Monday, 25 September 2017

Making a Tiny You: Part 2

PART ONE ~ PART TWO


Hello again! And welcome to part two of making your own Tiny You. Today we'll be making your doll's arms and legs.

Hopefully by now you’ll have go the hang of the blanket stitch, but this is where we start sewing…


11. Adding Magnets - as I’ve said on the previous post, having magnets in your doll is optional, so just skip this bit if you’re not going to be doing that. It can be tricky, especially because needles are usually magnetic and will get stuck to what you’re trying to sew, but the results are fun. It’s up to you.

To add magnets to your doll, you first need to make little pouches for them to be held in. This will make it easier for you to attach the magnets to the doll.

Cut two small felt circles, slightly larger than your magnets. (You basically have to leave a seam allowance like you did with the pattern pieces.)
Hold the two circles together and start to blanket stitch around the edge to attach them. When you have stitched about halfway, slide the magnet in the pouch you have created and continue stitching until you complete the circle and the magnet is completely enclosed. Repeat for all the magnets you’ll be using inside the doll.
That feeling when you create a non-terrifying diagram.

Tiny Hannah has one magnet in each hand and one in each temple.

Once you have your magnet pouches, sew them in place on the inside of your arm pattern pieces where the palm would be. Felt is great because, due to it’s texture and thickness, if you’re careful you can sew them in place without it showing on the outside.

Palm magnets completed.

Note: if you want to make it so the hands of your doll easily touch, make sure you take the poles of the magnets into account when sewing them into place.
You can do the temple ones at this point if you like, but I waited till I was working on that area.


12. Using your bradle or sharp pencil, make holes in the top of your arm pieces, ready for the teddy bear joints. You may need to widen the hole in the same way you did for the safety eyes in step 6. I doubt you've forgotten the horrifying diagram I made for that step, so I won't bother reusing it here.

I'm so glad I bought a bradle. It makes this so much easier.


13. Push the pegs of the teddy bear joints through the hole of each arm. DO NOT ATTACH THE REST OF THE JOINT YET. Once teddybear joints are snapped shut they don’t reopen, so you need to wait until most of the rest of the doll is done.
On a roll with these non-frightening diagrams


14. Adding wire to arms - skip steps 14-16 if you’re not adding wire.
Assemble your wire, cutters, pliers, and arm and/or leg pieces.

The tools of the tiny trade.

Measuring against your arm pieces, cut a piece of wire and curl each end inwards to create a loop; a larger one at the bottom (the”hand”) and a smaller on at the top (the “shoulder”). Repeat step. These will be your arm “bones”.

Wire arm bones


15. Using your sugru or similar, stick the smaller shoulder loop onto the top of the teddy bear joint peg. This will stop the bone sliding around inside the arm and potentially damaging the felt.

Sugru not shown. Obviously.


16. Carefully sew the hand loop in place to stop it shifting. A blanket stitch could work here, but as long as the hand won’t move about it doesn’t matter too much.

Use a flesh coloured thread if possible. 
I just used black on her to make it more visible.


17. Your arm is now ready for sewing and stuffing. Fold the edges of your felt together so the bone, joint and magnet is hidden. Start your blanket stitch, and, as you sew, add stuffing bit by bit. It’s easier to stuff as you sew than to try and push stuffing into the toy later. You can use your pencil or cradle to help you stuff the toy.

Frustratingly I don’t have any photos of this stage, probably because I’d never done it before and I was concentrating too hard, and it's not really something I can easily draw, but here is a video where this stage is shown. The right part is at 0:49. 
The limb should feel relatively solid when you've finished. The more to push it with a pencil or bradle the more it'll compress.


18. Adding wire to legs - optional steps 18-19.
This step is tricky and I wouldn’t blame you if you gave it a miss. I decided that I wanted my doll to have proper soles so she could wear proper shoes, which made this a lot more difficult, because the wire had to be shaped like a leg, ankle and foot. 
If your pattern doesn’t have foot soles, you can just use a loop technique like I did on TH’s arm wires.
This is the shape I came up with.

Yes. I did do a version of the Charlie Chaplin fork dance

I looped the end into an elongated oval, that was slightly smaller than the sole piece. The loop was twisted closed where the heel would be and then bent forward slight to give a more definite heel. This also allowed the ankle to be slightly further forward. 
The leg then extended up, and was bent at the hip towards the other leg. All of this was just measured against the felt pieces as I went.
Ideally I would want both legs to be made of one piece of wire, but I felt the chances of me getting that right on the first try were too slim, so I made them separately. 


19. If you decide to go with this shape, then, once you have the basic leg wire shape, sew the foot wire to the sole piece to stop it moving about and provide a more solid foot. 
(At this stage the images of the wire inserts will be white. I covered them in tape thinking they might be visible through the felt if I left them metallic. This step is unnecessary. I’m so glad I spent a good hour doing it for Tiny Hannah...)

The cunning reuse of the same diagram. No one will know.


20. Using blanket stitch, sew the sole of the foot to the leg piece. I found it easiest to fold the leg piece in half to find the centre, and place it on the heel of the sole. Then stitch from the heel round to the front. Repeat on the other side until the entire sole is stitch to the leg. Repeat on the other leg.

This is probably the point where you'll realise making tiny 
accurate feet was rather ambitious. It's certainly when I did.

