Never felt this tired before...

Everytime I think that I couldn't get any more tired than the episode before, my body really does like to prove it can do one better! After my last few hospital runs, I was tired, stressed and irritable as hospital had become a bit of a negative experience. Not because of the being in and having things done to me, but more the effect this had on Steve. He would get stroppy and aggressive for days after, for reasons even he doesn't even know. It is a lot to put up with sometimes.

This time there has been none of it, but could that be the fact that this attack was one of the worst ones I had ever had. What got me was I was so terrified of going in because of Steve's reactions to me being in hospital, I fought this bugger for 2 days. 2 days of nebbing, hoping and trying my best to not have a huge one. Unfortunately we all know what happens when it comes to the best laid plans of mice and men, or should we say "hamsters and Wendy's". It, as it was destined to, went completely awry and I was so sick, had the Magnesium not done it, I would be lying in ITU this very moment.

This has only just sunk in, and it has really rattled me. I have had close calls, but nothing to this extremity or to this kind of effect. I really need to stop fighting this and just accept it, when I need to go in, I NEED TO GO IN OR I WILL DIE, and at only 23 years old, I really have too much to do first, as nice as the idea of the Rainbow Bridge is, I am not ready to go there. Not just yet.

It was strange, although I only did a few things today, nothing too strenuous, I am absolutely exhausted and am actually getting ready for bed at an early time. Neighbors permitting of course!

Loves
Wendy xx

The wonders of Tramadol...

Last night was a bit of a rough night, my chest was agony (I mean really sore and I couldn't take a deep breath as it felt like someone had whacked me through a cheese grater), my temp was really high (38.7) and I was struggling again. Not good. So after about half an hour after we'd gone to sleep, Steve woke me up and got me on a neb, made me a hot chocolate and gave me a Covonia shot to help me bring up the gunk that has gathered in my lungs.

Then we went about settling the pain I was in, I had already had my Co - Codamol, so more Paracetamol or Codeine were out of the question, so we moved up to another 50mg of Tramadol. That did the trick and soon after I curled up and went to sleep quite contentedly and stayed there. Until my alarm at 10 went off to get me to take my morning round of pills, nebs and the rest of it.

I do feel a bit better after a nice long sleep and it was just what the doctor ordered really. So my mood is a little more elevated today as well which is a positive, for me at least. I want to set about doing some more missions on FF XIII, as yesterday I read in my shiny new book that if you use certain catalysts on weapons, you can get the ultimate weapons for your characters so that is what I aim to do today. Get the catalysts and make some really impressive weapons for Lightning and co. As well as give my dear friend Ant some presents that I have made for him. More on that later as they are surprises for him.

Also, I managed to fix my old 4GB MP3 player, it wasn't turning on as there was a file that was stopping it, I reset the device and formatted it and now it works happily again which is good because I used to have it in bed with me sometimes when I have trouble sleeping. That and if my lungs play up, I can take it with me to hospital and listen to music if I can't sleep. I usually take my laptop with me as well so I can watch films, chat on MSN (3 pay dongles are lifesavers) and generally pass the time while laying in bed and getting plenty of rest.

I do regret that I am falling asleep at the helm again, Tramadol makes me sleepy which right now is probably a good thing as I am not rushing around trying to look after everyone else.

Loves
Wendy xx

Interesting...

This is a recent hot topic on Asthma UK and its something that I do find interesting myself. The subject is, of course that of the use of nebuliser therapy in the domestic setting. I myself am on home nebs and know many people who also use this therapy at home. However this is a quality of life thing, as without my nebuliser, I am pretty much housebound and unable to do the smallest things for myself.

I borrowed this from the forum, it was posted by Koolkat on August 3rd 2010.

"The 2008 British Guideline no longer recommends nebulised therapy for the majority of asthma care. It cites evidence suggesting that a spacer and metered dose inhaler (MDI) combination can be as effective, if not more effective, in many situations in which nebulisers were formally used. This includes both acute and stable asthma.

A spacer plus MDI is to be preferred because of the following issues:.

•More effective treatment with fewer side-effects because of better pattern of deposition

•Problems of poor inhaler technique largely overcome but spacers need to be used properly too

•Easily used by children and the elderly (except those with weak or arthritic hands)

•As effective as a nebuliser in treatment of acute attacks but light, cheap, maintenance free, portable and available on prescription

•Useful for treatment of first attacks of wheezing in patients who have not used inhalers before

•Useful for administration of bronchodilator when testing reversibility in the surgery to establish the diagnosis of asthma

•Reduced prescribing costs by basing treatment on the much cheaper metered dose inhalers

There are few cases in which the British Guideline recommends nebuliser use. It initially states that there are insufficient data to make a recommendation about their use in life-threatening asthma. However, later the Guideline does recommend that the nebulised route (oxygen-driven) is used for the delivery of high-dose beta agonists in acute asthma with life threatening features. Nebulisers have however certainly been used in this situation to deliver high-dose inhaled drugs. If a nebuliser is used in the emergency situation, there are theoretical risks of oxygen desaturation whilst using air-driven compressors. Therefore nebulisers should be oxygen-driven with a "high flow regulator" fitted to the cylinder in order to provide the necessary flow rate of 6 l/min.

