Monday, 24 April 2017

ME Symptoms & Tips: Fatigue - Part 2


Hello my lovely loves!

Okay, yesterday we did the tricky bit and talked about how fatigue feels, so it's time to get onto a slightly more upbeat topic and talk about some coping mechanisms.

It’s going to be pretty tricky to list every single thing I do to save or build energy in one post, considering that’s what I spend 90% of my time doing, so I’m going to focus on a more general overview this time, and then I’ll do posts on more specific items and behaviours another time.
If you have a preference of how those are presented (by room, or in the order I use them for example), then let me know .

I made so many mistakes in the first few years of this illness, so please don’t beat yourself up if these are things you haven't tried, or taken seriously, in the past. That's most definitely not my intention, and I've probably struggled to change just as much as you, if not more.

For a long time I didn't really understand, or want to understand, how serious my situation was (and is), and it took a severe downward spiral in my health to make me realise that I had to alter the way I was approaching my illness.
If I can write anything that might save anyone the pain of downward spiral, and help them reach those realisations without one, then I will.

1. The different types of tiredness

There are several different types of tiredness, even though it's difficult to tell when they all feel so awful!
Obviously, there's physical tiredness, but you know that feeling after a good cry? Emotional tiredness.
There is mental tiredness, that comes after using your brain for a period of time. (Obviously when you have ME/CFS that period is a lot shorter!)

There's even environmental tiredness; where you become fatigued by your own surroundings. It's that natural feeling that you need a break to stretch your legs after being in one place for a long time.
Changing your surroundings, or your position in a room, means sufferers can get some relief from this. If you are bedbound, even turning your head to the side can give you a new, slightly different view.

I also consider social tiredness a separate type, although technically I suppose it's a mix of mental, emotional and physical. But I find this one wipes me out the most, and sometimes I can still read a little or do another small activity even if I'm out of social energy, so I consider it different.
It's important to take these different types of tiredness into account when resting, because the best way to build energy, and get relief from the constant fatigue, is to address ALL these types of tiredness.

Resting to an ME sufferer has to mean a complete physical and mental rest. And emotional if you can manage it. Mental tasks, and emotions are just as tiring as physical ones, so it’s really important to get good quality rest that reflects that.

If you're lying down but using mental and emotional energy to worry about things, as I often did, then that's not going to help, so there are different things you can do to make sure your whole self is relaxed as possible.This leads us nicely into our next point.

2. Relearning Rest

By far, the most important thing you will ever to do to fight this illness is to relearn how to rest properly.
Most healthy people think of resting and think of putting their feet up and watching some crap telly, but when you have ME/CFS that just isn't going to cut the mustard. (Which sucks, because who doesn't love Homes under the Hammer?)

Our bodies simply do not have the capacity they once did, and anything that isn't relaxing your body and mind completely isn't really resting. And yes, that means TV. Le sigh.

My immediate reaction when someone first told me this was to get really defensive and angry at the thought of having to miss out on another thing that no one else was, but I'm so, so glad I did it. There were tears and strops and angst, but it was most definitely worth it.

Lying down, shutting your eyes and relaxing your body and mind as much as possible is really the only way to build the energy we're using back up. (At least until the scientists come up with a magic pill!)

It's harder than it sounds, but over time I've found a few ways that help me completely relax my body, mind and emotions.
It might sound like a bit of a faff, but it's completely worth the effort. Resting properly has been the single thing that's most helped me to improve.

Channel your inner Jess

It's not easy to change your habits after years of doing things a certain way, but I think after a time having a chronic illness like ME/CFS, you come to a realisation: pretending things are the same doesn't work. If you want things to be different, you have to be willing to change.

3. Tips for resting 

A. Focus on your breathing

Try to breath into lower abdomen, because this mimics how we breathe when we're asleep, so it automatically calms the body. 

Listen to the sound of your breaths and focus on the sensations of breathing. Your breath feels slightly cooler on the way in than it does on the way out, so notice all those little details.

If it helps you can imagine a calming, repetitive image to breath to, like waves on a beach.

B. Use your imagination

There's a meditation technique called visualisation that can be really helpful if you're struggling to focus.
The mind naturally wants to think, so you can use that and think of something that helps you; a really relaxing place, for example.

Lots of people like beaches, but I'm more of a forest fan, so I try to imagine myself in a forest and try to get as many of the details as clear in my mind as possible; the light, the smell, the sound, what I'm standing/sitting/lying on, how the bark would feel. Everything.
It's great if you don't get to go out much too, because as you get better at it it's almost like you're actually there.

You can also visualise your body and try to "heal" it. There's all sorts of studies and statistics into helping the body through visualisation, and, while I don't think I can think myself out of having ME/CFS, it can be relaxing and weirdly fun to imagine tiny workers fixing things around my body.

It's frustrating not having any medications to fight ME so it feels like you're doing something positive, and even if you don't want to try imagining healing things, you can imagine soothing and relaxing muscles, and that's pretty helpful.

C. Do not beat yourself up

Resting like this is hard, especially if you’re doing it for long periods, multiple times a day. There will be days when you struggle and get annoyed and frustrated, so when that happens, as it will, don’t beat yourself up about it.
Even when resting is going well it’s still boring and you’re going to get distracted so just do your best, and try not to worry past that.
It’s perfectly natural, so be kind to yourself. 

If you struggle, then think, "what would I say to my friend if they were in this situation."

D. Meditation tracks

By far the most useful tool I’ve found for resting, and it’s especially useful if you’re struggling to relax and switch off.

I use meditation apps on my phone, and I also have a separate iPod Shuffle that I use to keep meditation tracks on.
(I like to have a no-screen option available to me, because sometimes I’m liable to get distracted if my phone is on, and also because I have tracks on there to help me sleep if my insomnia is flaring up, and I turn my phone off at night to help me relax and signal to myself that it’s the end of the day. If I need to use my sleeping track, I don't want the bright light of the phone screen making me more awake.)