There may be a little fabric left over from the leg piece at the toe. That's fine, you can trim it off. 
If there's not enough fabric you can either cut out leg pieces with longer toe sections, or make a little triangle (like a thin slice of cake) and add it into the gap.


21. Ready your stuffing. Start stitching from the toe to the top of the leg, and stuff as you go. Remember to stuff all the way round the ankle and leg wire to try and keep the “bone” in the middle of the leg; it’ll help to keep the wire from shifting too much or rubbing against the felt. When you reached the top of the leg, leave the very top with only a small amount of stuffing.



Take your time and go little by little, especially around the fiddly toe piece. This is pretty much the last difficult bit. It'll get easier from here on out.


22. Your leg should look like this.

Leg, with trimmings from the toe.


Pinch the the top of the leg so it lies flat, with the leg seam in the middle. The wire should also be roughly in the middle.



23. Trim any jagged edge of the felt, and sew the leg shut. Repeat on the other leg.




24. Lay the legs against the back piece of the doll, so the edges of the leg lines up with the edge of the hip. If you have wire inserts, bend the wires up where it meets the edge of the doll.



25. Trim the wire and bend it back in on itself until it forms a loop.



26. Stitch the legs into place on the back. You can use a blanket stitch, backstitch, or any secret stitch you fell comfortable with. 
If you have wire inserts, sew them together in the middle by looping round them and then sewing into the felt until it feels fairly secure.

That feeling when the tricky part is done!


Your doll’s limbs are now complete! Next time: completing your doll’s torso.


PART ONE ~ PART TWO

Tuesday, 19 September 2017

Making a Tiny You: Part 1

PART ONE ~ PART TWO


Hello my lovely loves!

Regular followers of my blog doubtless know about Tiny Hannah and her adventures, but, for those that don’t, Tiny Hannah is a small felt version of myself that I sent in my stead to visit friends and family.


It was really getting me down that there were so many important events in my friends lives that I couldn’t be a part of, so I made her to go in my place. It really takes the pressure off knowing there’s a representation of you acting as a placeholder while you’re not well.
Here are some of her adventures.

TH is currently in America, and there’s plans to send her on to friends in Canada after she’s visited all my American friends. 

I’ve found having TH to send to friends really comforting, and my friends have been amazing about her, so I thought that other Spoonies might like to make their own version of themselves to send to places when they’re not able to go.


You will need:

A Pattern: I created a hybrid pattern for Tiny Hannah using one that I found on the internet, and one that I purchased on Etsy. The first had moveable limbs, and the second had a less childlike body shape and a facial aesthetic that I preferred. 
Here is the pattern I used, which you can print for yourself. There are two different leg/foot sizes, and different body shapes included.



The Etsy shop doesn't appear to sell doll patterns anymore (which is a real shame, because they were awesome), but here is the blog post including the free pattern which I also used as inspiration. The video tutorial included in the post is a must watch too; it really gives you insight into the construction of dolls like this.


Felt - A skin tone, a hair tone, some different colours for clothes. 
(Wool felt is generally more durable, and comes in a wider variety of colours, but can also be more expensive. I use acrylic based felts, because I’m allergic to wool, and working with it for longer periods of time makes my hands raw.)


Embroidery thread - Regular thread is a bit thin and could probably tear felt relatively easily, so it’s best to use embroidery thread. 
If you buy your felt from a shop then usually the assistants can help you match the colours. I tried to buy mine online but it’s very hard to colour match over the internet; in the end Mum went in to our local craft shop and enlisted the help of the lady there.
Embroidery thread appears rope like, but in fact comes in six strands that you divide up to use two at a time.
If you do use normal dressmaking thread, double it over so you’re using two strands at once to lessen the chance of tearing.


A needle - It will need to have an eye large enough to thread two strands of embroidery thread through it. Embroidery needles are a thing, so look for those if you’re not sure what to go for. If you have the option of buying more than one, then do. You’ll lose the needle at least once during the process.
(When you do I recommend shining a light on the area you dropped it to make it easier to find. It’s not the kind of thing you want to stand or sit on later.)


Pins - In some cases it may be easier to hold what you’re sewing together, but for cutting out pattern pieces, and sewing tiny clothes, it’s best to have some pins on hand.


Scissors - Fabric scissors are best, but as long as they’re sharp, and have pointed ends, it’ll be fine.


Safety eyes - I used 15mm black eyes for Tiny Hannah.


A sharp pencil.


Plain paper sheets, roughly A4, for templates.


Paint for facial features - I used acrylic paint, but you can use a special fabric paint if you really want to.


Soft toy stuffing


Teddy bear joints (yes, that’s what they’re called) - this is if you want to be able to move your dolls limbs. They usually come in packs of five, but Tiny Hannah only has two; her arms use teddy bear joints but her legs are just wire. 
If you wanted to get fancy you could even make the head of your doll separately and attach it with a teddybear joint so the head turns. I was slightly worried mine would end up like something out of The Exorcist so I didn’t bother.


(You don’t have to do teddybear joints if you don’t want to - you could technically just make a front piece, and a back piece and then sew them together without any separate limb pieces at all - but for the sake of this tutorial I’ll talk as if you are making moveable arms.)


Optional: Fabric glue - can be useful if you’re less confident with stitching fiddly things, but not suitable for the main body of the doll. I used glue when putting the finishing touches on Tiny Hannah's hair.


