Wednesday, 7 February 2018

What an ME Crash looks like

Hello my lovely loves,

Today I am firmly pushing myself out of my comfort zone, and showing you something that I never thought I would.
A while ago I asked if people would be interested in seeing what an ME energy crash and its subsequent recovery process looks like, and people overwhelmingly said yes.

I’m a little nervous, and I was going to try and schedule this as next month’s post, but now I’ve done it I kind of want to rip off the plaster and show it straight away.

I was massively inspired by the incredible Jennifer Brea and the other sufferers who created the film Unrest, which follows Jennifer’s struggle with ME/CFS.
She (and they) made it feel like it wasn’t just ok, but good and right to show people what I, and so many others, deal with on a regular basis.
And I’ve got to say, the respect I felt only increased as I attempted to document what happened during my last abrupt crash in December. It is incredibly difficult to be upfront and so, so honest, and still find the strength to carry on.

In the end I only filmed for four days of the two weeks of my crash and return to my normal levels, so it’s truly mind blowing that Jen and the other people in the film showed so much.

I showed the video to a select few for feedback on its completion, and there was a very unexpected response. (Although perhaps it shouldn’t have been.)
Pretty much everyone said it showed just how long it takes to recover.
They’re not wrong, but it made me realised how different my view of recovery time and theirs is so drastically different.
Two weeks is nothing. I was genuinely proud of it taking just two weeks to get back to my normal, if limited level.
I remember months and months of being stuck in stasis, when I hadn’t learned how to manage this condition, when it was so much worse.
And I’m far from the most severe of sufferers.

In a way that’s horrifying, but I hope that in others it might make it easier for you to watch what I’ve created.
It might not look it but this is better than it was.

I hope that this helps you understand a little more how it’s works, what it’s like, and why I try to keep so ruthlessly upbeat!

I can only apologise that it's shot in portrait mode - I obviously wasn't very well when I started to record footage, and by the time I realised I had done it wrong it was a little late! So I kept it all in portrait. Also, some people with slower internet speeds may find the visuals lag behind the sound towards the end of the video. Just reload or drag the slider along to a random point and it should sort itself out.

If you have questions you know where I am. 

If you want a greater explanation of how a crash feels to me then I’ve written a blog post here on the subject called The Good, The Bad, and The Payback. I love me a catchy title.

For the ME Association head here.

For Unrest on iTunes and Amazon head here and here, and head to Netflix to watch it on there.

Friday, 2 February 2018

Why "What if" makes no sense

Hello my lovely loves.

A friend recently said to me that it must be difficult knowing my life would have been so different if I hadn’t got ill, and it got me thinking.

Firstly, yes. Sometimes I look at people's photos online of their happy relationships, beautiful children, incredible career achievements and amazing trips abroad, and, as happy as I am for them (and I genuinely am), it’s still utterly excruciating. 
It hurts so much that my life is so different to what I thought it would be.

There have definitely been occasions where I wonder where I’d be now if I wasn’t sick, or even if I wasn’t housebound. Would I have met someone? Be having a family? Working at some amazing job? Going on my own adventures? And thinking about that, measuring myself to what might have been, and what others already have, is pretty soul destroying.

But there’s a problem with all of this.
Maybe I would have a beautiful, magical life where everything is sunshine and rainbows, but... I also could have been hit by lightning, run over by a bus, or fatally mauled in a freak llama-related incident.

Something people (myself included) tend to forget, is that just because things are bad now, doesn’t mean it would’ve been better if this one thing hadn’t happened.
It could also be as bad, if not worse than it is now. I could be dead; and then, even though all the things I want out of life seem so far away and unlikely, I definitely NEVER would have done them.
After all, there is no hope if you’re not here to have it.

The same holds true for the future. It’s so easy to assume that because you have an illness you never expected or planned for, it must mean that everything in the future will be worse than it would have been. But... why should that be true?
It certainly feels true sometimes, I’m not arguing with that, but just because something feels true doesn’t mean it is.
We don’t know what will happen. That can be really scary.
But it also means that maybe there will still be sunshine and rainbows, even if right now it’s bloody tipping it down.