The main thing to remember about both apps and relaxation tracks is to find a speaker that you enjoy listening to. If you find them or their accent annoying then you’re not going to relax. 

There’s a man who does relaxation tracks (who I can never remember the name of) who has a really strong London accent. Loads of people find him really helpful, he’s actually pretty famous in the meditation business, but to me it just reminds me of living in East London and being really stressed, so I don’t use his tracks.

There are loads of options to choose from, and a quick search online will give you loads of possible choices, but here are some apps and tracks I’d really recommend:

 Digipill - App on iTunes and Google Play. 

This is a free app that comes with one relaxation track, and then you make in-app purchases to download any further tracks you might want. The speaker is called Brian Colbert, and he has a very soothing Irish accent.

Andrew Johnson - Andrew Johnson has several apps on iTunes, Google Play and Amazon Android and Kindle store. 
He also has a website where you can purchase mp3s onto your computer (and therefore any mp3 players you might have).

My favourite of his apps is Relax +, because it allows to you tailor your track to exactly what you want. You can control the background music, the length of the track, whether to finish the track as if you’re waking up or going to sleep, everything.
Again, there are some things included in the free app, but you then download any extra tracks that you might want.
His voice is a calming Scottish accent.

Mindfulness - App on iTunes. 

This app is made by Yuza, the same people who released the Digipill app, but features Professor Ursula James (RP English accent) who guides you through a set mindfulness meditation. You can choose whether or not to have birdsong playing in the background.
It’s a great first look into mindfulness, and is £1.99.
I actually prefer this to the Digipill app because the background noise/music is more balanced with

 the voice.

Relax (Muji to Relax) - App on iTunes. 

If you just want to listen to nature sounds, Muji has released a great little app that includes ocean sounds, birdsong, a crackling fire, a river, a waterfall and forest sounds. All of this and it’s free.

Meditation tracks provided with ‘Mindfulness: A practical guide to finding peace in a frantic world’, by Mark Williams and Danny Penman. 

This book is absolutely fantastic, and guides you through a really great introduction to mindfulness, but my favourite part is the CD of meditation tracks that come with it.
The male voice (I’m not sure whether it’s Williams or Penman) is RP English and just really, really soothing. 

What I like most about the mindfulness practise is that it constantly reiterates that it is normal for minds to wander, and that you don’t have to feel bad if that happens. This was actually my first foray into meditation and I’m really glad I started here.

Penman also has a book written with Vidyamala Birch, specifically aimed towards sufferers of illness, called Mindfulness for Health. Although it's specifically aimed towards sufferers of chronic pain, there are some interesting concepts around primary and secondary pain which some may find useful. (Basically when all the "oh god, not again" feelings make you tense up and get into a bit of an emotional spiral.)
They do, however, specifically say that a. that does not mean your pain is in your head, and b. even if your pain is psychosomatic, that doesn't mean you're not feeling it (useful for other conditions).

I've not listened to all the meditation tracks from this book as yet, but they seem good. Vidyamala Birch, who guides the meditations has a musical voice with an RP English accent. 

So far I prefer the meditations from the other book more, but I think that's because the man leaves more gaps in between talking to focus on the meditation. If you're new to meditation, or suffer from chronic pain quite severely, you might find it more helpful to have a more active guide.

Learn to Relax series, and Self-Hypnosis series - tracks from the Optimum Health Clinic.

If you are part of the OHC, they have some great tracks around relaxation.
I personally prefer the self-hypnosis ones, because I find the woman's voice (RP English) there more relaxing than the man's (RP English), and because the self-hypnosis tracks involve more visualisation, so I'm less likely to get bored and distracted.

The OHC is a private clinic that specialises in ME/CFS and Fibromyalgia, so these tracks are targeted specifically to sufferers of those conditions, but to get access to these tracks you have to have taken part in some form of their therapy, which isn't cheap.

I personally have found the OHC to be very helpful; the psychologists have all suffered from ME/CFS, it was founded by a sufferer, and they are able to help you from home via phone or videocall, but it is an expensive route to go, and there are plenty of other tracks and help available if you're not able to afford their prices.

Please don't feel that you need to spend a lot of money in order to recover. If you're able to afford more support, fantastic. If not, then that is what blogs like this are for!


I will leave it there for today, but there's still lots of tips to go, so check back next time for information!



Sunday, 23 April 2017

ME Symptoms & Tips: Fatigue - Part One


Hello my lovely loves!

This is the first piece in a series I've been meaning to write ever since I started this blog. I really want to discuss ME/CFS symptoms individually, to try and explain how they feel to non-sufferers, and how I combat them for the fellow Spoonies.

It's taken a while to get to this point, partly because I felt there were other things I had to discuss before this would make sense, but also because it's really, really difficult to find the words to express how specific symptoms feel.
It doesn't really help that the first symptom that really needs to be addressed is fatigue, and this is one that's really difficult to put into words. I will try, though!

For my fellow Spoonies, the first part of this post is going to be me trying to get across how hard things are. You might find that helpful, but equally you might also find that upsetting, so if you'd rather skip that part and go straight to the section on coping mechanisms, then I will be posting the first tips section tomorrow. You can sign up for email notifications of when I post if you like too.

Most sufferers have a go-to metaphor for trying to explain ME/CFS fatigue. ME/CFS fatigue is not like normal tiredness, but we're always trying to find understandable ways to explain it to non-sufferers. 
I've heard someone liken the difference by comparing walking to the shop to doing a marathon, riding their bike in the wrong gear, or trying to walk backwards through treacle with a hangover. 
I've said it's like having a constant wine hangover, like having weights tied to your limbs or being a phone with a broken battery.
All of these are pretty spot on, but for me the one thing they miss out on is the relentlessness of the fatigue. 
Those are all great to explain the bizarre "dear-god-why-is-everything-so-difficult-now" feeling in the short term, in a short, relatively light-hearted way, but it doesn't really explain the full extent of the problem, because all over those things end.
Hangovers go away, ME/CFS doesn't.