Nebulisers are less useful for domiciliary management of stable asthma, but patient preference should be taken into account, and some patients - especially those with brittle asthma - may have more confidence in nebulisers than in MDIs. Such patients require a verbal and written plan for self-treatment and it is essential that repeated use of the nebuliser does not lead to failure to seek medical help and the prompt use of steroids."

I read this and found it interesting and got on to Google to look up the British Thoracic Society and their guidelines for myself. I found that the biggest worry of using nebs at home is that sense of security that even I will admit can be dangerous and you can get complacent about seeking help and thinking that just a neb would fix all attacks. I know this isn't the case with all attacks. I have had them and needed use of IV Hydrocortisone, Magnesium or even other therapies like Oxygen overnight so that I can recover. It worries me at the moment as so many people are currently asking about how to obtain home nebs, even though they are currently on quite small amounts of treatment as they are.

I was told that a nebuliser would only be considered at home when other options were exhausted, and we went about trying the other methods and medicines to help me overcome this. For 6 months, I had to play guinea pig, becoming inflated by steroids, taking other medicines to manage the side effects of the ones I take for my asthma. Then theres the change of preventor and protector. We tried so many different things that I was feeling like a human test subject, but because we were trying so many things, it lead us to verify what exactly we were dealing with.

Maybe what I am thinking is that rather than people asking for further therapy to be thrown at their condition, maybe they would be best finding out what it is that made them so ill in the first place, or maybe I have gotten the wrong end of the stick, but I agree with doctors who worry about the security blanket that these things can become.

Hoping you all are keeping well.

Wendy x

Waking up, the morning after the night before...

Last night was probably the icing on the shit-cake that was the last week. If I had ever cried that much over something, I'll be surprised. I was tired, in pain and just wanted to sleep. Steve was in one all day yesterday, and when I found out what it was that made him stress me out like that, I couldn't have him near me for a while so I asked him to leave, followed with verbal abuse and being told that I was uncaring (OK for someone who didn't care, I managed to sob myself in to more pain). Then I got when I needed, remorse. True remorse from someone who never realised what they were doing until it got to that point.

The good news is we talked and decided to carry on together, but we are no longer engaged. We got engaged way too quickly and it really was a bad idea for me to enter this. I was dumb, and I followed my heart too far, ignoring my head.

I slept OK in the end, but had a searing headache behind my temples, to contend with the pain in my sides and chest because my lungs have fluid inside them. This is a very unpleasant prospect and its hard because its left me exhausted and I just want to fall asleep and stay there for a while and being comfortable and content. I get sick of pain sometimes I think, even if I pretend that it's OK and I'm surviving, but right now I am so weak, I can't even get the strength to cough and shift what it is thats in there. So right now I am having a neb of saline solution and getting what rest is permissible. Next door has woken me up once or twice today and its left me somewhat cranky and tired.

Here's hoping really, for the comfortable rest and shifting this myself, or I will have to face the alternative, having it drained off for me. I really don't want this as it is painful and would mean a long stay in hospital. Just before Christmas as well.

Much Love
Wendy x

Stroppy lungs...

I really wish sometimes that things could, I don't know, go my way a little bit. I am getting increasingly more breathless as the week rolls on and there is that part of me that hopes I can go acute soon so I can go to the hospital without being turned away as soon as I get there. The problem with acute hospitals, people who are ill, but can't get in to doctor's as it is WAY too busy with old dears wanting antibiotics for the common cold or other minor problems which are usually self care (these are my GP's own words not mine, I just agree with him), can go, get treated and the care they need. Other than waiting at home for things to become bad enough to get to hospital and get diagnosed and treated properly. I am in that limbo inbetween this. Heres hoping soon somethings going to happen and I can get sorted before this gets to the point where I nearly die, again.

Enough about that rant I think or I would be here all day and probably most of tomorrow. Which will leave everyone exactly where we are in a situation where they cannot be happy. It is so snowy here and as cold as it is, I think its really pretty to look at. I am hoping for a white Christmas this year, but instead of dust (spending Christmas at Steve's dad's place landed me in such a state I spent January in a serious condition), I hope it will be snow. Of course allowing myself and a friend of mine to meet towards the end of the month, I am really looking forward to meeting her as she is AWESOME and has shown me how strong an individual can be in the face of adversity. She knows who she is and how amazing I think she is, I tell her every day.