Everyone has their ways of coping with the What Ifs. Mourning the life you had, or might’ve had, is itself a very important step. I know some people become very religious, some practise yoga, become activists, or just get very, very angry. Those are all valid, and if they help you then that’s all anyone could ask for.
But I imagine that I’ve narrowly avoided an ignominious end at the hands (or hooves) of a pack of rabid llamas. 
Maybe you should give it a try.

Tuesday, 16 January 2018

Stars and Struggles

Hello my lovely loves,

I’ve been feeling really down at the moment. January and February are always tough because they’re cold, grey, and everyone is making plans and getting on with their lives while I’m... not.
But today I got some lovely things in the post. A belated Christmas present from my lovely friends Greg and Bee (Oliver Jeffers is my favourite illustrator), a card from my fellow Spoonie Warrior Amy W, and a ring I bought myself.

I’ve always wanted a star ring. I have a massive star fixation, and always hoped that one day I’d have one.
I also sold my beautiful guitar and amp in December. That guitar was my 18th birthday present, and while I was glad it’s gone to a good home (and now lives with someone who can actually play more than three chords on it), part of me was really sad that I didn’t have anything left of my 18th birthday gift from my parents. 

Live well, sweet Angus.

So I used some of the money from that to buy this beautiful ring from Carrie Elizabeth

So ring. Much sparkle.

I only really like small, thin rings, especially on me, so it’s perfect.
It’s slightly big, but they didn’t have any extra smalls left in stock, and to be honest on my ring finger it’s a bit... engagementy. And god knows the only bloke I see on a regular basis that I’m not related to is the postman. So middle finger it is.

It feels very strange to buy myself something that feels this frivolous, mainly because I feel like some stranger is going to jump out of the woodwork and berate me for spending my benefit money “incorrectly”. 

Usually if I buy something that has no practical use it’s in preparation for when I’m well enough to be back in the world again, and I find that easier to justify.
If something’s expensive then it’s inevitably related to managing my condition anyway.

But, a. it’s not benefit money - I sold something very dear to me, and b. why would it be anyone’s business but mine what I spend my money on anyway?

I’m trying really hard at this point not to go into a rant about internalised shame caused by society’s atrocious way of looking at the sick, poor and disabled as scroungers and liars rather than those who need help. It’ll only upset me and I need the spare energy.

When I spoke to Mum about it, she pointed out to me that I’ve been slogging this long slog for over five years now. Five long years. And frankly I just feel exhausted with it. Particularly at the moment. Everything is a fight. Everything has consequences. And nothing is ever spontaneous or easy. Ever.
But this?
I chose this. And I chose it (for me) quite spontaneously.
And I’m not going to let anyone take that away from me.

So shine on, little sparkle. I’m going to need you to light the way while I keep on fighting the good fight.


Tuesday, 2 January 2018

Homemade Christmas presents 2017

Hello my lovely loves!

This post is a little look into this year's secret projects that I've made for friends and family as Christmas presents.
It's always so hard for me to keep them secret this long, but I've managed it!

In other news I've managed pretty well throughout Christmas and New Year this year, so hooray! I managed to (mostly) keep a lid on the excitement, but I'm putting some feelers out for further support ideas and resources on over-excitement that I can share with you guys in the future. Fingers crossed that'll all come through!

I've got a little bit of post-Christmas blues at the moment, although instead of being centred around having to go back to work, it's about not being able to! The thought of projects and ideas for the blog is keeping me going though, as well as some very thoughtful little advent presents from friends that I've saved just for this purpose.

But enough of me blabbing, on to the projects!

This is for my very clever poet friend, Leanne Moden. 
We've often joked that her correct title is Lexical Engineer. 
You should totally check out Leanne's blog.

This one was also for Leanne.
There is something incredibly satisfying about 
carefully cross stitching feminist slogans.

This one was for my friend Nick Askew, 
who is a brilliant artist and massive Eddie Izzard fan.
Again, cross stitching skulls and death is very pleasing.
Subversive cross stitch for the win.

Made extra pleasing by the fact that 
"cake or cat" is hidden in there...

For a variety of friends and family:
a variety of corn dollie christmas decorations...

Craft straws never looked so good.

And finally, my personal favourite... scented butterbeer candles.
They smell like butterscotch and come complete 
with handmade labels designed by me.
It was very difficult to give these away.

Some are in jars.

Some are in mini milk bottles.