I've always kind of thought of Spoonies in general as a bit like Sisyphus, the character in Greek mythology who is sentenced to push a huge boulder up a hill in the afterlife for all eternity, only to watch it roll down again and again, ready for the next days work.

From Gizmodo

(Although actually typing that has made me realise that the reason people use short, relatively light-hearted metaphors is probably so they don't sound that over dramatic.)

For once, though, I'm going to use the metaphor that I have never said. The one I've always thought but never felt comfortable actually saying to anyone else. It's really more of a story, so you'll have to bear with me, I promise there's a reason to making it so long winded.

Imagine this:

You've had a hell of a day. It’s 8pm, it's absolutely bucketing it down, you’ve just left work, and you've got to take public transport home.

You've had to work late because there's a big deadline coming up and all of the other people who are meant to be working on it have come down with this horrible flu bug that's going around, so you’ve ended up doing about three people’s work for the last couple of weeks. 

This is bloody typical, because they were barely pulling their weight before so you’ve been juggling everything to make the whole sodding thing work for the last couple of months and you’re so, so sick of it. But it’s important, because you need this job, and the pressure is there to keep it (despite all the back breaking work, you’re so skint it’s unbelievable), so you’re hanging on, and working through it as best you can. 

Your boss has had a terrible day too, and, as the only person in the firing line, you really don’t want to mess this up. It's a barrage of constant questions and emails and calls and jobs to do, and you're not quite sure how you're going to manage.

You've a horrible feeling that you're coming down with the bug too, because you're head is pounding and your eyes are scratchy and everything just aches. You were hoping that it was just the wine from the boring work dinner you had to go to from the (late, late, late) night before, but the odd disconnected feeling hasn’t left all day, moving feels difficult, and your concentration is just getting worse. You can barely think.

There’s no way you can get ill now because there’s so much work ahead of you, and you’re the only one who’s still upright. Just.

The walk to bus stop is frigid and wet and there's no room left under the shelter so you have to stand in the rain waiting for your bus.The first two buses are too full to let you on and they drive right past, splashing your legs from dirty, freezing puddles.You can feel the water trickle through the insides of your shoes.

It's cold and wet and dark, and, when you finally get on the bus, it has that horrible warm, dampness that feels like germs, and getting sick, and smells like B.O. and passive aggression. There’s a child screaming and they just. Won’t. Stop. 

There are no seats left and you’re jammed against several other commuters, who seem as happy about it as you are. It’s almost a disappointment you’re not packed in more tightly, because then maybe you could rely on the crush to hold you up.
You’re now sweaty, even though you still feel chilled, and it feels disgusting. Your head keeps pounding.

The bus terminates before it’s supposed to, but there’s no bus stop, and you're fed up of standing and waiting, so you trudge on home. Your legs hurt. Everything hurts.

You walk down the cold street, and your hair is plastered to your head because your umbrella broke on the way into work, and you had to work through lunch so you didn’t replace it. You didn’t really have the spare arm to carry one anyway. The cold water is making your neck ache worse, and your bags feel like they're getting progressively heavier. Your wet shoes are chafing your feet.

You walk up to your cold, dark house. No one is in, and all you want to do is crawl into bed and never leave.
You look for your keys, but when you look through your bag... you can’t find them. You look through everything frantically, before realising you must have left them at work. 

It’s cold, and raining, and you’re damp, shivering, sweaty, achey, weighed down and so, so exhausted that you can barely think or keep yourself standing, but if you want to go inside and lie down, you’re going to have to go back and do the whole thing again. 

That. That instant when you don’t know whether to cry, or laugh hysterically, or scream, or pass out, that’s how ME/CFS feels when you wake up in the morning. When you’ve just slept.
Like you’ve already run a thousand marathons, with a thousand hangovers, and dear god you are so tired of it you don’t know how you’ll make it through the day. It’s not the tiredness that gets you. It’s that it never goes away.
Physical tiredness is hard, but the kind of bone-deep, soul-deep exhaustion that comes of being exhausted all the time is in a league all of it's own.




It doesn’t have to be like that, and just because it has, doesn’t mean it always will. 

To my Spoonies, we can beat this. You know that it really is that hard, and sometimes, if you’ve pushed yourself, or something unexpected has happen, it’s even worse. I’ve spoken about that before, and I will again.
But, there are ways to beat back the tiredness, the never-ending exhaustion. Hopefully, one day it'll go completely, but in the mean time we can definitely make it more manageable, so that each day the burden gets easier to bear, until the load gets lightened.

And now I've thoroughly depressed everyone, here's a puppy.

Ah, Google. You never let me down. (Except when you don't pay your taxes.)

I'll see you tomorrow for the first lot of tips.



Saturday, 18 March 2017

The Wheelchair Saga: Update

Hello my lovely loves,

Every now and again I have days where it's a lot harder to be housebound than others. Days when I want to eat my weight in chocolate, and cry, and smash things.
It can be a dream that sets me off, particularly one where I'm healthy that makes me remember exactly what I'm missing; a comment or question someone's mentioned; or even just the weather.
Some days it's just harder.

Today it was a casual question about my wheelchair. I've been asked lots of times recently about my wheelchair and it's never bothered me before, and it probably won't tomorrow, but today... it did.

I recently did a post about my new sense of determination, and that I was going to use that sense of determination to get myself a reclining wheelchair so I could get out of the house.
I actually already have one. It went far, far quicker than I thought it would, and a battle I thought I was going to have to fight for most of the year was over within the span of a few weeks.
Go Team NHS.

