Musings - The Big Wheeze

It's really difficult to describe to someone who can freely go to anyone's home without threat of having an asthma attack what it's like - not just physically but emotionally too... I read something a while back about having a certain amount of spoons and how you have to calculate each move of your day - but I am not sure at this point that that will make much sense and I don't want to confuse the matter with cutlery... yet.

Without meaning to gain pity from friends and family, let me try to explain a few things from my perspective so that at least what I can do next time I turn down an invitation or say 'let's meet at the park' you have some idea of why - and that it's really not you at all - and that I still love hanging out with you! I can also perhaps point you towards this blog post so that you understand that sometimes I can't just explain on the spot and sometimes I just want to not make a fuss. And sometimes I feel really sad that I can't come over and join in - and also wonder sometimes why it's just me. But that's practically falling into the victim category and I swore I'd never do that...

SO.

Asthma is really an unknown to the medical profession. There is no 'one glove fits all' diagnosis and each person is different with their triggers and reactions. AND to make matters even more complicated, sometimes the triggers are interchangable. And not all cats are created equal. (I can last for ten minutes with some and two hours with others - but to find out just how long I can last can mean days of illness for me - so sometimes I choose not to find out!)

All I can speak of is my own experience and I do hope, if you are also someone who suffers from restricted breathing that either some of what I write here resonates with you and inspires you to make some changes - and also to be brave, as I feel I am being here, by being really honest about your limitations and how if you don't listen to your body's reactions, it can really transpire to be dangerous to your health. And I believe that your friends, mine too, would rather you were alive and well than permanently suffering because you kept on going to their homes for fear of making them feel bad.

Here's my lowdown... the 'Big Wheeze' if you like - yours might be different and if you're reading this as one of my friends, yes, I might be talking about your home! But no, I don't mean any offence whatsoever.

I might have a reaction in anyone's home and each reaction might be different in severity and in duration and will depend on so many factors that even I don't have it down to a tee yet.

I do know however that if animals are living in the home, I am also certain to experience difficulties in breathing after anything from being there for five minutes to two hours. I also know that if the home is dusty or if there are carpets (clean or otherwise), lots of material and drapes, mould, mildew, air fresheners, toxic cleaning products... then I will almost certainly experience a reaction.
The problem doesn't just remedy itself there and then though and if it did, I think I could sit through a few hours of feeling like I can't breathe very well just to hang out. However, the aftermath can continue for days, sometimes a couple of weeks.

 It takes time for the body to recover.

I have had very kind and well-meaning friends who suggest I take my inhaler or an antihistamine (or once, an Extra Strong Mint!) - I used to live on antihistamines in my teenage years and tried using them for allergies in my 20's - for me, it was a case of 'The drugs don't work'. I managed to suppress some of the symptoms (perhaps my eyes would stop itching) but it had no affect whatsoever on the breathing. I would also feel very detached from my body - I remember trying to play badminton after taking an antihistamine once and it literally felt like I was trying to puppeteer myself. So I stopped taking them.

A few months ago I went to a friend's house who had a cat. I didn't know she had a cat and professed to everyone that I would be ok, knowing full well that I should have gone straight home. But this is where it gets hard for me. I do not like being a kill-joy - I can't bear the look of disappointment, or sometimes disbelief - 'it can't be as bad as you're making out' that I see cross a friend's face (not the case with this friend but this has happened many times in the past!)

- and I don't want to deny friends their hospitality rights! In this particular situation, I took my inhaler about six times over the course of a few hours (that's twelve puffs!) - the inhaler relieved the symptoms temporarily each time but this passed very quickly meaning that over a few hours what I was actually doing was over-dosing on my inhaler.

And this is also tricky to describe. I don't faint or turn blue or throw up - I just feel really, really awful, inside the core of my being. I feel desperate and shaky (that is also sometimes a physical symptom) and as well as the breathing not returning to normal, (which is a very frightening thing - and it's easy to get panicked at this stage when you realize the inhaler isn't working) there is a feeling that spreads all over my body that feels like little reactions are awakening in my lungs, my stomach... just everywhere. It's hard to describe. (Maybe this is the time to talk about those aforementioned spoons!)

Sometimes, in this situation, the inhaler will stop working - my breathing will become increasingly laboured, my chest will become tighter and tighter, feeling as if there is so little air left in my lungs... my whole body will become tense and feel like it is fighting for every breath. When the inhaler stops working, this is when it gets very scary. There are quite a few times I should have had medical intervention - but there has only been one time when I called the ambulance. This was after six hours of highly restricted breathing. That is too much. Damage is being done, I am certain, whilst this process is occurring. The ambulance team were amazing - they made me feel like I hadn't wasted their time (my main reason for not calling them out in the first place) and put me on a nebulizer and even though it took me quite a few days to recover from this, this was the turning point. How can I put myself through this again (although since then, I have, many times!)

