Wednesday 29 December 2010

Disappointment

This morning I received a letter from my respiratory consultant saying that there has been no significant improvements whilst on the trial of Omalizumab, therefore there is no point continuing with it. I'm surprised at how disappointed I felt reading that letter. I mean, I was expecting this to be the outcome as the improvements have been very small and maybe not even there, maybe I was just seeing improvements because I so desperately wanted them. I was really suffering with side effects, mainly joint pain, and I had suspected that the side effects were outweighing any benefits.
I still clung onto that tiny bit of hope that this would be my 'miracle cure', I knew deep down that it wasn't but until someone else told me otherwise then that thought remained. Now, someone else has told me.
I'm due to see my consultant in a few weeks so I guess we'll discuss it properly then.

Christmas is my favourite time of year, but this year I can't shake a sadness. I've noticed my old depressive thought patterns re-emerging. I don't know.... I hope I'm just thinking too much. I can't find the words to write anymore on that, meh.

I hope everyone has had a lovely Christmas, and I wish you all a happy, healthy and peaceful 2011 :)

Saturday 11 December 2010

Mixed feelings

Christmas is my favourite time of year :D This week I've been to a few christmas markets around the country, the atmosphere at these places has been amazing. I'm off to London next week, I can't wait to visit the Winter Wonderland and Harrods Christmas department, and no doubt relieve my bank account of some pennies!!

I've really been suffering with joint pain recently, caused by the Omalizumab injections. The knee pain has gotten so bad that when I kneel down, I need to hold on to something to help me stand up. Also, the longer I walk around, the stiffer and more painful my knees and lower back get :( There are other side effects too (mouth ulcers, finger and toe joint pain, headaches, indigestion) but I can ignore those as they seem to ease off, the knee and back pain is persistant and seems to be getting worse.
I had an injection a few days ago where I mentioned this to my respiratory nurse. She thinks that the side effects are outweighing the very small improvement in my asthma, and wants to talk to my consultant before I'm due my next dose. I'm due to see my consultant in the new year anyway, a few months back he told me that he'd taken some of his patients off Omalizumab as their side effects weren't worth the negligable improvement in their asthma, sooooo it looks like Omalizumab isn't going to be my miracle cure :(
On one hand I don't really want to take a medication that is causing me so much pain without any noticable improvement in my lungs, on the other hand I had high hopes that this medication would help me - help both my asthma and my fight to return to nursing, so this is all rather disheartening.

Saturday 27 November 2010

Quiet

I've been feeling a bit down recently hence my lack of posts, I don't want to turn this blog into a place where I only moan and whinge.

In a nutshell; stupid lungs still aren't happy. My joints are incredibly painful, worse in my back and knees (thanks Omalizumab). I'm still not back at work, my manager is giving me vague answers when I ask what is going on, last week I saw my job advertised. Blah blah blah.

******

Christmas is coming, yay! I've finished making my christmas cards and finished my christmas shopping. Every year I do my christmas shopping in November and this year I vowed to wait until December so I could enjoy the atmosphere to present shopping near Christmas. However, it would appear that I just can't help myself, I love buying Christmas presents, and I suppose if I'm honest, I hate hugely crowded shops in December time!
Christmas tree has gone up! I know some people think it's stupidly early but Christmas is my favourite time of year, maybe it's a family thing as my parents and cousin have also put their trees up today :-) I also use the 'excuse' that tomorrow is the first Sunday of Advent.
I'm very much looking forward to visiting various christmas markets over the next few weeks :-D

I'm so incredibly jealous of all the people who've had snow! I remember when I used to live in Birmingham we got so much more snow than I see living down here in the South West, also the snow is never as deep down here. Snow is very pretty to look at but I hate it when it turns to mush and ice, and driving in it is horrendous. It's certainly been cold enough for snow though, I cleverly didn't take a scarf out with me earlier, my stupid lungs aren't a fan of bitterly cold weather!

Thursday 11 November 2010

Strange.....

I have something strange going on, it's slightly concerning and I'm not entirely sure what to do about it.

I have my own pulse oximeter (measures pulse and oxygen saturations) at home. I used to know someone who 'acquired' certain things during her hospital stays, when she 'aquired' herself a new pulse oximeter she gave me her old one. The main reason I use it is to assure myself that it's not "all in my head" (which is an entirely different blog post to write another day!), that when I'm feeling exhausted and breathless and my oxygen saturations are x%, the way I feel is justified! I also use it as a guide as to when to call an ambulance. Well, that is the theory, I've got an awful habit of watching the numbers drop and waiting for them to go back up, then when they go back up I know I'll be okay in a few hours so I don't bother going to hospital.

Anyway, back to the point, night times have once again become a big problem for my lungs. I wake up numerous times feeling wheezy, tight chested, awful headache, very breathless. About a week ago I popped the pulse oximeter on during one of these nightly wakenings to find my oxygen saturations were 86%. Since then, every night they've slowly go lower, last night my sats were 80% at one point! During the day the pulse oximeter measures my sats to be (most of the time) > 95%. Today I was in the hospital and I checked my pulse oximeter reading against the hospitals reading, which confirmed that my probe is working fine. I also manually check my pulse during the night to see whether that correlates with the reading, which is does. Therefore, I am completely satisfied that my pulse oximeter is working correctly. I reposition the probe on different fingers, swap hands, make sure my fingers are warm and the result is the same.
Even though when I wake up I don't feel great (asthma), I don't feel AS bad as I should to have such low sats.
The obvious 'diagnosis' would be sleep apnea but I'm awake whilst my sats are that low. The pattern has been - I wake up having a huge coughing fit, get in control of my breathing, use my inhaler (I'm not allowed a home neb) and put the probe on. Eventually my sats will start to improve, but the highest I've seen them during the night is 88%.

I have no idea what to do about this. I could speak to my respiratory team but it sounds too weird, I'm concerned they're not going to believe me, but at the same time I'm fully aware that this isn't good....

Thursday 4 November 2010

It's been a while

I've felt that I haven't had anything worthwhile to write for while hence the lack of posts last month. Time for an update!

