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.

Sunday, 27 February 2011

A Scary Moment...

I think after a while, you do get used to things and what happens on a regular basis, it just doesn't phase me. I mean, I know I go down fast and often very hard, and weirdest of all, without ANY kind of warning or anything like that. All I did was walk from the bed to stand with my friend Nat. It was less than 4-5 steps and I was weak. I was struggling and he decided that it would be good to check my SATs which were flagging between 91%-93%. He got me back to bed and set the neb up for me, I breathed in and felt everything get better and fast. All I was thinking was about how I wanted to just shut down and sleep.

Poor Nat though, he had never experienced anything like it. He was scared that I was going to end up going in again for another round of treatment. We were very lucky in that as my nebuliser took away the wheeze and breathlessness. I was shattered from it. I still am. I hope my GP has some answers tomorrow.

Loves
Wendy xx

Saturday, 26 February 2011

My Place...

I think we are all put here for something. Some people are here to help those who are vulnerable, others are here to teach others. Me? Well I have gotten this distinct feeling over the last couple of days, well weeks really, that my place really is in fixing things. Ever since I was a kid, I always liked taking things apart, finding out how they worked and then putting them back together. I think I got it from my Dad. As a child our house was nearly always littered with car or motorbike parts. I had screwdrivers instead of cups in my room and I was always being told off for taking something or other apart.

These last few days, I have been taking apart, cleaning and repairing Steve's laptop. A Toshiba NB100, it used to be mine until I was going to sell it to a friend. The first thing I had to do was run product recovery and reinstall the Windows XP. Sounds easy enough doesn't it? Now comes the tricky part, the NB100 is a netbook, and as a result it hasn't got an internal CD-ROM drive. You can buy external ones but for some reason, they never seem to work for long, or usually at all, so you end up with a £34.99 paper-weight. We did that once, never again.

So, the logical answer came from experience, last time we ended up doing this, we had to put the hard drive from the netbook in to my old laptop. I did the same in this case, but with a different computer obviously as I no longer have my original laptop. Now it is easy to get the hard drive out of a normal laptop, there is a hatch on the underside, you open that, pop the hard drive out and we're done. Now with a netbook, it is a LOT more complex. I had to take the WHOLE thing apart, unscrew the hard drive from it's mounting, remove the mounting plate and THEN I could put it in my laptop, spin it up and run the product recovery.

After properly fitting everything (and remembering THIS time to screw everything down), running the original set up and cleaning the tea residues with some methylated spirits off the circuit boards (that stuff gets everywhere, and it was no wonder it wasn't running as happy as it could) I was happy. A job well done and Steve now has a good computer that will work for many years to come, of course even better when I have fitted the new keyboard for him obviously.

I also managed to fix my X-Box. I was having some problems with the disc tray. It was sticking and not opening when I pressed the button. So when I finally got inside, I looked to see if the drive had dropped as we thought it may had. It hadn't which is fantastic obviously, but I worked out why it was sticking. Residues of years of dust, grime and general stuff that gathers in these things was jamming it. Also it needs some DW40 to just lubricate it and keep it moving. My X-Box can be running for a few more years!!

Loves
Wendy xx

Flat Out...

Have you ever woke up feeling a bit pants but end up trying to get everything done all at once? I think I am having one of those days. I woke up, well I say woke up, I was woken up by some obnoxious moron banging on the wall even though the music that was offending him actually wasn't us, but there you go. As for me, well, I am currently trying my hardest to find some kind of work that I can do keeping in mind about my disability and the weekly hospital admissions that could be holding me right back. I mean, if you pointed me in the direction of ANY job that would have me, considering my health and the fact that it would be damn near impossible to expect me to sustain something intense with my health, but I am looking.

It looks like my best work would be something working from home, online. I have some ideas of some kind of home business and I know my support worker would help me set that in to place. My ideal business that I would love to own and run from home would be a Craft supplies seller, so I may talk to them about setting up my own small home business, it may not be much, but it would be something to keep me ticking over, bringing in a bit of money for us (of course it would be deducted from my benefits which I honestly don't mind, I would prefer to be off them entirely, but some income support would be helpful, and I would be 1000000000000000000000% honest about what I was making) as well as me actually having a job, which since getting sick, has been the hardest thing ever.

It is made even harder when you have to justify this to someone who really doesn't get the whole thing. I am sorry if this sounds critical, but it is true. I know there is no excuse not to work, but unless you are living with a disability and spend at least 2-3 nights a month in the hospital, as well as in and out visits, it just isn't possible. Nor is it wise. I do understand that this person works hard and I do admire him for this, but I wish he could see the reality of this situation. I would love to work, heck I am bored shitless at home frankly, but at the moment, I am just too sick and that is the truth of the matter. Not me making any excuses or trying to sit on my ass all day, I am just not well enough and I can't spend more than a week out of hospital. My doctor agrees with me and he said that it would frankly be negligent to sign me back on for work as I am just not up to that at the moment. It is almost as bad as the reforms which are trying to force the sick back in to work, it is just not right.

I have said it before and I will say it again, when it comes to living with any kind of disability, if you don't have it, you just don't get it.

Maybe this was half of my friend's trouble, he just doesn't understand it and I frankly do a good job in hiding when I am really not well. But that is something I have always done and will probably continue to do until it kills me. It is because of people like that who make me feel like I need to justify myself and why I live this way at the moment. I live like this NOT through choice. I exist in this because this is what I have been left with, so please don't judge me. Don't you dare judge me.

Loves
Wendy xx

Friday, 25 February 2011

A few days away...

