Another day... another round...

When you live with a chronic health problem, your life really does get turned upside down. I mean, your average 23 year old doesn't have to deal with taking lots of pills, inhalers or nebulisers really. I know I am by no means the worst out there, in fact far from it, but there are days when I feel a bit down about all the drugs I use in one day, and not by my own choice.

This morning, I woke up at about 10, I know that is a bit on the late side, but these last few days, I think I may have a chest infection as I am coughing up green muck and am generally not feeling well at all, so it could just be a URTI rather than an LRTI. But this could be wishful thinking.

I'm sorry this is just a short post, but I really am not feeling up to that much at the moment and will probably go back to sleep in a while, until I meet JP at Spoons a bit later.

Loves
Wendy x

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

Productive days are the best days...

With my lungs trying to play their tricks on me again and the fact that I was running around like a headless chicken the last few days, I finally got around to doing some work for a change. I managed to mostly finish a project I was given just before Christmas by John from LABAS! Again, I can't really say a lot here and now, but I hope they like what I came up with for them. So there we go, another project a lot more complete and a few others that have yet to be started and even more UFP's (Un - Finished Projects) to go.

Where has the time gone, I wonder? Well theres been there madness of Christmas (which I gave myself off) and New Year. The fact that I rediscovered some old games that I used to play and they always made me laugh. Particularly the game "Abe's Odyssey". I used to play this as a kid and it was a kind of puzzler game where you had to work around puzzles and rescue the Mudoken's from becoming entree's. Its a logic game, but it is just insane, but I love it. Lets face it, anything that has me asking "hmm what does this lever do..." and as I pull the lever and something drops, I answered "ah, thats what...". How can that be a bad thing?

Tomorrow is shopping and other domestic tasks, paying bills and generally organizing the general stuff that needs doing, schedule a doctor's appointment for more meds and stuff like that. By the end of next week, I should have it all sorted. Although knowing the way it works sometimes, a spanner is never that far away from the works is it?

Loves
Wendy x

Off to a good Start...

Well 2011 has begun and it has started with a bang. Well, on New Years Day, I woke up and helped a very amazing friend move in to his new home, yesterday, I went out with JP and his friend Sean, our other guitarist John and drummer Dave and had our first rehearsal as a band. It was amazing to just to cut loose and sing, scream and generally express myself on a microphone that way to music. It's been years since I had done it and was starting to feel repressed and a little isolated. I practiced so hard and went for it and was so tired afterward that I spent my time trying to go back to sleep.

Today has been productive as we spent most of it cleaning the flat ready for the year ahead. Every 6 months or so, we like to clean EVERYTHING and make sure everything is done and clean. During a major clean out, we will go behind the bookcase, guinea - pigs and other things, wipe the skirting boards and all the rest of it. Its not the most pleasurable of pursuits for a day, BUT it is worthwhile as it keeps the dust mite population down and stops any nasty smells or germs coming in and making our lives more difficult.

I have been letting my creative side slip a little on the print work, but I WILL get back in to that asap. its just been so all over the place these last few days that I just need a little time to recharge my batteries slightly. I did make strides towards that by getting plenty of rest and sleep. My lungs are taking an exception to a lot of this lately and its a little more painful at the moment than I would like to admit. I have a beast of a cough and its got its usual fruity wheeze to it so it could be that I have something on the brew. It wouldn't surprise me if theres something going on, I had a temp this morning and last night and was shivering like mad so it could be some kind of infection of sorts.

Loves
Wendy x

Happy New Year...

As 2010 draws to a close, I am ready and willing to face the new year with eyes wide open and ready to accept and conquer the new challenges that lie ahead of me me, with grace, humor and, of course, courage to speak up when things aren't so good and ask for help. I am not going to set unattainable goals for myself, as doing so will only encourage me to become melancholy when I fall flat on my face.

Before I get in to all that, I thought it would be a good time to reflect on this year. The good, the bad, the wins and of course the losses which made the victories seem even sweeter. Well, I started this year with the mother of all infections and was in such a state that I was tired and in hospital. I couldn't breathe well at all and felt as though there was no hope in sight as we started the quest to get me on home nebulisers. We got the referral to Birmingham Chest Clinic by a group of us, Steve, Nathaniel, Bean and myself. We all went to see Dr Pike and after a good long talk about how I was, and the quality of life I had at that moment, we went to get a specialist view.