I've started training with The Samaritans. The selection process was much harder than I imagined and I was genuinely surprised to get the phone call telling me that I was accepted. Now I have weekly training sessions until December. I've had 3 sessions so far, they're quite heavy and intense but I suppose that is to be expected when you consider the types of calls that The Samaritans receive. I'm not a fan of speaking up in groups so that doesn't exactly make for a fun 3 hour training session anyway! It's all good though, I'm looking forward to completing the training and moving onto the next stage :-)

My Xolair trial is going.... well.... I have very mixed feelings! I've had 3 doses but only 2 are being counted as there was such a gap between injections number 1 and 2. I'm noticing side effects that aren't pleasant. The worst is ulcers on my tonsils for about a week after the injection, I'm sure you can imagine how painful that is! I've had daily cold-like symptoms for about 6 weeks now which is making me feel horrible. The joint pain is variable, some days even the joints in my fingers hurt and other days I don't notice it at all. I've also noticed that when I get migraines, they don't respond to my migraine medication. The migraines themselves aren't new, I often get a migraine or two a month, but they used to respond really well to medication so they didn't used to have a big impact on my life. Now, they're lasting days and I'm having to spend long periods in bed. If you've ever had a migraine, I'm sure you'll appreciate that you try to lie down in the dark, in the quiet and stay still. Having a migraine and wheezing, sneezing, coughing etc is not fun!!
Buuuut, my asthma is defintely better than it was. It's not as brittle, I'm on much lower doses of Pred and it's been a while since my last hospital admission. Another buuuuuut, peak flows have taken a nose dive over the past 2 weeks and symptoms are on the increase. I should be having the next dose next week, watch this space.......

I'm still not back at work. The drama surrounding my nursing career is no further resolved. I've given up on that making any progress this year which makes me so sad, it took me 3 years of hard work to train and now I've been out of the profession for almost 3 years :-(
My 'temporary' admin job (temporary until the nursing situation is resolved) are ignoring my emails. I admit, I could be pushing the issue a lot harder than I have been, but I think it's their job to tell me that I'm allowed back (and have been since August) considering they're the ones who stopped me from working in the first place when I 'traumatised' my colleagues by having an life threatening asthma attack/collapse infront of them. I don't like the way they've treated me, I don't want to really go back there, so if they're willing to keep on paying me to stay home then I'm going to take advantage of it. Haha I know I'm going to have to bite the bullet at some point though and do something about the situation. I've fought long and hard to not have to give up working due to ill health, and these long periods where I'm not working over the past 3 years are not helping my fight!

Monday 27 September 2010

I have 2 arms!!!

The plaster cast came off today, yay!! I'm surprised at how swollen and painful my wrist is. I've got a good range of movement though, even the Dr in the fracture clinic was surprised at how good, so I'm hoping that'll make for a quick recovery - pain and swelling free!
I drove a little bit this evening which made me wrist quite painful initially when changing gears, and it was definitely more swollen afterwards, but I've got no plans to use public transport now I don't have to so I'm sure my wrist will adapt to driving again quickly!

I seem to have got the beginnings of the lovely cold that everyone seems to be moaning about. I've got a sore throat and looking very pale (which was commented on at the hospital this morning - it's one of my 'warning signs', I often go very pale before having a big asthma attack). Bloody great timing considering I'm trying to wean down the Pred right now! It hasn't really effected my chest so far, I have used my salbutamol slightly more than normal but nothing drastic, so I'm knocking back Vitamin C, Zinc and Echinnacea tablets in the hope I can get rid of it before it develops into something worse and makes breathing fun.

Saturday 25 September 2010

I want my arm back!!

I still have a plaster cast on my left arm and it's driving me mad! I have a review at the fracture clinic on Monday, I'm hoping it'll come off... I sat in my car to assess whether I could drive, I decided against it and playing around with the gear stick caused some pain. Over the past few days I've noticed pain occuring when it didn't earlier on in the week. I'm hoping that it's because the swelling has gone down rather than I'm going to need the cast on for longer.

I finally had my second dose of Omalizumab last week! So now I'm trying to decrease my steroids, yet again. I feel that I'm continually trying to reduce Pred. My aim isn't to come off them for once though, I'll go down to 10mg and see what happens, then maybe down to 5mg and stay there until I next see my consultant in a month (as per his recommendation). I start to notice not being on them once I drop below 20mg so that maybe too ambitious but we'll see what happens.

My life has been really boring with this cast on, more so than normal. Due to not being able to drive I haven't been able to get out and meet up with friends. Granted, they could have come to my flat or I could have met them during the day at the weekends (buses and trains don't get me home on weekday evenings) but clearly they had better things to do than go out of their way to meet up. Yeah, I'm feeling pretty bitter right now over the lack of good, supportive, reliable friends I have!

I had an assessment to assess whether I can return to being a nurse a few days ago. It wasn't much fun, and I'm waiting to hear when the second part of the assessment will be. Almost 3 years this has dragged on for, and I seriously cannot wait for it to be over and a decision is finally made! I had hoped it would be resolved this year, but I've said that every year, and now I've reluctantly come to accept that it's likely to be resolved next year, but I'm slowly getting there.

Another reason I can't wait for this cast to be off is so I can make a start on my Christmas cards! I went to a craft show yesterday and bought a few bits. I thought the show wasn't as good as previous years and I didn't spend anywhere near as much as I thought I would, so I have a small shopping list of things I need to get, then I can make some cards! :-) I LOVE christmas, the shops are already selling christmas chocolates and decorations. It's pretty early, but oh, I just realised - it's only 3 months away!

Wednesday 8 September 2010

Ahhh independence, how I miss you!

Hmmm it seems like so long ago since I last wrote here! To pick up from where I left off....

I had a respiratory outpatient appointment to assess whether I was well enough for the second dose of Omalizumab. I was, and was told to return the next day for the injection. All day I felt poorly, spent the night being sick and retching, which in turn made me feel wheezy and generally rubbish so I didn't end up having the Omalizumab :-(

After this, I decided that I needed to whack my Pred up to 60mg as I was off to Manchester to stay with a friend and didn't want to end up having an asthma attack up there! Pred took a few days to kick it but finally did. First night in Manchester I went ice skating, fell over and ended up spending a few hours in A&E to be told I'd suffered a broken Scaphoid (small bone in hand, very commonly broken during a fall), and had my first ever plaster cast!
Saw my favourite band whilst in Manchester - Muse!! I <3 Muse, they're absolutely amazing live.
Had a lovely time whilst in Manchester, but to be honest, I was very glad to get back home for a few reasons.

By the time I got home my poor hand was really starting to hurt, so the day after I took myself off to the local MIU to get it looked at and try to arrange an appointment at the fracture clinic. Turns out that not only did I break my scaphoid, I also chipped a bone in my wrist and broke my radius (big bone in wrist). The hospital in Manchester had put a full cast on which hadn't allowed for the wrist swelling hence the increasing pain!
Ughhhhh, I'm so over public transport already. I hate hate hate not being able to drive, struggling to do pretty much everything, not being as independent :-( Ah well, it could be worse. It was my left hand and I'm right handed....