All smell incredible.

And I had so much fun designing the label.

Thursday, 7 December 2017

Standby Wars: Return of the Hedgehog

Hello my lovely loves,

I'm afraid it's time for Standby Hedgehog again, as I seem to be going through a little bit of a sticky patch at the moment. Clearly all the Christmas prep has been too much for me!
I also need to find ways of countering excitement, as it's pretty much the hardest emotion to control and is extremely exhausting! Any tips, people, then let me know.

I've actually been chronicling this drop a little bit by taking short videos on my iPhone, so I may post that at some point in the future.
I've always kept this side of my illness very private, but with the release of Unrest, it's made me realise the good sharing these things does. I'm still not sure about showing the world what I look like when I ugly cry though... so we’ll see what happens. I may not be ready to share yet, or indeed ever, but at least I know I have the option.

In the mean time, here is Standby Hedgehog on a giant pile of candy canes...

Sunday, 12 November 2017

Charity cards

Hello my lovely loves!

Today's post is to let you know I'm raising money for the homeless charity, Crisis, by selling some Christmas cards!
The rest of the year I try and give money to ME charities, as obviously that's a cause very close to my heart, but at Christmas I think it's only right to give money to those who struggle most throughout the winter months.
I think it probably harks back to my Mum telling me harrowing stories as a child like the little match girl, and one of her own invention where a young child didn't have any shoes. Guess those traumas turned me into a decent person though, so go Mum. Mad parenting skills.

There are two designs available this year, and you can buy packs either of one design or both.

The designs are called Christmas Hugs, and Christmas Survival kit. I basically tried to cater to these two groups with my designs...

Packs come in singles, 6s and 10s. Singles are £3, packs of six are £6 and packs of ten are £9.

You can also add a glitter add-on and have a number of your cards sprayed with a beautiful iridescent glitter.
10% of the card and glitter profits will go to Crisis. I've broken even now so basically 10% of whatever you spend.
If you'd just like to donate there's a listing in my Etsy shop for that - obviously the whole amount of any donations will go to Crisis.

I'm currently shipping to the UK, ROI, Canada, the US, Australia and France, but if you live somewhere else and would like some cards, contact me directly and I'll work out costings for your country.

To buy some cards, head to my Etsy shop.

Keep your eyes peeled on social media as well, as I'll probably be doing a giveaway soon. Anyone who buys cards will get extra entries!


Wednesday, 1 November 2017

New to ME: What to know and what to do

Hello my lovely loves,

Today’s post is going up on the fifth year anniversary off when I first became ill, or, as I like to call it, Sickmas.

I’ve been kind of nervous about it, because I was worried that it would make me feel really sad, but then I got an email from a frightened Mum, who explained to me about her sick daughter, and that they had no idea what to do. 
It made me want to talk to all those people who have either just been diagnosed, or think they have ME and don’t know what to do about it. I want to tell you what I wish someone had told me when I first got sick. 

To be brutally honest, I don’t know whether I would’ve listened, because a. I was so sick to begin with I wasn’t really capable of processing information fully, and b. I did not want to be sick. I didn’t believe I was seriously ill, both because I had no concept of what that really meant, and because I didn’t want to believe it.

If you’re reading this, I know it’s hard. I know you’re tired and the last thing you want to do is crawl through yet another article trying to work out what’s wrong with you, and what the hell you can do to make things better. Everyone promises so much, and delivers so little.
But please, read this, and, no matter how hard parts of it may be to take in, and no matter how much you might hate me for saying what I have to say, know that I’m doing this because I want you to get better. And I want you to never get as low as I did.
Our path is not an easy one, but it’s definitely not impossible to find your way.

Don’t panic

It’s very scary when you suddenly find you’re not capable of things you used to be because of an illness. 
It’s true that ME doesn’t currently have a cure, but it is manageable, and possible to improve over time. 

Four of my relatives (by marriage, for those of your wondering about a genetic link) have ME, and they were all housebound at one time or another, and they all live pretty much normal lives now. They have to be careful not to overdo it, but they were all at a family wedding recently and were up and dancing with the best of them. 

Think like Douglas Adams, and don't panic.