I had an appointment with the local Wheelchair Service and, although I don't think he completely understood the situation, the Wheelchair Man was willing to get me a new wheelchair of the same model as my previous one, but with raising leg rests, a reclining back, and a better headrest so I could try it out.

I had a few tears, both because I had become really nervous about the appointment and having to explain my situation to someone new (never fun) and was relieved it had gone well, and because there's still a part of me that can't believe that I actually need a wheelchair.

I countered this by coming up with some new names for my new wheelchair. The old one had been called Gavin, but I felt this one should have something with a little more pizazz. And preferably some kind of pun or geeky reference.

The options included:


The Righteous Indignation 

Wheely McChairface 

The Black Pearl

The Delorean (suggested to me by a friend)

Hardly Davidson 

Jurassic Parking

221b Baker Seat

Mustang Hanni (thanks for that one, Mum)

Axled Rose

Hannah with the good chair

Jane (Exh)Austen

River (as in "Rollin' on the...", another friend's suggestion)

Despite these names, I was trying not to get my hopes up too much, which, it has to be said, I failed spectacularly at. 

In my heart of hearts, I was hoping that I'd get my chair, and be able to go outside immediately, weather and spoons permitting.
I could feel that grass on my fingers. (Not on my toes, because it's still flippin' freezing, and I'm not taking my thermal socks off until at least June.)

The chair I have currently is much, much better than my previous one, but I'm still going to have to train to be able to use it. And when you've been waiting as long as I have to leave the house, and it takes as long as it does me to improve physical strength and stamina, that's a big deal.
Emotionally and mentally I am ready to be out there, but my illness and its accompanying physical condition is holding me back.

The headrest isn't particularly comfortable and is really designed to keep your head as upright as possible, which is great for most wheelchair users, but isn't really what I need to be doing.
It's a bit like a car seat headrest, and we all know how comfortable those things are. They’re basically there too make sure your head doesn’t snap back too far in case of a head-on collision. My parents may not be used to pushing a wheelchair, but I doubt it’s going to come to that.

Again, it is better than the previous one, and it is somewhat adjustable, but the Wheelchair Man forgot to leave the allen key for it so we'll need to contact him again before fully deciding on whether it's suitable or not.
Either way, I'm going to need to build up my neck muscles and potentially wear a neck cushion when in the chair.

The raisable leg rests are good, if a little short in the leg for me. (The curse of being a tall person. Mum may complain that the family's long legs skipped her, but sometimes they're more trouble than they're worth!)

The reclining back is okay, but doesn't quite go back as far as I need to be fully comfortable, so I'll need to build up my back muscles and my overall ability to tolerate different postures.
(We think it's likely that I've developed a mild form of POTS, which is pretty common among ME sufferers, especially those on the more severe end of the spectrum. 

It basically means I find it difficult to hold certain postures because it sends my blood pressure and heart rate all over the place and I feel very dizzy and faint. That's why I can walk short distances but struggle to stand up still. It's also why I need the leg rests.)

There's also another slight problem; because the chair isn't a fancy tilt-in-space chair, it has a fixed point of balance, so when my weight in on the reclined back it makes it a bit unstable and liable to tip.
There are stoppers (a bit like stabilisers) to stop it tipping over completely, so I'm not going to get hurt, and having the leg rests raised does combat this a little, but we'll have to be very careful with it, or I could go backwards like a kid in a pushchair with too many shopping bags on the handlebars.
(The Wheelchair Man did demonstrate this too me, and the sensation brought back a lot of early memories.)
It does, however, mean that we're not meant to recline it very far when it's being pushed, which, frankly, we're going to have to ignore if it's to be of any use at all, because that’s kind of the point of us having one.
It is so much better than my other one... but there's just a host of other problems. It's just all very frustrating. 

I, of course, didn't actually get to say any of this to the bloke, because I was far too knackered after sitting in the thing for a few minutes to have the strength needed to be able to articulate this to him, particularly as he didn't know anything about ME and the bizarre requirements us sufferers have quite outside regular wheelchair users.
I'm also pants at sticking to my guns in these situations.

After all this, I thought I'd do a bit of research into other options, either to present to the Wheelchair Service, or to look into getting myself.
The problem I've found, is this.

As far as I can see, fancy tilt-in-space chairs don't actually recline further than the one I have, or at least from the ones I've seen.

There is a normal style wheelchair that reclines to horizontal and has a flat headrest like a lounger chair, but it would have the same problem with instability, and one thing the Wheelchair Man mentioned in passing: the handles on wheelchairs are behind the head or shoulders. When the wheelchair is reclined, the handles to push it become basically inaccessible.
Wheelchairs are not designed to be moved when the user is reclined. Which is where I excuse myself to go and swear like a sailor for a few minutes.

Basically, what I really need is an adult-sized buggy. 

Thank you, Google Image search, for providing this.

As far as I'm aware, that doesn't exist. (Although if anyone knows of anything, then feel free to correct me.)
At this point, I'm genuinely considering lashing several skateboards together and rounding up the local dogs to create a makeshift sled team. 

So, today is hard, and if I don't seem to want to talk about wheelchair things, then that's why.
But tomorrow will be better. And in the mean time? There's chocolate. And Mum even has a couple of old flower pots she doesn't need anymore. Smashy, smashy!


Monday, 20 February 2017

Cheese vs Freedom: My ME Diet

Hello my lovely loves!

Today I thought I'd give you a little more insight into one of the ways I try to help control my ME/CFS: my diet.
I've been on my current diet for about two years now, and while I can't say it's fixed every problem, it's definitely helped. My nausea is basically gone, my guts aren't nearly as angry at me, and I find it much easier to control my blood sugar drops.