Optional: Bradle - A stabbing tool useful for making eye holes, and showing toy stuffing who’s boss. You don’t have to have one though. A pencil works fine in a pinch.


Optional: Wire to make posable limbs - it took me ages to find the right strength and thickness, and this is the one I recommend. You could probably use pipe cleaners in a pinch.


Optional: Wire cutters - For the love of God, do not use scissors on wire. It will destroy them.


Optional: Round headed pliers - you can get away with regular pliers, or with tweezers, but the best option are still jewellery pliers. They won’t leave dents on the wire, and they’re easier control.


Optional: Sugru mouldable glue or similar - used for attaching wire to teddy joints. If you’re not adding wire, you won’t need this.


Optional: Magnets to make magnetised hands and accessories - These are the magnets I used. Again, it took me ages to find the right ones. If you’re using magnets, make sure to keep them out of the reach of pets or children, as they can do serious harm if swallowed.
I used 5mm x 0.5mm neodymium magnets. You can go larger or thicker for a better span or strength, but I wouldn't go smaller. They smaller the magnet, the more fiddly they are to use. 
If I didn't feel one magnet was sufficiently strong I just stuck two together.

Extras: Snap fasteners for Tiny Clothes, ribbons, buttons, beads, trimmings etc. For decoration and for keeping clothes on your doll.



Making Your Doll

Okay! You have everything you need. Now on to making. Necessary steps are in bold, optional extras are not.


1. First things first. Cut out your pattern. You’ll need two of each piece. I had originally decided to do the ears separately, but later I decided the head of my doll was too big. When I cut down the head I left extra bumps on for the ears.



Here we have my pattern pieces, clockwise from top left, the ear, the head/body, the leg, the sole of the foot, and the arm.



2. Lay your pattern on your felt. It’s easiest to fold your felt in half, and pin your pieces to it. Then, when you cut the pieces out, you’ll have cut two of everything. 

(Try to arrange your pieces so they take up the least amount of space you can reasonably manage. 
It’s not a massive deal, but if there’s more fabric left over you can cut out extra pieces if something goes wrong.)

Materials are expensive. Use them wisely.


3. You’ll need to see if your pattern has already included a seam allowance. From what I can gather most toy patterns don’t - the ones I used didn’t, and if you’ve using the same ones they won’t. That’s fine. When you cut out your felt pieces, leave a bit of extra fabric all around the paper as I have in the photo.
Keep the scraps for now.

Despite appearances, there are actually two of everything cut here.


(3.5. For Tiny Hannah I was worried that the acrylic felt I had bought was too thin, so I cut out another layer of felt and stuck it to the original using iron-on double-sided interfacing. This step is pretty unnecessary, and I wouldn’t bother next time, but I’ll show you what I did to avoid confusion on why my felt changes appearances at this point. 

I cut out more felt pieces (this time not leaving the extra for the seam allowance), and the same pieces in double-sided fusible interfacing. I ironed the interfacing onto the new pieces, peeled off the backing paper, and then ironed the pieces onto the original. Ta-da! Doubly thick felt pieces.)

Unnecessary felt pieces, slightly smaller and a different colour.

Unnecessary ironing of interfacing.

Unnecessary (but pleasing) waffle pattern left by the tea towel
I sacrificed to stop interfacing sticking to the iron.


4. Lay all your pattern pieces on a sheet of paper so it roughly resembles your doll. Make sure to fold the leg and arm pieces in half lengthways when you do this. 

Line the arms up with the shoulders at roughly a 45 degree angle, slightly overlapping the body piece, as shown. 

I am an illustrator. People actually pay me to draw things.


Line the legs up with the hips, slightly overlapping the body and leg pieces, as shown. There will likely be a gap left between the legs: that’s fine, it makes it easier to make clothes.

Draw around the shape you have created on the paper. This will make it much easier for you to make clothes for your doll later. DO NOT LOSE THIS PIECE OF PAPER. It’s technically possible to work out sizing for clothes later, but it’s really difficult.


5. Mark the eyes on one of the face pieces of your doll. You can do this by eye, or by laying your pattern piece on top and stabbing through the paper with a biro or pencil. 


6. I used a tool called a bradle to stab a hole in the felt ready for the safety eyes. 

Stabby, stabby!


If you don’t have a bradle, a sharp pencil could work, or you can CAREFULLY cut a little cross over the pen mark you made, using the point of your scissors.

This is the most horrifying thing I've ever created.

This step will probably be much easier without the double layer of felt, or if you’re using wool felt. Wool naturally stretches more, and the interfacing I used is basically a mesh of glue, which stopped the hole from stretching.
I ended up widening the hole I made using scissors, by snipping little cuts into the top, bottom, and sides of the hole made by the bradle (like a cross). If you use scissors, cut a tiny bit at a time. You can always go back a cut more, you can’t cut less.


7. Add the safety eyes. You do this by pushing the eye through the hole in the felt, and then fastening the plastic washer on the other side. Suddenly your felt will look much cuter.

Left without washer, right with washer.

D'awwww


8. Draw your facial features onto your doll with pencil. You could technically do this before the eyes are in, but I found it much easier to get an idea of what size everything should be once the eyes were in. You can also add things like tattoos at this stage.



It’s up to you what look you give your doll. I decided to keep my doll more cute looking and forgo a nose. *Suddenly realises that this is the look Voldemort was going for all along*

The resemblance is uncanny.