Well, they say a change can be just as good as a rest. Right now, I am inclined to agree with that logic, for the most part anyway. I gave myself a little bit of a change of scenery recently and helped Steve get rid of the crux of most of our disagreements, the rather large, noisy and energy sucking computer that lived on his desk. I mean this thing was not only THE biggest eyesore in Redditch, but the thing just ate electric like there was no tomorrow. When Steve had spent a day sat on it, he had clocked up nearly £10 of electric used in just one day. Now back on my own, I would use that in a month!

So now he is using one of my old computers, my, now his, Toshiba NB100 netbook. I had many a good time with that little netbook, and it accompanied me to many places, but I don't know, I have always preferred a large laptop over the miniature ones. Something to do with what I like doing with them and how I tend to use them. My laptop is like my nerve centre, it has my budgets, my asthma information, editing software and games. As well as the videos that I like to watch when I am not really doing anything. I have never really been a fan of desktop PCs at the best of times, finding them very clunky and rather energy inefficient, something that does get my back up.

I suppose it is because I am in to the whole "Save The Environment" thing, or it could just be that I don't see the point in wasting money on things that really ought not be wasted on. I am a big hater of waste at the best of time, and when I saw how much that computer sucked from our meter, I will admit I did begin to panic a lot, I mean, how on earth were we supposed to keep our electric on at that point?

But I digress from the point, I have taken a few days away from everything just to give myself some time to rest, heal and get strong again. Another admission on Monday was not the way I had envisioned things to go. Maybe I had somehow convinced myself that in getting my home neb that everything like that would settle down, but I should have understood, it was never a miracle cure, not really. Maybe I was more disappointed than anything else as I really wanted everything to go back to how it used to be. But then again, maybe it never will be, but I think now I can accept that and rather than feel sorry for myself, I think I can be glad at least I am alive and I still get up for another day.

Loves
Wendy xx

Tuesday, 22 February 2011

How are You?

Am I the only person who absolutely hates that question? I mean I know its one that is asked so that people can find out how you feel and how things are going, but for me, it is where I really fall down. I have never been one to admit to myself how I really feel, let alone admit things publicly. One thing I have noticed that this blog has given me is that place that I can actually talk about how I feel and what was on my mind. I will admit there have been times when I have typed out a long post about how I honestly feel about things, read it back and then deleted the lot.

Whenever anyone asks me if I am OK, I have always gone with what my mother taught me. She always used to say that there was always someone else who was worse off than you and that you should be thankful for what you have. I was told this especially after asthma attacks when I would be flat out for at least a day and would either sleep or not really do much else. She used to call me lazy if I wanted to sleep all day, threatening to drag me through the intensive care unit to see what "Real" sick people look like. It was only after a couple of bad episodes where I was saved by my supervisors at work (funnily enough I used to work at Stafford Hospital), one of which I was very ill and they were worried I would die, that my mother realised how unpleasant my asthma could be at times.

The problem is, I have always blocked out how I feel and pretended everything is OK, even when I was at the point of dropping. Heck, I still do it now and I pretend that I am fine, even when I'm lying in hospital being given this that and the other and still struggling to breathe. They only find out how sick I am, only through examinations and tests, often taking people by surprise as I push myself to look and appear so well.

Last night's episode wasn't that complicated and it was luckily resolved by nebs and later advice from my GP to up my Pred and lower it slowly (I'll see him in a week or so, so he can help me reduce slowly and at a pattern that won't make me get even sicker). My oxygen levels were a bit crappy and I was barely awake by the time the paramedic came. He didn't want to wait for the wagon and took me in the car. Oxygen and nebs on the go. I was kept on the oxygen for a while after the 3 nebs and left to rest. I was completely exhausted and it was thought that some kind of flu virus was what triggered me.  Although I was exhausted and lungs were still twitchy, I was discharged with no extra pred, I was wise enough to speak to the doctor, with the help of JP. I am glad I went with my gut instinct and got everything checked.

I went to see Dr Pike today in the company of JP. We talked about my last few admissions and he explained that my asthma is way out of control and it could have gone off over anything, heck thats what it seems to do best at the moment. But it is at the point where we all know it will take something specialised to get me back on the even keel again. I really don't know how I could make this positive, but I just feel like, I don't know, I have taken a leap forward and several steps back in all of this and I don't understand why when in October/November time I was doing just that little bit better. Why did things get as bad as they have again and what can I do about it. I feel so at the bottom of the ladder again and it just grew another 10 levels.

I will get there though. Even if it kills me.

Loves
Wendy xx

Sunday, 20 February 2011

A couple of Good Days...

I have had a couple of good days and a couple of visits from close friends. After the last few weeks of everything just landing on me again, I think a few days that were nice and pleasurable were definitely what I needed to pick me up a bit, and to be able to just laugh, well THAT was something else entirely, but it does explain my absenteeism these last few days.

The other day, I had a visit from a friend who I hadn't seen for a long time, I mean the last time I saw Tom was the day he married his ex-wife. Nearly 2 years ago or something screwy like that, time really flew and I didn't realise how much had passed and it was amazing to see him again. I couldn't stop smiling, even though my chest was heaving and wanting to have an attack. I really didn't want it to. I slept very well last night and was so comfortable in bed. It's been a while since I could say that.

Yesterday, I was having some quiet time, Steve had popped out for a while and I was watching a film on my laptop and was about to fall asleep on my DS, then the doorbell rang. My friend Rich was there, and I hadn't seen him in so long! Yet it really didn't feel like it had been that long as it was like he had gone back to who he was before she got her claws in, but I really can't be bothered to waste my energy bitching about someone who isn't worth my effort. I'm just glad to get my friend back.