Monday I had a phone call from my respiratory consultant's secretary asking me to go in and see him today. I went in fully expecting to be moaned at over the Omalizumab situation and be told that I couldn't have it again. I didn't get moaned at (lol) but I was told that the Omalizumab isn't going to work if I'm not 'well enough' to have the injections, which is perfectly understandable. So the plan is, I have the injection next week (if well enough!), then I think if we can't get into a routine with it then that will be the end of that :-(
I've never believed all the hype that it's a wonder drug so I'm not THAT upset, but I have been pinning quite a few hopes on this drug - that it would make even a small difference. The next step would be to try drugs like Methotrexate, and I'm really not keen on that idea.

My consultant is also going to arrange for me to have a DEXA scan in view of my poor wrist. I had one about 5 years ago which showed my bone density was below what it should be, and I was put on preventative medication to stop it from getting any worse. Hopefully I just landed badly and the pretty much continuous steroids haven't caused me any more problems :-(

And that is that. I'm pretty fed up in general but that's purely because of my wrist - I hate struggling to do simple things and not being able to just get in my car whenever I like. I live in a rural area, the only thing within walking distance is a farm shop and buses are less than hourly. Beats where I used to live where buses were weekly I guess!!!!!!!

Tuesday 24 August 2010

The good and the bad

So the good; I got back in contact with a few friends last week, people I've unintentionally lost contact with over the past however many months. It was really lovely to have a catch up, I'm so bad at keeping in contact with people. I don't mean to fall out of touch with people, it just happens, and then before I know it it's been months since we last spoke! It was amazing to notice how much an hours conversation lifted my mood!! I need to make more of an effort to keep in contact with my friends that I don't see very often.
Another good; I've remained well enough to stay out of hospital another week. I feel like I'm only delaying the inevitable, but we'll see....

The bad... after a lot of thought, I've come to the conclusion that working makes my asthma deteriorate so much faster than when I'm not working :-( I know full well if I'd have been working right now then I'd have ended up in hospital. I don't get to sleep until after 2am, then routinely wake up during the night/early hours thanks to my stupid lungs. My best hours for sleep are roughly 8am til midday. If I was working then I'd have to be up for work before then, and multiple nights bad sleep combined with unhappy lungs often lands me in hospital - I think I get tired much more quickly, making me very poorly once my stupid lungs start to play up. This realisation makes me sad and quite worried, I hope the day doesn't come where I'm unable to work (let's ignore the fact that for the past 4 years I've been off sick more than I've actually worked!!).
Talking of work (yep work is bad for now), I should be back to work already. I was given the all clear to return to work at the end of July. A letter was sent to my manager, I was waiting for her to contact me. She hasn't and I don't think she is planning to! First of all I was patiently waiting, then impatiently waiting, then being stubborn so not contacting them, now I don't want to go back so I'm not contacting them! However, I know this can't last, so I'll have to give them a call sometime soon. Hmmm I could write quite a bit about the way I'm being treated by my manager and colleagues, but I don't want to ruin my mood so that can wait for another day.

I've got an outpatient appointment tomorrow, another assessment to see if I'm 'well enough' for the 2nd dose of Omalizumab. I don't feel any different to last week, my peak flow diary hasn't changed so I'm going to be interested to see what is said/suggested.

Wednesday 18 August 2010

Christmassy thoughts

I had the joy of yet another out patient appointment this morning. The aim was to assess whether I am well enough for my second dose of Omalizumab, I knew I wasn't but went along anyway, hey it's not like I have much else to do!! 30 minute drive there, 10 minute appointment - my lung function is slightly up compared to last week but still not good enough to have the Omalizumab, and a 30 minute drive home.

I had a lovely idea for christmas cards today whilst driving home (which by the way is just over 4 months away!!). I like to make my own cards, but I've felt slightly upset lately when I've made cards for people and they don't comment on them or even say thank you; it makes me feel like I should just buy a standard card rather than put time and effort into making someone a card I think they'd like. So, I wasn't planning to make anymore cards, but I think what I'll do now is just pick a few people - family and close friends to make cards for. The rest can have standard (but nice) christmas cards out of a box.

My DVD player/recorder died on me yesterday which I'm really not happy about. I can't go without watching DVDs for long but I'm not sure I can afford a replacement. Well, I can afford a DVD player, but I want a recorder too, and now they're all HD with hard drives for recording onto so they're considerably more expensive then when I bought mine a few years ago! I'll have to wait until pay day and see what I can afford.

Friday 13 August 2010

Stupid lungs 1 - Dawn 0

First, I feel bad for moaning about my respiratory team in my last post. They're great, I'm just pretty fed up with quite a few things right now.

I've just been reading something written by someone with asthma, talking about their asthma and the fact that they're using their blue inhaler (ventalin I assume) 4 or 5 times a day!! Wow, if I only used my inhalers that much then I'd be very happy indeed! I'm not trying to downplay that persons asthma, experiences, or distress and discomfort. I just feel... kinda jealous I suppose!
I don't know anyone in the 'real' world with brittle or severe asthma. I read and comment on a few peoples blogs who have it, but it's not the same. I don't really have anyone to talk to, some people will happily listen to me whine on but they don't understand. I'd like to have someone to talk to who can identify and understand how I feel :(

I was supposed to be meeting a friend for lunch today and I had to cancel. She was lovely about it, very understanding, but I feel awful. Partly because I've let her down, partly because I was looking forward to getting out and I was hoping to buy some new clothes, but mainly because I've let my stupid lungs stop me from doing something. I don't like to give in, I don't do it very often, and I don't do it quietly!
There was no way I was going to make it though. I was seriously struggling to breathe, sats rapidly varying between 82% and 89%, and that was all whilst sitting still. I know, I know, I should have called an ambulance. I'm clever like that *rolls eyes* I'm up to 93% now, not great but I don't plan on running any marathons, or moving very much at all for that matter so I'm sure I'll be fine for the rest of the day.

I think it's safe to conclude that a visit to hospital is in the pipe line for the not too distant future :(

Anyway, moving on :) I had a pretty rough day asthma wise yesterday, and I wanted to go out yesterday evening to watch the Perseid meteor shower. I was sensible and decided that even though the attack had calmed down, going out in the cold night air, whilst already a little wheezy and exhausted would not be a good idea. The perseids are north east and every window in my flat faces west haha! So from my bedroom window I was able to observe south west, west, and north west (ish lol). Typically, the 2 street lights that are in view of my window have been off for the past few weeks but they must have replaced the bulbs so I had halogen lights and the occasional car headlights to ignore to!! I wasn't holding out much hope of meteor spotting! BUT I spotted 4 :) :) They're amazing, I finally went to bed at 1am very happy.