One thing I would say before we start though, is that this diet has been tailored to me by professionals, and that I had to have a variety of tests (and a great deal of trial and error) to get the right balance.
I'd be very supportive of anyone wanting to improve their diet, but I'd definitely recommend doing it under the guidance of medical professionals. The balance of ME sufferer's bodies is quite easily upset, so it takes a pretty close eye to make sure that you're not going to damage yourself.
Stay safe, kids. *awkward wink and point*

Through the wonders of the internet, I'm able to see the Optimum Health Clinic on a regular basis, who specialise in ME/CFS.
The clinic has a set diet plan for patients, which is then altered to suit the needs of each person, according to their symptoms and test results. It's a bit like a bastardised paleo diet.

Mine looks like this:

At least half of every meal should be vegetables. My tongue is almost permanently stained green.

I did not sign up for this.

Sugar makes the blood sugar (and energy) levels more likely to peak and trough, so no processed sugar of any kind. Natural sweeteners, like honey or maple syrup, are allowed occasionally in small doses.

No alcohol (because alcohol is basically sugar).

Only two portions of fruit a day (to limit sugar intake). Includes juice, which should be mixed with water.
Avoid dried fruits, due to the high sugar content.

Limited carbohydrates only. No potatoes, wheat or gluten. Brown rice, quinoa, non-gluten oats, buckwheat flour, and maize couscous are acceptable. We’ve now found pea and quinoa pasta which is wonderful because I didn’t have pasta for about a year and a half after we first started this diet.
(I'm only meant to have one portion of carbs a day, but we fudge this a little due to my blood sugar problems. Also because I can't eat many pulses to replace the carbs. My gut does not like pulses unless they're ground into a paste before they go anywhere near my face. 

Fortunately, that means I can eat hummus, which is the best thing that can be made from pulses anyway.)

There are two parts of milk that people can be allergic to, lactose and casein. Lactose can be removed quite easily in many products, but the only thing that lacks casein, is ghee, which is removed from the butter during the clarifying process.
Naturally, I can't have casein, so no milk products for me. Horror of horrors, this means NO CHEESE.

Avoid all processed foods due to chemical sensitivity. Eat organic wherever possible.
Since doing this for a couple of years, I can now taste chemicals in food and can tell when vegetables aren't organic.
As a friend pointed out to me recently, I now have the most middle class superpower ever.

No caffeine.
It might seem bizarre when you're tired all the time, but if you're trying to avoid peaks and troughs in energy levels, then chemicals that make your adrenaline spike, and then gives you withdrawal isn't the way to go.
Decaf is better, but then it's pumped full of chemicals, so it's best to only have it occasionally, if at all.
I mostly drink water, coconut water, camomile tea, fennel tea, or ginger tea. I do miss tea and coffee terribly, but I do understand why I shouldn't have it.
I did take a stand and decided I'm allowed one small hot chocolate a day. Because I'm a rebel. (And also because chocolates caffeine content is minimal.)

When cooking, use ghee or coconut oil, rather than cold pressed oils, which should be reserved for dressings.

Nuts are fine, with emphasis on them being raw, but peanuts should generally be avoided. I have no idea why.

Lots of protein. Meat, fish and eggs. Especially oily fish. One of the leading theories on ME/CFS is that our bodies have got mixed up and now make energy through the far less efficient fats and amino acids instead of carbs, so, on that logic, lots of protein is the way to go.

All of this is supported by a cocktail of supplements, as my body finds it more difficult to get the nutrients it needs from food.

(We also introduced six small meals instead of three large ones to accommodate for my nausea and blood sugar drops. It's much easier on your digestive system to have smaller, more regular meals to work on, and a constant stream of food stops you fainting if your hypoglycaemia flares up.

One thing that's also really helped with nausea is having our main meal at midday, instead of in the evening.)

Originally, I also wasn't allowed foods high in tyramine, because there was a chance they were giving me headaches.
That includes all cured foods, like smoked salmon and bacon, soy sauce, vinegar, and, I'm sorry to say, chocolate.
However, we found out through trial and error that this wasn't what was triggering my headache. Thank f...flip. 

As you can imagine, when the Optimum Health Clinic sent me my new diet plan I did what any mature, well-balanced person who wanted to get better would do... I burst into tears.
You would not believe the amount of things that have sugar in. Tinned soup. Baked beans. All ready meals. Even stock cubes have sugar in them, so Mum's spent a fair amount of time boiling bones to make her own. Don't even get me started on chocolate.

I've got to say that, at the beginning, it felt like one of my only pleasures was being taken away from me.
At that point I'd been housebound for several months and was still pretty much at my lowest ebb. I'd only just started my resting ratio and I hadn't yet started to see the benefits from it, so it seemed like I had nothing left to enjoy. My parents were very, very worried about me.

But... I wanted to get better. And if it meant giving up cheese, mash, and toasted teacakes, then that's what I'd have to do. Even if I hated it. 

The withdrawal from sugar made me feel terrible for about two weeks, and I've had to be super careful adding all my supplements into the diet, due to weird reactions. Some make me tired, some make my guts angry, one even made me horribly depressed when I had too much of it, so each thing is done very, very slowly.

In the end, I have found a balance that works for me, and many great substitutes for common foods. Chocolate was first on the list, but I’ve found some GREAT dairy free, coconut sugar versions that are delicious. Plus cacao (cocoa that's been cold pressed instead of roasted) has loads of health benefits so I don't have to feel bad eating it.To be honest, stuff with regular sugar in it tastes waaaaaaay too sweet to me now anyway, so it's worked out pretty well.

Most things can be substituted pretty well, except strong mature cheddar, and, weirdly, most Heinz tomato-based products. I dream of cream of tomato soup, although I can technically get away with no added sugar baked beans on occasion.I still have small amounts of Heinz ketchup sometimes, because I tried the paleo stuff, but I have standards, goddammit!