Today, I was visited by JP, I love seeing JP and he always has a funny story or an idea to make us laugh. It makes me happy to have such great friends and lots of good people supporting me through my illness. But it does make me unhappy when I think about things and how much I want to go out and have fun with them.

It has been a week since my last admission and I would REALLY REALLY like to make it to 2 weeks, but the way things are, I really am starting to doubt it. I mean I am OK in myself if not a little quiet and sleepy, but my lungs seem to need more and more nebs just so that I can breathe at the moment which is frustrating. I much prefer the days where I can only use my neb once or twice and that's because I was feeling off, or even one of those good days where I can get by on just inhalers. These aren't often, but when they do happen, I do cherish them and I do like to have some kind of fun.

I found all the spent nebules from yesterday, man I went through so many, especially in the evening when we were thinking maybe I would have had to go in, but it was late, Steve was ready for bed and I didn't fancy a Saturday paramedic who would have been complacent and not really wanted to do an awful lot (round here the weekend medics are generally pants) and well, I really couldn't be bothered with it. As a result, am suffering today and even if I have to neb every 30 minutes or so, I will do anything to stay out of hospital. Yes I am being stubborn, but I just don't want another admission just yet and I know Steve doesn't either.

Loves
Wendy xx

Friday, 18 February 2011

When Life says "Give Up"...

Hope really does whisper "Try it one more time." Well my Hope tends to just squeak cutely at me, but in general, hope is always there to remind you that everything can and probably will work out eventually. It's like my nan used to say "It'll all come out in the wash." and I really am beginning to thing that after my mega explosion yesterday, I have finally started turning the corner, and getting everything organised back to how it should have been. I admit its not that easy, but at the end of the day, if something is worth doing, it won't be easy. So there is a lot of hope around at the moment.

A text from a friend started today's fortune. Penny is amazing and ever since we started talking she has helped me so much with everything and I honestly couldn't be more thankful to have someone this incredible and wonderful in my life. She has helped me again, with a new mesh for my Omron. My Omron is really my lifeline and when the mesh split a few days ago, I really didn't anticipate the chaos that it would cause. Luckily I still had my Freeway at my feet so I was able to have my nebs as I needed to, I just avoided it after a certain time so as to not upset the neighbours.

Next came another visit from the housing officer. He spent the evening last night trying to work out how he could actually help us now with getting our Housing Benefit back-dated and he came up with a really good solution. All we need now is the bank statements to prove that we were living on no income for that month, which really won't be that hard to do. Why no one remembered this sooner, I don't know as it would have saved us a year of hassle, stress and the constant fear of losing our home. But then again, there really is no point in lamenting the past, it can't be changed so we just now have to do what we can, with the budget we drew up and just try and get back on an even keel. It shouldn't be that hard now.

As for me, well I spent the morning hunting for the last piece of Steve's Halo Lego which faced a rather smashing side of my rage, for something that is not supposed to, that stuff can fly really well! We were finding bits of it everywhere. The last piece was behind my guitars, I only looked there because I was curious to make sure all the shrapnel of the cup was found and gotten rid of. Lo and behold there it was, a purple cross shaped thing was nestled in. So he will be very VERY happy when he comes back and I tell him ALL of our good news.

Loves
Wendy xx

Thursday, 17 February 2011

When it all goes wrong...

It all goes to hell and it all goes to hell all at once. Its just been one of those more frustratingly long and irritating days where everything that could have gone awry did and nothing went well, I kicked a chair through temper and my ankle is swollen and bruised, fun.

I think on reflection it was always going to be one of those miserable and uncomfortable days and I didn't get out the right side of anything. Heck, I don't think I was even close to it this time. I wasn't in the mood to be messed about with, by anyone, and certainly not anything. Like I said, I would not have been held accountable for my actions at any point today as it was just one of THOSE days.

Now, I do understand that I can be highly strung and very capricious about things, but  that has always been who I am and how I make my decisions on things. I had spent the last WEEK or so being subject to noise, not sleeping, bottling up my anger (not out of choice but not having a ranting space other than here) and just generally feeling the whole situation just building up on me again, not like getting angry ever solved anything, but it is often a whole other thing than getting angry with the wrong person, which is the commonest mistake that everyone can be accused of.

I actually got angry at the RIGHT person for a change. A housing officer whose lack of knowledge of housing law and basic human rights needed to be called up on this. He can't expect us to work out arrears that we didn't even run up when he refused to do anything to help us as well. I mean the noise around here has been ridiculous. Things have been falling off our walls and for some peace, I even considered taking a nap in the store room, but why should I be driven out when someone else wants to act like a complete and utter tool.

Then the biggest test came, me and Steve have been having some financial troubles, especially when it came to the rent arrears, its a touchy subject and I really didn't need heckling by the housing officer and then have HIM on my case as well. OK he is worried that we could lose our place, I know this, heck, I worry about it as well.

I lost it. In my most uncharacteristic way. I just grabbed everything I could and threw it. Models, lego and notably a cup, watching them smash on the floor. Don't ask me why it felt good, it just did and I stopped eventually in the middle of my mess, breathing heavily and just taking a few minutes. We then calmly and quietly cleaned up the mess, I looked at the broken models, luckily, all but 1 are repairable, so at least thats something, but it doesn't make it right. I won't feel better until they are all repaired, cleaned and displayed in the correct places, but that is just me feeling bad as I smashed a few of Steve's things, even though he said he took it as payback for the things of mine he smashed in temper. But the world of an eye for an eye and tooth for a tooth is full of blind people and dentures.

Ahh well, lets see how tomorrow goes...