Wednesday 11 August 2010

Bring out the comfort food

Today should have been my second Omalizumab injection. After spirometry I was told I wasn't well enough to have it. I'm actually feeling really annoyed with the respiratory team :( Monday they made a big deal out of the fact I weaned myself off steroids when I ALWAYS wean myself off steroids. Then today it came up again, I pointed out that I've NEVER hidden the fact that I wean myself off steroids. In fact, I'm always so happy that I've managed to get off them that it's one of the first things I say in my respiratory appts! I do my own thing when it comes to steroids, I wean them down and I also know when to start taking them again, admittedly I generally delay restarting them but considering I don't want to take them at all, I don't think I do that bad a job of self managing it all. Secondly, they're saying I'm not well enough. This is actually not bad for me at all. I manage my lungs myself apart from when I have to be admitted. For them to tell me how 'well' I am or not, is really grating on me today.
Anyway, the plan is to have a follow up on Wednesday with the view of having the injection on Thursday.

Good news, I managed to fish the bra underwire out of the washing machine :) I did it a few hours after writing the last post, I couldn't leave it until the next day, once I get an idea like that in my head I like to get going!! It took a great deal of patience and a good hour, but I felt rather proud once I'd done it.

I've also managed to re-upholster a tattered old chair. My first attempt at re-upholstery and I'd declare it a success. I also felt quite proud of that little piece of work :)

I'm feeling pretty down after the whole respiratory thing earlier, or rather lack of! (well that and the lack of progress regarding my work situation, but that's another story and I've already moaned quite enough today). I'm going to indulge in my favourite ice cream now - Ben & Jerry's Cookie Dough, until I either feel better or reach the bottom of the tub!

Monday 9 August 2010

A lesson learnt

Well, my lazy ways have caught up with me. To me, hand washing bra's is too much like hard work so I've always thrown them in the washing machine along with everything else. A few months back, I lost an underwire out of one of my bra's in the washing machine. It intermittently made a noise whilst in the spin cycle, but otherwise no problems so I left it. Tonight, the noise was horrendous so I'm going to have to do something about it, preferably something that doesn't cost any money! I tried to look through the holes in the drum but discovered that one of my torches is completely dead, and the other needs charging! I think I'll charge it overnight and continue the quest for the underwire tomorrow, and I plan to be much more careful (aka not so lazy) in the future!!

In other news, my stint off steroids lasted 2 weeks, which is actually quite good for me. I had to restart them last week. I had a review with my respiratory consultant today, he advised that I increase the pred back up to 40mg :( I'm supposed to have my second dose of Omalizumab on Wednesday, but if I don't pick up by then the injection will have to be delayed.

I'm feeling absolutely exhasuted. I'm not sure if I'm coming down with something or if all the disturbed nights sleep (thanks stupid lungs) have finally caught up with me.

Tuesday 20 July 2010

Drugs, drugs and drugs

I finally managed to start Omalizumab last week!! 2 painful injections, but hey, nothing compared to ABG's (I kept reminding myself!). I had no dramatic side effects so was able to go home 5 hours later. I did have a headache, but was suffering with headaches a lot that week. Since I've had a very sore throat, and yesterday knee and back pain started. Random I know. I was warned that knee pain in common... I don't know if any of the post injection 'side effects' are actually side effects though, I'll wait until I've had a few more injections and see if they continue to occur...

Today is my first day off steroids :-) My peak flows aren't doing TOO badly. I know from past experiences that this is unlikely to last long, the longest I usually manage off steroids is about a week, but it's important for me to keep trying to manage without them.

Just read this "Asthma stat of the week: On average, three people per day or one person every seven hours dies from asthma." Scary :-(

Sunday 11 July 2010

Struggling....

Life feels hard right now.

My mood is in a downward spiral. I'm trying to stop it, I really am.

I had a full on bulimia relapse the week before last. 'Blips' are normal, recovery is a long process and I can accept blips. But I can't call a week long episode a blip, I can't kid myself that it was something that innocent, it was a relapse, and that makes me sad.
I broke the cycle though before it took complete control. That's something at least.

I feel so alone. I have no one to talk to about how I feel. I promised myself that I wouldn't allow myself to get into this position again, where I felt alone with these feelings, but here I am, with no one to turn to.
I've got friends that in theory I could talk to, I have my GP, I'm still technically under the mental health services (for severe depression) so I could contact someone, but I don't feel able to talk to anyone.

I had a meeting in the week with my respiratory nurse and occupational health, where a plan was devised which will (hopefully!) enable me to return to work. It felt like an exercise in making me feel stupid.
After the meeting I stayed to chat to my nurse, she is lovely and I spoke about some of the above stuff, but.... well she has better things to do than listen to me whine. Don't get me wrong, she listened and was supportive, but I took up enough of her time as it was.

*sigh*

Anyway, it will pass. I'm sure it will. I'm struggling with being off work for so long, I don't do well when I don't have routine or structure to my life.
ok, enough with the negativity, positives.......

My lungs are being relatively well behaved. I'm reducing my steroids down nicely, using my salbutamol inhaler less than 20 puffs (complete guestimate lol) a day which is good for me!

All being well, I should be starting Omalizumab this week!! I'm being admitted to respiratory ward for the day which isn't normal procedure. My consultant thinks it's for the best as it's my first dose and considering my tendancy to get very poorly very quickly. I don't mind; I'll take a book, a sandwich and diet coke and hopefully be able to sit quietly for the day :)

The plan to enable me to get back to work has been devised. It now needs to be agreed by a few people, but unfortunately this time of year people are on holiday. I think it's realistic to say that I should be back to work sometime in August :)

(See Dawn, stop being so miserable, things aren't as bad as they seem.)

Friday 2 July 2010

Maybe, just maybe....

The decision to increase Prednisolone was the right decision, I'm weaning down, currently on 30mg. Still too high for my liking but I can breathe, sleep, leave my flat.... it's all good!! This time round though I seem to be getting more side effects than I'm used to. The blurred vision is standard for me, as is the increased appetite, but this time I also have awful insomnia and water retention. I hate hate hate steroids, and hate even more that I have to take them as they're the only thing that bloody works :-(

Because of the steroids I've been able to get out and about and do things! Yay!