I'd like to take this moment to thank my Mum. She's always been an amazing cook (as well as amazing Mum), but with me feeling sad about my new diet, she really pulled out the stops.
I could not have done this without her. She's learned a whole new way of cooking, and researched breakfast cereals I can have, suitable bread substitutes, everything. In fact, the only thing she doesn't make herself is the hummus.

To be honest, I'm not sure how someone with ME would be able to keep up this diet unless they had someone to help or do it for them. (Although my situation isn't helped by need to have six meals a day instead of three. I do get to have second breakfast like a hobbit though, so that’s nice.)
It's not a cheap diet either, but, as I've said before, I'd walk on nails if it'd make me better, so spending a bit more on food doesn't seem like too bad a sacrifice.

My daily menu looks something a little like this.

1st Breakfast 7-8am:
Two heaped dessert spoons of homemade granola with unsweetened almond milk (a mix of nuts, toasted in vanilla and macademia oil, mixed with unsweetened desiccated coconut. It's nice, but to other people it tastes weird because there's no sugar in it. It took me a while to get used to eating something so savoury as a cereal.)

2nd Breakfast - 10am:
Small bowl of gluten free porridge with fruit, or
Buckwheat pancake with either fruit, or savoury fillings of ham, sundried tomato, or coconut “cheese”. Sometimes Mum makes fancy pancakes with smoked salmon and soft "cheese" (also made from coconut. Many, many things can be made from coconut.)
Savoury breakfasts come with salad. I prefer savoury breakfasts because they give me a bit more energy in the mornings.

Hot chocolate - 11am:
Raw hot chocolate with unsweetened soya milk (made with cacao) 

Lunch - Midday:
There’s a wide variety of options here. We’ve found a lot of ways to do normal recipes by substituting ingredients, or just putting it with one of my carb options instead of potatoes or pasta. Today we had goulash and brown rice, with lots of broccoli.
I’ll often follow this with a cookie made from this life-saving recipe, or piece of my coconut sugar chocolate. Sometimes mum makes other things too. There’s a really good ginger cake by Hemsley and Hemsley that’s to die for. I do try not to have something sweet every day, but it's really difficult.

Vitashake - 1.30pm:
The Frankenstein’s monster of food stuffs, made from a banana, almond milk, and a vitamin supplement called Fast and Be Clear. Sometimes I put a spoon of cacao powder in when bananas have started to make me sad.
The makers of Fast and Be Clear have the gall to put “tastes great in water” on their packaging. I can only assume that their tastebuds died long ago, because, in water, this supplement has the texture of wet sand, and the taste of pre-digested food. That’s right, it’s vom-sand. Banana-based milkshake is the only thing that masks the taste sufficiently for me to be able to drink it.

Afternoon snack - 2.30pm:
Crudités and hummus. YAY, HUMMUS!
Sometimes I have celery and nut butter if Mum’s worried that I’m eating too much hummus, or if I have eaten all the hummus. 

Pond water - 4.30pm:
Another supplement that's mixed with water. It tastes vaguely of vegetables so it isn't too bad, but I try not to look at it too closely when drinking it. The reason for this is quite plainly explained it the name.

Dinner - 5pm:
Either homemade soup, homemade ham with herby oatcakes, or a sandwich on homemade flaxseed bread. Sometimes David will make me smoked salmon and scrambled eggs.
More salad. (Always more salad.)
More supplements.

Supper - 8pm:
Two heaped dessert spoons of homemade granola with unsweetened almond milk.

I lost about a stone within the first six months of changing to this diet, but slowly, as my health has improved, my weight has stabilised and I've started to gain a little back.
There was a part of me that enjoyed being lighter, as I've never been anything that approaches skinny before, but unfortunately, instead of svelte I just looked rather straggly and gaunt, so it's probably a good thing.
My gut function is better, my skin, nails and hair are all better, and, yes, I do have more energy. I think a major part of that is down to the resting ratio, but it's definitely helped me to have my digestive system so well supported.

Sometimes there are days where I can't face eating another vegetable, and I just get that moment from the Vicar of Dibley stuck in my head, where Dawn French tries to force another sprout into her face.
But, when it comes down to it, between cheese and freedom, I know which one I'll choose.

Helpful links on foods:
Cheese: Violife cheese is made from coconut and melts realistically.
I like the soft cheese, cheddar cheese (which doesn't really taste of much, but also doesn't taste horrible), and the Parmesan version (don't be put off by the smell, it's actually quite nice).

Chocolate (all with natural sweeteners):
Real food source - great for lots of clean foods, but their coconut sugar chocolate in particular is great. We also use their almond butter to make cookies.
Raw Halo - great flavoured chocolate, like orange, mint, and salted caramel.
Almighty Foods - tastes the closest to real milk chocolate
Elements for Life - where I get my hot chocolate (the spiced one is lush) and also sell brownies I can have called Yummy Scrummy. And they really are.

Mentioned recipes:
Hemsley and Hemsley ginger cake, and flaxseed bread.
The magical chocolate cookie recipe that changed my life from PaleOMG. Seriously. Everyone who's tried these has asked for the recipe, even if they're on a normal diet.

Tuesday, 31 January 2017

Top Tips for Benefits Applicants: Part Three


It’s that time again! Part Three of my benefits guide. The final furlong, and we’re getting info on the assessment.

13. Find out where your assessment is

This seems obvious but it’s not unusual for the things you’ve requested for your assessment to not be taken into account. 

I’ve said on numerous times to numerous people that I am housebound, only to have someone try to make me go to an appointment outside of my home. (They tried, anyway.)