Loves
Wendy xx

I am a Hothead really...

I know this, heck anyone who has spent any time with me at any point knows this. I have a temper and a mean streak a mile wide when someone is just deliberately going out of their way to get under my skin. You couple this with a rather resourceful nature and the things I know about and how to do. You end up with a small ball of fury and a rather impressive body count.

So next door was being his usual annoying self, another day in the life of a wastrel benefit scrounger, whose life of Riley is going to be dramatically cut short in April. His days of sitting around getting pissed and stoned, beating his pregnant girlfriend are really becoming numbered. I cannot wait for that, but when at a random time of the morning, I am woken up from another well needed sleep (now I have beat my infection, I think, the recovery from it all begins and this can take a while) and understandably I am rather annoyed at this. I understand that people are free to enjoy their music and other forms of entertainment, but it is just common DECENCY to do it at considerate levels, especially when you know there is someone who is sick in the area. If he was the sick one, he would expect nothing less, so why can't he do the same, but there you go.

After a marathon wall thumping, banging with various other implements and leaving myself exhausted and wheezing, I had a good neb session and a rest. I was then not helped by some jerk coming in and making demands of ME! Considering all the BS he has put me through for 2 years, and the fact if he had any less of a leg to stand on, he would be up to his balls in the shit that spouts from his mouth. I mean HE had the NERVE to come in ranting at me because HE read his phone wrong. So I let rip and had a right go, I mean he says "Oh I can't get anything WAH WAH WAH" well heres a solution Sherlock DON'T GET YOURSELF IN TO THAT POSITION! I mean, COME ON! It really isn't rocket science is it? If you don't want to have to pay someone back, then DON'T STEAL FROM THEM IN THE FIRST PLACE.

I am just not in the mood for any crap at the moment and its leading me in to the MOTHER of all bad moods and if one more person tries to get the upper hand on me, I will not be accountable for my actions, and I really mean that. He really was seconds away from sleeping in the streets tonight for his piss-poor attitude. I mean who did he think he was, I have spent the last 6 weeks picking up after HIM and bailing (you guessed it) HIM out all so he can act like a spoiled and petulant child. He's complaining that he has to get a job, after 12 years isn't it about damned time?

After yesterday's performances and behaviours, I really need to work out why it is that he feels the need to act like this and keep taking from me constantly. He had no right in coming in and screaming at me like that. He read HIS phone wrong, how was that MY fault?

As it is, I am getting really sick of all of this, I am getting sick of being trapped in a flat where I am constantly subjected to noise and annoyance, living with a complete and utter tool who seems to think that he is the victim in all of this and that is how he likes the world to see him. I understand it's a frustrating situation and money is a little scarce at the best of times, but how can he expect me to even want to share any feelings with him when all he wants to do is make me feel like the bad guy or completely poo-poo how I feel. Fucker.

Loves
Wendy xx

Tuesday, 15 February 2011

Reminders...

After my awful mood with everyone and everything last night, I think I was at that point where I needed to be reminded of something sweet and pure. That reminder came in the form of our 3 guinea pigs. Patch, who is my baby, crawled under the quilt with me and just snuggled down, which was really lovely. A typical thing for Patch to do really and it was so affectionate.

I was then met by the pups. They really are bonkers little creatures. In to everything and anything and always up for cuddles and play. Hope is getting bigger and is actually seeming to get fluffier which is the cutest thing ever. He is a vocal little creature as well and makes a lot of high pitched wheeking noises when he runs over to me. And Gizmo, well he has discovered a taste for something he probably should avoid. Gizmo is the first guinea pig I have ever met that will snaffle a cup of tea. He was climbing the cup and lapping it up as if it was nectar from heaven. I know it is probably not good for him but he loved it and it really was quite funny. Our little baby bull.

I fell asleep after my weekly fix of Glee and Tool Acadamy, as well as some Family Guy. My pain relief at the moment is pretty good and I have been kept a lot more comfortable than I have in a long time. My peak flow last night was better than it has been in nearly 2 years. After madly pumping in the same dose of a neb through an MDI (running low on Atrovent nebs so I thought instead of worrying I would try and just keep up with MDI's). To get the 500mcg dose from an inhaler which gives 20mcg per dose, I had to pump in a whopping 5 puffs per 100mcg. So that worked out at a 25 puff dose through a spacer. It seems a lot, but in actuality it was literally just the same as a nebuliser dose. With a 5mg Ventolin neb on top of that, I managed a peak flow of 430 l/min, which is actually what someone of my age and height should be getting so I had to have done something right!

It also meant that for the first time in a while, I was able to get a good nights sleep, free from pain and breathlessness, I didn't cough or snore in the night and I woke up feeling revitalised and energetic. This is something that almost never happens and I can be up several times in a night just to have an inhaler or take some painkillers because it can be just that painful at times. People don't realise just how painful asthma can actually be. When I have had a bad few days with it, my airways can feel very raw and sore, my chest muscles will be strained and over worked from the effort of taking a breath and I feel like I have been made to run several miles. It really is hard work sometimes and its not something that many people realise.

The common school of thought is that people with asthma only need a blue or brown inhaler, their lives aren't limited and they usually grow out of it. Yes this can be the case and I am thankful that there are people out there whose experiences are at least OK, but I do understand now the extent that brittle asthma can limit your life on a day to day basis.

