Consultant's Appointment...

Today was my much needed consultation with my specialist in Heartlands Hospital, Birmingham. It was interesting and I was told off for doubting my asthma's existence as usual. I guess a part of me always wanted to believe it was all in my head, no matter how many times I saw my CT scan. I never quite connected with it being the truth somehow. But now with another person in the loop, it was somehow easier to believe it and I now know myself that what I have in my airways is definitely there and the inflammation is definitely present. No matter how much I try and convince myself otherwise.

Now the question is how much of my problems are actually being caused by my asthma? Well we aim to get to the bottom of this by an elective admission. This means 5 days of being in the hospital and poked, prodded and a number of diagnostic tests performed on me. This will definitely include a Methachloine Challenge test, to check the twitchiness of my airways. This is needed to be done as an inpatient as I will be off a number of my medicines and I could become very sick, very quickly and the doctors want to see what happens to me when my asthma goes off.

Another test that they want to do is a nasoendoscopy. Which will involve a camera being shoved up my nose to have a look at my nasal cavities and my voice box to make sure they're OK, as well as the possibility of a bronchoscopy. A camera inserted in to my airways directly to have a look at them and the state they are in. This could be a gruelling 5 days, but Tom has reassured me that nothing bad will happen and I will be fine for this. I already have a gut feeling that my airways are going to really show their true colours during the admission and I will probably have to endure some rather nasty symptoms, but after the last 2 years or so, I think I can withstand that. What is a few days of being sick in hospital if they could result in a much more stable quality of life.

My Lung Function was lower than normal today and I think I know what that was caused by, I think that was a result of having an infection recently and my body reacting and trying very hard to recover from that. That is OK though. I know myself that these things happen and sometimes I will not be at my best. That is OK with me.

I guess now I have to wait for the hospital to call me and tell me that they want to admit me. My biggest worry is how my poor little animals are going to cope without me, but Tom will make sure that they get fed, watered and cuddled so it is all OK.

Loves
Wendy xx

10 Reasons Why Asthma Sucks...

OK I have been meaning to post something a bit less about my personal politics and actually really have a talk about what my asthma really means to me, how it limits my life and if I could change anything, I would not have it at all, like so many of us. So here it is, an asthma rant which some of you may agree with, some of you will be wondering why it has never been said outside of forums and maybe some of you may be facinated with the life that 2.6 million people in the UK have to put with when it comes to being a brittle asthmatic.

Before I start however, I would like to note that Brittle Asthma is something that is usually diagnosed by a trained doctor who specialises in Asthma and Respiratory Disease and not by a standard General Practitioner. Unlike other asthma, this sub-type is very unheard of and the general public have never had to know what BA actually is and what it means to those of us who are unlucky enough to suffer with it. My diagnosis came from 2 consultants, Dr Vathenen (Respiratory) and Dr Mansur (Clinical Lead of SBAU, Heartlands, Birmingham) repectively.

So, here we go, 10 Reasons Why Asthma Sucks:

1. You have to use your medicine in public.

I hate this because people always stop and stare and I hate that. I hate the fact that kids will look at you funny and people even come up and ask you to refrain from smoking!!

2. Limitations...

Being me, there is one thing in life that I cannot stand and that is limits imposed upon me by persons or in this case an illness which makes me feel so poorly at times. There are days when I can't even get up, walk to the loo and then go back to bed without having to prepare and know there is a nebuliser waiting for me, and by the time I get there, I guess I am so in need of it that the fact I feel so contained some days that it is hard to smile and feel cheerful.

3. It can be hard to make yourself heard.

Sometimes it is a struggle to make people understand what it is I am trying to say or even my instincts being ignored. Asthma management is sketchy all over the country and it can be a gamble especially in an emergency, in some cases, my life has been put at risk by nurses or paramedics who have not looked after me properly, only to have my ass saved by the doctor just at the right time.

4. Having to go equipped:

Going out for me sometimes is like planning a military operation. I have to be careful and make sure I carry enough drugs (often enough to feel like I am carrying a small chemist), a nebuliser and batteries if needed, inhalers, spaces, peak-flow meter and if these are forgotten, it is so important that they are gone and retrieved.

