Memories

When I was a kid, one thing we did a lot was watch videos. Nowadays you show a kid a video tape, they just look at you with an expression that says "wait, this does what?!" Whether it was a tape recorded off the TV (we got a lot of our favourites that way) or one brought, we would spend afternoons watching them. Some films from that time are still ones I watch now, sometimes on DVD or bluray, others old VHS tapes because there is this amazing nostalgia from watching them. I have some tapes that are over 20 years old and I found them in charity shops, but there is one cassette that I have had for nearly 20 years and nothing would ever make me part with it because it has a huge sentimental value. Even if I didn't have my video player anymore. I do have the film on DVD but there's something special about watching the tape.

Let's go back about 23-24 years when I was a child. This is after I got over my conviction that everything with a mouth needed to be fed (I bet my father cursed my name while fishing bits of jam on toast, marbles and other things I'd popped in to that slot) and when I would watch a film my dad taped off the TV. I think there must have been something so funny about a 4 year old who would often (and dad made a recording all them years ago) burst out in to a full version of Meatloaf's "Bat Out of Hell" suddenly singing along to the film "The Little Shop of Horrors" and I think I must have watched it so many times I killed the old tape!

Of course I did watch kids films and things like "My Little Pony" or "Thomas the Tank Engine". There's actually a rather funny story about the Video Collection company's ident (a short graphic the name of the company and/or TV station the thing you're watching is distributed by) and how it used to terrify me. My parents got so sick of having to coax a scared toddler out and eventually I believe it was my dad who took the tape apart and carefully clipped it to just after the ident, so that I could watch without getting scared! Yet this child who was scared of a 3D geometric TV spinning around and lunging at the screen didn't bat an eyelid when it came to a story about a talking alien plant who ate people, a psycho dentist asphyxiating himself before getting chopped up and fed to the plant and the other rather adult themes in there. I never said that I was a normal child.

One of my earlier memories was when I was about 5, could have been younger though, when I would play a game with the video player. This game was played by me sticking a finger in to the slot, ejecting a tape and pulling my hand away. Needless to say, this went horribly wrong when I didn't move fast enough and my finger was wedged between the top of the slot and the tape. My dad got this top loading player afterwards, I think that my curious nature may have ever so slightly influenced this.

One day when I was about 7 or 8, my mum and dad went to a car-boot sale, my dad liked going and having a look around and we often went to the market place in nearby Penkridge (a small village just outside of Stafford) to snap up a bargain or two. They had something for me and I remember my dad giving me this video of "The Little Shop of Horrors" and as silly as this may sound, whenever I watch the VHS copy, even now 20 years later, it's almost like being a child again. Sure, the tape's worn (especially on some songs) and it's not HD, but to me, that's how I prefer to watch it. It reminds me of when I was a kid (the happier times obviously) and in a way I feel more grounded in myself. We all have those things that remind us of when we were young and sometimes it can be nice to look back at the past and remember those days of being a child.

Its funny really because even now, as a grown woman, I still remember being that chubby, dark haired little girl. Heck, listening to my Linkin Park CDs, I remember the rather awkward teen who had a red Mohawk hair cut and despite the less than fun times, I remember that all in all, I have a lot of good memories of my childhood. Those are the ones I keep hold of. So, every so often, I take out this old tape, pop it in the player and relive those days, when things were so much simpler, before all the "PC" rubbish took away the things we grew up with (things like "Ren and Stimpy").

To be fair, growing up with these things never did us any harm. Natt and I were talking recently and we came to a conclusion. That perhaps it was the exposure to certain things and themes, that are pretty much completely censored, that showed us more of what was acceptable in society and we learned that other walks of life existed and we could tolerantly live alongside them. We saw what human nature can be and because we were aware of it, we allowed ourselves to learn and accept it and not copy the things we were shown and taught were wrong. This is why if I have kids, because who knows, I want to raise them with and show them the things we grew up with.

Loves
Wendy xx

Happy

I've not really done much since coming home on Tuesday. Actually the main thing I have done is sleep, possibly down to the morphine, and draw. I've really gotten in to my drawing over the last few years and believe my technique and ability has grown. Its nice to find a positive outlet for my moods and it helps me in many many ways. Sometimes you have to find something positive in life to make it feel like a good experience. I don't for one minute call it idyllic but it is what I make it. There's a lot of positive things that have come from being the way I am.