I struggled on, through college shoots (passing out on one and falling asleep at a table on another, poor Sean had to poke me a few times because I was so tired) and plenty of other things. I think the most memorable and the one where I really summoned what was left of my strength was the Worcester Uni shoot. We had a hospital scene (of all things) and I really came in to my own by helping dress everything for authenticity. We had dummy drip lines. Who better to apply them than the one member of the team with the bleary eyes, all the pills and inhalers in their backpack and multiple healing sites where drips had been atatched and ABG's had been taken less than 24 hours before. I felt good for all the help I gave the team. OK having attacks around them, that was something else entirely.

So we crawled in to March. All the Pred and Olanzapine (an Antipsychotic I used to take for Bi-Polar) had bloated me to the point where I looked like I had been inflated with a bike pump! I was ashamed of myself and began to hide away, but I had an appointment to go to. I felt like a rabbit in the headlights. My palms were sweaty, I was trembling and scared. Little did I know, but my life was about to change so much. After a long chat with a young registrar by the name of Dr Snelson, during which she comforted me as I told her how miserable I was, how often I was so poorly I couldn't function and how I needed just to get well, she started my home nebulisers and said it was astonishing that I wasn't using them already. All I needed now, was to get a pump and nebules from my GP.

I got my nebules from Dr Pike and he was glad that we were moving forward. I think it always made Dr Pike quite sad to watch me go from a pretty healthy and active 18-19 year old, to 22, scared and struggling to breathe or do simple things. He prescribed them and gave me very strict instructions, about use, pred and other things. We finally felt as though we were getting somewhere, now all I needed was a nebuliser compressor. And my dear friend Penny helped me there. She gave me a Freeway Freedom home nebuliser unit. It has been my companion ever since that day and have even been on stage with it at my side.

I think everything went well from there, I followed Rachy on her transplant journey, shedding tears whenever things went awry, smiling at her progress. She really is inspirational and wonderful and to see her doing as well as she is makes me feel so proud to be acquainted with such a sweet and gentle soul. As for me, well I started rebuilding myself and joined Omen Shadow. We worked together and I really enjoyed myself, I was looking forward to our first gig, but just 2 weeks away from it, I had an accident.

It was May 10th. A wonderfully warm and sunny day. I had an appointment in Birmingham for a CT Scan of my chest (that in itself will be another story) so I went to the unfamiliar place of Adderley Park. I got off my train, asked some directions and got walking. It was a 2 mile walk I later found out. I was about halfway there and I tripped on a paving stone, my left foot rolled in under me and I heard a slight pop. I stopped as this lady asked if I was OK, I smiled and said I would be fine. I was convinced it would just be muscular and would ease as I walked on it. Shock can be a funny thing, but this is either a testament to my bullheadedness, or just my stupidity at times, or even a bit of both. I hobbled the final mile.

By the time I got to my appointment, got changed in to their gown and put my clothes and shoes in to the bag, I was nearly in tears. I did my scan and was frogmarched by a nurse to A & E. I sat for a while waiting and talking to these two lovely girls, one of which was amused by my stories about the things I got up to. Turns out I have a lot of funny stories and anecdotes, often at the mercy of doctors and they can be very entertaining. Eventually, I was called through, sent for an X-Ray and given a pair of crutches to help me walk. We didn't think it was broken.

OK, we were wrong, turned out I had a spiral fracture of my 5th metatarsal. I was put in plaster and Steve and Martin came and helped me home. We laughed all the way and I went on stage at Kingsley Battle of the Bands and at the Queens Head a few weeks later with an Air Cast and crutches, playing while sat on a stool. I felt like a right plonker, but I played and went for it.

Now, here comes the EVEN funnier story. I was out of my Air Cast (after 8 weeks of it) for about 1 or 2 weeks, I can never remember which, and me being me I did something. Like my brother and mother, I have a bit of a temper on me. It takes a while, but I can be vicious when I get going but there we go. I was in a mood about something (I think Steve was irritating me by sulking about something or other, its THAT important I don't remember it) and I had been on this training course thing with the Job Centre, that was a bust so less said there the better, and was in a really foul mood. So after all of it, what did I do? Vent like a normal person? Scream or lash out at what was annoying me? Punch a pillow? No, those would have been sensible. I looked at the door, backed down for a second... then I launched my fist as hard as I could, denting the door. Breaking the 5th metacarpal on my right hand. 6 weeks in plaster later and that healed and I could play bass again.

What of my chest by this point? Well... it did what it does best, create and land me in hospital. OK it wasn't as often as last year, but the times I was in, I was staying and needed help. It was a frustrating and irritating summer really. Although I met Dr Mansur, my consultant, who started me on a couple of new medications, and other things which helped me get at least a little more comfortable. Kind of.

On the plus, my time spent not really doing anything has put me in touch with someone called JP who I have joined with in a band. This will be fun and we are having our first practice next week so this will be fun.

So, my aims for 2011?

• Get out of the YMCA.
• Finish my HND
• Less hospital visits
• Do something nice for myself at least once a day.
• Tone up and look good again.
• SMILE more.

Simples.

Loves
Wendy xx

Struggling somewhat...

After last night's attacks and other problems, I have found myself struggling quite a bit today, and catching my breath seems to be a bit of an issue. But if I am honest, this is the usual effect of a chest infection, something that even though it is not a pleasant concept, it seems to be something I contracted as a result of going to a certain house. It did get me thinking, and then I made a decision and picked up the telephone and called Redditch Social Services, I think after all of this, it has gone on for WAY too long and there is no good to come of any of this anymore.

As for me, well, I am just dealing the only way I know how. Just doing it and doing what I can to eliminate the symptoms as they arise and keep an eye on things if they get more hairy, but I am hoping that it doesn't come to that, not after last time and Steve's reactions to it. OK this was before the Sertraline was started, so maybe if I have to, I will have to just bite the bullet and get help when I need it. Although I pray for it not to come to that again.

As for the noise problem here, well thats as bad as ever. The people above us are horrendously noisy and the guy next to us thinks we're the ones doing it, so he blasts his music as payback, problem it isn't us, I keep it very quiet as I don't like loud music unless I am out at a gig. It is like living below one nightclub and next to another and its not a pleasurable thing. I wouldn't mind as much if it wasn't all Dub-Step which is just a headache in the making. Nothing makes me more grumpy than people being inconsiderate. By nature I am not a grumpy person, but when I am denied the minimal of peace, quiet and a chance to recuperate I do get a little annoyed as I know and understand all too well the consequences of this and its not fun.

In myself, I feel better as I am not being sick constantly now, so at least there is a positive there, and I am a little less achy, I guess what is annoying me the most is the strange gunk I am shifting off my chest as it is a lovely reddish brown colour and tastes a little odd, but I could have torn something from the vomiting and coughing of the last few days, so it is just a case of watch this space and hope for the best really.

Loves
Wendy xx

After Christmas...

I return and hope you all had a nice Christmas and soon I hope you all have a happy new year to match. My Christmas has been an eventful one to say the least, but thanks to Steve, it was at least fun.

It all started on Christmas Eve when I was preparing the veggies for dinner. I was peeling spuds, carrots and sprouts. Everything had been so quiet until I got stuck in to my sprouts and I could hear a familiar squeaking and purring. I walked over to the guinea pig cage, only to be met by the loudest WHEEEEEK! from Patch. By this point the little nutter was climbing the cage and wheeking loudly at me until I checked online whether it would be OK to give them a sprout or two. So the piggies have been spoiled with a few sprouts and they have been very happy about this.

The next morning we woke, had breakfast and our Christmas morning together and it was just as Christmas morning should be, quiet and spent in the company of someone who means the world to me. We cooked lunch together and I set to my surprise for Steve, the complete Sims 2 and my own upgrades, needless to say he was happy about this.

Then was the trip to see his dad. I would be lying if I said I found this a highlight of my day, but as he is a member of Steve's family and family is important, I bared it. Big mistake. First there was the dust, which set me nebbing within minutes. Is it really that much of an effort to dust?! Then there was the toilet which was frankly shameful. I won't go in to that, as it is not a pleasant thing. Then there was the cup of tea, in a filthy and cross-contaminated cup, the result of which was I spent all day yesterday vomiting so violently that I couldn't even keep water down for a long time. It was really not fun, we wound up calling NHS direct for advice as we were getting worried when I sip of water turned me in to a fountain. It cleared in the end, leaving me just a little tired and drained today.

Today was better, JP came round for a while and we played a game called Last Word. It involved cards with subjects and letters and you end up having to find words that start with the selected letter. Mad, but absolutely hilarious! My asthma was being its usual grumpy self, so I was a bit subdued really, but have been amusing myself with the antics of some l'Cie (FFXIII) and a bit of Dissidia.

Loves
Wendy xx