A bit concerned about Steve's general attitude just lately, he has been snapping at me pretty much constantly, which makes me wonder if I did anything wrong here. Or if he is just getting fed up of the guy next door and his music, which is still going on, but we are starting the process of noise abatement, however long that takes. I don't know, I have never been in that sort of position before as my neighbors have usually been nice and understanding people. I guess when it comes to Steve, he'll either tell me why he's snapping at me constantly or he won't, but I really do need him to stop it as none of this is actually my fault and snapping at me isn't going to help any of this at all.

My head feels so fuzzy and I am having trouble staying awake because struggling this much is absolutely exhausting so I am going to leave you all now and maybe have a sleep and recover my strength a little. I will update later, or get Steve to, depending on what happens.

Loves
Wendy x

I could never get the hang of Wednesdays....

Is it me or does each day have it's own specific feeling? Monday is the beginning of the week, we're all gearing up for the week ahead. Tuesday has the restless feeling of busying away, and Wednesday always feels a bit flat and people feel apathetic.

On a plus side, after 2 hours of calling about 3 different numbers and arguing with so many different parts of the DWP (first we were worried we would need a crisis loan, THEN I had to call Worcester Benefit Delivery Centre,  told to call back in an couple hours while they sorted it out, Steve had to call RE: JSA can't pay him anymore, but he still has to sign on, even though his money comes from my ESA (joint claim or something) THEN I had to call another number, explain everything for the 18th time in the last week) in order to get my ESA money sorted so we could make rent and do this important thing, like eating for the next week. Money was in. We were happy about that.

Then again, last night wasn't that easy. I was so upset because I thought that maybe me and Steve weren't working any more. After a talk with Vicky, Stacey and Nat, I had a good heart to heart with Steve and I am happy to say it strengthened us. It gave me an outlet and I cried for the first time in months, I actually had a good cry, and it made me feel 100% better about how I felt. About coming to terms with my illnesses and what that meant to me. I am stubborn about everything.

I suppose I was fighting against everything as I never wanted to admit how ill I was or how hard life had become for me. I kept on trying to live as I was before all of this. I never realised how much I was putting on myself and it was so foolish, and so very stubborn. Most importantly I was WRONG and I am sorry for all the times I have scared the people I love the most.  

So we had to go shopping for our food and other stuff for the next 2 weeks. I hope this isn't going to happen every 2 weeks or I might go a bit potty. Or more potty. None of this has helped my lungs and they really had a strop after brushing my hair (!) and I wheezed my way back to my nebuliser. 5mg of Ventolin and 500mcg of Atrovent and I was ready to go out.

Have started some vitamin and mineral supplements to help my immune system and joints through the winter so hopefully I will not be swearing every time I go up and down stairs. My knees are very sore and stiff because of the large amounts of steroids I use to keep going. Not pleasant! The phrase "the price we pay for the games we play" springs to mind here.

Love Ya
Wendy x

I did it!

I got through today, but it really hasn't been easy and I ended up nebbing every 2 hours, not unusual, but luckily I didn't go acute enough to need hospital treatment, not just yet anyway. I think the time has come to make a visit to my lovely GP, Dr P, and see what he says about all this.

Love ya all and thanks for reading x

Hanging on by a thread.

Today, my asthma just isn't going to play ball today. At all and whatsoever. Which leads me to think that another admission could well be on the cards, not a positive thought, but at least it's realistic. I don't mind being in hospital when I need to be, I mean you meet some interesting new people and at least I'll be given something to make me feel better. And at the moment, ANYTHING is better than this.

 It started with my usual barking cough, then on Friday, it started developing a little bit of a rattle, and I was getting tired more easily than usual. I was also getting this sort of ripping pain whenever I took the smallest breath in. So me being me, I took some painkillers rested and hoped that that would be the worst of it, go to sleep and wake up feeling better. I was wrong, yesterday, it was worse, I was wheezy, nebbing every 4 hours and generally feeling terrible so I upped my pred to 20mg. That did help, but today, I just don't seem to be able to get hold of it. So my plan is, keep going as is, and if it gets worse, which for some reason I can see happening all too well, do the 9's and get abducted by the wonderful people of the West Midlands Ambulance Service.

I have a lot of respect for the people who work tirelessly for all the Ambulance Services across the UK. They really do work long hours saving the lives of people who need them, and it makes me angry when you hear about hoax calls or people calling them just because they're the easiest medical service to access. I wonder if they understand that the ambulance that could attend them could be attending a scene in which someone's life could really be in danger.

That's my rant over for now at least. Hopefully after this Ventolin/Atrovent- Ventolin only session, I'll feel better, if not then I will keep you all posted.

Look after yourselves this Halloween!

Love ya muchly

Wendy x