Just 2 years ago, I was able to walk the 2 miles up hill to town with no problems and I used to love cycling. I spent time partying and having a lot of fun and my asthma never stopped me. I was only taking 2 inhalers and a nightly tablet. Yes I had been through some exacerbations requiring hospital treatment, but I always bounced right back. I am thankful for that time that I did have and I accept that I may never be able to go back to that lifestyle, but I will do my best with what I have. Even if there are days when I am just not well enough to leave the flat or all I have done all day is sleep. I think I would rather concentrate on getting well right now than anything else. My airways are scarred and damaged, some of them are widened, but I know there are people out there with a hell of a lot worse and I admire them for their strength, generosity and attitudes to keep going. People like that are rare gems and are such an honour to talk to and be acquainted with.

I honestly think if we can all take stock of what we have and remind ourselves of what we are truely blessed with, I think we would be happier as a society.

Loves
Wendy xx

Sunday, 13 February 2011

A Month Later...

Its been a month now since our beautiful Alphonse passed away so suddenly. He really was such a sweet little creature and we do miss him, horribly. I think it was so sudden that we lost him and the fact he was little more than the guinea pig equivalent of a teenager just made the whole thing seem just that little bit sadder. I still sometimes look over at the cage and expect to have this black and white face looking back at me, then start wheeking happily for more food. Unfortunately we don't see him, but we do see our precious pups.

So I guess on the other side of it, it has been a month since we got Hope and Gizmo. Hope is about 7 weeks old now and is as boisterous as ever. He sat with me the other day and just cuddled up, then started making these sweet high pitched noises as he ran over and just sat on me. Everytime I move, he follows me like a lost puppy. It is safe to say, I have been adopted by this little one as Mum. I don't mind as he is such a little tinker! He keeps me on my toes.

Gizmo, who is 10 weeks old, is settling down a lot better now as well. When we first got them both, Gizmo was very skittish and would kick and squeal if you went to pick him up. Steve has done a great job with him and has trained him to be more social, I think they are very taken to each other and obviously, Gizmo is getting more used to me as well which obviously is a good thing.

As for me, well I am starting to settle down in myself a bit now. Admittedly, my chest has had other ideas and I spent last night in the hospital which wasn't fun, but at least I am now on something to try and clear my chest a bit. If this doesn't work then I will go back to Dr Pike and see what he says. What really took my doctor by surprise (the very lovely Flight Lieutenant, an RAF doctor, VERY yummy!!) was the fact that I was left to become clinically exhausted all because I had 2 of the most incompetent paramedics, who are probably good with the more obvious, but a silent chested asthmatic wasn't one of those things they knew. Luckily this seems to be a dying breed in paramedics, but you do admittedly get the odd one or 2 who are frankly clueless.

I was given more nebs, steroids, painkillers and antibiotics and, funnily enough, I began to make a recovery quick enough to be allowed home, some 4 hours later.

Loves
Wendy xx

Saturday, 12 February 2011

What is the Point?

I mean really, what is the point in playing your music so loudly that it rattles all the flats in the surrounding area? Using music to "drown" out when your arguing and probably hitting your pregnant girlfriend? Being frankly obnoxious and pissing everyone off, just because you feel hard done by? THEN complaining that the chronically ill person next door is using a machine that is helping them when YOU want peace and quiet. In a nutshell, what is the point of being an ignorant toss-pot?

My neighbour is really starting to get my back up and I just get annoyed with the sheer hypocrisy of the whole thing. When HE wants peace and quiet, we have to whisper and I am not allowed to use my nebuliser without threats and complaints. Yet whenever he feels like it, at any time during the day, night or otherwise, we have to listen to his music at such a volume that is rattles our windows, makes things fall off the walls and vibrates through the furniture. The flat is exactly the same size and layout as ours, and it is a known fact that the walls here are like paper, so why can't this person be as considerate to us as he wants us to be to him.

I think it comes down to treating people in a way that we would want to be treated. I am a firm believer in this and always do my best to keep this ideal up. I am polite and friendly to everyone I meet and am courteous, but why is society so rude? I was always raised in the idea that manners mattered and they didn't cost anything. One thing my mother did do for us was teach us how to behave around other people, not throwing a tirade of verbal abuse or picking fights just because we could. OK so at times only I seemed to take it on board, but that is not the point. It just gets my goat when people have bad manners and yet they expect others to be courteous and polite towards them. Here's an idea: BE POLITE TOWARDS OTHERS AND YOU MAY GET TREATED THE SAME. Respect isn't a given, it is earned. FACT.

OK I know I am ranting a little, but it really does disgust me how people behave towards each other at times. Throughout my life, I have witnessed or been subjected to some of the worst of human behaviour and I made it my life's aim NEVER to do that to another person. I have seen people being beaten up, even hearing of people being killed over what they wear or what music they listen to. I have been outcasted because I had health problems or mild defects (I have a squint in my right eye so it goes off centre, I was bullied a lot because of this), beaten up by my own brother because of, well, I never did find out why there, and rejected by my mother because I never became what she wanted me to be. In the YMCA, I have heard of stabbings, people being broken in to and anti-social behaviour all over the place and the one thing I always ask is "What is the point in this?" as I feel that just being like this and behaving like this "Because [you] can" is just wasted energy, time and potential.

I think people should look at how they act towards people and think to themselves, "How would I feel if someone did that to me?". I think they would be in for a shock. I really do. So maybe we should get rid of this "God Complex" we have and this feeling of entitlement to the world and everything that goes with, be thankful for everything we have and ditch the philosophy of "Do on to others... but do it first."

Loves
Wendy xx

Friday, 11 February 2011

So Breathless, So Tired, Waiting for Something to Either Happen or Go Away...

Today has been really rough for me, my breathlessness has been so intense at times and I was barely able to do an awful lot today. I get so frustrated as there is a million and one things I would have liked to have gotten done today, and I couldn't do it. I got breathless and had to neb until I felt better. Luckily it has just been a case of taking my medicines and getting some rest and I caught my breath.