This is serious

ME/CFS is a serious condition. What’s more it’s a condition that not much is known about, which means it’s not always taken as seriously as it should be by medical professionals. (Fortunately things are improving slowly on that score.) It does mean, however, that you might have to take it a little more seriously than they do to compensate.

I’m not saying this to scare you, but because when I first got sick I treated it like any other illness. I made light of it, carried on as normal and expected it to go away on it’s own. It did not do those things for me and, as much as I wish otherwise, chances are it won’t for you either.
I genuinely believe it’s possible to manage ME, but not if you continue to act like you don’t have ME.
Not everything is doom and gloom - quite the contrary, a positive outlook can be really useful - but you need to take it seriously as early as possible to help minimise it’s impact.

Rest (properly)

Hands down, the best and most important thing that you can do is get proper rest. By proper rest I mean lying down, in a quiet room, with your eyes shut, and either concentrating on your breathing or listening to a meditation track. (You can also meditate on your own if you prefer.) 
I use a "resting ratio" to determine how much rest I should have. At my worst, when I was nearly constantly bedbound, I would rest twice the amount I would do anything. So if I did something for 20 minutes, I’d rest for 40. I’ve been slowly reducing that over the last two and half years, and it’s really, really helped me.
The minimum my NHS ME specialist nurse suggested to me was resting 10 minutes out of every hour. It sucks, but you may need more. 
When I first heard this I cried because it felt like so much had already been taken away from me, but it was worth it. Think long term improvements, not short term goals.

You’ve basically got to channel your inner Victorian Lady and convalesce. Practice your swoon for maximum historical accuracy.

I’ve written a series of posts on getting proper rest. The first (of four) posts is about how the tiredness of ME feels, which you may find useful, or distressing, so I’ll link to the second where I start giving tips. If you want to read the first part it’s easy to find from that post.
The resting ratio itself is in part three, but I'd start from part two to get a better idea of what works.

Remember, doing this from early on may help minimise the illnesses effects in the long run. Resting is basically your medicine.
Which means...

You’re going to have to change

You might hate me for saying this, but the main (and probably most difficult) thing to accept is that if you want the situation to change, then you’re going to have to be willing to change how you currently live your life. 
It may even need to be a permanent change to control the condition.
Some changes may be relatively minor, and some, like the resting ratio above, may be larger, but they will need to happen at some point.
I think on some level it’s difficult to believe that all these things apply to you, and you suddenly have to take all these things into account when you never did before. 
It'll take time for you to accept this, and find what needs altering. That’s fine.
It took me two years of pushing myself too hard in order to realise I had to change my outlook. 

I will say, however, that I carried on believing I could act the same as I had, but just nap occasionally, and... eventually it made me so ill I became housebound.
Again, I’m not trying to scare you, I’ve definitely improved since then, and although I’m still housebound, I’ve got high hopes for the future... but I spent two years making mistakes. Please learn from mine so you don’t have to make so many of your own.

Get a diagnosis

Once you’re sure you have ME, aim to be officially diagnosed. That is the first step you’ll need to take to get further support and potential financial help. It can take time, but it’ll make getting help a lot easier if you have an official diagnosis.
A diagnosis for ME/CFS is made by ruling out other conditions that could be causing your symptoms. It’s lengthy and frustrating, but on the plus side it means you make sure it’s not anything else.

If you're worried about finance and benefits, I've written a blog post in several parts on my top tips for benefits applicants here.

What the NHS offers

NHS care and response differs from region to region, from surgery to surgery, and even doctor to doctor.
Although the NHS officially recommends CBT for ME, it’s not actually particularly useful in terms of improving energy levels.
There is some contention between different scientists over whether ME is physical or psychological. Unfortunately, the official NHS guidelines currently lean towards the psychological (although we’re trying to get that changed). The newest studies from around the world show that ME is a biological problem.

Find a GP who is aware that ME is a physical illness, and is willing to treat you as such. It’s really, really important for you to feel like you’re fully believed when you explain how you feel. Stick to your guns on this one, because it’ll make a massive difference to your experience with this illness.

Psychological tools can be very helpful in helping a sufferer deal with being ill though, so, as long as a counsellor doesn’t expect counselling to make your illness go away, they can be very useful. As I’m sure you’re aware, being ill is hard.
If your loved ones or carers are finding it difficult, then suggest they get support too. It’ll help them, and you’ll feel better, knowing they’re being looked after.