I visited Bath thermae spa this week. I was very dubious about it, I can't swim and have water 'issues' but it was so lovely and relaxing. It's also inspired me to learn to swim. Being in the water wasn't as terrifying as I thought it would be, and I would have been so much more confident/happier if I'd been able to swim! I've looked into adult swimming lessons, now I just have to book myself onto them.... Maybe once I've done the lessons I can go back to the spa and treat myself to a treatment (I like the idea of hot stone massage therapy) as a reward :-)

Also, I've been able to walk around shops without the usual breathlessness and wheezing which funnily enough, makes me not want to go shopping! Hence, I have some nice new summer clothes :-)
Today I went to Clarks Village, which is a discount/outlet little shopping centre. I treated myself :-D I was actually very restrained, I could have spent double what I did!!

Other good news, I had a phone call today about a meeting which will get me closer to going back to work! That's next week, so, with any luck, I could be back at work within the next few weeks! I shouldn't get my hopes up though based on past experiences.
I need to go back to work; I seem to be spending far too much money, and being at home on my own is not good for me.

Oh, and finally I have another appointment through to attempt starting Xolair again.

Maybe, just maybe, things are on the up....

Sunday 20 June 2010

Common Sense

I have decided that I need to get in control of these stupid lungs of mine.

After much consideration, I've decided to whack my steroids up to 60mg for a few days, and gradually wean down.

I'm really not happy about this at all. I don't like taking them, I don't like the side effects (blurred vision and increased appetite mainly), but for a short while I think I'm going to have to put up with it :-(
I can't continue the way I am, breathlessness and wheezing stopping me from doing anything during the day, and impacting upon my sleep at night. I don't want to end up in hospital, I've been putting it off for so long now whilst trying to stay on as low a dose of Pred as possible. Also affecting this decision; I've been getting increased cardiac pain during the night, enough to concern me :-(

I used to ok until I dropped my Pred BELOW 20mg, now I struggle ON 20mg - not good!!

Anyway, time to use some common sense and regain some control. 60mg of Pred it is for a few days, then a sensible weaning down schedule. Hopefully this plan will work, otherwise... well I just don't know.....

Thursday 10 June 2010

Long, rambling, rant........

I'll prefix this with saying, I don't know if anyone actually reads this, but if anyone does, I'm sorry that all I do is whine! I don't think I'm like that in real life....

Sometimes I just want to shake myself!!

I have a genuine fear that I'm going to die during an asthma attack, and this is not an irrational fear considering how severe/life threatening/near fatal my stupid asthma attacks are.
BUT what do I do to try to prevent this outcome? Absolutely nothing!!
Seriously, I am SO angry with myself today.

Last night at about 11pm I start to get chest pain, use my GTN spray which does help, but I still feel 'unwell'. It's hard to explain, just 'unwell'. I have a letter from my consultant, copied to the ED consultants, that states if I feel like that I'm to go straight to ED, even if I'm not having an acute attack, and be monitored so I'm safe if I deteriorate. (chest pains and 'unwell' feelings often occur before I have my very bad asthma attacks).

Well, I live almost 30 miles from the hospital, I live alone, my car is parked around the corner up a hill. Getting to the hospital is not easy.

So, I go to bed. Cue asthma attack. 1am it starts, I spend the night checking my O2 Sats, hmmm how low should I let them get before I call an ambulance.... 86%? Nah they'll pick up, it's fine (let me add, I know that number is baaaad, I know from being a patient and a nurse!!!!(and another point, as a nurse I wouldn't sit there and think that about a patient, just me)). This continues until 6am, I feel slightly better and manage to get to sleep. 8.30am my alarm goes, I have to get up as I have a respiratory out patient appointment. Moving around immediately irritates the stupid lungs, peak flow is 180 (best is 640).

It literally takes me 2 1/2 hours to feed my cat, have a shower, get dressed, put on some make up so I don't look like the living dead, can't manage anything to eat so have to take steroids on an empty stomach.
Time to leave, I realise there is absolutely no way I can walk up to my car! Phone the respiratory nurses to tell them I'm going to be late, she tells me not to come in, to phone my GP and she'll phone me back later to check on me.
I decide against phoning my GP as when I'm sat still my sats rise to 95%, not great but acceptable. Unfortunately this is only temporary, they range from 88% to 93% with a pulse maxing 170!! So I put the salbutamol down, which clearly doesn't help when I get into these situations, use my Symbicort instead and knock back a few more steroids.
Finally I start to feel better, have a nap, the respiratory nurse phones, I reassure her that I'm much better than I was.

Right now, sats are 94%, pulse 125, peak flow 220. (damn, I thought I was feeling better than that :( )
I tell myself that if I go downhill later I will call an ambulance. But I know I won't, I just can't bring myself to call an ambulance unless I feel that it's a life threatening attack.
I need to get over this because the way things stand right now, if I die during an asthma attack it's goint to be because I don't ask for help in time, it'll be MY fault.

Ahh I feel better for getting that out, I don't have anyone to talk to about this stuff in real life.

Monday 31 May 2010

Just checking in

Evidently I'm not too good at this blogging lark. My life is very boring lately, and even I get fed up of listening to me whine on about the same old boring stuff!!

Lungs are STILL being very annoying. In a bid to keep myself out of hospital I increased my steroids to 60mg, I couldn't sustain that dose for long though as it makes my vision blurry, not great when I have to drive! I've got back down to 20mg and I don't think I can risk dropping any further for now. I shall refrain from ranting on about weight and steroids :(

STILL not back at work, don't really know what is happening there, can't say I really care! It's slowly getting sorted, (slowly being the key word), I don't like where I'm stuck working for now, I don't particularly want to go back, so I'm not trying to hurry this whole process along!

I've been getting quite a few free cinema tickets lately which is great! I've seen Bad Lieutenant, Death at a Funeral, tomorrow I'm going to see She's Out of My League, and next week I have free tickets to see Letters to Juliet. Freebies are always good, and it means I have an excuse to get out of the house.

Sunday 9 May 2010

*yawn*

I should be in hospital, but I don't want to be, so I'm not.
I know, I know, really clever Dawn *roll eyes* I should know better, blah blah. I don't think I'll be able to avoid being admitted for much longer anyway :(

To follow on from my last post, Wednesday spent a few hours in hospital under observation, Thursday was fine (thanks to the stupid amount of drugs I took on Wednesday to get out of hospital), Friday I was ok until the evening when I started wheezing and feeling breathless. Yesterday I was ok until about 7pm, drove home from where I was (over an hours drive) feeling worse and worse. Thought 'I refuse to give into these stupid lungs' so sat here with my inhalers and pulse oximeter - althought that is completely useless as I ignore it until the numbers get scarily low!
1am I wasn't feeling any better but not bad enough to call an ambulance (note; not bad enough to call an ambulance for me, if it had of been anyone else they would have had an ambulance called for them hours previously, I know another demonstration of my own stupidity). Anyway, 1am I decide to go up to bed, gather all the pillows so I can sit upright in bed. Doze, can't breathe, wake up, doze.... and repeat until 8am when I finally managed to get some sleep.