I suppose one way of looking at it is that I have plenty of time to pursue things I enjoy. Whether its sewing or drawing, writing or gaming, I keep myself busy. A busy mind has no time to feel sorry for itself. And that is one thing I never feel, sorry for myself. I'm proud of what I have managed to achieve and aim to do more and more despite my conditions and limitations. I'm not going to be naive enough to believe that every day I'll be a dynamic burst of energy. To be honest, more often than not, my day is broken up with a nap and I do have to rely on my chair (not that I mind my chair, I love it as it means freedom) but I still try and do things, something some in my position wouldn't do, but that's because I am a stubborn bugger and I fight to stay independent. I never ever learned to give up and give in.

Its taken years but rebuilding my self esteem as well as accepting the new challenges my life means has been worth it. If anything I think the chances to grow and mature have made me a better, happier person because it taught me to never take life for granted, enjoy life and generally be a happier person. I'm making the most of it. Its about finding pleasure in things, for me, its my pets. The pigs had a new cage as the bottom of the old one was broken, they love it! There is more than enough room for them to run and play. Since being put in there, Tiggy has done nothing but popcorn and bounce around happily. To me, as a dedicated owner, there is nothing more satisfying to see and it makes me feel like I am doing this right. My pets are spoilt rotten and I know it.

I'm just as always, happy to be here and happy to be getting back on track.

Loves
Wendy xx

Back Home

I've been home for a few days now and just getting back in to my own routines and trying to keep fighting this infection. Its a nasty one and its been stubborn on my lungs probably due to the abscessing which happened because it was so prolonged but the problem is, I get so far with it then suddenly it decides that it won't respond to what I'm taking. It's baffled us all and we really don't know what we have to work with. All we can do is keep bashing and bashing on with it and hopefully the consultants can figure out a long term plan.

One thing we did at the hospital this time was play around with my meds. We swapped out the tramadol for Zomorph, a long acting morphine capsule. The idea is to get a constant pain relief level so that I only need Oramorph, which is short acting, for "breakthrough" relief. The only real thing I don't like about it is that every so often I feel so sleepy! Admittedly sometimes a good sleep does wonders but its a bit annoying when halfway through the day I kind of just flop and wake up hours later thinking "OK... Where'd the afternoon go?!" I am really comfortable though so that is at least something isn't it?

I think the best part of being back in my own home is the comfort and warmth of my own bed. I was brought a lovely new duvet for Christmas with pretty black satin sheets (very ritzy and posh) by my mum and my friends made my bed up for me for when I got back. It was lovely to come back home to and right away I felt settled and happy. My friends are amazing. They have been pampering me since getting back and making sure I want for nothing. I was also spoiled rotten while I was in which picked me up so much. Its nice to know you're appreciated. It was also nice to pick up my drawing stuff (I brought some new stuff as my old stuff was running out) and get back in to drawing. Admittedly I have been drawing Pokémon (after catching them on X and Y) but its fun.

I think out of everything recently, I have been besotted with my 3DS. I got it last year and its always played on and I really get pleasure from it. I think I spent more time playing on it in hospital than I did anything else really. It serves as a great distraction and between all the games, it passes the time. Sometimes a distraction can help you when it comes to pain or generally feeling crap. More for the reason that if my mind wanders, I can relax and let my body do the same.

My drawings are a healthy outlet for me as well. When I draw, I almost feel the creatures come alive under my pen, even if it is just my imagination. While drawing Haunter earlier, I could have sworn he winked as I was colouring in his hands and every so often I imagine that Lapras or Bulbasaur made noises from my other book (its my imagination but it makes me smile because these fantasy creatures come to life, even if not for real), and since Pokémon is a colourful world, my drawings are colourful and bright. It does cheer my moods as well because seeing a world of colour is important, I face each day with both eyes open wide and ready to embrace it, for all the challenges to the really happy stuff like spending time with people I love or just being here with my pets.

Speaking of, my pets are as barmy as ever, Tiggy is such a happy boy at the moment, popcorning himself around the cage and the other two just watching him. I wonder sometimes what Scruff would have looked like had he not died so soon, I wonder if he would still be on top of Tenzou like a wig? And other amusing antics.

So, here's to a new year!

Loves
Wendy xx

Stop and Think.