If the doctor or anyone else offers you something called Graded Exercise Therapy (GET) I would be extremely wary.
GET is basically designed to build up muscle strength after a period of inactivity. It’s based on the idea that ME is psychological and that the reason the patient can’t do things anymore is because they’ve stopped trying due to “unhelpful illness beliefs”. (Let’s see them try that line with any other illness.)

It advises you to ignore any Post-Exertional Malaise (a key symptom of ME, meaning you feel terrible after doing something), and keep pushing through to stick to the routine they lay out, regardless of how you feel. 
For that reason, GET can be very dangerous for someone with ME. 

There have been some who it’s worked for, but the vast majority either find it either does nothing or, more commonly, makes them significantly worse.
As someone who pushed herself to the point she became housebound, I really, really wouldn’t do it. 
(It’s also worth noting that as ME/CFS doesn’t have a clinical test yet, it’s possible that the people who benefited from GET had a different type of illness with similar characteristics.)

Similarly the Lightning Process is another psychological tool, called neurolinguistic reprogramming, where the patient tries to persuade their brain into fixing their body. There are examples of it working for some, but again, it’s not something I’d recommend. Generally speaking, anything that seems simple or too good to be true likely is.

What might be more helpful is if your NHS link has any information on Pacing - a method of restraining activity so you don’t go outside your limits. 
What may be happening now is that you do something and then have an energy crash afterwards. That’s called peaking and troughing, and you want to avoid it if at all possible. If you learn to pace yourself, you can prevent big crashes. This allows you to let your body gain energy slowly and more stably, and then increase your activity over time to take your symptoms into account. 
Doing this allows you to slowly regain your life without shocking your body. The baby steps really are baby, but it’s worth it in the long run.

Not everyone will understand 

Because ME/CFS is so controversial, and gets such spotty media coverage, there are a lot of people who may not understand your illness.
There are several ways you can tackle this:

1. Don’t call it ME straight away.
Unfortunately ME has a bit of a stigma attached to it still, so for short meetings, like answering the door to the postman or the checkout lady, just say that you’re ill and your body can’t produce energy the way it should. It’s a short, succinct way of explaining the situation without having to go into a big, long spiel. (Thanks to Anna from ME, Myself and I for that tip!)

2. Find a metaphor that works for you. 
There are loads of ways to explain ME - you can say you’re like a phone with a broken battery, a bike stuck in the wrong gear, that your body is stuck in hibernation mode - find a metaphor that you feel comfortable with to explain in a bit more detail what happens to those a bit closer to you. This also works for other symptoms of ME.

3. The Spoon Theory. 
For those moments when you need to get into even greater detail and explain Pacing, use the Spoon Theory by Christine Miserandino. 
It’s a really great way to ease people into the idea of energy management, and why it’s important that you do the energy saving things you do.
This theory is why you’ll often see the chronically ill refer to themselves as “Spoonies”.

4. Give people links.
Send your loved ones articles, websites or blogs that you feel best describe your condition. It’s possible that they’re doing their own research, which is great, but if something really strikes a chord with you, share it. It’s the best way to tell your friends and family how you feel without having to spend energy explaining.
Bonus points if they contain relevant memes.

5. Protect yo'self. 
If someone is being hurtful or seems determined not to understand what you’re going through, then you have two options. 

A. If you feel able, you can talk to them, and explain that you’re upset because people don’t seem to understand your illness. Ask them if there’s anything they need clarifying. 
Some people tend to get twitchy and don’t know what to do around sick people, often because they don’t want to accept that something bad has happened to someone they love. I’ve got a couple of posts they might find helpful on "What not to say to Sick people", and "Visiting your sick person."

B. If that’s too tiring or stressful for you, or it’s not changed anything, then attempt to quietly remove yourself from that person’s sphere wherever possible.
I appreciate this is difficult, painful and not always possible, but if they can’t support you when you’re ill, then they’re not worth the heartache. You’re already dealing with a lot. 
Either they’ll sort themselves out and realise their behaviour is unacceptable, or they’ll leave you alone and stop stressing you out so much. You’ll feel all the better for it. Self-preservation is not selfishness. You are sick, you have to put your health first.

