When did you first realise that your life had changed?  Or, perhaps more accurately, when did you accept that it had actually changed, as opposed to resisting or stubbornly denying it?  I wonder what springs to your mind when I say that – it will of course be different for everyone.

 

I am a lifelong, severe asthmatic.  I pretty much grew up in hospital, missing school, attached to various breathing devices and being pumped full of medication, being transported to A&E at speed in the middle of the night.  This was so normal to me that, over the years, I lost sight of how abnormal it actually was or that most people don’t endure this sort of thing.  I’ve since learned that we normalise the abnormal as a way of coping – it’s how our brains protect us from unendurable stress and trauma.  

 

Short term this is a good and helpful thing, but long term, not so much.  When it goes on long term, I’m starting to understand that we end up pushing reality down or away as a method of coping.  But eventually, it means we develop unhealthy coping mechanisms that aren’t necessarily good for us.  Or maybe it’s just me?

 

I’ve been described in many ways (and described myself in them as well) Stubborn.  A coper. Someone who just keeps on going.  “I don’t know how you do it!” Hmmm no, I don’t either…..but maybe I don’t have to?  Do I have to?  Is there another way?   At this present moment, I’ve been desperately ill since July – so that’s five months so far.  I had about three weeks in August when I was a bit less ill so could hide it better, but I wasn’t healthy by any stretch.  Then come September, I just went straight downhill again and have stayed downhill.  In the past, my husband would step in and take over the caring role for our son, the household responsibilities and send me to bed (or hospital as applicable) and I could concentrate on getting better.  That is no longer an option and I’m finally accepting just how much of an impact that absence, after fifteen years, is having on me – on us.

 

What does that mean for me?  Well, as briefly as I can, struggling to breathe against what feels like an elephant sitting on my chest *all the time*, never able to take a full breath because my lungs won’t expand properly, wheezing with a noisy rattle with every breath, my normal walking pace and movement being reduced to around 4-5 feet after which I have to stop, rest and get my breath back as if I’d just run a marathon.  My previous “normal” walking speed being reduced by about 75% so everything takes longer to do or is just impossible to do, depending on the situation.  Coughing and coughing and coughing – deep bronchial spasms that take my breath and leave me gasping for air while struggling to stop coughing.  Trying to sleep at night but being unable to get even close to lying flat so being propped up by a stack of pillows, trying to get just the right angle to avoid extra pressure on my lungs or avoid feeling like I’m drowning in wheeze and trying to snatch a small amount of sleep in between coughs.  Inevitably then, falling asleep regularly but briefly throughout the day as my exhausted body tries to catch up.  Sounds pretty grim doesn’t it?  Well, it is I’m afraid.

 

On top of that, are all of the inevitable losses – I’m supposed to work full time but having been off for July and most of August, I managed three weeks at a much reduced pace in late August, early September and was then signed off again.  I haven’t been able to go back.  (Yet? Who knows).  Normally, I would do all the caring for my disabled son, often finding it difficult because it IS difficult, but managing it.  Now, I’m doing what is absolutely essential to keep him safe, loved, bathed and fed but I’m not doing all of the “nice” parts of parenting – getting down on the floor and playing with him, taking him out of the house – anything like that.  I can’t even read him bedtime stories as we’ve always loved doing, because I don’t have either the breath or the voice to do it.  I compensate by playing him audiobooks as I sit beside him but it’s not the same.  Has he adapted?  Sure, he spent a long time asking “Mummy read it!” But now he’s learned to ask, “Story mummy’s phone!”  It’s practical, but it’s also heartbreaking.  But I just can’t do it the way we used to.

 

There are so many other examples I could give, but I have no particular desire to engage in a pity party.  I’ve been off work for months.  I’m on round the clock medication.  I talk to my GP *at least* once a week.  I’ve been admitted to hospital (where realistically I should still be, but what happens to my son?). The thing is, it’s just not getting better.  I desperately wish it would but it isn’t.  

 

As is always the case in these situations, I’ve had so many suggestions from people; they’re all well meaning but that doesn’t mean they’re helpful or right.  “Have you tried this ointment / cream / supplement / essential oil?  It worked wonders for my friend!”  “Have you had your allergies tested?  What about your pets?  Is it them?”  (Yes I have and no it isn’t.  Of course I’ve thought of that.)  Have you tried the osteo / chiro / physio / this miracle therapy……. Well it just goes on.

 

I was talking to one of my best friends today who also has long term health issues and she pointed out that the people who love us or who encounter our pain and illness want to fix it.  As a culture, we’re not good at just sitting with people in the darkness of their current experience, we want to find and suggest solutions – maybe because this would make things better for the person we see (or perceive) to be suffering, but maybe if we’re really honest because we feel uncomfortable with a lack of solutions.  

 

We don’t understand (did we ever?) how to just accompany someone in their experience, without trying to solve or fix it.  Do we realise that our well meaning efforts end up just making things worse because the ill or disabled or suffering (delete as applicable) person then has to not only cope with whatever their situation may be, but also has to cope with our bumbling attempts to sort it out?  And our denials that the solution we offer really WILL work for them if only they will try a bit harder?  Listen a bit deeper?  Be willing to try it?  (Again?) 

 

Increasingly, I’m starting to wonder when it is appropriate to continue to rail against the darkness, in an effort to push it away and seek the light, and when it is appropriate to  accept that the metaphorical or literal darkness is just the place we’re living in at present?  And maybe for the long term?  How do we accept this change in our identity, our role, our purpose and when is it right to do so?

 

Answers, but not solutions, on a postcard please….