Wednesday, 25 July 2018

TH Adventures! Ian and Lilli's Wedding

Hello my lovely loves!

While I've been hard at work preparing for Gatsby For ME, Tiny Hannah has been gallivanting off to various parties. Bloody typical.
Here she is at the lovely Lilli and Ian's wedding.

H

Chillin' while the photos are done

Making friends

Official photo time with the happy couple!

Finding her place card


OM NOM NOM

Dessert time!

Hugs with Ian

It's Adrian!

Writing in the guest book

Uh oh. She's found the champers. It's about to get rowdy.

TH! Don't slap Rafferty!

It's ok, they made up.

Such a poser


Min and Vince!

Time for speeches

Ooh! Pic n mix!

Time to cool off outside.

Uh, guys, I'm not sure that's a good idea...

...she gets a bit clingy after a few beers.

Butter wouldn't melt.

Thursday, 7 June 2018

Gatsby For M.E.! Online Vintage Charity Tea Party

Hello my lovely loves!

A really fun one for you today. Basically, I'm inviting you to a party. And it doesn't matter where you live, or if you have a car, or even if you can leave the house, you can come to my party anyway.

My Mum and I are holding a 1920's themed charity tea party in our local church hall to raise money for the ME Association. I've been making decorations, finding live music, and sourcing some awesome raffle prizes from some lovely people in local business. My wonderful able-bodied friends are going to dress up like flappers and serve cakes and tiny sandwiches. It's going to be amazing.

But obviously... I can't go. I can making bunting till the cows come home, but I'm still housebound. And it got me thinking about all the other people who couldn't go, so I decided, "Sod that. Let's have a party anyway."

So on the 11th August, 2018 we'll be holding TWO parties. My lovely Mum will be wearing hr finest 20s outfit at Terrington St John Methodist Church Hall from 3pm, with live music, a raffle, cake and tiny sandwiches.
And I shall be online with the hashtag #GatsbyForME, also with cake, hopefully in my 20s finest. (You know how it is, don't count the energy chickens until they've hatched. Or something.)
Join in with photos of your outfits, or your tea and cake if you're not up to dressing up with the hashtag and let's have a zero-energy knees up.
There are plenty of hashtags about how difficult ME/CFS is, and those are amazing and very important, but just for once, let's have a fun one and celebrate how awesome we are. And raise some cash while we're at it.
I'd love it if you could join us at either. Or both.

If you want to buy tickets (or ask questions) then drop us an email at GatsbyforME@gmail.com. These are limited, as there is only so much space at the hall, so be aware.

We'll be running a Just Giving, so even if you're not there in person you can still donate, and I'll be picking one lucky donator to give an illustration to as a thank you.
The Just Giving page is here.

The Facebook event is here. And of course I'll be around on social media if you want to get in contact.

Let's party!


H


Tuesday, 15 May 2018

SP ME Symptoms and Tips: Pain, Part Two

PART ONE - PART TWO


Hello again, my lovely loves! Part two, and let's get right into it.


Muscle Pain

Most people have had muscle pain at one time or another, but the closest to the muscle pains I get now was when I had growing pains as a teenager.
There was a period of about a couple of years when I would get excruciating pains in my legs as they grew so quickly. It’s like you can feel the bones creaking as they grow and your muscles are being pulled way beyond their tolerance. 
(My Mum likes to joke that I got her share of legs as well as my own, but man, spending a couple of years like Stretch Armstrong did not feel like an achievement.)



I’d make gym comparisons, but I’ve never been to one. Oops!

Things to deal with muscle pain are:


Heat

Again, keep the area warm to help the muscle relax as much as possible. Hot water bottles, warm baths, warm clothes.

(See again, the infrared saunas mentioned in Part One.)


Painkillers


Stretches or Massage

Gentle stretches are a good way of loosening the muscles as much possible to help prevent further pain and cramping. It can also help the muscle pain to dissipate quicker.
I do this with my leg pain, as well as massaging the muscles to try and loosen them and get the blood flowing better (if my hands aren’t also painful). 