9. Paint your dolls face and other features like tattoos. I used acrylic paint, watered down about half and half. If the paint is too thick it gets caught on the loose fibres of the felt and sits on surface, and you won’t be able to get a clean line. If it’s thinner, it’ll be much cleaner, but also sink more into the fabric, and become much less likely to flake off.

You might find the fuzzy fibres get in the way, so take your scissors and, laying them flat across the surface, snip away the loose fibres from the surface of where you need to paint. 
If that sounds confusing, imagine you need to cut a hair from your leg. You wouldn’t stab in and snip and risk cutting skin, you'd lay the scissors flat and try to mimic a razor. You’re basically shaving your doll’s face.

Once you’ve painted the face on the un-sewn head piece, your doll will now resemble an adorable fat-monster from Doctor Who called an Adipose, if an Adipose had kidnapped Kim Kardashian’s makeup artist.
For this reason I have named my own little felt Adipose, “Kim Lardashian.”

Kim would be proud of those eyebrows.


10. This is the last step on this post, and so far we’ve managed to avoid sewing, but I’m afraid this is where that changes. 
The next thing you need to do is learn how to blanket stitch. It’s pretty much the only stitch I used for making tiny Hannah. Have a practise on a spare piece of fabric before you start stitch your doll.

Here is a helpful tutorial on how to blanket stitch. 



Next time... we'll be making your doll's limbs!


PART ONE ~ PART TWO

Tuesday, 5 September 2017

Pre-Edit Telegraph piece

Hey lovely loves,

Just a quick one today. As it's one year since I had a piece in the Telegraph online, which was a reaction to scientists finding similarities between hibernation animals and ME, I thought I'd share what it looked like before the editors changed things around a bit.

Obviously, I prefer my version ;)

H



My first thought on being compared to a hibernating animal was one of amusement, because my ME certainly makes me feel like a bear with a sore head. I was less pleased when I learned that the specific animal in question was a worm, but the comparison of the Dauer state deeply resonated with me. The Dauer state basically allows these worms to survive and exist… but that’s about it. I can’t tell you how horribly close that comes to my life.

Whenever evidence like this come out, there’s always a mixed reaction within the ME/CFS commumnity. 
Firstly, there’s a strong desire to run around with the article shouting, “I told you so!” at the top of our voices, but, as we’re obviously too sick to do that, we have to settle with social media shares and extremely small, non-tiring fist pumps.
Secondly, there’s a feeling of relief. Finally, we might be believed and people might start to understand us more. It’s so, so tiring constantly having to try and explain or prove to people that what we have is a real, physical disease. Of course, mental illnesses are real too, but, as you can imagine, it would be beyond frustrating if you had a broken leg and got sent to a psychologist, or told that it was “all in your head”.
Finally, there’s fear. It sounds odd, but there’s always the fear that, despite evidence to suggest otherwise, people aren’t going to believe that you’re ill. There’s still massive stigma around ME/CFS, both publicly and in the medical field, and once you’ve been at the recieving end of that, you never, ever forget it. 
In some ways, being a compared to a worm is accurate, because, when people don't believe in my illness, that's exactly how they make me feel.

I had been working as a freelance illustrator as well as part-time in retail to support study for my Master’s degree when I got sick, and my working hours averaged around 75 hours a week. It rankles when people suggest ME/CFS isn’t a real illness, and that those who suffer from it are just malingerers or attention seekers, because I know very well that’s not true. I worked so hard for my life, I loved it, and it got taken away from me. My life now? It’s not what those doubters would think.

I’m 29 and I live with my retired parents, who are my carers. I’ve had ME/CFS for four years, and the last two of those I’ve spent completely housebound. I can’t work, watch TV, or listen to the radio, and I’m only able to see one of my friends once a month, for around half an hour. I get pains, and brain fog, and so many other symptoms, along with the constant, relentless exhaustion.
Two thirds of my day is spent resting in silence, focusing on my breathing, and relaxing my muscles as much as possible, so that I can function for the other third. Hibernation is a pretty apt term.
Every little pleasure and activity I’ve managed to fit into my routine I have fought tooth and nail for by using this resting regime, eating well (thanks to my parents, who prepare all my food), and waiting, little by little, for my energy levels to improve. 
I tried therapy, and putting “mind over matter”, but not treating my ME/CFS as a physical illness is what ultimately led me to become housebound, and it’s only through treating my illness as a physical illness that I’ve seen any improvement at all.

Every tiny activity has consequences now (even writing this!) but over time I’ve come to terms with that, and found ways to be involved in the world without being physically present. 
I write a blog to keep my friends updated and give advice to fellow sufferers and their families, and I even made a tiny version of myself in doll form to go to events like weddings and birthdays in my stead.

It’s a difficult life, but I’m still fighting, and it’s always fantastic when any evidence is uncovered to support ME/CFS as a physical illness. Especially when I get to say… I told you so!

Friday, 1 September 2017

ME symptoms & tips: Enjoying media content with ME

Hello my lovely loves!


One of the things I've struggled most with during my recovery is not having the energy to watch TV, films or read.
I used to be an avid reader, loved film nights, and would watch any crime drama going. Basically, I'm a sucker for a story.

Having ME/CFS has seriously impacted that because the stimulus provided by media content is exhausting, and would often mean I'd get overstimulated and not be able to sleep.