I am feeling slightly better now, but I've had to cancel my plans for today :( I'm fine as long as I don't try to move too much.... I'm going to attempt a shower a bit later on so that could be fun.

I'm so fed up. I could take a huge amount of steroids, but I don't want to AND as demonstrated already this week, all that will do is delay the inevitable admission to hospital. So todays plan; sats of 90% = hospital. Right now my pulse is still high but considering how much salbutamol I've had that's not surprising, and my sats are hoovering around 94%.

I don't understand why I have such a problem getting myself to hospital, if I'd been well enough to walk to my car last night I would have driven to the local Minor Injuries Unit where they would have nebulised me and called an ambulance. I KNOW they would have called an ambulance to take me to A&E 30 minutes drive away. So why can't I just call the ambulance myself?!?! If I'd been with someone else who was in my position last night I would have called an ambulance regardless of whether they wanted me to or not. I suppose I'll just wait and see as the day/night progresses.

Wednesday 5 May 2010

Fail

I'm so fed up. Complete failure of a day :(
I went to the hospital not feeling great (breathless and wheezy) but hoping that I would be okay to have my first injection of Xolair. Unfortunately I had a resting pulse rate of 140 and O2 sats of 90% on air. (unsurprisingly) my consultant said that I couldn't have the drug, and he wanted me to be admitted. I argued, and was eventually admitted for observation to the Emergency Medical Ward. Whilst there I took some extra steroids and used my inhalers slightly more than I probably should, my sats came up, my pulse came down a little and after 4 hours I was discharged, after being made to promise I would call an ambulance at the slightest change for the worse.
I was discharged too late to go to the cinema and meet my friend for dinner.
I then got stuck in roadwork traffic so it took me just over an hour to get home.
THEN I got home to find my cat had been sick in various areas of my flat.

It was at this point that I cried :(

It's days like this which really get to me, my horrible, stupid, useless lungs cause me so many problems. I thought (hoped) Xoliar may be able to help improve my quality of life, but now I have no idea when I'll be able to start it.

Trying to be positive; at least I was discharged :) I know I don't need to stay in hospital, I'm not at that stage (yet) so I probably would have discharged myself, which I'd rather not do as it looks SO bad in your medical notes!

Tuesday 4 May 2010

New drugs for meeeeeeee

Tomorrow I am finally starting Xolair (Omalizumab). I've been promised this drug for almost 4 years now, so to be finally getting it... well hopefully it'll be good :-D
I'm not convinced that it's going to make a huge difference as my IgE levels are never sky high, but it's definitely worth a go.

Ummm other news, still not back working (the less said there the better), I'm having 'issues' surrounding friends, my lungs are being completely stupid.... all in all I'm trying to not let things get me down too much right now!

To focus on the positives; new drug tomorrow, then meeting up with a friend for dinner and going to the cinema. Oh and I get to try the new crepe place that's just opened up before I go to my hospital appointment :-)

Sunday 25 April 2010

Living the boring life

Hmmmm well, so I don't have very much to write....

I got awarded DLA (mobility component), I'm not too sure how I feel about that!! I was encouraged to apply for it by the Respiratory Nurse Specialist, I didn't think I'd get it but I thought that I had nothing to lose by applying for it. I don't really want to think of myself as disabled, but this does make me feel like less of a fraud when I struggle to even move from a chair when struggling to breathe :(

My peak flows are dropping. I'm desperately trying to avoid restarting the pred. Unfortunately, today and yesterday I feel really flu-y, I hope it doesn't develop into anything because that won't be good for my intentions of keeping away from the lovely respiratory ward.

I'm still not back at work, but hey ho, there is absolutely nothing I can do about it. Reports have been requested; it's just a case of my consultant confirming that I can go back to work, and off I go. I'm kind of past caring about it all now!

Wow, I'm pretty boring!

Thursday 8 April 2010

The sun is out!

I felt I should come and write something, it's a little early to neglect my blog considering it's only a few months old!

For the first time in a long time I have pretty good control of my asthma. I don't wake up every night struggling to breathe, I can walk around town without having to stop to breathe or have an inhaler break, I don't need to keep my salbutamol inhaler beside me everywhere I go (obviously it's close by, I just don't need to have it right beside me).... So, in light of this I am weaning down my steroids, yay!! I absolutely hate taking them and being this well is the perfect time to come off them :)
I have a hospital appointment next week, I hope this continues as it would be lovely to be able to go in being well for a change, and to give a really good go on the old Spirometry machine!

I'm still not back at work :( So much for them promising to make this urgent and rush through the referral. I have received my occupational health appointment though; next Thursday. I'm absolutely dreading it, the occupational health doctor and I have previous.... issues......
I'm nowhere near as upset about not working anymore. I've been taking the opportunity to meet up with people, spend lots of money (lol), read. The main downside is that I eat more when I have no structure in my day, but I'm working on that.

Finally the sun is out!! Unfortunately, I'm not really able to do much to enjoy it! I decided that as my lungs are cooperating, and I don't have much else to do I'd start exercising. I threw myself into it, I went from doing absolutely nothing to doing an hour every day, until my ankles complained. I think I have achilles tendonitis. Not good, it really hurts and isn't getting any better! Walking around makes it worse so yesterday and today I'm not moving very much at all. The swelling has definitely gone down, and the pain isn't as bad, so hopefully I'm doing the right thing and soon I'll be able to move around pain free!
It's so annoying, I get my stupid lungs to behave and then something else crops up!

Wednesday 24 March 2010

Slightly calmer

There have been no developments on the work situation. I have some people backing me, who want me to come back asap and agree with me that this is unfair so that makes me feel slightly better about it all. I'm still waiting to hear from Occupational Health. I haven't even received a letter, and this is supposed to be 'urgent'.
I've discovered who the 'traumatised' person is. She works in the next office to me, during my attack she stayed in her office, she didn't come out once, she only heard about it second hand from other people. Seriously, some people!

Anyway, not alot I can do about that. I was going to chase my manager to try to hurry along Occupational Health but I've decided not to. I didn't choose for this to happen, I've done nothing wrong, I'm going to take advantage of being paid to stay at home. So far I've done loads of sorting out and tidying! I've made some cards too, I haven't had the time to do that for a while. I do plan to get out and walk along the beautiful canal but the weather has been awful :( I've just checked and it's going to rain again tomorrow, miserable miserable weather!!!!!!