5. Hospital Appointments...

I hate being poked and prodded by the best of times, but when I have to go to a Doctor's Appointment or a Hospital Appointment, I am usually tetchy as anything. I hate being examined as it feels like I am being used as a guinea pig or something, that or a lab-rat on a wheel. Then there is the physical exam which, when it is a doctor I barely know, I feel like it is an invasion of my privacy and dignity.

6. Drugs and Side Effects:

I have touched on my medicines before and how I have to carry a lot. But it does get me a lit down when I see my repeat prescription and all 16 items on there. Knowing that about 12 of them are for my asthma and hayfever alone makes me feel a bit worse because it is a bit depressing that at 23, my prescription is 3 pages long and takes about 40 mins to be dispensed at the local chemist! Then there is the side effects, because of uneven amounts of prednisolone, my bones are weakened and break easy as well as my immune system compromised. Not to mention the really horrible way that it makes me all puffy and bloated at continued high doses! Then the bronchodiolator drugs which help my breathing, cause all kinds of weird cramps. It can be a pain in the backside at times to work out what is caused by what!

7. Hospital Admissions and A&E visits:

Because I have type 1 brittle asthma and I am bad, pretty much all the time, I can never quite tell when an admission can happen, all I know is one minute, I can be a bit off, but coping OK with it and using my home drugs and then as soon as you can say "asthma attack" then I am pretty much fighting for my breath! I have had several really bad ones in the past where I have been in such a bad way that how I came out of them without any repercussions baffles myself and the medical staff. So when these happen, it is like my life gets rattled about a tiny bit... It can be frustrating to say the least.


8. Hayfever.

Not something that effects everyone, but I get hayfever and it is a pain in the arse because suddenly, my asthma becomes even more twitchy and easy to set off. I had a particularly bad time with it recently and my body erupted in hives and I ended up with an infection again!

9. "I thought Asthma just meant a blue inhaler"

Lack of understanding is such a major problem when it comes to asthma, especially those of us who have to use more extreme ends of the scale just for quality of life. People who don't understand asthma or BA tend to think that if it is not cured with a puff or 2, then it is not real. This is a big problem. People should really learn more about BA before they decide to make snap judgements like that, because unless you are going through it, how on earth can you begin to understand my world? Unless of course you have the decency to ask me and listen to what I am saying.

10. Sleepless nights:

With my asthma, I have nights where it is so bad and I am so unwell with it that I wind up having sleepless nights and nights of pain and frustration as I can't sleep. But I want to. But I can't so that circular argument starts, or I have nights where I am nebbing every hour or so. It can be horrible because I just want to sleep most of the time!

So there we are, a look in to the side of my asthma which to be honest isn't all sunshine and rainbows, but I guess I needed to vent a little and say something about how I have been affected by this and how it makes me feel or I would be lost within myself and I would never feel like I could speak freely about anything. There are days where yes I do feel like I could cry and want to scream and punch things just to let it out, but all that ends up in is a shattered Wendy with several broken bones and lungs which are closing up and painful.

Loves
Wendy xx

Watching The World...

I am feeling better today, but I have taken to just watching outside my windows, seeing what people around me are doing and how many people walk past my flat. It is interesting, considering that this was a habit born from a kind of fear, that someone I would rather not see again is watching my home or trying to break in. I would be lying if I hadn't been jumping at every sound for the first couple days on my own, but not now, I lock my door now and I know no-one can come and harm me. It has taken me a while but I really do feel comfortable and safe in my own home.

Sounds kind of silly now when I look back at how jumpy I was at first, almost to the point of near paranoia, but I developed a habit of watching the people around me, wondering where they go, what they do in the day. I have also been venturing out at least once every day, it was scary at first and I worried about what people would say about me, but my confidence has soared recently. This is a positive step as I am finally getting over a lot of fears of the outside world, open spaces and being bullied by the one closest to me.

But now, I just like to sit and just watch.  My world is blooming and becoming more interesting and I am loving it because I can feel free and safe. I have been confident again to take photos of my world and using my DSi, I have been able to share them.

I will upload soon, it is obvious to everyone around me that over the last few weeks, I have really come back to life.

Loves
Wendy xx

Result from Doctor...

Well, I went to see Dr Pike about all of this, expecting a new ointment for my rash and probably being told to get plenty of rest. Not a load more pills to make my body stop screwing me over! Turns out the problems I was having with my chest, my rash and other rather unusual symptoms as of late were all caused by a combination of Stress, Hayfever and a rather odd chest infection. My immune system seems very poor when it comes to infection, but apt for attacking my own body. It seems silly at times.

