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

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

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

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

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

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

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