Friday 19 March 2010

Sad :(

Life can be so unfair :(

I took this week off work to 'recover' from my latest exacerbation of asthma. I didn't feel that I needed to take so much time off. Begrudingly, I'll admit it looks like it was needed as my peak flows have only just started to pick up. Now I have the evidence that my respiratory nurse was right all along, I probably have been going back to work too soon after previous hospital admissions. This in itself is ok.
One of the main reasons I've been so unwilling to take extra time off work is due to the fact that a few years ago I took some time off work, then wasn't allowed to go back! This lasted 21 months!! I'm still not back in my original nursing role, I had to compromise and move into an office based role just to be allowed back to work.

So, against my better judgement I take this week off sick and make it clear that I'll be returning to work next Monday. Today I had an appointment with my GP to get a sick note to cover the time I've been off and to say I'm fit to return to work. All fine. Today I speak to my manager on the phone who informs me that she doesn't want me to return to work on Monday as I'm a risk to her department, she has to think about her staff, there are a few members of staff who are traumatised after what happened! She was really 'off' with me too, like I've done something wrong. So I'm now on special leave until I am reviewed by Occupational Health and get cleared by them. I don't get on with my Occupational Health department, it seems all they want to do is cause me problems and stop me from working. Seriously, you wouldn't believe how hard it can be to convince people to let me go to work!

Anyway, back to what has seriously annoyed me. Traumatise people?!?!?! Yeah, let's remember who this has happened to - ME. Once again, I am lucky to be alive. Now it's hardly MY fault that the ambulance couldn't find me. It's not MY fault that people who had no reason to be in the same room as me where wandering in to watch the show of me having a respiratory arrest. It's not MY fault that this even happened!
Don't get me wrong, I'm sure seeing a colleague, and in some cases a friend, deteriorate so rapidly and go into respiratory arrest is not fun. I'm sure it upset a few people, but come on, traumatise them 2 weeks later after the incident? Don't you just love it when people play on a situation that has absolutely nothing to do with them?

Not being allowed back to work has nothing to do with my health, there is no dispute that I'm not well enough to return. It's purely about the effect that me being there has on other people. I don't rely on other people to help me. The people I did ask for help were qualified nurses who knew exactly what they had to do. If the ambulance hadn't have got lost I probably wouldn't have even gotten to the point of resp. arrest, and if I had, I would have been somewhere safe (ambulance or ED).

I sincerely hope this gets resolved soon, but thanks to this, next time I am work and start to feel poorly I'll feel unable to ask anyone for help incase I 'traumatise' them.

I'm so upset and angry. Being at home for too much time on my own has a tendancy to make me feel down anyway so I wasn't in the best of moods before this all happened. Now I keep crying, it feels like I'm constantly fighting and I've had enough :(

Wednesday 17 March 2010

Life is tiring

I'm off work sick this week and I feel so exhausted! I'm continually being told that I don't give myself enough time to 'recover' inbetween my hospital admissions; I usually throw myself back into work, and now I'm actually taking the time to relax I'm finally realising how tired and exhausted I am! How can doing nothing be so tiring?!?!

I think the time off may actually be benefical though. My peak flows are still right down, and my stupid lungs are still waking me in the early hours, but during the day I am actually feeling ok :) It seems to be a slow, gradual improvement but as long as the general trend is upwards and I can continue to wean down the nasty steroids I won't complain! It's rather nice to be improving than the usual deteriorating :) :)

I had a review with my consultant on Monday. It was positive in regards to the way forward, but I'm trying hard to not get too carried away as I seem to have been here many times before. I shall definitely be giving Omalizumab a try, and we discussed the possibilty of trying anti-inflammatories if this doesn't work. I can't say I'm overly keen on taking drugs like that..... I don't know, I'm all for trying anything that could help but I'll have to give it alot of thought; weighing up the potential benefits against side effects. Anyway, it would be nice to not have to get to that stage so right now I shall just wait and see what happens!
I don't get to speak to my consultant in detail when I'm admitted to hospital, he is always so busy so it was nice to be able to see him away from the ward and be able to talk to him properly, and get some reassurance :)

I took my Mum to see Alice in Wonderland 3D at the cinema today. It was part of her Mother's Day present. It was amazing! Could easily go and see it again if the cinema wasn't so expensive!!!!

My bed is calling me, I love my bed right now!! :)

Thursday 11 March 2010

Oh the drama

I'm home! Woohooo after a week in hospital I'm so glad to be back home with my Tommy baby.

Rather a dramatic week; started with a respiratory arrest at work, I've been told numerous times this week how lucky I am that I work with people who know exactly what to do. The ambulance got lost numerous times on the way to me. It's very 'weird'. Obviously the ambulances are more than used to coming onto the hospital site to take patients to the usual spots - ED, maternity, renal unit, etc etc, but they have no idea where anything else is on the site (of course not that they'd be expected to). Because I now work on the other side of the hospital site, detached from the main hospital, I have to have an ambulance to take me around the hospital to ED, approximately a 2 minute drive!!

So yes, started off feeling unwell, rapidly deteriorated, had a respiratory arrest whilst the ambulance was driving around outside, 3 anaesthetists who are based down the corridor came to assist with their bag of delights (adrenaline, ambu bag, and God knows what else). The anaesthetics escorted me into hospital in the ambulance, I think I had the best emergency medical team wheel me into resus LOL!

Anyway, I started to pick up so it was decided I could keep away from ICU for the time being. Then spent some time doing the fun BA cycle of deteroriating and then improving for while.

Skip forward 2 nights, started to feel unwell again. Now, normally I only have to cough and I dramatically drop my sats but this time I was maintaining my sats. Because of this, no one was taking me seriously. Finally, after what seemed like hours a doctor turns up, listens to my chest, immediately called for her registrar, takes ABGs, calls ICU, one doctor from ICU turns up, gets the ICU consultant down who then starts taking about intubating me!!!!!! Normally by this point I'm well out of it, it was rather scary to be able to hear them talking about intubating me, being acidotic, having the crash trolley parked beside me bed.....

Cut a long story short, I once again escaped ICU and intubation and I'm alive and feeling much better than I was!!!

I have an appointment with my consultant on Monday. I've got so much to discuss with him, I plan to make a list over the weekend. I've become quite sure that one day I'm going to die in yet another (near) fatal asthma attack, I can't say that struggling to breathe is much fun, and I have no desire to die like that :-( I know how dramatic that sounds but that is really how I feel at this moment..