However, not being able to distract myself from my situation at all wasn't helpful for my mood, so I've slowly worked out ways to allow me to enjoy far off places and new characters without completely wiping myself out.

With my resting ratio slowly allowing me to recoup more energy and heal, I've been able to go from only being able to read small amounts on my phone (and no TV or film whatsoever) to being able to read the occasional physical book and catch up on some of the programmes or films I've missed over the last few years (even if it means I have to do it in manageable chunks on my phone).

Here is what I've learned so far.


The sympathetic nervous system

The first and most important thing to understand is that your body doesn't understand the difference between fantasy and reality. You do, but your body doesn't.

Your sympathetic nervous system is the part of your body that deals with fight or flight (and the less mentioned, but no less important freeze). When you're in danger it's this part of your body that triggers an adrenaline response, and allows you to react in a heightened state to protect yourself. It's linked to emotions like fear, aggression, anxiety and excitement.

The key thing is, this response can be triggered regardless of whether the danger is real or not. It's kind of a evolutionary "better safe than sorry". Better that you realise that the shadow in the corner is just a coat on a chair (and not an assailant) after you're primed to deal with danger, rather than spending time assessing and having to summon the response in the potentially critical first moments.
That's why people get frightened and feel jumpy during and after a horror movie, and that's why a fight scene puts you at the edge of your seat. Your body is responding to a potential threat.

Pretty much all media content makers use this reaction deliberately to manipulate the viewer's response. After all, the whole point of a story is to get you to feel something.
The storyline itself is obviously one way of doing this - an emotional response to the character's plight etc - but with film and television, the way the images are shot, edited, and given sound is all specifically designed to make you react in the strongest possible way.

This is not inherently a bad thing. Frankly, it usually makes for a bloody good story, and people's sympathetic nervous systems are constantly in a state of flux anyway, so it's not usually damaging.
The problem comes when your body's reaction to adrenaline is skewed already; in this case, because you're ill. 
Most people can calm from an adrenaline response quickly, people with ME/CFS however don't seem to. There's all sorts of theories as to why that is, depending on what people think causes ME, but for the sake of keeping this post as succinct as possible, I won’t go into it at the moment.

In any case, adrenaline responses use up massive amounts of energy and they suppress the body's ability to rest and heal.
(This is one area where psychological tools are actually useful for ME patients, because they can keep you calm, and teach you how to lower your adrenaline levels. The lower your levels, the easier it is for the body to heal itself.)

It stands to reason, therefore, that the best way to be able to enjoy media, of any kind, is to lower the chance of an adrenaline response, so you use less energy.


Suspense is your enemy

You’ve doubtless heard of Alfred Hitchcock. Much of his success is owed to him being the “Master of Suspense”. He was amazing at keeping his audiences at the edge of their seats, just by drawing out an unresolved plot-line at the perfect rate. From our point of view, that’s a extended adrenaline response.
If you don’t know what’s going to happen, but there’s some form of foreboding that tells you something will, then it’s going to trigger your fight or flight response, and you’re going to be flooded with adrenaline. 

It’s probably really going to annoy you that the best way to counter this, is to find out what happens, before you watch/read/listen to your media content. If you know the basic story outline, it prevents such a dramatic adrenal response, and is therefore much less exhausting.

Basically, you need to read spoilers. 



Film and TV are fairly easy to find, especially for more mainstream offerings. Books are more difficult. Again, famous ones often have a breakdown online, but a book that’s just been released is difficult to find a synopsis for. I really wish there was a website dedicated for this, because there’s been a number of times where I’ve had to wait to read something until someone is kind enough to make a wikipedia page about it’s storyline. 

Frankly, this sucks, because, for me, half the fun of a good story, is not knowing the ending. (Unless you’re one of those strange people who likes to read the end of a book before starting.)
But, if it’s a choice between knowing what’s going to happen and being able to watch an episode of Game of Thrones, or not being able to watch it all, then I know which one I’m going to choose.

It also helps with this next tip.


Bite size chunks

I used to regularly stay up most of the night reading a book, unable to put it down until I found out what happened. Obviously, now this is a MONUMENTALLY BAD IDEA. I need sleep or I’m not going to be able to function at all for several days, and I’m going to feel awful the whole time.

It’s much more healthy for sufferers to break up your books, shows or films into manageable chunks. It gives you time to process what you’ve taken in, and allows you to rest more, so you won’t get overstimulated. (And hopefully that means you’ll be able to sleep more easily.)
This is really difficult to do, because if you’re enjoying something, you want to keep on enjoying it. Fortunately, finding out the basic storyline gives you a couple of advantages for this.

1. If you already know roughly what’s going to happen, you’re not going to lie in bed all night wondering what’s going to happen. We’ve all been there.

2. You’re much less likely to want to read/watch things all night. There's no need. You know what happens.

3. You'll know a good place in the storyline to stop. Like a checkpoint in a video game. I generally try to stop whatever I’m reading or watching on a high. There’s no sense in feeling thoroughly depressed until you next start up the story again.

It'll take time, and trial and error, to work out what is the amount of media you can manage at one time, and in one day/week, without getting overstimulated. I started at about 5 minutes at a time, for no more than 15 minutes a day, and then slowly increased it over time, with that help of the other tips I've mentioned.
I can now watch up to three hours in a week (although frankly it’s often much, much less than this), split into sections of different times depending on how I’m feeling and what I’m watching.

