Saturday, 5 January 2019

ME Tips: Dealing with Events and Excitement

Hello my lovely loves!

Today I wanted to talk to you about events and the negative side of excitement. I’m pretty sure all Spoonies will already know what I’m talking about, but for most people, it’s rare that excitement is seen as a negative.

I remember seeing a video where someone was talking about how to use excitement to potentially stop a panic attack. The idea was that the adrenaline released during fear and excitement isn’t any different, so by telling yourself you’re excited, not anxious or frightened, you can redirect that feeling into something more positive.

Long time readers will already have noticed a problem here… for an ME sufferer or anyone with an energy condition, adrenaline, no matter why it’s produced, is a one way ticket to Payback Town. Too much excitement can steam roller you just as effectively as anxiety, and, in my experience, it’s a lot harder to control.
That knowledge can set off it’s own anxiety, fully aware that you’re wearing yourself down but clueless how to stop it. It can quite easily spiral from there.

The problem is that there are plenty of tools set out to deal with fear and anxiety, precisely because they’re viewed as negative, but bugger all for dealing with overexcitement.

I spent most of my post on How to Enjoy Media as a Sufferer talking about ways to lessen the impact of adrenaline to make it easier to to deal with film and TV. I’m going to attempt to do the same thing here, but with a rather large caveat... I’m still learning myself. This is one of the hardest things I find to do. 
I’m naturally very excitable and enthusiastic, and I always enjoyed being so. I used to physically shake every Christmas morning because I got so excited.

I hate that I have to reign in such a large part of myself, but it’s only through years of letting it run wild and then being unable to move for weeks or months I’ve accepted it’s best to try and… tone it down a bit. That way I can actually still enjoy some things, instead of being so overcome I just end up in bed before I get to do anything.

I know it might seem a bit odd writing this after Christmas when it would’ve been more useful before, but a lot of stuff I hadn’t had a chance to try out before. Every year I sit down and think about what might help next time, so a lot of this is fresh off the press!

So here are some things I’ve found useful to deal with events and the excitement that comes with them. Some are specific to Christmas and the festive season, but others could be used more generally.


Warm Glows, not Fireworks

To start this list I thought it might be best to talk about what to aim for. I don’t want you (or myself) to not enjoy things anymore, that’s not the point of this, but I do want to try and enjoy them more gently.
The way I try to think of that is that I’m trying to enjoy the warm glow of a banked fire, rather than the explosion (and immediate fizzle) of a firework. 
No offence to Katy Perry, but being a firework is not useful. 


In this (rather laboured) metaphor everyone else is some kind of magical firework that either just keeps on trucking, or continually turns itself on again like one of those joke birthday candles. 
Spoonies are regular fireworks and will just lie of the ground until a disgruntled and slightly hungover person comes along and sweeps us up with an old broom. Nobody wants that.

Try to aim for that warm, snuggly glow you get when you’ve got a hot drink and a comfy seat in front of a fire on a bright, lazy Sunday. It’s a much more sustainable type of enjoyment.




Mourn

It’s okay if the thought of having to do things more slowly makes you angry or sad. Nobody wants to limit themselves or the way they enjoy things, and it’s not fair that we have to.
Have a cry, have a rant, shake your fists at the sky, whatever you need to do. This illness takes a lot, and every time it has I’ve had to have a small meltdown before I pick myself up and find a way to make things work. Occasionally those feelings come back even if I’ve found workable solution. That’s normal, so give yourself that time.


Avoid comparisons

I've spoken before about  how the worst thing you can do is compare what you can do now with what you could do before you were sick. It’s also the most difficult thing not to do, especially with lots of friends around telling you all the things they can still do that you now can’t.
It's doubly difficult around milestones like birthdays and Christmases, and even other people's events like weddings.

Since it’s virtually impossible to stop comparisons completely, try to limit your comparisons to the worst periods of your illness, or when you knew less about managing it. Yes, you could do more before your illness, but last year you could only listen to one christmas song, and this year it was three.
Last year you tried to go to the door every time there were trick-or-treaters and this year you have learned something from that and let someone else feed ridiculous amounts of sugar to children in face paint. 


A period not a day

One of the things I’ve noticed helps me most is trying to think of Christmases or birthdays, or even Halloween, as a period of celebration rather than a day. 
Focusing on a single day tends to compress all that energy for me much more, a bit like focusing light through a magnifying glass. As we’ve discussed, it’s better when things don’t burst into flames, so thinking of “the Christmas period” or “my birthday week” takes the pressure off significantly, so I don’t wear myself to a frazzle waiting for a specific time to have fun.

Last year this meant I kept my advent calendar downstairs instead of in my room to get used to this idea, but this year I managed to keep it in my room without it making me focus on a day so much. Instead I tried to enjoy each day as part of the Christmas period which just happened to include having a small amount of chocolate every day before breakfast. Oh no. What a shame.


Spread things out

You have the perfect excuse to make your fun times last longer, so take it. Spread out activities over the week, or month, instead of trying to shove them all into a day or two.
Decorate for events early so you have time to a, recover from decorating, b, enjoy the decorations longer, and c, allow your brain and emotions to become more used them so you don’t get overwhelmed or too excited when lots of other things are already happening.

See friends and family before and after an event so you’re not too overwhelmed on the day itself.

Even consider spread out present opening over a longer period of time so you’re not too tired. (Although if you’re the kind of person who’s excited over presents builds with suspense this one probably isn’t a good idea.)

If there’s anything extra that needs to be done, like presents for Christmas, then take spreading things out to a ridiculous degree, if necessary. 

I like to make Christmas presents for people, but after years of getting stressed about not being able to do it easily, I’ve started making them a year in advance. That way I get to enjoy making things for people, and doing it during the Christmas period without feeling stressed. It’s something that really helps me cultivate that warm glow we’re going for, without any ensuing anxiety.
I do the same for any Christmas cards I design.


Prioritise 

You will inevitably want to do all the things. You also are extremely unlikely to be able to do all the things, at least without seriously damaging yourself. 
Prioritise what’s actually important to you and have two lists, what you want and feel capable of doing, and what you’d like to do if you have the energy.
Focus on the first, and if there’s any spare energy for the second, brilliant. If not, then you still did things you really wanted to do.

It’s better to plan small and then surprise yourself with something extra you weren’t sure you could do, than to plan too much and stress yourself out too much. It’ll also help prevent that unpleasant, roiling mix of excitement and anxiety. 

This leads us to...


Be honest with yourself

When prioritising be honest with yourself about whether you actually want to do something, or if you feel you should. Those are not the same things, and you should not put pressure on your health to do things you don’t want to (or have energy for) because of other people.
I know that’s easier said than done, and there’s a lot of pressure from friends and family, especially at Christmas, but you’re sick, and your health comes first. You’re the one who will have to deal with the fall out, not them, so you’re the one who gets to decide how that energy is used. It is not your fault you can’t do certain things.

Similarly, actually try to be honest with yourself about what you can sensibly manage. This isn’t a particularly fun exercise, but it’s one of those occasions where you need to think in terms of long-term rather than short-term. You’ve got to get through this event, or season, or whatever, so you need to be honest about what you can conceivably manage.

Being a bit more honest should help keep the excitement more manageable too. Be your own mum, even if you need to huff about it like a teenage stereotype.





Be honest with other people

Once you’ve worked out what you can manage, you need to tell other people. 
I’ve had a number of Spoonie friends be bullied into doing more than they can manage for events because they weren’t open with how their condition effects them, or their friends didn’t understand. They were often left bed-bound for a long time afterwards.

Please allow me to express myself fully using this helpful GIF.


These people are your friends and family. They care for you. If it’s your birthday then they’re literally celebrating you. You are entitled to ask for their understanding and help in celebrating in a way that if manageable for you.
If the event is for a friend, especially an able-bodied friend, then you are still allowed to ask for either a way to make it manageable. If there isn’t one, it’s okay to ask for an alternative date where you can celebrate in a way you are capable of without ill effects.

Self-preservation is not selfishness. It is not your fault you are sick. If people kick up a fuss then they need to be informed in no uncertain terms that you’re the one who will dealing with the aftermath, which is often lengthy and painful.
You would never ask someone you care for to suffer pain or severe impairment just because you wanted to do something in a certain way, and real friends or family members should never ask the same of you.
They have flexibility where you don’t, so allow them to use it and offer them the chance to be a good friend.

It’s also worth reminding people that you need to know in advance about events and visits, and that surprises are only good if they don’t use energy.

If they’re still hesitant then refer them to a blog like this one, suggest they ask questions of the ME/CFS community and their carers and friends online, or any of the ME charities who offer advice.
Even just reminding them that there are thousands of people who have the same problem should help, let alone hearing those people back you up.
And we will back you up. Seriously. Send them our way, and we’ll tell them.




Plan B

When making plans for events always have a plan for what to do if you need to stop and rest, change things to help, or go home. Have several. 
It’s not being pessimistic, it’s being sensible, because if you suddenly start dropping you’re much less likely to be able to make new plans or decisions.

Before I understood this, Mum and I once split up to go into two different shops. (This was before I was housebound.) We agreed to meet outside Superdrug and then walk to the car. I started to drop and had to abandon my shopping, but Mum wasn’t done with hers, and so wasn't at the meeting point. I didn't have my phone.
Instead of either going to the bench several shops down (which admittedly was quite far away), or into the cafe opposite where I could watch the street, I wandered back and forth between the car park and the meeting place, steadily using up what little energy I had. 

It wasn’t deliberate, it was because we hadn’t discussed what to do outside of the one option of meeting and my brain fog was so severe that I literally couldn’t think of any other options. I had used all my energy and there was none left for coming up with another plan. 
I knew we’d discussed “outside Superdrug", and “the car”. So I just wandered aimlessly between the two until Mum finally found me about ready to pass out.
The other options hadn’t occurred to me until Mum asked me why I hadn’t done them.
It was not a pleasant round of Payback.

Have back up plans. Then back up those back up plans.


Know your triggers

This may seem obvious, but bear your triggers in mind when deciding what events to attend, and forming your back up plans.
Knowing that your light sensitivity gives you really bad brain fog is important when you’re planning on going to a place that may involve flashing lights, for example. *coughcoughChristmas*

Knowing your triggers means you can plan around things that don’t work for you, and come up with back up plans for if they can’t be avoided. Like having sunglasses with you to deal with the lights, or earplugs to cut out background noise or loud music.


Leave space in your calendar

Again, this seems like an obvious one, especially given what I’ve written so far, but give yourself plenty of days off around all your events.
For one thing, you need time to recover from your events, especially if you’re spending extended periods in a state of excitement. 
For another, certain times of year mean that no matter often you tell people not to, someone is going to “just drop by”. 
Extra days off give you a fighting chance to deal with uncertainty.


Go with the flow

With any event there can be a strong pressure for things to be “perfect”. I’m not sure that feeling has ever done anyone any good.
Your birthday does not have to be perfect. Christmas does not have to be perfect. Not even a wedding has to be perfect.
Putting so much pressure on yourself is only ever going to make people anxious and stressed, and mixed with excitement it’s a dangerous cocktail for an ME sufferer.

This year we found our turkey was off on Christmas morning. In years gone past I might have got upset about that, but, in the grand scheme of things, what does an off turkey matter? We didn’t eat it and get sick. We had lots of other lovely food to eat. We were warm. We had a beautiful tree and thoughtful presents. We had each other.
Yes, it was annoying, but pressure for things to be perfect just means that if something does go wrong you’re less prepared to deal with it. If you’re not careful it can cast a pall over the whole day, and what’s the point of that?

Learning to go with the flow, and laugh about these situations is so much more relaxing. Besides, Mum and David managed to barter their money back, a free bottle of bubbly and £50 for the ME Association, so it all worked out pretty well in the end!
Try to relax about things and enjoy them for what they are, not some mystical gold standard which is impossibly to reach for a healthy person, let alone a Spoonie that already has a lot to deal with.

If you have to do things a day, or even a week, late, so what?! You’re still doing them, and that’s the important thing.


Relaxation tracks 

Make sure you have your favourite relaxation tracks ready to go. My favourite apps are Relax +, and Mindfulness by Digipill.




I also listen to tracks made specifically for me around remaining calm at Christmas by my Hypnotherapist, Juliet Emerson. If you have a hypnotherapist then perhaps they could create something similar for you. (If not, and you'd like one, Juliet is lovely.)

I mentioned last year that I was working on trying to get more resources made for dealing with overexcitement. I’m still working on getting Juliet to put her stuff online - she’s brilliant but a bit shy, but she recognises there’s a massive gap in the resources for this, so I’m pretty hopeful there. Once I’ve managed to convince her I’ll link the tracks here.
She’s much more likely to be able to do one for overexcitement in general as well, rather than just something geared towards Christmas.

I also spoke to Andrew Johnson last year, and he said he’d consider put something in his upcoming app, Holistrio.  I checked this year, and it’s there!
If you download the app (which is free), there are two tracks in the “relaxation” section. They’re both called “Relaxing Holidays” and one ends with a sleep finish, and the other with a waking up finish.



They’re not specifically about overexcitement, but they are about getting through the festive season calmly, and enjoying it without getting overstressed whilst trying to get chores done. They’re definitely worth a listen, especially as they’re free!


Tapping and EFT

Tapping or EFT can also be a good way to work through emotions like excitement. You can look up tutorials on this online, especially on You Tube, although I’ve yet to find someone to explain as well as my no-nonsense Scottish psychologist.


Sleep health 

Sleeping when dealing with excitement or anxiety can be really difficult, so just try to do your best and be healthy with it. 
Go to bed at a regular time where possible, make sure you’re comfortable, have sleep meditations at the ready, and don’t be afraid to ask for sleeping tablets if you need them.

Despite doing much better with my excitement this Christmas, I still put aside a sleeping tablet to take on Christmas Eve. I know myself well enough to realise that, no matter how calm I’ve been, that’s always going to be a difficult night to get to sleep on.

I’ll be doing a full post on sleep health soon, so keep an eye out for further tips.


Reflection

After the event and its payback has passed, sit down and think about what worked and what didn’t, both in terms of excitement or anxiety and the event itself. 
When you next have an event coming up you can keep what worked, and try new options for things that didn’t. Eventually you’ll get a working plan that’s adapted to you, and the whole thing will become much easier to deal with.


Cut yourself some slack

If there's one thing to bear in mind, it's to cut yourself some slack. You're doing your best, and some things are easier to manage than other. And, as the Great Turkey Debacle of 2018 has taught us, sometimes things just don't work out how you planned.
That's ok. Just take a deep breath, and keep on trucking.



Hopefully this guide will be helpful to everyone who had to deal with ME/CFS, or other chronic illnesses. If you have any tips yourself, or things you’ll be trying, feel free to leave them in the comments!


H

3 comments:

  1. Such a good article, Hannah! So many fresh tips and insights :)

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  2. This is relatable on so many levels! Brilliant tips and advice, will definitely be sharing. Hope today's as kind as possible to you xx

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  3. Thank you so much for sharing you're awesome tips & instilling some self belief.

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