I've been meaning to write this for a while but was struggling to put it in to words. Maybe its seeing things first hand rather than going on past experiences that has made the whole thing ring even more true to me. I go in to hospital a lot due to my asthma and complications, in fact this has been my worst year for my asthma and hospital admissions. I've been in and admitted 8 times now, each time for between 2-3 days to about 2-3 weeks. Its not been the most fun but it has been needed.The time of year has contributed to an increase in workload for NHS staff, particularly in the first points of access (A+E, GP surgeries, ambulances) but there has also been a lot of wards fit to bursting usually due to really demanding patients whose families won't accept. 

Yesterday. I heard a number of conversations over the MAU wards between rather narked off consultants and the families of such patients. The consultant tried to explain that there was no clinical reason for the patient to be admitted and he even commented on how cruel he thought it was that she was being abandoned here for Christmas because no one wanted to look after her during the holiday period. It takes a certain kind of callousness to "throw" someone away like that because you would sooner go out and party instead not to mention selfish and dehumanising. These people are someone's mother, daughter, son, father, brother or sister. They want and need to be cared for. Not tossed aside because they aren't convenient anymore. 

The other side of it comes from people accessing the emergency services (A+E, ambulances) for totally inappropriate reasons. I follow WMAS on Twitter and their recent campaign encouraging us to stop and think before picking up the phone and calling 999 really has opened some eyes. Some of the inappropriate calls they have had are frankly galling. A man calling for an ambulance to take him back to the town centre because he was drunk, someone calling 999 for a cat that was attacked by a dog (yes that is distressing but the ambulance service is for people only) to people calling up for sore feet from dancing and sniffles. Some people do even say they have something seriously wrong and then when the ambulance turns up, all they wanted was a bit of attention or they felt lonely. Its sad that people need to get attention this way but at the same time, that ambulance could be needed for a heart attack or a serious accident.

See, with me it takes some convincing that it's hospital time. I don't want to go in there when I know myself that chances are I can fix whatever small malady I have myself or at worst, go to the GP and get him to have a crack at it. I only really go in when all the other avenues are exhausted and I have honestly tried as much as possible. The last few days saw a cold snap which led to a real bed shortage and a spike of admissions from people who were just looking for some company at Christmas. I felt for them, it must have been so horrid knowing that there was no other place to go for a cup of tea, a chat and then to move on. People also really called in their droves when it came to partying and getting drunk/high.

Being in A+E on a weekend is a different experience to anything I have ever seen or heard. I have seen people brought in on stretchers, screaming like death-metal stars or shouting loudly about everything. I have watched from cubicles as nurses and doctors have been attacked physically and even injured just for trying to help someone. Heck I have even been in A+E when someone came in and decided he was going to try and rape me in a cubicle (which is why I get so wary of going in on my own) and I have seen just what people have had to withstand.

I have a lot of admiration for frontline staff. People who deal with the patients and are often the first to suffer when one of them decides that they can't behave or won't let them work. Around about now, I would hate to be working as a paramedic or an A+E staff member because they are so overworked, underpaid and very under-appreciated. I often think of when one pair of paramedics came to see me and they said that the most wonderful thing they had seen all day was a patient who was polite, friendly and most of all, smiled and engaged them like real people. They almost felt sad to leave me because when they went, they were going to head off to more abuse, violence and sometimes just called out for the sake of having someone to talk to.

So this New Years, please, stop and think. Before you go to A+E or call the 9's, ask yourself:

1. Is the problem something you could ask a pharmacist/GP/NHS111 person about? There are excellent NHS Out of Hours doctors and services. They can actually get you patched up quickly and sometimes even a pharmacist can help you (you'd be amazed at what they can do).

2. Could you actually die from this problem? Breathing problems, chest pain, loss of consciousness, blood loss, stroke are the kinds of things 999 are there for. Fell over from too much to drink and sprained your ankle, yes it hurts but it's nothing a bag of frozen peas won't fix.

3. Going to A+E or getting an ambulance WON'T always get you seen to fast enough and sometimes theres nothing they can do anyway, you may have to wait until Monday anyway. Can this wait? Does it need to be seen to right this second?

Of course, please stay safe over the new year period. And if you know of anyone who may benefit from a friend/relative just popping by to say "Hello" and have a drink with them. It could be the best thing you could give someone, the gift of company. I hope you all have a wonderful new year and I hope that 2015 brings peace, love and happiness.

Loves
Wendy xx

Is it over yet?!

