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“A personal emotional COVID response – My own disability perspective”

Emma Louise Thompson

Let me start by prefacing that this is not my giving an opinion any wider than my own. I am not saying this is how others feel, might or have responded, or that this is true for anyone other than myself.

I guess this is just me clearing my mind on a rainy October Saturday and if reading this afterwards helps me, great, and if it helps even 1 other person then that’s just fabulous too!

So – what do I mean by my “COVID response”?

Well – I noticed these last few months myself, and a few others have commented upon that fact that, my response seems to have been slightly different to others in some ways.

Background:

Let’s start by giving some context here.
I live a ‘normal’ life about 90% of the time.
I am VERY lucky!
People have FAR worse to deal with than I do!
The conditions I ‘suffer’ from are: –

  • Adenomyosis
  • Endometreosis
  • PCOS
  • Asthma
  • Scoliosis
  • Allergies
  • Reduced lung capacity

Do I have all of these at once?

To be honest the 1st 3 Gynae conditions I am not sure anyone actually knows which one I have to which extent – diagnosis have been sketchy & confused at best over the years – so I just find it easier now to accept I probably have a little bit of an overlap of each.

Impact on my life:

So how does this affect me?

This, I think, is where the root of my reaction and thought processes this year starts to possibly deviate from perhaps the “norm” (whatever that is, and if it even exists).

1st is that I can’t plan – which sounds a little thing but imagine never being able to book a holiday in advance and have that to look forward to…I can book things within maybe a 3 week once every few weeks.

2nd is that I sometimes need to cancel or rearrange things – maybe on the day or at short notice. This has lost me countless friends, caused many an argument, and led far too often to comments that I am “unreliable”, “lazy” or “change my mind”.

3rd, and perhaps the most important to me personally, is that I have lived my entire life in fear.

Yes – you did read that right.

Fear that I might end up in an ambulance again this month.

Fear that I might collapse on a day out or during a work day.

Fear that I might end up so ill this job could be my last and that the doctors were right – I should have gone onto disability.

Fear that I would let loved ones down so much they would end up hating me.

Of course these are huge over reactions – that inner voice we all have playing tricks with me – even on my worst days I am still me. I would still think of others, be kind, minimise the impact of any problems I had on those around me, and still be – well, Emma.

I’ve tried to categorise the impacts of my health challenges, and therefore my mental response patterns, into some key categories, as per the below: –

I hope these points are clear, and perhaps a tiny part of this might be useful for someone struggling with the seemingly daily changes, frustrations & worries at the moment with the news and COVID restrictions.

Key aspects:

Fear

This might be the 1st time you are experiencing a real feeling of fear. Be that fear of going out. Fear of losing your job. Fear of contracting this virus.

Fear cripples, it stops us in our tracks.

Fear is that voice that wakes us up at 3am and stops us getting back to sleep.

If there is one thing I have learnt from a lifetime of that voice – telling me I should give up, telling me I wasn’t meant to live a normal life, telling me to stop trying so hard because what’s the point – is that it can be right or it can be wrong.

The choice is, most often (though not always) yours.

Of course we should listen to that voice when it tells us to wash our hands more, to wear a mask, or to disinfect more regularly…

…but we know, in our guts, that for example a walk in the fresh air is good for us. We need to connect to nature. We need to see other people – even if only at a distance.

My advice is to talk as rationally as you can to that “Fear voice”. Subdue it with rational factual evidence to support talking it down. I guess it’s like calming that Chimp brain down so the other part of us can start to work the problem out.

Acceptance

This brings me onto acceptance.

For example I accept that yesterday the best thing I managed to do all day was shuffle upstairs and have a bath.

That I listened to online Webinar sessions to keep my mind off how much pain I was in and how faint I felt.

That today the most challenging thing I have set myself is to stand up for long enough to have a shower and wash my hair.

2020 has challenged all of us to accept a “reduced” life – be that financially (we earn less money); practically (we can’t get out as much); or emotionally (we can’t see the ones we love like we’d hoped too).

We HAVE to accept these things – arguing about them, or rallying against it, or going over & over whether it is or isn’t right simply doesn’t help us.

Be it right or wrong – and I’m sure all of us have our own views on the governments actions through this pandemic – quite simply – it “is”.

Accepting it and truly letting go of your illusion or control over the uncontrollable is possibly one of the most freeing things you can do.