Similarly, regular professional massage can be used to managed pain, although obviously more expensive than simple stretches.
Make sure to tell your masseuse that you suffer from a condition that gives you pain; it can help them tailor their massage technique to better help you. Some massage therapists are wary of ME/CFS, mainly because they haven’t heard of it before, but if you explain, or say that it often coincides with fibromyalgia, it should give them a better idea of what they’re working with.


Epsom Salts

See in Part One


Magnesium

See in Part One


TENS Machines

See in Part One


CBD Oil

See in Part One


Acupuncture

I’ve heard so many good things about acupuncture for so many different issues, but I have a thing about needles, so I’m not sure it’s something I’d personally try.
Ask around people you know though. If you exist on planet earth you’re bound to know someone who raves about acupuncture.



Musculoskeletal Spasms AKA the Stabby Stabbies

As my nickname for them suggests, Musculoskeletal Spasms are a much sharper pain than the previous two types mentioned, reminiscent of a cramp.
I tend to get them in my jaw, my chest and my back. The first time I had sharp chest pains for about twenty minutes we all tried desperately not to freak out while we called the doctor. Fortunately my heart checks were clear, and the doctor diagnosed musculoskeletal spams.

I tend to get the chest and back pains the most, and it’s a sharp pain that hits at the end of an inhale, and the end of an exhale; so basically when the diaphragm reaches the high or low point of it’s movement.
It feels a bit like your muscles have been caught on something sharp inside your chest and when you breathe in it’s yanking them.
You learn very quickly not to breathe deeply, and not to laugh when it’s happening. This is one scenario when laughing in the face of danger is not the way to go.

The jaw pains are equally fun, because if I move my face in the wrong way it feels like a knife to the cheek. Eating when this is happening is difficult so I try to stick to drinks and soup.

These spasms do tend to go away on their own after a while, but they’re very painful while they last, so I try different things to try and shorten an episode.


Stay Calm

I tend to get these when I’m stressed, and stress seems to prolong them, so staying calm and trying to relax is generally a good move. 


Talk to your doctor

If you are getting chest pains of any kind then you need to get them checked by a doctor, especially if you have a family history of heart conditions.
Chest pains are fairly common with ME/CFS, but you need to double check that it’s not an overlapping condition.


Temperature

I should have shares in hot water bottles with the amount I recommend them, but they really are amazing. Some people say applying cold is better for spasms, but that’s just going to make my bones hurt, so I apply heat instead.

Basically anything that relaxes the muscles is good so...


Epsom Salts

See in Part One


Magnesium

See in Part One


Quinine/Tonic Water

I absolutely hate the taste of tonic water. (And I think gin tastes like the smell of nail polish remover, so gin and tonic drinkers confuse me greatly.)

Mum can attest that I do this pretty much every time.

However, there’s some anecdotal evidence that quinine helps with muscle cramps, so if I get the Stabby Stabbies I have a small can of tonic water. I’m not sure if it’s psychological, as there’s no scientific evidence to support quinine helping cramps, but as far as I can tell it does seem to help mine dissipate a little faster. Do with that what you will.

Bear in mind, however, that if you do decide to try quinine it’s best not to have too much, so occasional use is best. Some people can have a bad reaction to quinine, so if drinking tonic water makes you feel nauseous or dizzy then stay away from it.

Doctors recommend that you not take quinine supplements as they are far more concentrated and they can cause medical issues. Heed their words.


Very Gentle Stretches

Sometimes these seem to be triggered if I’ve twisted something or have been mashing my face into the pillow whilst fighting the forces of darkness in my sleep. If I’m lucky, very, very gentle stretching of the area can speed up their recovery. Be careful though. Move slowly or it’ll trigger more spasmy-stabby-funtimes.


Professional massage therapy

For more acute and ongoing cases massage can help manage musculoskeletal pain. I’d let a professional handle this type though, because it affects ligaments and bones as well as muscles.


Medication

Anti-inflammatory injections or medications, serotonin and painkillers can be prescribed to help musculoskeletal spasms if they’re more serious. Talk to your doctor about what’s best for you.