So... I am actually thinking of expanding the blog a bit, maybe get more publicity for it and even get it more recognised in the right circles. I started this blog on the 27th October 2010 and back then, all it was about was getting through a few personal things and I never really imagined just how far I would come in a short space of time. To be honest, when I started this, we were told that I probably wouldn't make it to 25 and now I am pushing because I want to get to 30. I want this to be my legacy and I want it to serve as a reminder to anyone that you can get through things, even if they seem hard or scary. Sadness isn't a forever thing and no situation is hopeless.

The one thing that I have learned most about my condition is how variable it can be. How it can affect one person and leave them debilitated yet another person can have it and they can still go and do things, they aren't housebound or spend weeks on hospital wards. The cruel thing is, that because hardly anyone ever sees those of us whose asthma is puzzling and hard to comprehend, they don't actually KNOW what it's like. They don't see the days where all the muscles in your chest are tight enough to make you feel like you're about to pop. They don't sit there and wait for an impossible amount of prescription medications at the pharmacy and then spend the days later having to go through and make up doses, which can be so variable depending on what my chest is like on any given day. I have good days and I have days where I am wondering when I can just curl up and hibernate until its all better again. I have to be strong, even when things are horrible or scary and I have to smile, even on the days and times that really all I want is to fall apart and scream because honestly, it never actually needed to get to this point.

But it did.

I didn't ever ask for any of it, but in some ways, I am, well not really glad (I don't think I know ANYONE who would be glad of being sick), but thankful for the chance to still be here and to have learned as much as I have about myself and I think it has made me stronger and more level headed about the world around me as well as how much is taken for granted until its taken away suddenly. You do sometimes have to lose everything to find something worth having.

Eventually, everyone will lose everything but in working to get it back, they will gain so much more in themselves. I lost a lot of things due to others being in control of my life and having things with-held when they shouldn't have been. By letting them have that control, I gave my life to them only to end up with it being completely changed, but the one thing that taught me was to fight for myself, even if people didn't "like" what I said or did. I'm glad I fought and I am going to keep fighting because, well, I'm not ready to lie down and let this beat me.

The next year or so may be uncertain, but I can feel something in the air. I can feel change, something that will be difficult at first but will soon make sense around the summer. My friendships are going to be stronger than ever and I will really need them around when things start happening because once that train starts, there's no stopping it. I'm not too sure what that means yet, but I think it is something I need to look at and work out at a later time.

So, here's to another year of growth and strength. Lets see if we can make another one happen!

Loves
Wendy xx

Miracles do happen?

A few nights ago, I slept really well. Which isn't normally the case for me, but I do like to sleep soundly and wake up feeling better as a result, I just don't like being disturbed at an early hour. I don't believe it's right that someone should be allowed to make that kind of noise at that time of the morning, purely because they want to be loud. At half 6 in the morning, it's nI understand different cultures have different ideas of what is acceptable and I support cultural sensitivity as much as the next person, but being woken up early in the morning by someone playing loud music is not right. No one should have to deal with that when they are trying to sleep but since the psycho is gone now (something to do with him turning up at the council armed with a knife) sleep has been possible again and its having a positive impact on my physical and mental health. In fact, my mental health is now clinically stable and we even proved once and for all that my asthma wasn't being caused by it which to me is a heck of a way forward.

I do sleep a lot because of my conditions and the effect they have on my body. Asthma is an exhausting condition and it can be a painful one at that. With the other factors as well (recurrent infections and the inconclusive bronchiectasis) it can make things a lot harder. Because I have lower lung function (at best 40% on a good day) it can sometimes make it a lot harder to do things, one trip to the loo and back for one person is probably 2-3 trips for me. I do however try and be as active as I can be, even if its just a little potter around the bedroom and a quick tidy. I have found that my bedroom tends to be kept very clean because I know that would happen if it wasn't kept clean and as dust-free as possible. It does sound pretty simple but I know how much dust and asthma don't mix. Call it OCD if you want but I spend about an hour a day pottering around my bedroom just tidying up and making sure that the dust is kept to a minimum. I do like a tidy bedroom and well, it helps to be able to find things when you're looking for them. Since picking up on the dusting it has improved my health a little but there is still a long way to go before this is in check. I'm bringing the gunge up bit by bit, but I could really use a break from it all. Maybe I could put my asthma in to a little box, nail it shut and never be affected again. Wishful thinking.