I have been started again on antibiotics again, for the umpteenth time this year, must be in the double figures by now! As well as some new antihistamines as I have been having a severe allergic reaction to something (more than likely the pollen in the air). The result was hives all over my hands, and then something I ate then resulted in me vomiting like mad. It was that or more of my allergic reaction. All because of my hayfever and high stress levels. I won't let the person who is making me feel this stressed bother me anymore. I can now go through my life embracing all the gifts and pleasures that I have in my life. A loving boyfriend who allows me to be myself and lets me have my independence, my money worries are way behind me now and I can look forward to a life of comfortable freedom.

No more struggling to make ends meet. No more worries that I may have to sell the things I own so that I can eat for another day. No more feeling incredibly guilty for having my painkillers because of someone else's dependance on them. Yes there were positives in that relationship and I do look back on the evenings where we would laugh for hours because of how silly a word sounded, but I have accepted that those golden moments are not enough to repair what went wrong. I have learned a lot of lessons over the last few weeks and the biggest one is to not be afraid of anyone or anything. Living in fear is not a life at all.

Even my GP saw a marked difference in my confidence and the fact that I was losing the steroid/ anti psychotic weight and the confidence in me was blossoming. He commended me for coping and keeping on with life. Glad that I was coping well with lung disease and a crooked back as well as I have been. I live alone and I think that right now that works well for me. I am learning to look after myself and its funny, now I am back on my own, I am back on track with all of my bills and monthly outgoings, even using a book to track my incomes and expenditures again, much like I used to back when I lived at Room 7.

I loved Room 7, it was like my own private sanctuary. I could lock the door and it was so quiet and relaxing. On days like today, I would happily lay on my bed and listen to the rain falling softly on the roof above my head. The world would melt calmly away and I would sleep for hours afterwards. I miss my place of peace, but as it lacked heating it would not have been completely viable for me to stay there, not with my lung problems. I guess here is now a place where I can feel safe and enjoy many pleasured moments with Tom and my lovely animals. Jenova will pop soon, shes getting very big now, before I was scared that the babies would be too much to cope with, but now I am really looking forward to them!!

Loves
Wendy xx

Face Each Day...

Just lately, I have been so much brighter and happier as a person. I mean I have finally managed to sort my own life out and it's so weird, I feel like I am 23 and not a pensioner. Even if I am feeling a bit crap today and have to see the doctor at 3. I would be lying if I said I was in a good, can be bothered, sort of place, but I know that the problems I need to see him about are things that really won't go away in a hurry on their own and it would be foolish of me to not get things seen to.

Its all the usual suspects really, hacking cough, cold sweats and coughing up gunk that seems to match the colour of an X-box game box perfectly. Add in a rash on my hands that is driving me up the wall and a sore back which makes walking a painful prospect. My peak flow was below 200 l/min and my body feels just drained and tired which would suggest to me that the stress of everything that happened recently could have run me down and infection, as it always seems to, has set in.

As always however, I am refusing to let the person, who has caused all of the stress and the rest of it, win and get me down. I refuse to let them hurt me or get to me anymore and they should never have gotten to me in the first place. I'm better than that. Maybe I am just over thinking the whole thing and thats how he is getting to me.

I guess today is one of those days where I need to really kick myself in to gear and stop worrying. I know the doctor will be glad to catch up with me and make sure everything is OK. My worry about the pred thing is probably unfounded and he will probably help me with it. I mean it has been a time of major stress and I have suffered as a result. My peak flow is frankly crap and I have been hitting the nebuliser more than I would care to admit to myself and this rash on my hand is maddening. I woke up at 5 this morning because it was itching and sore. Then proceeded to cough and wheeze for a while, so I think this is a good time to get help.

I'll probably post again when I know more and my heads a little less... well... muddled.

Loves
Wendy xx

Forms...

I hate them. With the sort of passion that most people would assossiate with someone that would, well not like to kill, but would rather they didn't live anymore. I think its been annoying considering that most of my time since my disability really became a major factor in my life has been spent filling out this form, that form and some other random form, another interview and assessment, it was really crazy at times, but to be honest, I am getting there with it all now.