It differs depending on the type of content; reading may be easier or harder for you than watching something. Listening to music will be its own monster. Again, the genre will have an effect on that too.

I can read on my phone more than I can watch programmes or films (again on my phone), and I can watch more than I can read physical books. I can do all three more than listen to music. Radio is still a no-no, especially talk radio, but I don't have to instantly leave a room where a radio is on as often now, so I'll take that as a win. (I seem to do best with visual cues basically.)


Work with your resting ratio

Similarly, if you’re using a resting ratio (and I’d really recommend it), then make sure to try and stick to it when you’re watching or reading. It can be incredibly difficult when you’re really into a story, but it’s worth it in the long run. 
Set timers if you struggle to remember to stop and rest.

As time goes on and you get stronger, then hopefully you should be able to watch or read and listen in longer and longer stretches.


Emotional response 

Something that you also have to be aware of is your emotional response to a story or to music. 
Everyone has at least one film that completely blindsided you with emotions; those films that left you feeling completely drained, and quite possibly depressed, for days afterwards. 
Mine is City of Angels. It took me several years to forgive my Mum for encouraging me to watch that cry fest. Although, to be fair, she hadn't watched it either, and I don’t think she was anticipating the raging ball of tears and snot I became during that film. 
Even that paled in comparison to my response to the His Dark Materials series by Philip Pullman. I cried so much after the Amber Spyglass I actually wrote a new ending and wedged it in the book to make myself feel better.

Emotions, like your fight or flight response, use energy, so if you’re feeling a bit tired but want to watch something, choose something light-hearted rather than Angela’s Ashes or something.

Also, if you’re a sufferer of ME/CFS, you’ve already got quite a lot on your plate, so think about what kind of thing you actually want to watch. I thought I might use my time housebound to read the classics, but most of them are desperately sad, and I don’t really want to deal with unhappy endings at the moment.
You might find an angst-fest cathartic, and that's fine, but just be aware of what you’re signing up for, and that it's probably going to take more energy.

I started with clips of my favourite comedians and went from there.


The devil you know

When starting back into media content, or attempting to enjoy it on a more regular basis, it’s better to start with old favourites. You know the story, you’re familiar with the emotions it evokes, and you have that lovely sense of seeing an old friend. It’s basically all of the enjoyment with none of the added stresses. 

As I said, I started off with clips from comedians I know and like for TV, and for books I chose Harry Potter. Because I could probably explain the plot of all seven books word for word at this point.

It was also a great test for me to see what sort of level I was at. I knew how long it would’ve taken me to read the series before I got sick (less than a week), so knowing that it took sixteen weeks allowed me to estimate my functioning level at the time.

The strangest thing is my actual reading speed hasn’t decreased. I still read very fast, but the amount of time I’m able to read without getting sensory overload is much, much shorter. Before I could read an entire book in one stretch, but now I’m lucky if I can do 15 minutes without a break. Brain fog hits and then the words stop making sense, even if I was able to speed read 5 minutes prior.

Over time I’ve been able to slowly watch longer clips, and upgrade to watching short sketch shows. The leap to film was a bit more difficult, but I broke the Muppet Christmas Carol into pieces and watched as much as a I could. 
The first year I tried I couldn’t watch the whole thing, but last Christmas I finally managed it. (I then had the Marley & Marley song stuck in my head for about three days, but that’s par for the course.)


Quality film at it's finest


Timing

Most ME sufferers have a time of the day that they feel slightly more able. It’s good to work with this time, but it’s not necessarily going to be the best time for watching TV or film, or even reading a particularly exciting book. 
Even though my most energetic (lol “energetic") time is the afternoon, I try to watch anything exciting in the morning, and definitely not after early afternoon, because I need time to process what I’ve taken in. If I haven’t finished watching I’ll save it for another day.
If I try and watch something too late in the day it’s still running though my head when I settle down and I find it much more difficult to fall asleep. 

Physical books have a little more leeway for me, but I still leave them downstairs when I go up at night. I can read on my phone before bed, but I tend to stick to short stories or things I’ve already read in the past.
I also avoid news before bed, because I don’t want to get really angry at things before I have to sleep, or I’ll just lie there mentally lecturing various people on why they’re wrong instead of resting.


Try not to multitask

I used to put a DVD or music on while I worked constantly before I got sick. It allowed me to sort of zone into this wonderful state where I’d be relaxed enough to get loads done, but also let me feel like I wasn’t doing much at all.
This Does Not Work with ME/CFS.

In my experience (and probably in yours) attempting to split your attention is a one way ticket to terrible Brain Fog. To me it feels a bit like two completely different songs are playing really loudly at the same time, and I can’t do anything except want to put my hands over my ears until they stop.

If you know that you have the same issue, great, but you should probably make other people aware of that too. 

If you’ve got a loved one who likes to ask you many, many questions about various characters in a show, or tell you about their day when you’re watching a film, then you’re going to end up feeling awful when you try to concentrate on two things at once.

I know it’s difficult because you don’t want to seem rude, and that’s fine. But the person you love needs to understand just how much of your energy gets used for a task like this. 
Explain the song analogy, maybe show them this post if you want (hi!), but only being able to concentrate on one thing at once is not your fault, and it doesn’t mean you don’t want to spend time with someone or hear about their day. 
You just need to hear about what Keith said to Janet in Accounting at a time when you’re not also watching pictures flash in front of you, trying to follow a character’s emotional journey, and listening to a soundtrack specifically designed to make you reach a state of fight or flight.


