A normal life?!!

I've been delaying this post tonight. Why, you say?? You are saying that, right??

Well, I started this blog this year after some of the worst respiratory health I've ever had. 

I've been a person with asthma for about 40 years. It's been good, bad and indifferent and then for about the last 2 years its been absolutely shite! This year more shittier than any other time in my life. I had no life, it was being controlled by the bastard thing called Asthma. I'd even double checked my will at one stage! 

I've been blue lighted in to hospital 3 times this year and the last time my gorgeous Husband (see photo 😍) didn't even phone for an ambulance he just drove like a bat out of hell........... (no speeding tickets thank the Gods!), where a wonderful hospital receptionist took one look at me said 'don't speak' (I couldn't) and got me seen straight away.  I escaped ICU this time by the skin of my teeth!

So this time, I had to think very seriously about the offer of Xolair injections. For those of you that don't know (I'll try to keep this simple) 

• A person with allergic asthma (me) breathes in allergens like pet dander, dust,pollens etc etc (in my case a fair list) 
• In response the body makes (wait for it) Immunoglobulin E - IgE 
• When the allergen is breathed in again, IgE attaches itself to the allergen and the surface of inflammatory cells (hang in there) 
• This little sod releases substances that may cause narrowing & swelling of the airways (inflammation) 
• Its this inflammation that can cause an Asthma attack 

So, my consultant and other health professionals (yep, there's a clue for know it all me - professionals!!) for the last 2 or 3 years have been encouraging me to think about having these injections (Omalizumab is the correct name I think?!) 

These injections are designed to capture most of the IeG in your body, therefore blocking the role of the IeG that would lead to the Asthma attack. Hopefully, that's a correct interpretation.  

But nope......... not for me. I could control this wayward Asthma with diet/exercise/meditation/hypnosis.....!! No actually I couldn't! (no shit - really)! I think all of the afore mentioned helped in as much as I wasn't (quite) so fat, not (quite) so unfit, not (quite) so stressed! 

So after hospital stay number 4 some 5 months ago, I 'gave in' and said oh go on then - not much to lose, except for my life! (always prone to melodrama 😊😊). 

Therefore, I can be found once a month having injections in each limb. First 2 months I found little difference (apart from my ability to navigate the roundabout near the hospital) and then little by little, I've realised how 'normal' I've started to feel. Now 5 months on THIS has happened: 

• NO ventolin for over 2 (yes two) months
• NO oral steroids AT ALL 
• I have had a cold and it STAYED JUST A COLD

Go me, go me, go me, go me!!! I should add, I'm still on my preventative inhaler though - although less of it. 

Now then?  Why was I reticent to post this. Well I have this weird fear that somehow I'll put a hex on myself (told you - drama), but more importantly this treatment isn't for everyone and I know for some people with severe Asthma this might just be a kick in the teeth - 'oh bloody good for you' - I imagine being said through nebuliser mouths........ I really appreciate from other Asthma blogs how difficult their lives can be - so I didn't want to be seen as smug. 

But I wanted to enthuse anyone who may be agonising about whether this treatment is for them. 

I also wanted to say Thank You to all the respiratory team at Derriford Hospital who hung in with me when my size 7 heels dug themselves in, and gave me the space to decide for myself. 

To thank Staff Nurse Kate who jabs me with glee (joke!) every month - we have a great medical relationship and I feel I can talk to her really honestly. To Sister Bev who rules (🤣) runs the Asthma clinic with a humour and gentleness that makes it a great place to visit so regularly, (and always greets us regulars with a smile and a little chat) and all the team in this unit who I feel have become more than just staff who look after me. 

Thank you to Sister Ali on the respiratory ward Hexworthy and all of her wonderful team - you're all bloody brilliant up on that ward, but, maybe, just maybe I won't see you for a long time (fingers well and truly crossed)! 

I will update this blog in a few months time and lets hope that the person in the top photo is still smiling and enjoying life! But in the meantime, I'm just going to carry on re-finding that thing called normality!

In the meantime dearest readers, I wish you all a peaceful, healthy and Happy Christmas. 

Liz x

Flu Jab - Why Should I?

I've completely changed what I was going to write about today because this seems to be a very hot topic - the Influenza/Flu jab! 

Now it's true that just having the flu jab does NOT protect you completely against getting the flu - I should know, because it happened to me this year!! In fact twice in my entire (reasonably long life) I have had THE flu. 

Proper flu........... not a heavy cold or a night on the beer (some of the excuses my staff have used!) but your proper eyeball hurting, muscle aching, shivering body, head pounding flu - that meant if someone had left a thousand pounds at my feet I'd have been unable to get out of bed, bend down and pick it up sort of flu. Add to that the pre-existing Asthma, then you've got a very sick person. 

Now I'm reasonably good about getting the jab every year, and there are a couple of reasons for that;

1 - I have a GP who nags me and has even been known to ask me in the street if I've had it

2 - I have a Husband who virtually makes the appointment for me if I prevaricate! 

Probably, left to me alone and not having a great Doctors practice and a reasonably good Husband (😀 I lie - he's fab!) I'd not bother........ that's the truth of the matter. Just because I sometimes can't be arsed to go to yet another medical appointment. I sometimes think I spend more times in medical centres and hospitals than some nurses! 😱

It has to be said that after this years episode where I ended up in hospital for ten days, 5 days of that in solitary confinement isolation with Influenza B I was totally in the 'Bollocks to it in future' state of mind. To say I was pissed off that I'd caught the flu doesn't come close to how I felt!! 

But in truthfulness I can't really understand why anyone in their right mind could ignore the warnings we're being given such as, the rates of flu are already higher this winter than they were at the same point during last years outbreak which was considered the WORST IN SEVEN YEARS! With experts warning it's only a matter of time before a pandemic of flu hits us. Good reason alone just in that sentence I'd have thought?? 

Most asthmatics know that if they get a cold or any virus it'll upset their Asthma, so it doesn't take a rocket scientist to tell you what getting the flu will do to it! 

Some of the reasons given by people are worry about the side effects and being sceptical about whether it even works. Well, clearly the flu jab can't work against every single strain, but surely it's better to be safe than sorry. As for side effects, apart from a sore arm some years I can't say I've noticed much if any.    

If you're still not sure or need advice have a look at Asthma UK's website or give them a ring, 

https://www.asthma.org.uk/advice/inhalers-medicines-treatments/other/flu-vaccinations/

So did I have it again this year, despite having been so ill earlier this year or did I stick to the 'bollocks to it' approach?? 

What do you think?????????? 

Anyway, away with you now and get it booked in if you've not already done so. 

#buggeroffasthma

Breathing - as easy as in and out!

Breathing - it's as easy as in and out! Isn't it?? 

Well now then - the answer to that is a resounding NO - it blooming well isn't sometimes.  
Its not even about taking a deep breath, even small breaths can be tricky. 

Just do something for me, right now. Check YOUR breathe........... holding it? Breathing from your nose? Breathing from your belly?? Little shallow breathes?? Or actually are you breathing ok?? 

Tricky isn't it.....! 

I've just started practicing Yoga and I realised pretty quickly into our first lesson that:-

  1) I was unable to breath in much more than to a count of 3  
  2) I actually don't breath very well 
  3) I breath so shallowly it's no wonder I get so many headaches - I'm just not moving the     oxygen round my body. 

Yet in an attack or exacerbation how many asthmatics get told by health officials or worried relatives to 'try to calm down' or 'try to breath properly'. 

A lot less these days I must admit, yet talk to people with Asthma and they will tell you it still gets said.

Well there's a few things about that as well:- 

1) Never in the history of being told to calm down (in ANY situation) have I ever not wanted to hit the person who suggests it (!)

2) When you are unable to get any breath into your lungs and each breath feels like it may be your last I guarantee you'll probably be breathing/gasping faster and harder than many people will (thankfully) ever know. 