Acupuncture 

Tiny needles are apparently helpful for this. I am still not keen.



Headaches

Everyone knows how headaches feel, so I’m not going to get into it here. 
Mine tend to hit me in the brow and around my eyes, and at the point where my neck meets my skull. They also happen for a few different reasons, so I find them quite frustrating, because I have to work out what’s triggered the headache to try and fix it.

There is a marked different between a headache and a migraine; I’ve had both. Migraines are fairly common with ME/CFS but fortunately I mostly get headaches of varying degrees. They can get bad, but not full-on, can’t-move migraines with the extra symptoms like auras and nausea.
My migraine knowledge is limited, so if people want to share what they use for them in the comments, please do.


Eye test

If you’re getting regular headaches, then double check when your last eye test was, because it could be that your eyes are straining. 
If you’re housebound you can get a free visit from a qualified optician who will do a check in your home.


Take a break from screens

If you’ve been staring at a screen for a while, it can strain your eyes.
For some it’s the same with books.
Put that latest episode of Ru Paul’s Drag Race on pause and come back to it later.


Rest

I know I can sound like a broken record sometimes, but resting properly and regularly has helped my headaches the most. When I first got ill I had headaches pretty much constantly, and it wasn’t until I started using the resting ratio method that they started becoming more manageable and infrequent.
It turns out that headaches are one of my warnings signs that I’m overdoing it and need to rest.


Hydration

The next thing on my list of the-mystery-of-the-confusing-headache is to drink a glass of water. Keep that brain of yours floating in fluid. (Sorry. That sounded less gross in my head.)


Fresh Air

Most people in my family get really bad pressure headaches from the weather. If the sky is that flat, pale grey reminiscent of old cloudy tupperware then you can pretty much guarantee that one or all of us has a Downright Thumper.

Sometimes I can lessen a headache by going outside. Even if all I can manage is to stick my head out of the window for a minute, fresh air can help.


Shake fists at sky

If the fresh air doesn’t work on the pressure headache then obviously there’s not much I do about the weather, but shaking my fists at the sky makes me feel slightly better about the situation. To be honest it’s a good one for most pain-related scenarios.


Sit up more

Sometimes I get headaches if I’ve been lying down for too long. Obviously that’s a common problem for me, so propping myself up more, or adding another pillow under my head can help.


4Head

4Head is a menthol stick that you rub on your temples and forehead (clues in the name). I love this stuff and it can really help shift a stubborn headache for me. Fingers crossed it will for you too.

Just don’t let anyone kiss you on the forehead or they will get a nasty, burny surprise. Sorry, Mum.


Painkillers

If all of this doesn’t work then it’s paracetamol time. I know other people take stronger medications like Pizotifen for headaches and migraines, so if you need something that packs more punch, talk to you doctor.


Cool cloth

Straying into oh-god-why level now, we break out the cool cloth on the forehead. Obviously, you don’t have to save it for the really bad ones, but at this point my Mum normally swoops in like a beautiful angel and reminds me that cold things exist.




CBD Oil

I’ve not tried this, but I know that people use CBD oil for headaches.


Acupuncture

*sigh* Still no.


Botox

This sounds kind of ridiculous but one of the reasons I get headaches so much is because I frown ALL THE TIME. I do it when I’m concentrating so I don’t even realise it's happening. Sometimes it actually makes my eyebrows hurt.
I recently saw a video of a blogger who’d had botox to stop frown lines and she said that all her tension headaches went away because the muscles in her face weren’t able to hold that tension anymore.
The NHS also uses it in certain cases of chronic migraines when other medications aren’t working.
I’d be lying if I said I wasn’t curious, so if you know anyone else who’s had this then let me know because it’s so, so fascinating.
I’m not sure I’d actually get it done, because, you know, needles, but I’d still like to know my options in case Frowny McFrownface headaches become unbearable, and for some reason one needle is less terrifying than all the tiny needles.

There’s always the chance I could end up looking like a startled stoat though. Hmm. Maybe not.


