Some tips for dealing with isolation

 

I did a little chat to video for my healthy, mostly able-bodied friends because crips like me are old hands at handling isolation so we can share some tips that might help. [Hmmm, Tips from Crips, maybe that should’ve been the title? Crip Tips?] Aaaanyway, then my friends all asked to share it so here it is in written form because the audio was not always that clear…

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Admittedly it’s initially been hard to deal with the healthy folk not coping with their, what is to us, very brief and temporary isolation with their mostly functional bodies. We’ve continued at the periphery being referred to as ‘other’ through the “only” the vulnerable will die phase, then people buying everything leaving the vulnerable without, then people not staying at home to protect the vulnerable and finally only doing so when it seemed to be important to them personally and now they are at home and we’re finally being risked less – we’re hearing a lot of complaining about how awful it is being stuck at home temporarily whilst able-bodied.

And I’ve shared about this for insight because healthy people can look at their current experience and try to imagine what that’s like as a forever situation because that could mean more awareness and care for people like us out on the periphery, but what I don’t want is for people to feel shamed into hiding their frustrations because ‘so-and-so has it worse’, that’s not helpful at all. Your frustrations are valid, even though we’re jealous of you because even in lockdown you are capable of all the things we would like to do at home but either struggle to do at all or simply can’t.

Picture of a tiger growling underwater with the text: "When life gets harder...you must have just leveled up"

When life gets harder, you must have just leveled up!

But we do have a lot of experience dealing with isolation so…

First of all – yes, being stuck at home sucks. The early stages are particularly potent as we go from living a faster paced life to what feels like a standstill. Over time you’ll settle into it more but let’s see if we, the long isolated chronically ill lot, can help with that transition at all.

Not all of our experiences are relevant to you. When we first found ourselves where you are we had lost our identity because we could no longer work (amongst all the other things we could no longer do) but what we do for a living is key because that is how we’ve been raised to define ourselves. The standard “and what do you do?” question that we get all the time because the assumption is that everyone does something, and we do, but what we do doesn’t ‘count’, as it were. Even after no longer being able to train for a career, work to earn an income, do the things we used to do and go out to see friends, go on excursions, to events etc we still don’t actually do “nothing”. Our time is filled with pain and symptoms and finding ways to cope with that on top of the frustrations of not being able to do stuff. So we will spend hours trying to build our body up to trying to get some food, trying to have a shower etc.

This is obviously not how your time is being filled. You are mostly able-bodied, used to being on the go and suddenly find yourself stuck indoors. You’re most likely really frustrated and because you can’t go out you and we’re all only human, you are probably wanting to do all the things that involve going out.

So here’s the trick, and when we (the chronically ill) get told this initially it sounds really  offensive until we understand it better but as you don’t have the health issues getting in the way it might make more sense to you earlier on…the trick is… “acceptance”. <shudder>

Yes it sucks. We haaaate this one! But the key is that this is not about ‘giving in’, not at all, it’s simply about acknowledging the parameters of the situation because once we’ve done that we stop bashing our heads against them and are freed up to think about what we can do within those, admittedly sucky, crappy, horrid parameters.

So…seeing as you’re stuck indoors, what is there indoors that you could do?

Yes, all the cleaning and DIY etc

But, also

Who are you? What do you enjoy? What have you been putting off or not getting round to that you’d like to do or try? Not work related stuff. You related stuff.

Who were you before the adulting?

Art? Books? Writing?

This is your time. To be you. Indulge in yourself.

We try to do this but it’s hard because we mostly still struggle to do any of this stuff. Managing to get to the toilet has to come before doing something for us. And doing something for us always renders us in more pain/with more symptoms etc so it ends up being a rare thing indeed, but you have this opportunity here because you’re not restricted like we are. I’m not saying ‘ooh look we’re worse off than you’, what I’m trying to say is… you have the opportunity to really run with this in ways that we can’t. This could be pretty awesome!