Wednesday 3 March 2010

Rant alert!

I AM SO FED UP!!

I hate my stupid lungs and heart :( My asthma is slowly but surely getting more out of control, warning signs are showing and I have no idea what to do about it. I can be sitting down feeling 'ok' and something as simple as a cough/sneeze/laugh triggers a full blown asthma attack. I'm getting increasing amounts of cardiac related chest pain - these are both some of my warning signs of an impending severe attack. But I genuinely don't know what I can do about it. My GP is completely useless, I don't see him regarding my asthma unless I feel that I need antibiotics. Last time I saw my respiratory nurse (2 weeks ago) she said there was nothing she could do for me and to wait until I saw my consultant on 15 March to discuss options, AND she hasn't sent me a follow up appointment with her. I'm not taking high dose steroids as I've started to suffer from blurry vision when on them, so I'm stuck on 20mg. Not enough to ruin my vision, but also not enough to be beneficial to my lungs.

I'm seriously not happy with the care I am receiving at the moment. I'm being left to do my own thing, to try to keep myself going, then everyone is full of questions when I end up in hospital, yet again. I feel like a complete waste of space and time. It's like; I end up in hospital, they 'treat' me, discharge me before my peak flows come back up, follow me up as an outpatient and tell me there is nothing they can do, then I try to carry on with my life feeling completely rubbish until I get admitted again and restart the cycle.

I'm so frustrated I could cry! Grrrr I'll go and find some chocolate to cheer myself up.

Sunday 28 February 2010

Lazy Sunday

My life is so boring! I'm trying to motivate myself to move and start a fun day of housework. I haven't done any for so long, playing with dust generally doesn't agree with my lungs. I woke up feeling wheezy a few times overnight so ideally I wouldn't tackle housework today but the amount of dust around probably isn't ideal either!!

Oh and on the subject of stupid lungs; after taking the higher dose of Pred a few days back I've been suffering from blurred vision again. I was driving along yesterday thinking hmmmm maybe I shouldn't be driving when I can't read roadsigns until I'm right on top of them.... don't get me wrong, I can see the other cars etc! It's just that everything is slightly out of focus. I guess I can't be entirely sure that it's the Pred, but it has only started happening this month and I've convinced myself that it's related to the high doses of Pred. The more I think about it the more it's concerning me; I might make an appointment with my optician.

Anyway, I really should do something with my day! Plan - have something to eat, do some housework, then later on make some cards for some upcoming birthdays :)

Friday 26 February 2010

Let the games begin

So today is officially the start of my weight loss competition. A few other people at work have joined us so now there are 4 of us in the 'official' competition and a few other people who are playing along but don't want to make it into a formal competition. In 12 weeks those cocktails will be mine (even if I have to starve between now and then haha)!!!!

I've signed up with a few mystery shopper companies in the hope that I can give my poor abused bank account a little boost. I'm doing my first mystery shopping job tomorrow! Well, 3 jobs, £10 each, so £30 for about 1.5 hours work - not bad me thinks!!

Begrudingly I had to take 60mg of Pred this morning :( I had the most horrendous night and I didn't fancy my chances of making it through the day. I don't have a clue what I'm doing with my steroids anymore. I'm refusing to take the high doses on a daily basis as I've noticed that my vision gets blurry when on any dose above 20mg, but unfortunately, 20mg doesn't do that much for my stupid lungs. I'm trying really hard to keep myself out of hospital in the hope that when I see my consultant on 15th March he'll be able to make a suggestion for my treatment that will make a difference. (sigh) I can live in hope.........

Tuesday 23 February 2010

Happy days

I've been in a slightly better mood today :) I get so frustrated over my stupid lungs that I find it's easy to get really down.

I work with a lovely team of people, and on the whole, the work is good too. I miss my old job, I'm not allowed to work on the wards right now, infact, I'm lucky that I'm allowed to work at all. I was made to stay off work for 21 months, it looked like I wouldn't be allowed back but I won that battle, for the time being at least (that fun debate isn't over yet :( )

I've put on too much weight recently. Partly from being so inactive and partly due to the evil steroids. Well I say that, I'm not entirely sure how much of it is down to steroids and how much of it is down to me using the steroids as an excuse to eat too much!! I've entered into a little competition at work with a friend; see who can lose the most weight by the time she goes on holiday in May. It's the first time I've done anything like this - made weight loss a competitive or public thing, but hopefully it will give me some much needed motivation! (Haha she writes whilst eating mini eggs!! Luckily the competition hasn't started yet, the first weigh day is Friday lol). The 'loser' has to buy the other cocktails, I <3 cocktails!!! Wish me luck, I'm going to need it!!!!!!! :)

Sunday 21 February 2010

Hi :)

Hello if you're bothering to read this :)

This is my first attempt at blogging. I have been reading other blogs for a while and thinking about setting up my own, today I am finally taking the plunge and seeing how it goes. I'm hoping to be able to make some friends who can understand how it feels to like with BA.

I guess I'll introduce myself...
I'm Dawn and I'm 28. I'm a nurse and trying VERY hard to continue working right now even though my lungs are fighting against me.
I've had brittle asthma for about 5 years now. It came out of nowhere, I was perfectly healthy up until that point. It's gradually impacted upon my life more and more, I've been told more than once that I would have to give up work but have managed to keep going for the time being.
Last year I had a heart attack, the doctors think it was caused by the strain on my heart caused by the frequent, severe asthma attacks. When I'm having a bad flare up of asthma that I can't control I suffer from Coronary Artery Spasms, which are a bit like Angina.

I'm feeling rather sorry for myself right now. I've had 2 admissions already this month and I'm still feeling pretty rubbish. I don't like being pessimistic buuuuuut I'm heading for another admission pretty soon. I have a lovely respiratory nurse but last week she told me that she couldn't do anything further for me and I have to wait for the appointment with my consultant (in 4 weeks time) to discuss what else can be done. Great, thanks, I'll just continue not being able to do my job, not being able to sleep, not being able to walk etc etc and try and keep myself out of hospital until then :(

Anywayyyyyyyy I'm feeling very isolated right now. I spend my time either at work or at home alone. I shouldn't complain, I know that I'm lucky that I am still able to work. I live alone with my cat (thankfully I'm not allergic to him!), and even though he is my baby it would be nice to have some (human) friends around.......

So yes, that is me in a nutshell. I'm not always so miserable - promise! I'm just feeling pretty down right now and lack of sleep isn't helping. I'll be back to post something a little more cheery soon! :)