Chemical avoidance 

Some sufferers have poor reactions to chemicals, including pain, and trying to avoid them can help.
I have a friend with fibromyalgia who did kinesiology to work out what she couldn’t tolerate and ended up getting rid of 95% of the chemicals in her house, and her pain is so much better.
I’m not saying that paying for kinesiology is necessary but looking at the number of chemicals you’re around could help.
I've popped this in the headache section because I know perfumes, air fresheners and other aerosols give me (and her) headaches, so it’s an easy one to try and change.
Alternative cleaning products can be expensive, but if you shop around then it can be workable. 

My mum uses a concentrate called MPD from Forever Aloe, which, as the company name suggests, is Aloe Vera based.
It’s expensive, but you can use it for pretty much everything, including laundry, and it’s so concentrated that a little goes a very long way.


Period Pain

This regular time of joy and rainbows is covered in its own blog post here. Good luck and godspeed.


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I hope this piece has been useful and helps you find some relief from pain or understand other people’s pain a bit more.
If you have tips and tricks you’ve picked up, please share them in the comments to add to information available to readers.


All the best,


H

PART ONE - PART TWO

Monday, 14 May 2018

SP ME Symptoms and Tips: Pain, Part One

PART ONE - PART TWO


Hello my lovely loves!

I wasn't planning on posting again so soon, but as it's ME Awareness Month and I'd just finished this piece, I thought I’d jump back into the Symptoms and Tips series this month, with a look at pain in ME/CFS, and how I deal with it.

It's a fairly large one again (as the symptoms and tips pieces often are), so I'll post the rest tomorrow.


I’m actually quite lucky when to comes to pain as a symptom; I do have it, but not nearly as much as most other sufferers. Although saying that makes me nervous about jinxing it! 
It feels a bit strange to be writing about it when so many other people have it worse than me, but ignoring it completely is entirely unhelpful. That said, if you suffer from severe pain and want to add anything you’ve found helpful in the comments then please feel free.
There are a couple of things I want to say before we really get into it though. 


There is a real stigma around pain: men are told to “man up” and women are considered to be overreacting. (The number of women who have nearly died because they had abdominal pains they knew weren’t right and were told “having period pain is normal” is genuinely horrifying.) Complaining about pain is considered to be whining, and feeling it in the first place is often considered a weakness.
This, my friend, is a giant pile of cobblers.
Pain is a natural response. It is your body’s way of telling you something is wrong. It’s easy for people to be flippant about other people’s pain, because they’re not the ones in pain. There is no shame or weakness in feeling pain, complaining about pain, or needing help and relief from pain.

Do not be ashamed to take painkillers. We will be discussing other methods of pain-relief and control in this post but accepting prescribed chemical help is not a weakness, and punishing yourself with pain helps no one. Talk to your doctor about what pain killer is right for you.
Amybtripyline, Naproxen, Gabapentin, Co-codamol, Co-drydamol, Pizotifen, Solpadol, Tramadol, Nortryptaline and Morphine are all prescribed in the treatment of pain for ME/CFS and Fibromyalgia (although obviously not all together!). There is bound to be something that works for you if over the counter medications like Paracetamol and Ibuprofen aren't working, so talk to your doctor.
You can try topical painkillers like Phorpain Gel if oral painkillers don’t work well, or need to be supplemented (with advice from a doctor); or even try other types of paracetamol like effervescent paracetamol to see if that works better for your body.


Conversely, if you decide pain medication isn’t right for you, then that’s fine too. It’s your body, and your choice. Just make sure you’re refusing it for the right reasons instead of what others might think of you.

I know a lot of people worry about becoming dependent on pain medication. It’s possible, so it’s good that you’re aware of it, but with proper care and support this should be less of an issue. 
If anything, being nervous about it is probably going to make you notice any changes in your behaviour quicker. 
And in the unlikely event it does happen, again, it’s nothing to be ashamed of, and they are plenty of other medications, and support available.

