Using our experience to help deal with isolation

Watching the news and reading all our threads on coronvirus and all the challenges people will face, it struck me that dealing with isolation, finding ways to keep ourselves sane on low budgets and living with uncertainty are all things we are experts at.

Instead of watching & worrying I wondered if there were any ways we could use our experience to help and support those who suddenly find themselves in a strange and lonely world.

As a group, I find you all extremely generous in spirit, kindness and understanding despite everyone having plenty of their own troubles. I would love for others outside our community to see us for the people we are & not the weak willed stereotypes we've been painted to be.

I don't have much of an idea how to go about it, but could & should our patient community do something to spread a little light & kindness?

 

@Invisible Woman - I know that there are some blog posts underway to try to share some of our decades of collective wisdom and ingenuity but I think a thread here is also a great idea.

One thing I would suggest is that people talk with older relatives/friends, people who are especially vulnerable (comorbidities, fragile health already, etc) --- collect family history, anecdotes, foibles etc. Doing so makes those being asked feel worthwhile and also lets their memories, experiences be gathered for safe keeping in case later they contend with an active case of COVID19. [Sadly I doubt this is a project many PwME could undertake.]

 

On my personal Facebook page I am looking at reviewing old photos to create cheering posts that hopefully spark conversations that are unconnected with current stresses. My first go was a post of orchid photos taken in a Tokyo botanic garden a number of years ago. It was well ‘liked’ though did not provoke much discussion other than with the people I was travelling with. My second go was some new photos of my elderly frail cat enjoying today’s sunshine in the garden, which generated more conversation.

We have had to learn to take pleasure from small things, and the here and now. I have a whole series of photos of my bedroom window. Also when most confined I have enjoyed the photos others sent me from around the world. So I am looking to see how I can share that with others, via social media and via emails.

I am also developing a rota of people to contact in various ways, though need to find a balance as I am still recovering from having over done it on Sunday with two long phone calls and a long FaceTime conversation all on the same day. So I might have to restrict the more open ended contact and focus on things like messenger and Facebook that can be done in smaller doses.

Perhaps also we could look to find new ways to share with our regular contacts. I have a 99 year old cousin who is largely housebound bound, and her daughter lives at a distance. But they use the same app and account to read books on their iPads so they can read the same book at the same time and know what page the other is at. There must be lots of possibilities of other things like this to help people feel connected when in isolation.

Then there are the various online games, I use a Scrabble app a lot. It is a way of being connected that can be as intense or as sporadic as you want.

When we first set up our village website quite a few years ago we started a village novel, where people took turns to write the next chapter/section. At the time it was well received and ran its course over a couple years, however now could be a good time for social groups to engage in such collective writing projects.

 

I saw a thread on Twitter (but forget completely who it was by) that was a pwME who was sharing tips for living in isolation, it was really helpful and supportive.

 

I'm finding it difficult to not just react like "yes, you CAN cope with a few weeks isolation. I've coped with it for two years. And you have the energy to phone friends and do whatever you want to at home. Stop whining and deal with it." But I know that's not really a fair or kind reaction...

 

On the one hand, I completely understand. The losses associated with temporary self-isolation seem trivial.

So many M.E. patients have been homebound or bedbound for years, and dealing with so many difficult/painful symptoms on top of that. Patients have lost jobs, friends, and sometimes even spouses and family members who somehow doubt the symptoms are real. People can be truly clueless and cruel when it comes to a lot of chronic illnesses! (although M.E. is even less understood than most)

But on the other hand I do try to be charitable. Everyone (and I mean everyone on this planet) has had at least some kind of loss. To them, in that moment, the loss feels painful. Does it make it less painful to them if their loss is less than someone else's?

Just to give a quick example, years ago my husband said something about feeling guilty about being sad or angry over something, and then telling me about it, when he sees how much I've gone through.

I immediately told him that it was important for him to share his anger or grief with me no matter what!

First, because we have to share these feelings with those we love. It's important that we are there for each other. It gives me a good feeling to be able to support him in this way.

But second, imagine if you were never allowed to feel sad or angry? Because, after all, there's always someone, somewhere in the world has it worse than you.

Imagine if the response to every child who falls down and skins their knees was not a kiss and a hug but a comment that they should be grateful it's not a fatal illness? Imagine if the response to every person who loses a job was, well, it could be worse, at least you're not homeless and sleeping on the street? Or in some war torn area being bombed?

So, of course, we all have feelings, and feelings are complicated. It's hard to not compare situations. Sometimes people really are overreacting and moaning over minor things. But at the same time it's natural for people to be sad over their losses. It helps me to try to see it from their point of view. (I can't always do it, but it helps when I can)

Just think of all the weddings and graduation ceremonies that will be cancelled. Or perhaps they had been saving for months/years to go to a concert, or go on vacation, and now that has been cancelled. These losses are not life or death, but they can still feel sad.

 

There were suggestions to use #MEAwarenessHour to do that. Great idea.

Great opportunity to put some perspective on the whole "must be great to be at home all the time!" thing, while people are experiencing it and can vouch for that very real fact that, no, absolutely not, it is in fact very much the opposite of great so keep that in mind while you're going stir crazy after a few days.

 

Inside - A Guide by Josie George
http://www.bimblings.co.uk/2020/03/15/inside-a-guide/

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