A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Sunday, 5 January 2014

Lurgies

It's a brand new year, and just as it gets going I have a brand new lurgy.  It's a viral thing.  You might be thinking, as part of me does, 'So what? Almost everyone picks up some bug or other during the winter months,' and that's true, but the problem is that, for a brittle asthmatic like myself, there is no such thing as a simple infection.

At the moment I don't feel too bad most of the time - a little bit sniffly, the edge of a headache, a slight sore throat, etc - except that, aside from those niggly things, I also have scratchy lungs and a barking cough.  The cough is tiring and it's beginning to make my lungs ache, and the worry with that feeling is that it's all too common when an upper respiratory tract infection is making its way south to become a lower respiratory tract infection.  And the trouble with that is that it will set off the asthma.

For most, a cold or a bit of viral bug is annoying and bit miserable, but you know you'll be back to normal after ten days or so.  My worry is that this could land me in hospital.  In fact, I've all to often ended up in Intensive Care on a ventilator because I've picked up a 'simple' cold.  Of course, there's the possibility - albeit limited - that I might get over this without any drama, and that is exactly what I want to happen, of course.  But the other possibility scares me.  Having a bit of a viral infection scares me.  I know that it could all go horribly, horribly wrong, and that it could end up putting my life in danger.

Mum's still with me at the moment - still here from her stay for New Year.  I have the appointment for the MRI on my back/spine first thing in the morning, and she's coming with me to that, but then she and J are going back home to Scotland.  It shouldn't make much of a difference, seeing as I'm almost 40, but actually it does, because while they are here they can (and do) make sure that I'm okay.  That's not to say that I can't look after myself - of course I can - but everyone knows that it's easier to have someone help look after them when they're under the weather.  More significantly, should my lungs have a big splat while Mum is here then I know that she can easily summon help quickly.  It's not quite so straight forward when I'm on my own again - if I haven't got the breath to speak clearly to ambulance control; if I lose the ability to judge how ill I'm becoming (which does have a tendency to happen due to a build up of carbon dioxide in my blood when my lungs get bad); if I push myself that little bit too far in trying to maintain my independence, which might be as little as trying to walk through to the kitchen to make a cup of tea, or through to the bathroom to use the toilet.

Then there are night times, those dreaded times when lungs have a habit of deteriorating and GP surgeries are closed.  Now, in my cogent head I know that in an emergency I should call an ambulance, and that ambulances exist throughout the night as well as the daytime.  But the trouble, once again, is that muddled brain that I get when my lungs go into that dangerous slip, and I forget about ambulances.  I forget about other portals of help.  I worry that I will wake a friend from needed sleep, rather than thinking that they'd much rather be tired the next day having been woken by me to help me get the right help, than to later find out that I've died from an exacerbation of asthma.  My CO2-muddled brain worries about getting my health record info and my meds list up to date in the event that I might need to go to hospital, but it doesn't always register that I should be going to hospital there and then, rather than faffing around with paperwork.  My CO2-muddled brain thinks about making sure that there's everything in my hospital case that I need, not about getting to hospital itself.  My CO2-muddled brain is a dangerous brain to have, probably because it's in danger, and it's that CO2-muddled brain - the possibility of it - that scares me now.

Of course, of course, of course I know that it might not happen this time.  I hope to God that it doesn't, but I can't trust that it won't, and that uncertainty is frightening too.  And then there's the thought that it might all drag on, and I'll get more and more tired and weary, and then I won't have the energy to fight if I need to.  The possibility of a long, slow slip downwards is frightening.  The possibility of a long, hard fight at the end of that is even more frightening.

I have home antibiotics if I need them, but there's no point in taking them at the moment while it's almost certainly viral.  I won't take them unless I need them.  I'm keeping an eye of signs of an antibiotic-worthy infection, but so far there's none.  I just cough, and I feel the heaviness in the top of my chest, hear the gentle wheeze and the edge of an occasional crackle, feel the scratchiness in my throat, and take the meds I can to alleviate what is possible to alleviate.  No relief lasts long, but I'm thankful that at the moment I'm not in crisis, and I hope that it stays that way throughout.

All this from a bit of a lurgy.  It scares me, and I wonder how much people understand about why my fears are real, and why they're not an over-reaction to a 'simple' viral bug.  And I wonder how much people understand why, at times like this, living on my own is a frightening thing, and why it means quite so much that my mum's going home tomorrow.  Perhaps it shouldn't matter what others understand ... but for some reason it does.

9 comments:

Anonymous said...