At first it kinda feels like you’re at school and have been told it’s ‘indoor play’, ugh!

The trick is to re-frame it – it’s not so much like indoor play – as getting to go home early! You can play, it’s guilt-free time to just ‘be’. And you can do it in your house with all your stuff. So be you.

No-one else will see… your drawing, your poetry, your writing, your new attempts at recipes with the random ingredients you’re having to work with! No-one will see your home-made videos (unless you choose to share any of these afterwards of course). No-one will see your fort (oh yes, adults can totally make forts too). The decision is all yours.

One key tool that we use is not to look too far ahead into the future. So rather than looking at the potential weeks at home stretching out ahead of you the trick is to think of a thing you’d like to do and focus on that instead. We rarely know what day of the week it is because unless we have a doctors appointment they are basically the same Groundhog Day over and over. If we acknowledged the days going by without us we’d be a forlorn mess. All those people living their lives when we no longer can. In this instance though you’re not getting left behind because everyone is in the same boat. Or most people anyway. Most people are having to isolate and not do what they usually would be doing. So you have an opportunity to play without getting left behind.

Re-focusing helps with worries about the future as well. Income is a concern for many. We understand this concern, it is ever present in our lives and unless we could step back from that we would never cope. We don’t just block it out, what we do is what we can for now – get that set in place. Then what is out of our hands is out of our hands. Worrying about it would send us doolally with the stress about the resulting impacts that would bring. So once we know we’ve done all we can for now, we step away from that as well and consciously focus on something else. For our own sanity. This is crucial. Do what we can then shift focus.

Stopping to notice the little things. People don’t usually do this unless they’re are on holiday. It takes some time to wind down and slow down enough to do this. Work on it. Have a cup of tea, look out of the window, notice the sounds, the feels, acknowledge anything that you like. Let it make you smile. These little things pass us by usually but when we’re isolated they become a quality part of our lives.

Keep in contact with others. You’re used to seeing people every day and suddenly it’s not happening. The silence can be deafening. Check in with friends. Send messages, silly pics, make video calls, have a laugh. Contact friends who live alone or are chronically ill, the former are currently extra isolated and the latter are always isolated and are suffering from years of this. You will make their day just by saying hi. Trust me!

Keep some semblance of routine though so that your body doesn’t rebel too much. Sitting around in jammies all day is okay for the first couple of days but then we really need a focus or things can easily slide. If they do that you can find yourself without a coherent sleep cycle or decent nutrition and if you do get ill your body may not be so ready to deal with it. So keep clean and get dressed, have mealtimes still, look after your body and be you.

So to re-cap, some tools we use:

  • Accept the parameters (they’re shit, we don’t get to choose them)
  • Re-frame it as an opportunity
  • Don’t look to far into the future: prepare as much as you can for eventualities and then re-focus
  • Get in touch with who you are on the inside, regardless of job, positions in society etc
  • Look for possibilities within those parameters that might make you smile
  • Take time to pause and notice the little things
  • Keep in contact with others (we have the technology)!
  • Keep a routine so that your body has enough sleep, nutrition, exercise etc

So…what do you feeeel like doing? What do you have in the house? Are you gonna put a tent up in the garden and listen to the birds? Are you gonna do some drawing in secret just for your heart’s content? Do you feel in need of putting on some music and having a really good dance-like-no-one’s-watching moment? Awesome! Do it! Not sure what your focus will be yet? No worries, stick the kettle on and have a think. That’s part of the process. Rediscover who you are on the inside and allow them out to play. You might find one thing you want to do or you might find lots of little things along the way. You might prefer to make gifts for other people to make them smile. It’s all good. Let your inner you take you on an adventure.

xx

 

 

 

Coping with ‘still’ being disowned

Family has to have a broader meaning or I wouldn’t survive. I put on a good front but what silently rips me apart everyday does so even more relentlessly at this time of year. So many of my fellow patients have also been disowned by members of their family, courtesy of neuro’ symptoms and the resulting accumulated misunderstandings. It’s a horrific ‘norm’ but I never thought my family would be that kind of normal. We were so close for so long. Two family members outright believe I’m some kind of opposite of me, one has never said what they think but hasn’t acknowledged any messages or even my basic existence since the others disowned me. One definitely knows I’m still me and I am blessed to have them in my life.

