusing to sit and watch them play together and they're interesting pets to interact with. By nature, they can be very timid animals and they don't like loud noises. We have to clean them out every 3 days or so because their "leavings" can be catastrophic to someone like myself, but we have our ways around that so all is good.

This morning, we sat in Caffe Nero, as we do most Saturday mornings, and just talked. We talked about story concepts and the general happenings around the flat. We try and keep the negative side of things out of our coffee time as it is a time of pleasure NOT a time for pain or the not so nice side of things. Besides, if we can just spend some time having fun, then at least we're happy knowing that we managed to spend quality time together just doing what we like to. That is what's important to us.

Knowing that I won't be losing any of my benefits has made me feel a lot more secure about things and I know that both mine and Becky's immediate financial futures look secure and safe and it is set to stay that way for years to come. We may not live in luxury, but if you ask me, I think we do very well and we've never had to go without. It's a comfortable life that we lead and for me, it has been a vast improvement to my quality of life as I have been able to get my head around things a little easier. I smile more. I laugh. With the right help, I have been able to go out and do things again and not feel like some kind of invalid shut in. I'm getting even better at getting about with my scooter (getting on and off buses has become something of a party trick) and I really enjoy going for a wander around town these days.

My writing has improved as well, I actually had some drive to start doing so again recently and ever since, I have been carrying a few notebooks and pens, just in case a muse hits me or I have a small idea of something that cannot wait to be written down. As soon as those muses hit, I have to get them in a pure form, lest they become lost in the rest of my thoughts and ideas. Keeping my own diary has helped me as well, it has helped me to track my moods and what has been bothering me, and a good place to work out solutions to problems that I have been mulling over. As a result I have been sleeping better and I wake more prepared for the day ahead. I'd be lying if I said things were perfect, but to be quite honest, I am a lot happier with how my life is now.

Loves
Wendy xx

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