Hi Becky, I've not posted on your blog much. But just wanted to say I totally understand your fears. My asthma has become severe in the past 18 months. I get how scarey it all is, I've had 3 respiratoy arrests and ended up on a ventilator on one of those occasions. Last time it happened I would of been home alone had a friend not popped round to keep me company. It haunts me what may of happened if she'd not been here.
I hope that u are able to get over this bug without too much worry or drama. Take care Jules x

vivinfrance said...

Of course you're not over-reacting. I'm praying hard that nothing nasty "develops". Couldn't you persuade your mum to stay a few more days - just til you're over this hiccup?
Do you have a panic button/call button? I have a friend who is prone to falling and breaking bones (sound familiar?) and she has a bracelet thing that she only has to press the button and help comes. I think she has to pay a small subscription, but surely worth it for peace of mind.

Lotsaluv,
ViV xox

Anonymous said...

Hi I'm a junior doctor who met.my first ?brittle asthma patient yesterday. Suffice it to say it was quite scary! Love the blog!

BeckyG said...

Hello Jules, and welcome. I'm so sorry to hear that your asthma has become so severe, and to hear how traumatised you've b beeny some of the attacks you've had, though I completely understand that trauma. Don't be afraid to speak to your GP about the trauma you're experiencing because they can help, either directly or by referring you to a health psychologist. Sometimes just knowing you're not alone with your experiences can help, and if that's the case for you then I hope that my blog is of some use.

Thank you for your good wishes for getting through this bug. Im still not sure which way it's going to go so I've confined myself to bed to limit an exacerbation.

Becky.

BeckyG said...

Hello Viv, thank you so much for your understanding and get well wishes. Unfortunately Mum had to go home as she had some important
time-sensitive things she had to get back to do. She's phoned me each day to see how I am, but it's not the same. Your suggestion of a Community fare Alarm is such a good idea that I already have one. It is of some reassurance, particularly at times like this, but there's still that difficulty of being 'with it' enough to think about pressing the button when my C02 rises. All good ideas lose their simplicity when ' become CO2 addled, and that's the scary thing... at least that's one of the scary things. Of all the things that could indicate that l need to seek help, it's all too often the look on the cat's face that guides me! At the moment he's looking concerned and is constantly guarding me, but he's not looking really, really, really worried.

Lots of love back at you,
Becky.

BeckyG said...

Hello Dr Anonymous :) and welcome to my blog. I'm glad you like it, and I hope it can give you some insight into what the patient experience can be like. Already I like you because you're able to say that you were scared upon your first meeting with a brittle asthmatic. It's not that I want doctors to be fearful, but I think that a scared doctor can be a careful & thorough doctor. I get more scared in the asthma experience when my doctor seems complacent. Please, never become complacent.

I hope your patient yesterday is okay, and that you've had a chance to absorb the experience as well.

Take care,
Becky.

Anonymous said...

Hi :) I too have brittle asthma and bronchiectasis....i've lost count of how many times and months/years i've spent in the ICU on breathing support and i'm only 22. I know exactly what you mean by fearing the worst with every "little" sniffle. I explained that to my consultant as well who is lovely- I went in once because I was scared something was about to go horribly wrong like it always did and when I went in they went into full action with me and it turned out I was ok and it was all unnecesary that time and I felt really stupid and upset for making a fuss out of nothing because I was just scared that i'd stop breathing and things would go haywire like before or that I would die (a very real possibility).

I want to travel, I want to be with my boyfriend, I want to be at uni, I want to one day be a mum- I was just so scared for my life over a day of sniffles.

A little glimmer of hope for you though! i'm also immunodeficient and a few months ago I got approved for an ongoing intravenous therapy called intragam or IVIG ....ever since i've started i've had no infection and NO problems with asthma!!!! months and months free of being sick! I really feel like myself again :) there is hope out there even when it feels like it is all lost :)

chin up- thinking of you :) take care and keep smiling :)

feel free to find me on facebook:
https://www.facebook.com/abbey.jones.7549

http://www.youtube.com/watch?v=1Kb5OZ2m0bQ that is my story with my other lung disease....

Brendan McAdams said...

Hi Becky,

Nice work on this blog. And kudos on the recognition from Healthline.

We just announced the top doctors and hospitals in asthma research and treatment, and thought your readers might find this link of interest:

http://www.expertscape.com/leaders/asthma

(We're assuming you review these comments beforehand, so feel free to use or ignore this.)

Again, great work on your site!

Brendan

Anonymous said...

Hi Becky,

Thanks for sharing your experience with us. My team and I are working on an innovation project to develop a device that helps patients with severe asthma and was wondering if you are keen to talk to us about your experiences and thoughts. If so, you can us at surgeoninnovator@gmail.com :) We can talk a lil bit more there via email. Looking forward to hearing from you :)

Thanks,
Rena