The first application I made (when I was still able to leave the house) stated that I couldn’t manage stairs very well, so my assessment would have to be on the ground floor.
When I received my letter the room number appeared to be quite high, so I rang the centre to ask what floor the room was on. It was two floors up, there was no lift, and the ground floor rooms were “only for wheelchair users”, which I wasn’t at the time.
In the end I explained to them that if I walked up two flights of stairs, I wouldn’t be fit to do the appointment, so I’d need a home visit. I got a note from my doctor and the home visit was arranged.

The moral of the story is make sure you check that your needs are being taken into account, and explain why an assessment will not be possible if they’re not. You might need a doctor’s note, but you are well within your rights to need certain things to make an appointment possible. 

14. Polite, not friendly

When you do have your assessment there are some things to bear in mind, and the main one is this: the assessor is not your friend.
It is not your duty to entertain them, or run around after them, especially when you’re going to have to pay for it later.
Be polite, of course, but not overly friendly. It is not worth overtiring yourself to do something that will, frankly, likely harm your application rather than help it, as you'll appear to be able to comfortably do more than you really can.

It’s also okay to get upset during your assessment; it’s not an easy topic to discuss, so don’t feel embarrassed about it.

And remember, despite the horror stories around, nice assessors do exist (mine were), so don’t panic. They may not be your friend, but that doesn’t make them your enemy, so try not to get defensive if you can help it.

15. Witnesses 

It’s my opinion that you should always have at least one other person with you in your assessments. I normally have both my parents.
Assessments are intimidating, and most of us suffer from cognitive dysfunction anyway, so we’re likely to forget important details, particularly when stressed.

The main reason, however, is that there are a lot of horror stories about information being ignored or altered, and it’s much, much harder for things to be ignored or altered if there is a witness with you that can back you up later.
My parents take their own notes during assessments.

If you don’t have family available, a friend, or a carer can sit in on your assessment. Just make sure it’s someone who understands your situation and isn’t liable to downplay the reality.

Another option is recording your assessment, but there are a lot of hoops to jump through to make that happen. 

You have to inform them that you want to record the assessment in advance. If you don’t they can terminate the assessment (and therefore, presumably your application).

If you try to record the assessment without their knowledge and consent, they can terminate the assessment.

You can request the equipment from them but they’re under no obligation to provide it.

If you want to use your own equipment to record the assessment to make sure it’ll happen, you can only use either a double cassette tape recorder, or a double CD recorder, so both copies (one for you and one for the assessor) can be recorded at the same time with no tampering. Failure to use the correct equipment means the assessor can terminate your assessment. There's obviously the cost involved in purchasing the correct equipment.

At the beginning of an assessment you and the assessor have to sign paperwork to give consent and agreeing to their terms of how the recording can be used. I’m afraid I couldn’t find out what those terms are, but if you refuse to sign the paperwork, the assessment will not be recorded.

I’m not saying that recording is impossible, or that it won’t help keep things on track. I think it’s a brilliant idea, especially if no one is available to accompany you. However, it’s not easy to organise, so it’s something you should bear in mind when thinking about what you can physically manage.

If you're bringing your own equipment to an assessment, it's likely to be heavy and cumbersome, and if you're the one carrying it, then that's likely to count against you, even if you know you're going to pay for it later, and it’s not something you can do all the time. 

A lot of assessors won’t understand how quickly you can go from just-about-functioning to completely non-functional, or how long it can take to get back from it. It’s frustrating, but it’s not exactly something new to ME/CFS sufferers, or sufferers of any fluctuating condition.
If you do decide to go that route, then you’re really going to have to drive home just how much you have to pay for your exertions.

(Edit: A brilliant piece of advice from an anonymous commenter, is to buy two identical smaller tape recorders. Apparently this was accepted in their assessment! Great tip! They suggested the one in Argos, which looks pleasingly like the recorders used in police dramas the world over. 

Another comment said this wasn't accepted during their assessment, however, so it's probably best to ring and check with your local assessment centre, or the number provided on your appointment letter.

If you do, take the name of the person you speak to, and note down the date and time. If you get the all clear you can then provide them with information on exactly who gave you the go ahead if there is any pushback at a later date.)

16. They are not assessing whether you are ill

Your assessors are not (or should not) be assessing whether you are really ill, or whether you have the symptoms you say you have.
The evidence supplied by your medical professionals is to do this. (And if you don't think your notes reflect this afterwards, then you're well within your rights to appeal.)

Assessors are meant to read your form and medical evidence before your assessment, so what they are assessing (as the format of the form's questions would suggest) is how your condition affects your ability to function in everyday life. Again, whether you can do things in a reliable, safe, repeatable and timely manner.

So when you talk to them, explain how things affect you, and the level of post exertional malaise/Payback you experience, and use the terms above.

PEM and fatigue are recognised symptoms of ME/CFS, so that fact that you will experience it shouldn't be questioned, although you may need to give a explanation of your symptoms to the assessor, if they haven’t read all your information.
Explain exactly how badly they effect you, and the steps you have to take to avoid Payback as much as possible and keep yourself safe. 

Talk about how a bad day looks, and how a better day looks, if you have them. Make sure you explain that your better day, is not a healthy person’s good day.

Make sure you explain if you can only do things in select circumstances, or with aids, like my hot chocolate example in part two, point 8.

It's basically reiterating your form answers. Feel free to keep a copy of them with you for the assessment if it makes you more comfortable.

17. Medical Assessments

Part of assessments can be a physical examination. You are well within your rights to stop and say if something the assessor asks you to do is hurting you, making you breathless, you can't do it, or it's tiring you too much.
If you know you can’t complete a task you can also just say so, and state the reason why.
PEM is a recognised symptom, so do not feel forced to do something if it's going to damage your health.

The point of a medical assessment is not to make your condition worse.

18. Appeals

In the event that you do not get the level of benefit you think you should, you have to right to appeal. I don’t have a massive amount of experience in this, but I’ll give you the information I’ve collected, and links to other places to find more.