The Importance of Eye Movement

Something that I stumbled across that’s been really helpful, is limiting the amount of eye movement you have to do in order to enjoy your book or TV or film.
I spoke before about how when you’re in a car you’re not aware of all the tiny little adjustments and decisions you’re subconsciously making to compensate for (and anticipate) the movement of the vehicle, as well as the sensory input of the world rushing by. This is similar.
The more your eye has to move across a page or a screen, and the more that’s in your peripheral vision, the more tired you’re going to get.

You might not consciously be thinking about the words on the opposite page of your book, or the plant stood next to the TV, but your brain is going to be constantly trying to make sense of everything around you, and that uses energy. Your filters are compromised and anything extra will tire you.

There are a few ways to combat this.


1. When watching something, try it on a smaller screen.

I can’t watch things on the actual TV yet. Even the strain of watching things move across the entire width of my laptop screen is tiring.
I watch things on my iPhone, and I’ve slowly begun to watch short You Tube videos on my iPad Mini, as a way to eventually make it onto larger screens.  I’ve also bought a portable DVD player to eventually use for my much neglected DVD collection.
The plus side for this is that smaller-screened devices generally cost less. The downside is that most people have massive TVs. It’s something to work towards though!


2. Keep a calm space around wherever you’ll be watching media. 

If you are able to watch on a larger screen (good on you!) don’t have too much around the TV, especially anything that moves. Extra movement is definitely going to draw your attention, and split attention is a recipe for brain fog. 
Shut curtains if you’ve got a pathway outside where your TV is. Shut windows to stop breezes moving things. Do what you have to do to watch that episode of Midsomer Murders.


3. Cover extra words on a page.

Get a piece or two of thick black paper or thin card, and cover the page you’re not reading. You can even cover half the page you are reading, so you can only see a few sentences at a time. This is what I did to train myself to be able to read physical books again.
Black paper isn’t necessary, but it recedes visually, so it’s easier for your brain to ignore than white or a colour. It also won’t show any of the words through it.


4. Wear headphones

Whether you’re watching something or listening to music, it’s much easier to concentrate on what you’re doing if you can’t hear other things around you. Again, splitting your attention is going to tire you much more quickly.

5. Accessibility features

Lots of devices for reading have great accessibility features that allow you to change the background colour, font, text size, and even reverse the screen so you see white-on-black, instead of black-on-white. 
Play around and see what works for you. When you get sick and have to read something, you realise how much of a difference a good layout and an easy-to-read font makes.


Doing these things made a genuinely massive difference to me, and I can’t recommend it enough if you’re trying to enjoy more media.


———


So that’s what I’ve learned so far about trying to enjoy media with ME. I really hope you found it interesting and, more importantly, helpful. 

May you never miss another episode of Game of Thrones.





H


Sunday, 25 June 2017

ME Symptoms and Tips: Period Problems

Hello my lovely loves!

Tarantino Time. The Communist Manifesto. The Red Wedding. Lady Macbeth's Travelling Sideshow. No matter what you want to call it, pretty much every proud uterus owner has a love/hate relationship with their periods.
Unfortunately, that's a relationship that only gets more complicated when you're an ME/CFS sufferer, so this time we're discussing what happens, and what can help make things run a little smoother.


Furthered fatigue
Periods are pretty tiring, and leave you with a general feeling of "oh god, why?!", but when you're already barely functioning that can quickly become torturous.
For me, I drop in energy levels between 5 and 10% on the ME scale once a month without fail. Given that I'm only around 18% on a good day anyway, that does not leave me with a lot of wiggle room. Earlier in my recovery I would be bed bound for a week out of every four. (The joys of a long period and a short cycle.)

My experience is pretty common, though. Things tend to go one of two ways for ME sufferers; either your periods feel ten times worse than they usually do, or you stop having them all together.

There's some debate about which is worse, but I'm just going to go ahead and say they are equally crappy for different reasons; the former because it puts your energy levels (and therefore recovery) back every month, and the latter because worrying about your condition is enough without having to also think about potential fertility problems.

For me, I'd rather have bad periods than no periods, but obviously it depends on the person. Some people suffer so much they decide to have hysterectomies because their periods effect their energy levels so terribly. That's pretty rare, but it really gives you an idea of the effect periods can have on someone suffering from another condition.

Even though male sufferers have their own set of troubles, I do feel a little jealous that they don't have to deal with the constant peaking and troughing of periods. Particularly as it becomes incredibly difficult not to trough everything edible in sight once a month.


Considering contraception
A common decision for sufferers is to go on contraceptives to prevent periods and give the sufferer a break from the hormonal fluctuations.
Unfortunately, given the myriad of options, and the sensitivity to medications a lot of sufferers have it can be difficult to find something that works.
If you're already on one that works for you, you have a major advantage.

I did try to go on the pill myself to have a break from the relentless hormonal rollercoaster, but the one I tried made me violently ill every night for the week that I managed to take it. 
I decided not to try more options at the time, because I didn't feel like I was at a level where my body could take that kind of knock on a regular basis, but I might in the future, and it is something that helps a lot of sufferers.
To be honest, I was just so tired after a week of vomming that walking around like a geriatric John Wayne after a prostate exam once a month seemed like the more appealing option.