In the end, you should always double check your pain killer usage with a doctor, ESPECIALLY if you’re on anti-depressants. 
(One thing I learned is to NEVER mix anti-inflammatory pain medications with anti-depressants that specifically say you can’t.
Anti-depressant usage can make your body more acidic over time, and using anti-flammatories with that can give you real problems, including an excruciating case of gastritis, as I found to my detriment.
I’ve mention this before, but it’s always worth reiterating, and a month or more only living on unsweetened, liquidised porridge (because it’s the only thing that doesn’t hurt your stomach) will soon teach you not to be flippant about doctor’s orders.)



A lot of the things I use to deal with pain are the same for several different types of pain. I’ll list the types of pain I get first and then the remedies, but only fully explain them the first time to avoid a ridiculously long, repetitive article, but general things that might help:


Check Side Effects

An obvious one, but check your medications and see if there are any specific types of pain listed that you have. If they started after use, then maybe see if there’s something else you can try.


Allow yourself to be angry

Being in pain is frustrating and you have a right to be annoyed. Have a shout into a pillow, mutter to yourself profusely, and have a stomp about if you can.
If you let it out you’ll probably feel a bit better. Plus, not bottling it up means you’re less likely to take it out on any innocent bystanders.

If your rage results in flying knives (for some reason) 
then maybe give this tip a miss.
(Thanks Google Image Search. You never disappoint.)

You might find EFT or Tapping, useful for releasing anger. 
There’s a lot of talk about how tapping can actually help pain, but, as much as I love this tool, I’m sceptical about that aspect of its use.
It is however, GREAT at letting you get out all the emotions about your pain out, and that can be very useful.

There are lots of videos on Tapping on YouTube, and the least irritating tutor on there seems to be Brad Yates
(Unfortunately a lot of people who talk about tapping sound like their going to break into a long chat about crystals and rain dances afterwards, but if you can get past that it’s really helpful. I think it helps that I learnt from a no-nonsense Scottish woman.)


Don’t fight it

Most people tense when they’re in pain, which is fine, because ow, but it doesn’t help the pain, and can actually make it worse. 
If all your other muscles are tensing because you’re fighting the pain then those muscles can start to hurt as well. Try to breathe into it.

I realise it’s easy for me to say this over in Camp I-Don’t-Get-Pain-As-Bad-As-Most-Sufferers, but my period pain is definitely on the more severe end of normal and I find it useful for that.

Mindfulness mediation is good, especially ones designed to deal with stuff like this. Try the book Mindfulness for Health and it’s accompanying meditations. There are all sorts of meditations and visualisations around designed to help with pain.

I was extremely sceptical of this at first, and to be honest sometimes it’s still hard to remember to do, but when I do it can be helpful. If there’s a chance it might help, then it’s worth a try.


Pain Management Clinics

I haven’t been to one, but I know they exist and can be helpful to those with chronic pain. As far as I can tell it’s really more about management than cure, so keep your expectations realistic, but the more you know the easier you might find things. 
Even if you only gain one piece of useful knowledge, it’s something.
Talk to your GP for information on your local clinic.


And now to the types of pain I get! (Yay?)


Joint Pain AKA Bone Pain

My great-aunt used to have a budgie. Apart from being incredibly noisy it also had a cuttlebone that it would scrape on continuously. That is how my joint pain feels; like something is scraping on my bones. It’s kind of a dull ache that builds on itself in waves until it a sharpness is added to it. Although it’s more of a full parrot than a budgie.

Dat beak tho.

There are two levels of this pain for me; parrot and angle-grinder. As you can imagine, if a beak scraping on your bones is painful an angle grinder is excruciating.


It’s incredibly similar to arthritic pain, according to my mum. We both get joint pain in our hands, but I get it in my hips the most frequently.


Keep Warm

The main way I deal with this one is by keeping warm. 
If I get cold it takes hours to get warm again, and I feel it right down to my bones. I can pretty much guarantee that I’ll get joint pain when I try to sleep if that happens. 

(I tend to get pain the most when I’m overtired, having a crash, or it’s cold. I get through at least twice the amount of pain killers in the winter as I do in the summer.)

Keep wherever usually hurts toasty; double up on leggings, cart out the hot water bottles, have warm baths, and fish out the arm warmers.
Also, when we’re in pain we tend to tense our muscles, which inadvertently causes more discomfort. Keeping warm keeps the muscles relaxed as much as possible to avoid further pain. 