Since my DLA was awarded (as well as a handsome Adult Care Grant of £70 per week for my care needs) and the possibility of another £30 from the Severe Disablement Allowance people, I have finally been able to secure my financial security and get myself back on track, as well as allowing myself the ability to pay for help when I need it which means that I can now live without worry or the threat of having the metaphorical rug pulled from under me. This has made me feel so much better about things.

Now I have said it before and will probably say it again and again, but I really do owe a lot to the PDSS, in particular my support worker Lee who has helped me dig through the minefield of DLA, adult care and Lifeline. Before I felt as though I was in a hole which constantly seemed to get deeper and more daunting. I was in such a bad place and I became so unhappy. I became so deeply depressed that I was considering ending my life. I am happy to say that now I don't feel that bad and I can see the light at the end of the tunnel, not the freight train about to flatten me. I was constantly sick, I was deprived sleep and I was caring for someone who often said he didn't want it, but he would be horrid if I didn't. I really have come a long way from that and I really do hope that I continue to grow and become a better person as a result.

As horrid as the past has been at times, I still believe that it has given me at least that time to grow in myself and see less of the negative side of life. Even if it does mean that I have to fill in the odd form for my bus pass or disabled person's railcard. I guess at the end of the day, I am finally getting what I needed so that I can continue to make big steps and get further in life.

I was told that people looked down at me or judged me for getting the flat and what benefits that were paid in my name after Steve left the flat. But at the end of the day, what people need to remember (other than getting BOTH sides of the story before making a judgement in the first place) is that those benefits were paid to ME and the fact he had nothing when we left was that he was entitled to NOTHING as he OWED me a lot of money from various things and we had AGREED this with a witness present before any action was taken. Although I know that no one really made any judgements and this was a guilt trip, I know that if you really knew me and the situation, you would have known the reality would have been more informed in your judgements, but frankly if you still want to believe that I usurped or used that person then be my guest, you do not matter to me and you are probably blinded by your own arrogance.

Make your judgements if you will, I will never let you get to me.

Loves
Wendy xx

Fed Up Of Drama...

After this weekend, I can honestly HONESTLY say that there has been enough drama in my life to fuel a bad soap opera and a half. I am really past it now and think it is high time we all moved on and cut the cord to the past. The past is just that and I intend to make it my personal mission to keep it very much that way. No more hate or scornful behavior. If I don't like someone, then I don't have to talk to them or even acknowledge their existance. That is that really. No more nasty comments, snipes or any such behavior, I have a lot better things to focus on and to be honest, people who have nothing better to do than cause conflict really don't interest me. At all.


I am finally happy that I won my battle with Disability Living Allowance and I received a princely backpayment, which I spent on (as well as a load of treats for me, a reward for keeping on when things really were hard) numerous bills (mainly paying over counters and cash), Tom's birthday present and looking after the people who looked after me over the last month. I have a lot to thank my friends and extended "Family" for. Their support during all of this has been so gratefully received.


It was a battle that I had been fighting for about 6 months to a year. This battle was with the Department for Work and Pensions or DWP for short. The Disability Living Allowance system is notorious for its difficulty and the form itself is a minefield to wade through. If done properly (like mine was on my 3rd attempt) it can take up to 3 hours to complete. You have to really detail the specifics of your condition, even the things that normally you would make light of or try and see the funny side.

My appointment with DIAL (North Worcestershire) was the most draining experience I have had in my life. 3 Hours of talking to a stranger about what my illness is like and what I have to do to be able to cope and it is absolutely staggering. I left the appointment subdued and almost in tears because it was that hard going. Things which I hadn't given a second thought were now things that I had been considering more and more as time went on.


It is good that the people I care about and know me well do not look down on me or my situation harshly, in particular on the issue on me getting the flat when the relationship ended. Anyone who does judge me either doesn't matter or were not true friends so they do not matter to me, I do not need people who make those kind of judgements without knowing the full story really aren't worth my time. The people who looked out for me and supported me throughout this are wonderful and I could never ask for better friends, nor a better and more wonderful man in my life.


Tom is so caring and kind, so different to what I am used to. He makes me feel confident and self assured. I smile and laugh so much more now and I feel more alive than I have in a long time. I have had the confidence to try an old look I used to have back in my teens (complete with a pageboy fringe (Thank you mother) ) I have had my hair re-dyed and braided so it looks awesome.


Loves
Wendy