Period pain
One thing I do struggle with a lot more is period pain. I'm not sure if it's actually worse, or if I just have less energy to deal with it, but it's like my body's decided to invest in a small scale industrial digger to have a go at excavating my insides.
I don’t think it helps that I’m not able to distract myself from the pain as well as I would before, simply because I don’t have to energy to.
The cramps usually triggers IBS as well. Gut problems are common during periods even for non-sufferers, but IBS is particularly common in those with ME/CFS. The combination of the two usually leaves me attempting to wrap myself in as many soft things as possible, while everything from ribs to knees does the Skywalker yodel like it's 1980. 



(Or 2005. I guess it depends on your Star Wars meme preference.)

By the way, if you've never experienced a period, but have experienced IBS, the two don't feel that different (in my opinion); one is just lower down. I always wonder if the clenching feeling of the period cramps trigger the gut into its own peristaltic contortions.


Painkillers 
You have to be careful what painkillers you use when you’re a Spoonie. Some medications don’t have much effect on ME/CFS sufferers as they would otherwise, and some have more, so try things, but do it carefully.

It's common for Spoonies to be on antidepressants, but being on certain types of antidepressants can make your body more acidic over time. This in turn can make your stomach more sensitive to certain painkillers.
I'm on Citalopram, so I'm not allowed to take anti-inflammatories, like ibuprofen and aspirin.
I always used anti-inflammatories for pain before I got ME/CFS, and paracetamol doesn't have much effect on me, so I once tried to deal with a particularly bad period by alternating the two painkillers. 
It irritated my stomach so much that it triggered gastritis, which was excruciating. Take my advice, and do not piss about with anti-inflammatory painkillers when you’re on antidepressants. No one wants to live on plain liquidised porridge for a month whilst waiting for their stomach to heal.

The doctor did prescribe Naproxen (a common drug used for more stubborn period pain) but after the lingering stomach sensitivity from the gastritis it didn't work out for me. That's not to say it doesn't work for many, many people, so if you have severe cramps, it's worth discussing with your doctor. They may also prescribe Codeine.
I usually rely heavily on small doses of paracetamol, hot water bottles and the foetal position.


Pacing for periods
One thing I would say to sufferers is this: if you know your period takes it out of you, remember your pacing and try not to do too much around that time. 
Use a period tracking app if you want (or an old fashioned calendar, whatever works for you), but try to give yourself a couple of days before or after where you can take it easy.
I try to make sure I don't have any visits from friends or medical appointments on the first two days of every period because those are the worst ones, and I know I'm completely useless on those days. Those days are for hot water bottle worship and swearing.


Up your iron intake
If you are losing blood you need to make sure you have the means to make up what's lost, particularly as ME/CFS means you're potentially going to struggle getting the nutrients you need from your regular diet at a normal rate. 
Eat more red meat, have some dark chocolate, or, yes, eat more spinach.
I know a sufferer who has steak every month. It sounds mental, but I genuinely find it helps. I do the same thing after blood tests.


Try heat and cold
As well as the more traditional hot water bottle, you can also try cold packs to deal with cramps, especially if you’re a sufferer that runs hot instead of cold. A friend who has fibromyalgia always uses this method; it was recommended to her by some nurses.
I personally prefer the hot version, which is why I say...


Three cheers for Eduard Penkala 
Every month I give particular thanks to Slavojub Eduard Penkala, the inventor of the modern hot water bottle. He also had a pretty epic moustache.


Thanks, dude. I owe you so much.


PMS
It’s entirely possible your PMS will be worse, because you’re more tired and less able to deal with it. That’s perfectly normal, so just be kind to yourself.
Put an alert on your phone a few days before you’re due to start so you know why you randomly started crying at videos of cats on the internet.



If you're not gifted with the joys of periods and are just reading this to be supportive, firstly, thank you, and secondly, please cut your sufferer some slack. We're sorry if we cry on you, or get really angry about something ridiculous. We're just as confused as you are.


Discuss things with your doctor
Most of the time you’ll know when things are normal for you. If anything changes, or you realise you’re experiencing more pain than you think you should be, talk to your doctor. 
ME/CFS can makes periods worse, but if you’re concerned then it’s worth getting checked out to make sure you’ve not got signs of Endometriosis, to put your mind at rest.
If you feel embarrassed, then ask to see a female doctor. It’s always easier to talk to someone who actually experiences the same thing you do.


Remember it will pass
Unless you do have something like Endometriosis, then your period is going to end within a week. It’s really hard to remember that when you’re writhing in pain or too exhausted to move, but try and put your scientist hat on and look for the patterns in your cycle. 
How long is your period going to last? What are the days you get most tired? What days do you have the most pain?
If you can work that out, then you can count the days off until you get through it. You only need to get through the current moment; the rest isn’t your concern. Every second you’re dealing with it is one more you’ve coped, and one more step until it goes away again.

Knowing I’ll start getting more tired two days beforehand, and experience severe pain for the first two (sometimes three) days, means I know why I’m suddenly bursting into tears, and how long I have to last until I’ll go back to normal.


Be kind to yourself
I feel like this is one that’s going to come up a lot in this series of posts, but I’m just going to keep saying it.
You’re already under physical and emotional stress from your condition, so be nice to yourself when Tarantino Time rolls around. 
Periods always suck, but they’re extra rubbish when you’re sick, so get in bed, eat your steak, have some ice-cream, and look at cat pictures on the internet. You deserve it.


H