(On the topic of keeping warm, you might want to check out infrared saunas. These are available for home use, and unlike regular saunas, only heat you, not the surrounding area. There are meant to be a great deal of benefits to use, and while I haven’t used this myself, several people mentioned them to me in my research as something that has helped them, so worth a look for more persistent pain!)


Painkillers

I also use painkillers for this. If I’m lucky two paracetamol is enough. I’ve also been prescribed Cocodamol for when two hot water bottles aren’t cutting it.
The only problem with this is that I’ve never taken it before, and I usually get most of my pain at night, so we’re waiting until I get pain in the day so I can try it when there’s someone around to make sure I don’t have a bad reaction to it.
You also can’t take it with paracetamol, so I can’t try that first and then take the Cocodamol if it’s not working. I’ll keep you posted with how it goes.


Correct bedding

If you’re getting pain at night, you might also want to look at your sleeping arrangements and see if there’s anything that needs updating or changing. 
Try different pillows to help neck and shoulder pain - I used this shaped foam one from Dunelm and that’s really helped my neck.

Also, find out how old your mattress is and when the last time it was turned is. A lot of mattresses need regular turning to help maintain their shape and reduce sagging, and all mattress are meant to be replaced after about ten years of use.

Finally, bear in mind that although “orthopaedic” mattresses sound like the most medically helpful, it’s actually just an industry term for a hard mattress. If you have joint pain, specifically hip pain, then it could be that you need a softer mattress that puts less pressure on your joints.
I covered this a bit in my N:REM review here, but my hip pain is significantly better since I switched to a softer mattress. 
It might mean spending some money, but if you’re able to do it, then it will likely make a difference to your pain, which will have a knock on effect with your energy levels. A lot of places allow you to pay in instalments as well.

Placing a pillow between your knees can also take pressure off your hips. Being of the hippy persuasion (not the hippie persuasion), I’ve done this for years, and it’s really helpful.

Similarly, think about the support your sofa and other chairs are giving you. If you have ME/CFS chances are you’re having to lie down a lot on either a bed or a sofa. If you notice that you pain worsens when you’re on a certain piece of furniture, then it may mean that it isn’t suitable for your needs.


Other things that might be useful for joint pain are:


Epsom Salts

Lots of people suggest bathing with Epsom Salts for muscle and joint pain. It’s not something I’ve tried yet, but it’s relatively cheap so it may be a good thing to try.


Magnesium

Magnesium is available in topical form (gel/sprays), flakes to dissolve in baths and as an oral supplement. Some people swear by it. I’ve not noticed much difference when I’ve used my spray, but to be honest I usually forget to use it, and I think it’s something you’re meant to use regularly. I’m going to try adding flakes to my baths and see if regular use makes a difference.


CBD Oil

CBD Oil is a cannabis derivative that lacks the psychoactive part of cannabis that gives you a high. Cannabis, in all it’s forms, is said to be very effective as pain relief, and it’s slowly becoming more available around the world.
Non-psychoactive oils are legal in the UK and available in various health food shops like Holland and Barrett, and online.
There are different types and apparently it can take a bit of time to find the right type and dose that work  for you. It is currently quite expensive, though, so bear that in mind.


TENS Machines

TENS (Transcutaneous electrical nerve stimulation) Machines work by applying electrodes on sticky patches to different areas of the body and then sending a mild current to those areas. This confuses the nerve endings and makes it more difficult for the body to process pain. It feels a little odd, as you’re essentially electrocuting yourself at a really low level, but as long as you start slowly it can actually feel quite nice. 
Like a massage from a tiny robot.



These are good if you have specific areas that you need to target, and can also be used as a form of gentle exercise for the muscles if used correctly.

If using a TENS machine, remember to put the sticky pads either side of the painful area, and don’t have it turned on while placing them. You also shouldn’t let the sticky patches touch while the TENS machine is on.
Start slowly, and you’ll feel a slight tingle, which will increase as you turn it up. Never turn it up to a point that is uncomfortable for you.