Family is those we care most about and who cares most about us. Some of those I care most about think bizarrely incorrect things of me which is a daily torture I struggle with. But the rest of the people in my life know who I am and their (your) mutually reciprocated love and care is what helps me to keep going. Thank you. For just being you. I love you being you.

Like many other patients I keep thinking that one day this nightmare will end. That those three members of my family will wake up one day and remember that I’m me but after, what is it now? Five or six years? I try really hard not to remember how long it’s been. After this long I have to find a way to let go of the need for that to happen whilst still keeping hope more generally. I have to find a way to stop the ‘why? wtf? how-is-this-even-possible? argh! I-can’t-cope-with-how-wrongly-they’ve-got-me’ going round and roouund my head each day.

Pain of confusing loss, broken heart

I live by distraction. It’s a chronic illness tool for survival which I try to apply to this kind of pain as well. Distraction is the only way I keep going in this regard but at this time of year when Magic Dude is at work and I can’t phone my Mum to wish her a happy Christmas because she’d hang up on me over stuff I don’t even understand, well, it’s a whole new level of hurt and confusion.

There’s aspects we hang on to in the hope that an answer will magically appear. In my case I’ll likely never find out what the confusing conversations were taken to mean. They were during my neuro’ downslide which was reducing my processing so swiftly that none of us stood a chance of finding out about that before it affected communications and interpretations. And why hang onto that? Even with the med’s that I have now I can’t read the explanatory email because my fight or flight still responds by trying to make me pass out. I actually tried to reply to that email in the beginning. We often try to deal with things as we would have pre-illness because we don’t realise at the time how cognitively compromised we can be. I made that mistake. I would read one paragraph then battle not to pass out and then, once I was vaguely upright again, I’d attempt a reply to that one paragraph without realising how severely my processing was being affected. It took me three months to write a reply because it took so many days to recuperate after reading each paragraph. You’d think I’d have cottoned on but I just thought it was the extreme distress causing it. I’d never been disowned before, but I’d never been so cognitively compromised before either.

To this day I have no idea what was in the email I received or the one I sent and as I can’t read either without getting severely symptomatic I have to accept that I am unlikely to ever know. And I think this is the issue for so many in this situation – we never get to resolve it, we never get to correct each other’s misunderstandings. It remains an open case. There’s no real understanding of how this came to be, it just happened one day out of the blue and that’s why we struggle to find a way forward. Because it’s not just the loss, it’s the fact that the loss seems so random and inexplicable. Being unaware of any comprehensible reasons for such an extreme life decision makes it a lot harder to accept and cope with. And that shock never seems to go away. Every day it slaps us in the face again. Having a faulty nervous system sucks.

One thing I do manage though is to hang onto what was. Before the inexplicable. Maybe that makes it harder in some ways but it definitely makes it easier to not implode entirely. I remember when Mum knew who I was. All those years, all that love, all those shared experiences – they are not erased and they’re not changed to fit with my new reality. They are a part of me and of my journey to who I am today. Admittedly who I am today was also massively impacted by being disowned but I do not have to let go of those good memories to deal with the confusing past few years. The good and the bad times are not mutually exclusive, they can co-exist Shroedinger style. Which can also be upsetting as the contrast is so extreme. But it forces me to look at the now. What I want from life in it’s current reality. And prodding me to keep focused on the present is no bad thing at all. That’s where life gets lived after all. I want to fill it with smiles and goodness.

So in each moment – what would help with the smiles thing? If I find I’m a bit stuck… planning housey stuff and sketching ideas (refocuses my mind to positive developing stuff), arty stuff (currently embroidering my first ever home-made curtains, they’re gonna be the prettiest bodge-job ever 😉 ), playing Lord of the Rings Online (it’s currently the Yuletide festival on there!), Facebook (connections with friends), online ‘window’ shopping (pretty stuff!), sometimes I can handle some music (maybe something enthusiastic like Florence and the Machine’s ‘Dog Days are Over’ or perhaps something beautifully chilled like Stevie Ray-Vaughan’s version of ‘Little Wing’ or delightfully nervous-system-calming like Ry Cooder’s ‘Dark is the Night’). What would your go-to list be? And would it be helpful to have that list up somewhere so that you can see it when your nervous system is raging or the thoughts are circling endlessly round and your cognition needs a helping hint?

This post was prompted by the first acknowledgement of my existence in aaaall this time by that one family member: today they removed me from an old message group. So I guess I finally have my answer on whether a) they wanted to have contact but felt caught in the middle, or b) it has been their choice to avoid me all these years. Maybe that’s helpful. I’m not sure yet. Maybe that’s one less question to drill into my soul each and every day.

I wanted to share my experience with my fellow patients so that you know that you are not alone. If you’re struggling with this kind of loss I want you to know that I ‘get it’ and I’m sending love and hugs. I am open about my loss, my distress, my confusion, my ongoing attempts to cope all these years later because this kind of stuff happens and I want you to be able to talk about it if you need to. It’s okay to talk about it. A common misnomer is that loss and grief get ‘better/easier with time’ whereas it’s really that we get better at coping with it. Of course it can be difficult to get better at coping when you’ve got a faulty nervous system that freaks out the moment that big-stuff-subject pops into your head. Hence that handy list of calming in-the-now stuff.

Getting my feelings down in writing also kind of helps. When this stuff begins to devour me I need to get it out somehow. The process naturally makes me re-assess my approach and behaviour which helps me think about what I need to work on next to better cope with the loss and confusion. There’s plenty of research on how writing can be helpful. If you need to talk and there’s no-one around at the time it’s another option to get those endlessly whirling thoughts out of your head. Maybe give it try. Poetry can be pretty cathartic so don’t be afraid of different types of writing. Write like no-one’s ever going to see it because no-one ever has to.

If this post makes you feel any better, any less alone, then hopefully you now know that it’s okay to feel how you feel. This is no easy or quick fix. We are complex beings even without the chronic neuro-illness complications. But it’s okay to feel and it might help to get some of those feelings out, whether that’s onto paper or with a trusted friend. You don’t have to bottle it up.

And if you know someone who is struggling with the impacts of chronic illness on their family attachments (or indeed struggling in any way). I want you to know that just by listening, by acknowledging, just by being you – you make a difference. There’s no need to encourage them to talk endlessly about things, (with conditions like mine that could actually rile up the nervous system even more), just being an ear and then being the much loved distraction that you are helps enormously.

Wishing you smiles and goodness,

Sending love to you all, xx

Photo Challenge for CRPS Awareness, Day 13

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 13 – A picture of how you cope

Oblivion elf

I don’t usually play console games because I get reeled in and lose hours if I do! But when I am in real desperate need of distraction this is my ultimate past-time to help get me through. It demands attention, but does not have to be challenging. It allows me to do it from whatever position I’ve had to end up in to try to ease my physical pain, but most of all I found that this is the only thing that helps me get through a major emotional pain such as a massive loss.

This is my Elven character from the role playing game called ‘Oblivion’. I’d love to go back to it but I always have far too much to do. Occasionally Magic Dude and I will spend an evening playing a two player game, but otherwise I just don’t play at all. But…. I always know it’s there should I ever need it again. I reeaally helped me get through a terribly painful time in my life that was particularly distressing and nigh on impossible to function through for the first two years.

Thank-you technology!

Here’s a post I wrote last year about getting through tough times and dealing with fear… This too shall pass

x