All I want to do sometimes is sleep, or cry because I am worn out by the whole thing and its frustrating when you have to hold on to this strong fa├žade maybe in the hope that no one notices just how you feel, so that they can't use it as a weapon. I pretend to laugh, but there are times when I really just feel down. I have this problem. I can't cure it. I can't catch a break in so much at the moment which I find is the most distressing part and I feel as though I am just losing out. Big time.

OK so I will admit that this isn't exactly what I was expecting to be by this point, nor where I was hoping to get to. At 23, I was hoping that I would now be working as a Media Studies tutor, or just working and doing something with my life, living in a cool loft conversion, maybe even preparing to get married or leave the UK for good. Not stuck in the YMCA, unemployed and too sick to work and feeling pretty miserable about things. I know we all hit those points in life, but I am starting to wonder when things start to get better, do they start getting better? I wish there was an easy answer in all of this, I do, but sometimes I guess you have to just accept it. Things are the way they are because that is what they are. Even if it sucks at times.

I don't want to admit defeat nor sink in to a pit of melancholy and self pity, BUT I would like to take the chance to accept my position and look at a more positive outlook on things, maybe they will get better, maybe not. I just have to make the best of what I have, and learn to be happy in that. Yes there are times I just feel like sobbing and not stopping, but where would that have gotten me? Someone I admire for her strength, would she have broken down and cried, I doubt it, so I refuse to let this all drag me down.

Loves
Wendy xx

Thursday, 10 February 2011

Lack of Interest...

Before anything happens with my asthma, I go through this period of complete apathy. I mean even Sephiroth himself could walk past me naked as the day he was born and I wouldn't be that interested. I stared at the screen for 5 minutes before typing anything, this was AFTER I had fallen asleep on the loo again. I just can't seem to stay in the game when I am like this.

Today has been a fairly quiet day spent cleaning and generally putting everything in the flat just right, again. I even managed to clean down the balcony which now smells less like rotting guinea pig cage and more like bleach, wiped down the kitchen and bathroom floors and did a through vacuum of the carpets. I also managed to wipe down all the surfaces and get rid of all the dust. In the middle doing all of this, I did try and have a nap, but for some reason, I was so unsettled and had to do something.

I guess I just wanted to let you all know, I am still here, I am fighting this bastard, but there may be a point where I may have to get some help on this, I will let you all know. For now, I think I may just settle down, have a good long sleep and keep on with my meds schedule as planned.

Loves
Wendy xx

Wednesday, 9 February 2011

Hanging on Again...

I woke up this morning feeling a bit lethargic and generally off colour. I guess I knew this was coming and I shouldn't have felt anything other than expectant. I mean for me it isn't usually a case of IF things plan to go off, more like WHEN. I woke up at about 10 when my alarm went off. Checking my Peak Flow, it was below the dreaded 200 l/min mark. It was 190 l/min, I was breathless and I didn't understand why I was struggling again. Instead of dwelling on that, I decided that the first thing to do would be a Salbutamol 5mg and Ipratropium 500mcg nebuliser.

My protocol states that if my starting Peak Flow is rubbish and I feel rubbish then I would up my steroids and neb every 4 hours. I added in inbetween doses of 2.5mg Salbutamol and extra Symbicort, just to keep things on an even keel. This can help keep me out of hospital, BUT sometimes, it is just stalling the inevitable. I need to take this careful or I could just end up in the thick of something interesting.

To keep my mind off things, I took on the housework, bleaching the kitchen down, vacuuming the carpets and wiping down the floors. As hard as that can be on my body, it needed to be done, and I needed to keep my mind off worrying about the fact I am very breathless and my chest feels like I am being beaten around with a sledgehammer. It's not the most comfortable of things and I am trying to keep on top of things rather than avoid them. Face the problems head on, then let things progress and go one way or the other on their own. If you wait for the reaper, you forget to live. That was one thing I never ever wanted to be or ever do. It's better to just live and do what I have to inbetween, that or sink in to self pity, another thing that really REALLY gets my back up.

But I think one thing I may do is keep a record of what I have been taking, when and why, so that when the time comes, we know exactly what the score is, which could save valuable minutes when it comes to it. Call me overly officious but I think if I can help myself in anyway, I will. No matter what it takes or what the price of it is. It is a lesson I have had to learn the hard way.

Loves
Wendy xx

Monday, 7 February 2011

Thankful

I am really in one of those more reflective moods at the moment. I am thankful for so much around me and the things that have made life less depressing. I have a nice home, amazing friends who are my family, someone who loves me and looks after me when I am sick, and of course the animals who we live with and make our house a home.

We have had Yoda now for nearly 2 and a half years, now for a Syrian Hamster, that is a good long life that he has had with us. It has been happy as well, he has had daily food, fuss, water and affection. Yes he is going grey and slowing down a bit now, but he is an old man so it's OK. When we got Yoda, we saw him and his huge personality, we had to have him!

I have had Patch now for nearly 3 years. They have been the happiest I have ever spent, and they have been made all the better knowing that I have a special friend like that on my side. He has been there through a break-up, a new relationship, illness, and he has moved home with me a couple of times too. He has never complained or been aggressive with me, he has mopped up my tears and given me constant love and cuddles. When we got Alphonse, he adopted him willingly and helped us with raising him well.  Patch has been my closest companion for 3 years and I can't imagine my life without him. Even if he does tend to be a bit taciturn sometimes, but thats a tortoiseshell thing I think!

I have my meeting with DIAL tomorrow, and I am nervous, but I get the feeling that they will help us move out of this flat and on to more appropriate housing. Maybe even offering some help with the rent arrears, but Steve has an appointment with the CAB tomorrow so we may get something of an action plan here. We hope.

I guess sometimes, it can get frustrating when you don't feel as though you can catch a break, but I have a theory that if you spend all your life dwelling on what you don't have, you forget to notice and enjoy the things you do have. Glass half full, and all that really.

Loves
Wendy xx

Saturday, 5 February 2011

Living with My Condition...

I have mentioned a lot of the times where I have felt frustrated when it comes to Type 1 Brittle Asthma and the constraints that that has on my life and what I can do. However, as is my way of coping, I have a habit of trying to make light of everything. It was what my mother always used to do, gloss over the reality with a veneer that chances are was so obvious or cracked that it was pointless anyway.

So, here is a reflection of what life is really like for me. I understand that it may seem a bit far-fetched, but it is something that I live every single day from when I wake up till I pass out from exhaustion every night.

My day often begins between 8 or 10. It really depends on what sort of night I had, whether my asthma woke me up, or whether I could sleep for nightmares and other nasties. I usually prefer to wake up in my own time, that way I know I will have gotten the rest I need and I am less inclined to be grumpy or stroppy, than if I was woken by an alarm or another person's inconsiderateness. I usually have a cup of tea waiting for me, or if Steve is out, I slowly go and make a cup of tea. Before I do anything, I check my Peak Flow, a method of monitoring my lungs.

Usually for someone of my age (23) and height (5 foot 6), a peak flow measurement on an EU standard meter should be around 435 L/min (peak flow is measured in Litres per Minute). Anything under 85% would be suggestive of asthma. For me that would have been the 370 L/min mark. My peak flow on a good day has been around 250 L/min and I have been on 40mg of Prednisolone when this score was obtained. Just lately, anything over 200 L/min has been the best I have been able to do, and after the last few weeks that in itself is a bit of a downer, but that's how things are at times.

When I get back with my tea, I usually have to have my first neb. I get very tired on such a short walk, I will admit this can be very frustrating, but then I will sit, neb and feel much better within a few minutes. I will usually measure my Peak Flow before and after this, partly to make sure I am using it appropriately, and partly to make sure it worked. By the time the neb is finished, I am ready to take my usual morning medication, including any extra Prednisolone and Co-Codamol as needed.

After all my morning medications, I will set about pottering and tidying up, again of course taking it as easy as possible. My general rule of thumb is: if it makes me breathless, only do as much as needed to make sure the place keeps tidy. If I can, I do like to get the vacuuming done, kitchen cleaned and then maybe even the kitchen floor wiped. Depending on how I feel this can take a long time and I will be nebbing frequently.

After Lunch, (which is usually a light affair of soup or sandwich) I sometimes like to have a rest with a film or 2, a pot of tea and maybe a well deserved snuggle in the duvet. I usually fall asleep if my asthma has been kicking me about, and will nap for as long as I need to, of course keeping on top of any wheezing, pain or anything else. Sometimes it is as important to be comfortable than running myself in to the ground.

As there is no such thing as a typical afternoon/evening, I try and do as much as I can, seeing friends, doing drawing/writing work and organising household things like bills, budgets and even diet. I spend time with my animals and give them so much love and affection. Since losing Alphonse, I was very distant with everyone, I was grieving in a way I never had before. I had fought for so long to try and save him, and it was that moment where I signed the Euthanasia form for him, that I really realised just how far away from the 10 year old who held Sniffy as she died I really was. It was the most surreal thing in the world.

But we are getting off subject, after Dinner at around 5, I am preparing for an evening of chilling out, although often this is changed by my chest doing what it does and having to take a ride in an ambulance to the hospital. Then its a case of the whole will I/won't I for staying in hospital overnight or for a longer stay. This used to be a weekly thing, sometimes up to 3 times a week, and everytime I went they would be thankful that I had gone or I would have died, only allowing me out as I would plead to go home. Hospitals are very uncomfortable places.

On returning home, all I would do is sleep. Having asthma attacks is hard work and can feel like running a mile breathing only through a straw, so it can get quite gruelling. Luckily now I have my own neb at home which means that rather than waiting for up to 2 hours while doctors work out what to do, I can have a neb straight away, cutting it down early or even avoiding becoming completely shattered before any treatment.

Loves

Wendy xx

Friday, 4 February 2011

URG!

I think I ought to get myself laminated. You know so nothing ever sticks to me and all the germs would wipe away, rather than manifest themselves in to my system and making me feel like death warmed over. All I did was go to a supermarket!!

Yesterday I had been somewhat unsettled, rattling from one thing to the next and not really taking a lot of time out to relax. Thing is, I have been very uneasy and in a lot of pain. My lungs were a bit grumpy and just don't seem to want to leave me to it just yet. So maybe rushing around and having a mad dash with the vacuum cleaner wasn't one of my better moves, but at the end of the day, it needed doing and these things really don't do themselves.

Today I just want to get some rest and maybe game for a bit. I have a game I was hunting all over for coming my way in the post now so I am happy about that. As well as the fact my skinny jeans slid on this morning without me having to undo them, not bad for jeans that 6 months ago, were 2 inches from making the button meet! That in itself is something of a small accomplishment isn't it? I also can get my old camo blazer back on, OK not quite at closure yet, but I can now wear it, so theres a start. I wouldn't mind, but the damage and stretching to my skin thanks to Pred means that I will always have loose, sagging skin around my stomach and boobs, but then again, maybe one day, I may go for a tummy tuck! If that can be afforded that is!