There are many types of TENS Machines on the market. Mine is just a simple one from Amazon.

There are also bigger brand names like Quell and Oska Pulse. Although based around the same technology they work slightly differently.

Quell is strapped a specific part of the lower leg no matter the area of the pain and its designed to stimulate enough nerves at once that the body releases it’s own pain relieving chemicals.

Oska Pulse is another device which utilises electromagnetic fields to try and stimulate the body to release it’s own chemicals to deal with pain. It’s placed on or near the area of pain and, unlike the other devices, there isn’t a pulse or tingling feeling.
My friend Laura Chamberlain, over at Laura’s Pen, has done a review of the Oska, which you can check out here.

I’d love to give these two devices a try so I could compare them for you, but they are much pricier than regular TENS machines and I’m afraid I’m not able to afford it. For now I’ll have to let you decide which tiny robot masseuse you go for.


Keep hydrated

Around each joint is something called synovial fluid, which is basically the body’s natural joint lubrication. Keeping yourself hydrated maintains this fluid and keeps the joint moving easily and without friction, which should help lessen pain.


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Okay! Come back again tomorrow for part two where we jump into muscle pain. Let joy be unconfined.


PART ONE - PART TWO

Tuesday, 1 May 2018

Why you should really play Hogwarts Mystery

Full disclosure. I am a massive Harry Potter fan. I’ve read the books so much that the pages are falling out, and I’m still kind of pissed I never got my Hogwarts letter. So of course when the Harry Potter Hogwarts Mystery game came out and I could get finally my wand and board the Hogwarts Express I was on it like a car bonnet.


A couple of days into the game I started to see posts online of people getting incredibly frustrated with how low the player’s energy level is and how long it takes to complete tasks.
Players have to stop and wait for four minutes for the characters timer to gain another energy point before continuing.
Larger tasks with greater rewards can take all day.

They are down right incredulous to find out it takes energy to “take a break” or “rest”.








Many are calling for the game to be altered to make the game easier to play and more realistic.
But, the thing is, the energy restrictions had barely registered for me, because that IS how I live my life. That’s how millions of us live our lives when we’re chronically ill. It’s perfectly normal for me to have to stop what I’m doing because I don’t have enough energy.
I have a condition that means my cells can’t produce energy like it should.
I can’t work, I can’t watch TV, I can only see one friend a month, and I haven’t left the house in three and a half years. There are hundreds of thousands more just like me.



As for the “resting” issue, what most people consider rest and relaxation, like watching tv or playing a game on your phone for example, is another tiring activity for sufferers.
For us, resting is lying down in a darkened room trying to do nothing but concentrate on our breathing, because it’s the only way our energy levels recoup.



What JK Rowling, Warner Brothers, and Jam City have inadvertently done is make a perfect example of what it’s like to live with a chronic illness. They're hardly the first to do so, but it seems as if they're the ones people have the greatest response to.
As frustrating as it might be for some people, I hope they don’t change it.
It might give them an idea of what it’s like to do it in real life.

Monday, 23 April 2018

Tiny Hannah Returns! My Step-Dad's 70th

Hello my lovely loves!

I originally posted this by accident on my illustration blog, and have only just noticed. Smooth move, Radenkova.
In any case, after the last post's pretty heavy offerings we have something a little lighter! Tiny Hannah is back from America!
She'll be going back over and continuing her travels later in the year, but I wanted her home for my step-dad's 70th. She also has a couple of weddings to attend in the UK this summer so stay tuned for that!

H

 A familiar shadow falls across the village of Tilney St Lawrence


 The wanderer returns!


 TH dresses for the occasion (and helps with the party bags)
(Yes, I made party bags for a 70th birthday. What of it?)


 Mum and David scrub up rather well too.


 And there's this rather epic cake to look forward to for tea


 If she has room after the massaman curry of course


 And the chocolate-hazelnut dessert of dreams


 Group photo!


Deep discussions are held


  Leslie decides to become TH's fairy godfather
(See, *this* is why you make party bags for 70th birthdays.)


 Home time!

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.