Never feel ashamed of being ill

The above tips are designed to protect you and make your life easier, and less tiring. They are not because there is anything wrong with being chronically ill. You have nothing to be ashamed of. 

If you have enough energy to spend time explaining to people what’s wrong, and you feel comfortable doing so, then that is absolutely fine and you should do so.

It's not your fault

Your illness is not your fault. We don’t know what causes ME/CFS, but a lot of people blame themselves for doing too much and “making themselves” ill or wondering what they could’ve done differently. That’s what I did for a very long time. It is also a load of absolute bollocks.

No one lives their life expecting to become ill or disabled. It is perfectly natural to live your life without a thought of potential serious illness looming over you. Frankly, living your life like that sounds really unhealthy.
There are plenty of people who lead extremely busy, chaotic lives, get a virus, and then are perfectly fine. No one bats an eyelid at them. We just won the sickness jackpot. Yay us.

Also, no one ever wants to become seriously ill or disabled. Because that would be stupid. You didn’t somehow wish this on yourself, even if you made a joke about it in the past or wished you weren’t so busy.

So I will say it again, and keep saying it, it is not your fault that you are ill.

(If anyone suggests otherwise, then they are a cretin of the highest order who should not be allowed near complicated machinery.)

Grieving is important

It is not fair that you’re ill. It’s not fair that other people are fine when you’re not and get to do things you can’t. And it is perfectly natural for you to be angry and upset about that.

Grieving is a natural part of any long-term condition, and no matter how long your illness lasts, it still sucks, and you’re still allowed to be sad about it sometimes.

Lots of people will tell you to be positive, and they’re not wrong per se, but there has to be a balance. Trying to be happy all the time when you’re not, especially to make other people happy, is not healthy, and requires far more energy than you likely have access to.

If you want to feel sad on your own, or with a select group of people, that’s fine, but don’t hold it in.
Similarly, if you feel sad constantly, or oddly numb, then contact your GP about talking to someone. 
This is where a mental health professional comes in really handy, because you get to vent at someone without worrying about how it’ll make them feel. I highly recommend it.

There is also nothing wrong with taking antidepressants if you feel you need them. I take them and lots of other Spoonies of all varieties do too.

You will get it wrong

The most helpful thing my ME specialist nurse EVER said to me was this:
"You will get it wrong."
It might not sound the most reassuring thing, but learning to live with this illness in general, and pacing specifically, is a massive learning curve. 

It's kind of terrifying to be constantly juggling everything trying to keep your health in check. Knowing that everyone gets it wrong, and that that getting it wrong is perfectly acceptable and normal is incredibly freeing, especially if you’re naturally a perfectionist.

You will mess up. And that’s ok.

You are not alone

It can feel like you’re alone with this disease, but you’re not. If you go on twitter, instagram, or facebook there’s a massive community of people who are in the same boat.
We’re all rooting for you.

It might be useful to see if there’s an ME support group in your area. It’s really helpful to know other people who can give advice and are going through the same thing.
I found one online in my local area. Even though I’m not able to attend the meetings yet I stay in contact on Facebook, and it’s lovely knowing I have people who are close by that are just like me.

You can do this

This illness is daunting, and it’s going to feel like you have to be your own doctor most of the time. You can do it. People are so resilient, and you’re capable of far more than you know. 
Trust me, you’re much, much stronger than you think. 


Finally, I’ll give you some links to some ME charities, and the private clinic I’m with, The Optimum Health Clinic.
The ME association have loads of information on their website about ME, and downloadable booklets on pretty much every aspect of the illness, and how that effects day to day life.
You can also ask specific questions through their facebook page (either as yourself or anonymously) and they’ll open the question out to the group. That can be really helpful, and their medical advisor, Dr Charles Shepherd, is awesome and also has ME, so he’s super knowledgable.

Other ME charities include:

The Optimum Health Clinic is also technically a charity, but runs a private clinic specialising in ME, FIbromyalgia and MS. It’s not cheap, but they are very supportive, and I’ve found them very helpful. The psychologists have all had ME, so they know what it’s like, and the nutritional side can really help support the immune system.


I really hope you find this helpful, and that it gives some idea of where to start.
I’m slowly compiling a list of tips and tricks I use to deal with my ME, so hopefully those will be of some help too.

Current ones I haven't mentioned so far that you may find useful are: