Monday, 18 March 2019

My response to the "ME Trolls" Headlines

Hello my lovely loves,

This month I've delved back into the slightly intimidating world of YouTube and created a video as a response to the many articles (and, latterly, radio segments) accusing ME patients of forcing researchers out of the field by being in some way dangerous, or unintelligent, or anti-science. 

We all know, of course, that this is complete bollocks, and the only science we dislike is poorly done, unethical science. That does no one any good.

I wanted to create something as a direct counter to these pernicious articles, so people who have only heard about ME and the PACE trial from it's authors and supporters might gain a little more understanding as to why we're so against it. And show myself as a normal ol' sickie, not a "militant activist".

So for your delight and delectation, here is 15 minutes of my face at a truly atrocious angle trying to explain to people why we're not dangerous, or stupid, or anti-science.

Please excuse the choppiness of the edit, but I spaced out too often or repeated myself (yay brain fog!) that I would've gone far beyond the 15 minute content limit for unverified youtube accounts. I may create an outtakes video of me getting confused - I think that could be quite funny.

Enjoy.

H






Links listed in the video description are as follows.


The Parliamentary Debate on ME/CFS 

(You can also watch and download from the ME Association's website

Dr Tuller's many blogs on the PACE trial

My blog on the PACE trial

Research links (via ME Association, but with links to the original published work in the articles)

Dr Cara Thomas - Energy production and mitochondria in ME patients

Dr Jarred Younger - Suggested brain inflammation in ME patients

Kings College - Overactive immune response in ME patients

Open Medicine Foundation - Red blood cell abnormalities in ME patients

Linda van Campen and Frans Visser - Cardiac anomalies in ME patients

Prof Ian Lipkin on why ME is not psychosomatic and info on his research

Thursday, 28 February 2019

TH is back! - or - A birthday tea.

Just squeaked in before the end of the month to let you know that Tiny Hannah is back! And today she went for afternoon tea with my Mum, Aunt, Cousin-in-law and my Aunt-in-law.  (Relation-titles are confusing and difficult.)
It's Mum's birthday tomorrow so they went to Congham Hall for a natter and to stuff themselves with cake - as is right and customary.

In any case, I haven't been up to much writing-wise, so I'm hoping I'll ave something a little more substantial for you next month. In the mean time, enjoy!

(And Happy Birthday, Mum.)

H

Gotta dress the part.

Post noms.

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

Friday, 7 December 2018

Cause and Effect piece

Hello my lovely loves!

I've been sitting on this one for a while so it's amazing that I finally get to show it to you! My piece for Cause and Effect magazine.
Amnah, the editor, is also a sufferer of ME and contacted me about doing a comic to illustrate how it feels to have it.
I'd had a little idea in the back of my head for a while, so this was the perfect opportunity to realise it.

You can buy Cause and Effect here. It's a limited edition hardcover book, and you get to choose your own cover design from a selection of three, which is awesome. (I went for the pink vintage ladies - it reminds me of a Wes Anderson movie!)

Without further ado, here's my piece.

For more of my illustration work head to my other blog, hannahradenkova.blogspot.com.

H


Friday, 2 November 2018

Halloween costume 2018: Poirot

Hello my lovely loves!

I think a lot of you have probably seen the Poirot costume I made for this year's Halloween, but I thought I'd share with you the behind the scenes work that went into it, and how I made the different components.

It took me several months to create the whole costume bit by bit, and I started planning it pretty much straight after the Halloween before.

Pince Nez

I bent some wire I had left over from making Tiny Hannah 
into the correct shape using reference photos.


I then cut a shorter length to go across the top of the glasses, 
and created a loop to attach the cord with a thinner wire by 
twisting around several times and bending the end into a loop.

I secured the wire together and added nose cushions and other details 
with Sugru - a plasticine-like glue substance that dries like rubber.


I spray painted the whole lot gold with some spray 
paint I had left over from another project.


I added some spare thin ribbon from my trimmings stash for the cord.


Cane

Poirot has a couple of cane options but I thought the silver swan swan was the most iconic.

My parents had to take an old broken clothing rail to the tip, 
but I saved one of the short black poles from it as it was a good 
width and length for a cane.

I created a disc of Sugru and stuck it on the bottom to stop the cane 
scratching the floor and to act as the grip.

Using tin foil, I crumpled it into the basic swan shape, 
and stuck it to the top of the pole with a glue gun.


I covered the whole thing in air dry clay that I had in my art stores 
from a different project, and, using reference photos, shaped 
and carved the clay as close as I could to the original.

(I realised halfway through that doing it with old clay was a 
mistake because it was quite difficult to work with, but... ah well.)


When the clay was partway dry I rubbed over the 
whole surface with a plastic tool to smooth it out.


I covered the bottom of the pole with masking 
tape, and spray painted the swan silver.




Moustache

The moustache is something that I really wanted to get as realistic as possible, so I watched a few YouTube tutorials on wig making to learn how to make lace front wigs.

I bought lace, and a wig making needle from eBay, 
and pinned it to the mannequin head I'd bought to work on the wig.
I used left over hair from the wig to lace the moustache.

(Lacing wigs is weirdly soothing, but extremely frustrating 
to do with very cheap synthetic hair in poor lighting. 
If you do it I'd recommend better quality hair, and a good lamp.)



Once it was laced, I parted the tash in the middle, held it with bobby pins 
and gently heated the strands with my heat embossing tool 
to reset them into the direction I wanted.

(If you do this be very, very careful. Synthetic hair can burn 
or melt completely into an unusable mess, so go slowly.)


I coated the moustache in a layer of pomade, and pinned it into the shape I wanted.
I then used the heat tool to reset the fibres into the new shape.

I finished off by giving the ends and any fly-aways with a layer 
of clear PVA glue to smooth it, and trimmed the excess lace 
away so it was ready to be worn.



Wig

The wig was by far the most time consuming and difficult part of the costume.
Balding wigs are really difficult to come by, and the decent ones 
are very, very expensive, so I started off with a black crazy professor 
wig from eBay that cost about £3. 
It did not look good.


Look at this mess.


Using a tangle teezer I attempted to brush 
through it to get rid of any knots.


I then modelled it like the badass I am.



Section by section I straightened the entire wig 
using my hair straighteners. And praying.


It was still a bit terrifying but no longer quite so awful.



I cut it using my hair dressing scissors and thinning scissors I use for my own hair.


I sewed extra hair in layers onto the wig net,
 as the cheap wig didn't have lower layers.


Starting from the back, I worked section by section and slicked the hair back into an approximation of Poirot's hairstyle using PVA, hair gel, and heat.

It took aaaaaaaages.


But looked so much better than when I started.


Unfortunately at this point I realised that a. the head I was using is 
much smaller than mine, and b. I have a truly ridiculous amount of hair.

The wig went on my head, but not over the entirety of it, 
leaving a line all the way around the back uncovered, 
and the lower part of the hair at the front visible as well.

I had a short swearing session.

Then I ordered an extra cheap hair weft from eBay, and cut a black 
felt shape from my felt stash that would hook over my ears to create 
sideburns and carry on round the back of my neck to cover the rest 
of my hair as much as possible.

Using the sewing machine and a zig zag stitch I sewed layers of 
hair to cover the felt, with larger section at the 
sides to slick back over my ears.



I applied leftover lace to the very front and 
created a more natural edge with lacing.


This hair piece then got the same PVA/gel/heat treatment as the other wig.


As I had spare hair left over from the wig alterations I decided to root some 
baby hairs into the vinyl to make the balding look more realistic.

This is achieved by using a felt needle (yes, I also have those laying 
about), and stabbing it to the vinyl through a lock of hair 
to push it through to the other side.

Thanks again to the University of YouTube for showing me how.

Below you can see the harsh original edge on the left, 
and the feathered edge on the right.


I added more and more hair, using reference photos to get 
it as close as I could to David Suchet's Poirot.


I then secured the hair in place by gluing it with a hot glue gun.


I added lace along the front to help anchor it in place whilst it was being worn. 
In hindsight this was probably a mistake because it made the 
edge messier, but I was concerned about my hair proving 
too much for it, even with the added hair piece.



Nose

I'd never made makeup prosthetics before but I knew I'd
struggle to mimic David Suchet's nose with makeup, because mine 
is such a different shape to his.

After researching online (YouTube and Reddit both get a mention here)
I decided to make a hollow liquid latex application.
The other options were too time consuming and/or expensive.

Using plasticine I first started building onto the mannequin head.


I create a new nose that was as close to my own as I could get it.

Most people would just make a cast of their face to skip this 
step but I couldn't afford it, and it seemed quite energy draining.


I then made a practice nose to try with the liquid latex I'd ordered.


It worked! But I also realised from this not to use heat in 
between coats, and to sponge on the latex rather than using a 
brush or spatula.


Once I was happy it was going to work I started building 
on the nose I had made to make Poirot's nose.


I then sponged on layers of latex, let it dry, 
powdered it and peeled it off.

It was then coloured with a mix of acrylic paint
mixed with liquid latex and face paint.


Special mention: Spats

Technically I didn't make these, but I'm bringing them up because Mum found me original 1920's spats at a flea market for £4, and that's worth mentioning.



The final application:

In the morning I started by changing my eyebrow shape and colour with makeup.
I then tried to make my eyes look more hooded and added crow's feet.
Then it was nap time.

After lunch Mum helped me apply the wig. 
First we stuck the lower piece on using spirit gum, and then we pinned 
(and stuck) the upper piece.
I started adding foundation and contouring my face to match Suchet's,
leaving the nose and upper lip blank.

I also stippled a wash of grey eyeshadow to my jaw to simulate a shaved face.

I stuck the nose on and sponged a layer of latex along the edges 
of the nose and front lace, and across the bald patch of the wig to make 
the texture more like skin.
I followed with a layer of the acrylic/latex mix I saved in an airtight 
container to blend the colours and cover the latex I'd applied.
(This also made the colour of the bald patch more realistic.)

Finally, I applied the moustache with more spirit gum.


I had another rest before suiting up and was joined by 
Captain Hastings and Miss Lemon.



After about five minutes of photos I was knackered
so I took it all off an went to bed!


Mum had to help get all the makeup off while I lay down!

I'm still pretty exhausted, but it was totally worth it.

H