However, if you'd like to understand a fraction of what it feels like to be struggling to breath, try this - Get a clothes peg and put it on your nose. Then get a very heavy coat or three and put them on. Try strapping a really heavy weight on to your chest too if you can. Then get a small straw and try to breath through it.............. 
That my friends is a little tiny bit like it feels when you're in the midst of an Asthma attack. 

So what am I doing to try and get my breathing better? Well Yoga firstly. I've found a lovely, intelligent and empathetic teacher - Jules. I'm already almost able to breathe in and out to the count of 4. Secondly, though the power of Twitter I have found an excellent site with some brilliant videos and good, sound advice about Breath Re-Training. Thirdly, I endeavour to walk the mutts at least twice a day if the weather allows it - but hills are still a bit tricky for me.  

Back to this website though  http://www.breathestudy.co.uk  I came across this through Twitter and the people I've started following, and some of them have started to be interested in my ramblings. There appears to have been a lot of work done on Breathing and Re-training of breathe. What I have become interested in is a programme of work undertaken at the University of Southampton, from 2011 to 2016.  

Funded by the National Institute for Health Research (NIHR) to carry out a programme of work (Breathing REtraining for Asthma Trial of Home Exercises – known as BREATHE) they have developed and tested a new way of delivering breathing retraining for asthma.

Now I am NOT a health professional - just a patient, but what they've written and the videos they've produced are excellent and I think worth a watch! I'd also give this blog post a read as Professor Anne Bruton gives information in black and white. 

https://anniebruton.wordpress.com/2017/12/14/results-of-the-breathe-asthma-trial-the-end-of-a-long-research-journey/

What would YOU like to see me write about??? Do let me know and if you have any comments on this post, please let me know. 

Till the next time - this blog now has it's own 'hashtag' - #buggerofasthma - so if you twitter about this blog, I'd love you to use it. 


(P,S Apologies for different colours in typeface - Blogger decided to do this his/her own way!) 

Hello and Welcome

Hello, and if you've got this far in reading my first blogpost - I say stick with it, it may get better! 

I'm Liz. A woman in her more mature years (you'll note I didn't say quite how mature!) and I've had Asthma for 40 years. (there's a clue - I ain't 40!) That's quite a long time isn't it............ and I don't think it's caused me as many problems as it has done the last few years. 

So what is Asthma and what are its effects on me? 

Well, it's managed to turn me nicely from a confident outgoing person, who's had some big careers and loves to travel, pretty much feared nothing person into an anxious, often scared person who now acknowledges that having Asthma is actually not 'just Asthma' but a shitty illness that means my whole life can be turned upside down in a very short while.  

Someone who worries that 'what if' the next Hospital admission is my last?  Will my Husband, Son and family know how much I really loved them? Hence the poor loves can't get through a day, a phone call or a visit that ends in smothering 'love you's'! 

My Asthma means that if I'm on steroids for too long I turn into a psychotic, raging bull who will quite likely one day do or say something that may not be repaired with an apology. Ouch! 

That plans (often laid down ages ago) can and most probably will be disrupted, family and friends have had to get used to receiving phone calls apologising for my absence. 

My Asthma means having an inhaler with me everywhere I go.  It means that my calendar is full of Hospital appointments for various check ups. It means that my travel insurance is bloody extortionate!! 

In short, having Asthma is an absolute fecking nuisance! 

BUT - I am fighting back. I'm educating myself about my Asthma as much as possible. 

I'm learning to know the signs that I'm on a downward slope with it. I'm learning to be kind to myself - now, THAT'S been one of the biggest things I've had to learn. I've learnt to say 'yes please' to every opportunity to do fun things RIGHT NOW rather than wait a while. 

It's not all doom and gloom, there have been a number of funny moments I'll share with you, some sweary ones and some quite sad ones. 

I truly hope that by writing about my experiences in this blog it will help me work my way through this and also help someone reading it, whether that's a fellow sufferer, a relative or a health professional to understand from my perspective what it's like to have Asthma.  

Till next time I only have this to say:-