I do try to keep my independence because its important to me. Even if it is just doing little things like going to the shops in my chair or pottering around my bedroom with my oxygen in tow. I believe that being given portable equipment should mean that I'm not confined to one place. I get really bad cabin fever when I'm indoors for more than 2-3 days and I start looking for reasons to go out. I've never really been a "home bird", I don't think a woman should be married to her home (my home is less than perfect but perfection takes away from life) but its remembering that going out takes planning. Before I go out, I have to check that I have anything I could need and I tend not to like going out after my morphine. I take it and it makes me fuzzy, so I will either take it OR be in control of my wheelchair. I don't do both. I'm very careful with my chair and, aside from a few toes, I haven't had any accidents or seriously injured anyone. 

It took time to hone my chair control. I've only had my wheelchair since March but now I can confidently weave the way through town as well as get on and off buses and trains with no problems. The year or so where I used my scooter helped me too because I got the hang of it quickly. I do still have my scooter in storage but tend to use my chair to get around. It means that I can be out and enjoy my life as I see fit. OK so there are days where I am better off NOT going out and keeping myself in that warm safe place of my home. 

I had a bit of a personal blow at the doctors yesterday. Basically we are almost exhausting all avenues of oral antibiotics. Its been over a year and I've been no closer to recovery, except after 5 days of Meropenam and Tazocin (had we backed that up afterwards like they're supposed to) where we nearly got it. I'm actually exhausted from having to fight it off and getting nowhere fast. We're trying one more week of orals but if that doesn't shift it by Monday at the latest then I am going to be stuck in Redditch for Christmas on home IV drips or I could be stuck in hospital, either way, I may not be able to travel which is a crushing blow for me and Jace but I wouldn't be able to take a gamble if this was the case. It wouldn't be fair or right. But we'll cross that bridge if/when we come to it.  Who knows, maybe I'll get some kind of miracle. I just have to believe that it'll be alright.

Loves

Wendy xx

When Life Gives You Lemons...

This time of year is really tough on people who are vulnerable. There are all kinds of colds/flu and other viruses around, cold weather and lots of pushing, shoving and me me me. The vulnerable people, be them old or young (because remember, illnesses don't just happen to the elderly), tend to really suffer in the cold. Its particularly harsh on asthmatics, what with then cold, viruses and other things and it can be hard to get a handle on things. The problem is that once it starts, it gains momentum and becomes even harder to get back the control. I'm lucky that there are several safety nets around and I am glad for the ambulance service and the NHS on the whole. I may have gripes about 1 or 2 staff members but on the whole, I respect the work they do. I wouldn't be here otherwise.

Its scary isn't it? Admittedly my health has deteriorated over the year but the weird thing is, since getting the right meds and equipment at home, I haven't been admitted for a while. I've had some near misses and points where before I wouldn't have coped but I am proud of myself for getting the things I needed and not allowing anyone to keep me down. True, I may not make 30 but I am going to give it a bloody good go. I'm not doing it for any reason other than knowing that the more I push and survive, the more fun I'll have and then when it did happen, I won't regret anything. I don't live for petty things like revenge, to get back at someone doesn't do anything. When you waste your life trying to get back at others or blaming other people for your shortcomings, you forget to live. When you get back at whoever slighted you, what are you left with?

I'm liked by my carers and it makes me proud when they say that they like coming to me because of my sunny disposition, friendly nature and generally good outlook and attitude to life. They see people every day who haven't got half of my problems but are so grouchy and don't want to try anymore. People who would rather have everything done for them. I find that approach lazy and its not living, its existing. I do try and do things myself, even of its something small like sweeping the floor or dusting some of my knickknacks or trinkets. There is no excuse for pure laziness, even if it means doing things at my own pace and carrying inhalers or my oxygen tank. In some ways, too much care, even if its in the best intentions is actually bad for people. It makes people not want to do things for themselves and and breeds codependency and that is truly pathetic. Even if it makes me tired, I can't ever let myself be one of those needy people who can't (or let's face it, sometimes they just won't) do things myself. It's just not in my nature.

I'm not going to always like my lot in life but to be honest, it has taught me a lot. I never knew what it really meant to be ill and I look back on the small things that I used to gripe over. I guess its a case of if that was the worst of what I had at the time then I should consider myself lucky.  And as bad as things get, I always remember that it could be way worse and that helps me to just keep a grip on things. It also helps to look on the bright side, my illness has helped me get my own place, I have more than enough to live on so I'm secure as well as having the time to do as much as I can. I guess the really bad days are worth enduring because they make the good days so much more special.

This is why I don't let people feel sorry for me, because I am always going to make lemonade when life gives me lemons!

Loves
Wendy xx