Last night, I was surprised by a call from Stacey. Bless her, she was really worried as I hadn't been online or texting much for well over 2 weeks. Truth be told, I just hadn't felt up to much and had spent the most part of that time either asleep or blogging. I go online and all of a sudden, my MSN was going mad with people wanting to catch up. Maybe what I want to say here is, if I am not online, its not that I don't want to talk, its probably more of a case that I just want to sleep or have been playing with my darling little pups!

The pups are really starting to show their little personalities. Hope is a sweet little thing who likes to get in to all kinds of mischief. I can't move from one end to another without him wheeking at me (or trying to wheek anyway, but he is so tiny and cute that it sounds like he inhaled helium!), he followed me around the bed yesterday, before settling on my belly and falling asleep. Very cute! Gizmo is a right little baby bull! Knows exactly where he wants to be and will he stop until he gets there? Will he heck! Just lately he has taken to gnawing the bars of the cage, hopefully something he will grow out of! Hope, however has a more... pressing matter. He is still humping like mad at the moment, but I think soon he will get the picture and stop it. Alphonse used to hump like there was no tomorrow, and then he grew out of it at the age of 8 months.

Loves
Wendy xx

Wednesday, 2 February 2011

Routine

Have you ever noticed that as humans, we all work through specific routines when we do whatever we do at any time of day? I actually took a glance at my routine, especially my morning rituals. I wake up, usually around 10 if my chest is bad or earlier. I have a drink and make sure my drugs are taken by 10, ish. I looked at all the medicines I take, remembering what I would be like if I wasn't using them.
  • 40mg Prednisolone (currently on a reducing dose, but that always takes a while), my steroid tablets to calm the inflammation and wheezing.
  • 150mg Sertraline, an antidepressant, which also controls my spiralling OCD, when that can be controlled. 
  • Cod Liver Oil, Vitamin supplements and Glucosamine. Supplements for my diet to improve my general wellbeing and help boost my flagging immune system
  • Symbicort, steroid and long acting reliever. 
  • Beconase, for my rhinitis.
  • And then last (but not least) my Ventolin and Atrovent, now depending on how I feel or what my peak flow is, I can either neb this to a 5mg Ventolin to 500mcg Atrovent ratio, OR have it from my inhaler via a spacer for a 100mcg Ventolin to 20mcg Atrovent ratio. It just depends on how I feel really and what my lungs are up to.
  • Once a week, I have to take 70mg of Alendronic Acid. This is used to protect and help my bones, stopping them from fracturing.
  • As well as when I need it 2 Co-Codamil 30/500's. Painkillers, but I don't like how they make me sleepy when I have them, so I do try and leave those be as much as possible.
This is my usual morning, and it can seem sometimes like I have to put up with a lot when it comes to maintaining my health, monitoring my conditions and making sure everything is going to be in order, but really, when you consider how things can and often do go, it really is less hassle to just get on with it. I felt quite bad for the poor doctor last week as he had to write up my drug chart and protocols for the nurses to be able to give me the correct amount of medicine. It must have looked funny though. All that medicine for just one patient. A young one at that!

It was quite annoying though, I used my neb, like I was supposed to, only for the idiot next door to start banging on the wall, complaining! After all the noise he makes on a daily basis, he has no right to complain! After all, it is a MEDICAL device. Yes it is noisy, but it SAVES MY LIFE and means that I can be afforded some time at home, instead of being in hospital constantly, which would have been the case without it. Then there would be the constant complaints about ambulances turning up with blues and twos. Bare in mind its completely acceptable to play music so loudly that it rattles the whole building. He really is a toss-pot.

I am waiting now for my lovely new DS to arrive (with MANY thanks to Stephanie from TGPF for her kindness) and I am really looking forward to it. No scrap that it has JUST arrived!!

Loves
Wendy xx

Tuesday, 1 February 2011

So much like hard work...

Even when I wake up and my back is so painfully stiff and my chest is unhappy, I still try my hardest to get some odd-jobs around the place done. In less than an hour, I managed to clean the kitchen, store room AND the main room of the flat. Vacuuming, bleaching and anti-bacterial spraying the sinks and actually putting things away, rather than leaving them strewn around the small store room. It is an annoying habit of both of ours to just drop everything in to the store room and leave it there. Instead of putting things back in the correct places.

Now I admit that at times, I can be very untidy and disorganised. I will be the first to admit this folly of mine and I know it is something that I can and will work on as time goes by. One thing that really did annoy me though was in the kitchen, the windowsill hadn't been done in months and was so dirty and dusty that when I washed it down, as well as the objects that take residence on there, the water was a lovely shade of greasy brown. Yuck! I managed to clean this up and spray it with some antibacterial spray to kill off any nasties that had decided to take residence there. I was impressed really with the result of my work.

Before I did the kitchen and store room, I did do the main room of the flat. I spent most of yesterday dusting the sides down and the models, so all that was needed here was a good hoover and that would be done and dusted. So to speak. Admittedly this would have been WAY easier, had the hose of the vacuum cleaner not split, so I ended up having to glue that back in to place... Not as easy as that sounds, but do-able and the cleaner is as good as new!

No one could ever accuse me of not doing my fair share of the work around here, and my lungs had a strop to prove it to all of us that not only do I work hard enough around here, but it really is a drain on me at the moment, with my energy being as low as it is. I think I have proven my point though. I do work harder than most around here. In a while, I will be working out what needs to go out of our payment tomorrow morning and draft up a shopping list...

Fun huh? Well this is the demands of running my own household and dealing with my problems, as well as what "problems" Steve has as well.

Loves
Wendy xx

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