Gratitude

Gratitude is key here – For me I am incredibly grateful that I managed 30 years (okay 29 but I like rounding up – I’m an Accountant after all) of full-time work.

I’ve now moved to a flexible-working part-time model which undoubtedly suits me better but growing up in an environment where we worried constantly about money I was determined to stick to a very personal goal and only work less once I could afford too.

I’m not saying I have huge chunks of savings or am wealthy by any means but I feel safe now to earn a little less and know I can still pay my way.

I’m grateful that I have the mindset I do – that I am a natural “Tigger” – I see the positive in everything by default.

Sure I have had to cultivate and develop that mindset over the years, and some days it’s harder than others, but I tend to lean more towards the “okay, we’re in this shizzle – how do we make the best of it now, get out of it, and then make things better” mindset than the “why am I here” or “why me” mentality.

Being grateful for what I do have – be that good friends, a loving husband, my Mum still being alive, that my Mum met someone new so has a 2nd chance at happiness after my Dad, that our Rescue dog has come on so far in the 4 years we’ve had him…the list goes on – is SO key to a sense of internal comfort, happiness and peace.

Flexibility

Now more than ever people are having to be flexible – in their working patterns, their plans, their entire lives.

This is new to most but something I have encountered my entire life so I think perhaps of all the aspects of 2020 this was the one I was most ready for.

I already had to set 2 dates with friends and say “can we pencil in 2 dates please if it’s after day 21 – then nearer the time I can confirm one of them”?

I already had to change my mindset to booking things purely last minute rather than having things to look forward to.

I created a world of back-up and contingency plans so disappointments became less, well, disappointing.

My advice here is to set up a group of back-up plans.

Be that things you can do indoors rather than outside; virtual events rather than say concert attendances; Zoom meetings with family & friends in case that party gets cancelled again if the rules change.

Become more flexible in advance so that you are ready to make changes if needed – reducing the amount of disappointment you can feel if you have to move from Plan A to Plan B.

Tolerance

Tolerance is so critical.

Tolerance of ourselves if we need to have a day out and turn off all news & social media. If we need to have a good cry or yell out loud in a forest at nothing and no-one just to get it out.

Tolerance of others if they need to cancel a plan or need a bit more support to get through something.

I think being a person with disabilities I am naturally more tolerant and accepting – I have to be of myself, so why not be of others – but I think this year, more than ever, ask yourself some key questions before you act or say something?…

  • Is it necessary?
  • Is it kind?
  • How would I want someone to be reacting to me in this situation?

Forgiveness

Forgiveness for me means forgiving others if they react a different way to us.

There’s a huge variation even in the street where I live of responses and beliefs this year – from those who think COVID is a hoax, to those living carefully, even to those completely in isolation since March – terrified to leave their homes.

It’s far too easy to judge others and become angry – to let your fear transform into frustration and then vent that at others – but we must be tolerant of others, as well as acceptant and forgiving of our differences.

Determination

Finally, determination – which for me has been the most important both this year and throughout my life.

I was determined not to accept the things people told me I couldn’t do physically.

I’m determined now not to let the frankly insane state of events in the world get to me too much, or change who I am as a person.

I’m determined to focus on the 1 good bit of news each week over the 1000s of bad things shared & re-shared.

Determination doesn’t mean you always achieve your goals.

A great example is last year my husband & I trained to walk a marathon together. We trained for 6 months – walking up to 18 miles in a session to work towards the main event last Summer.

I worked so hard – doing all the work with him – but knowing all the time I may or may not be able to attend on the day if my pains were bad.

True to that inevitable law of sod I couldn’t do the walk on the day – but I changed my perspective and focused on 2 things: –

  • I drove for 6.5 hours that day so my husband could complete the walk. I set him off with food, drinks and support and was there to meet him at the end with the hugest hug & smile & proud wife love. I know that made a real difference to him being able to complete the event. I know I still made a difference that day.
  • I walked 18 miles in training! That’s nothing to sneeze at. And I know one day, luck will be on my side, and I WILL hit that elusive marathon distance and tick that off my “to do” list.

So, my takeaways are:

  • Manage that Fear.
  • Be more Acceptant, and Grateful.
  • Forgive – yourself & others.
  • Be flexible – make back-up plans.
  • Be tolerant – of yourself and others.
  • Be determined (or resilient) – celebrate the small wins!

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