This doesn't always happen 'on site' - this is what happens when I leave and then the reaction continues afterwards - so this is the part that many friends and family don't see. All they see is me getting a bit wheezy and puffy and needing my inhaler and me saying 'no, it's fiiinee- I am ok!!' And then, quite rightly, perhaps don't understand when I say I can't come over - as I didn't quite tell them about the days of not being able to breathe properly. Silly me!

To Do

If you suffer from asthma symptoms, and you have been in a place or home that has allergens in which have clearly affected you, don't do what I did and wait six hours. Get proper medical treatment IMMEDIATELY! You are not wasting anyone's time and remember, that people die yearly from asthma. It is not to be taken lightly. It is largely misunderstood and this is why I am writing this really long blog post! Through this, I feel like I am even gaining a better understanding myself.

• Have a shower/bath as soon as you can. Wash your hair thoroughly. Wash all the clothes/coats you were wearing and if you slept in the bed before doing all of this, wash your bedclothes at the highest temperature.

• Don't despair. Treat yourself through daily exercise, cutting out foods which may exasperate the problem (for me, wheat, dairy and sugar). 

• Include foods in your daily diet that are known to help the respiratory system such as cold pressed olive oil, olives, oily fish and hemp seeds/milk. 

• Seek ways to really boost your immune system and become the healthiest 'you' that you can be! Also, try to gain a better understanding. Don't just keep going to your doctor for more inhalers. Do things in between times to lessen the symptoms. 

• Talk to your friends about it. Invite them to your home instead or meet at an alternative place.

The fact is, when you are asthmatic, you will have limitations. 

There will be homes you can't go to. There will be places you can't visit. There will be pets you can't buy your children. There will be foods you can't eat. And you may have to pay attention more to what you do eat and drink than most of your friends. You may also have to measure every part of your day in some cases and friends may feel angry and annoyed with you, disbelieve you and say you are seeking attention when you are gasping for breath (yes, that has happened to me!)

It may also be the case that you have to leave a party suddenly and yes, there might be disappointed faces - and you MAY even lose a friend or two (no, that hasn't happened to me). 

But like any illness, disease or disability, talking about it, raising awareness and being more honest and open about what's going on isgoing to help your case more. The amount of times I have suffered through an evening and told people I am fine when really I am not at all -well, there are too many times to mention. And I am striving to change that as I get older.

Tips for friends of asthma sufferers:)

1. It might be that your friend simply can't come over to your home - so don't feel rejected. Your friend loves YOU - it's just that when you're asthmatic, you can't always control how you are going to react to an allergen, such as dust, cats, mould etc. Just know that this makes your friend really annoyed and sad too - they certainly don't want to have troubles with their breathing - something that many people take for granted every day that they will always be able to just, 'do' - breathe normally and with ease, that is.

2. Washing your walls and shaving your cat are very nice things to do, but it's probably not going to help as many allergens are airborne, so again, don't make all that effort to feel hard-done by if your friend still can't come over (and thanks to my very good friend who DID wash their walls and shaved their cat - and no, they didn't take offence when I then couldn't come over as often as I'd have liked).

3. If you have a known problem in your home that is causing a reaction, (and you want your friend to visit!) then seek ways to remedy it. Is it too expensive to do? Consult about this - what can be done? What are the limitations? Can you do trial runs of visits (knowing that your friend may have to leave at any given moment)

4. Be patient and understanding. The asthmatic friend already beats herself up about this, believe me!

5. Consider having your pets outdoors - * (I am totally aware that this is unrealistic for some people, but it is still an option.) If you haven't yet got a pet and you are considering buying one for your family, is there a particular type you could get that people are less allergic to? (for example, rag doll cats)? It may also be helpful to consult with the asthma sufferer. Realistically, how often do they visit? Is it worth more to get the animal or to have them over once a year? Is is important to someone in your family to have a pet? You can weigh all the options and think about what you'd like/need/want to do. I find prayer helps solves all difficulties - the right answer will come if you say one!

6. Remember that even if you haven't had animals (if that/their hair/mites/dander is the particular allergen) in your home for YEARS, your friend could still have a severe reaction. There are deep cleans you can do (especially with carpets and upholstery) and having wooden or any other non-carpeted floors is a good option.

7. At the end of the day, as long as you spend time together, that's what counts, right?!

I would really love to hear comments from people who suffer from asthma or from friends of sufferers... and any tips, ideas or thoughts you have on this subject.
Thanks for reading this post! I hope it does raise more awareness and that it enables you the reader to either take action with your own health, or if you are not an asthma sufferer, that you get some idea of what it's like... even though it will always be hard to describe - just like I will never really know what it's like to have my leg broken - until it happens! Breathe easy every one!
ps I don't consider myself 'a sick person' at all - in fact I feel very healthy and alive and it's just that I do have to plan and think ahead a bit more in an attempt to control the asthma symptoms. However, when I read this article about the spoons, it did actually resonate with me on many levels. So if you have a further five minutes, do have a read and see what you think:)