First you can contact the DWP to ask for a Mandatory Reconsideration, using the information on your letter from the DWP with the first result of your claim. You have one month to do this.

The DWP look at the form you originally sent, your evidence, and the assessment notes and reassess. They’ll send you two copies of a letter with their decision.

If they still haven’t given you the benefit you feel you’re entitled to, then you can ask for a tribunal to be held. You have one month to request this, and you’ll need the second copy of the letter they sent. 

They’ll send information on why they came to the decision they did if you decide to take it further, but all the advice online says not to be put off by the size of it. Gather as much evidence as possible and prepare for the tribunal.

The ME Association states that generally tribunals go better if the claimant attends them, so if you’re able to, then go. Again, I’d suggest taking someone with you to help, and for moral support.

If you’re not able to go, then you’ll have to make a decision on what to do. As I’m housebound, it would do my health far too much damage to risk going to the tribunal myself, so I would have to ask my parents to attend in my place. I’m not willing to hurt myself like that.

I think it’s really dependent on people’s situations, but at the very least, if you’re not able to go in person, I would suggest you write a statement to be read on your behalf at the tribunal, explaining why your health doesn’t permit you to attend, and why you think the decision you’ve been given is wrong.

As I mentioned in the first section, there are some excellent guides available online, both free and for a small fee.

The following have sections or help on appeals:

The ME Association

Citizen’s Advice Bureau 

Disability Rights UK 

Benefits and Work

Fightback 4 Justice

Advice Now

M.E. & Chronic Illness Benefits Advice Group

Scope (search "appeal")

Kitty Jones' blog post

And that… is that! Phew!! You’ve finally finished! Thanks for sticking with me, and I hope you found it helpful! If you have any tips then feel free to leave them in the comments.
(I would ask, however, that you try and keep any comments positive. If people have come here, then it’s likely because they’re nervous, and so let’s keep it to useful, constructive suggestions.)

Good luck with your applications, everyone. And keep your chin up. You’re not alone, and you’re stronger than you think.


Monday, 30 January 2017

Top Tips for Benefits Applicants: Part Two


Hello again! Part Two of three of my benefits guide, and we’re still filling in that form. Let’s get this party started.

7. Consequences, physical, social AND emotional

The bulk of the questions on the benefit forms aren’t actually about the symptoms you suffer (although a list of them is a good thing to include. Depending on the benefit you’re applying for, there’s usually a question at the beginning asking about your symptoms).
The medical evidence you provide is meant to be the part that proves the existence of the illness, the questions will focus on exactly how those symptoms affect your life. The consequences of the symptoms, not just the symptoms themselves. Also, the consequences (or side effects) of the medication you take to manage your condition.

If you were to talk about fatigue, for example, you could give a general explanation that ME/CFS fatigue doesn’t go away like regular fatigue, and that it’s worse than a non-sickie’s fatigue at the beginning, but then the rest of the answers would be expected to reflect what that means for you. So, "my fatigue means I struggle doing x, and can’t do y, and z at all. My fatigue means I can’t see people socially because I get too tired etc."

Also, when thinking about the consequences your ME/CFS has, don’t forget to include the physical, the social and the emotional. I mentioned before that you’re illness might make you feel depressed or isolated, it might make you feel useless, or pathetic or worthless; those aren’t physical consequences, but they are consequences, and are every bit as important as the other more obvious effects of the illness.

(I’d like to point out that you’re absolutely not useless, pathetic or worthless. You’re sick, not lazy, but I know that it’s easy to feel those feelings when you’re not able to do the things you once did, and if you do, you need to mention it on your form.)

Do you spend less time with people? Does it make you anxious when you do spend time with them? Isolation and anxiety are both things that need to be listed.
Think about all the little changes you’ve made to your behaviour or routine to compensate for being ill. Those are all important consequences that you might not think of.

Something that might help is to write a list of symptoms on a separate piece of paper and hold it against the questions as you go, so you can compare how each one affects what they’re asking about at the time.

I think this rule is why you see a lot of examples where people with really obvious disabilities, like limbs missing, get taken off benefits. They assume (quite rightly) that the fact their disability affects their life negatively is obvious, and so don’t go into depth about how it affects their life, all the little changes they’ve had to make to accommodate their disability. 

The truth is, in our current system, there are hoops to jump through, and you need to make sure you’re jumping through the right ones to get the help you need. It sucks, but it’s unlikely to change anytime soon. All we can do, for now, is try and answer the questions so that the decision makers understand enough to tick the right boxes.
Let’s get you the things you’re entitled to, and then we can fight the good fight when we know you’re getting the support you need.

8. Safely, reliably, repeatedly 

The ME Association consider this the most important thing to remember, by far, so take note; the questions, and assessors, assess the impact of your illness in terms of whether you can do things reliably.
That means finding out if you can do things "safely, repeatedly and in a reasonable time”, and also whether you can do those things to an acceptable standard.

For a condition like ME/CS this is incredibly important for two reasons. Firstly, our illness often delays it’s consequences in the form of Post-Exertional Malaise (or Payback), so what might appear safe to an outside viewer isn’t always true (important in medical assessments), and secondly, our condition fluctuates, so we can’t always know whether we’re going to be able to do something or not until that moment. 

Our condition makes us pretty unreliable in lots of ways for that very reason.

I could say that I can make a cup of hot chocolate for myself, for example. However, I can’t always make a hot chocolate because I don’t always have the energy. On good days, yes, maybe, but not always. On bad days? Not a chance. I can’t do it reliably. 

I can’t manage to make more than one hot drink a day (because of fatigue), and it also takes me far longer than it would a well person to make even on good days, because I have to go and lie down while the microwave heats the milk because I can’t stand up for that long (fatigue, blood pressure problems, muscle weakness), or stand the whirring of the microwave (noise sensitivity). 
If I try and push myself on a bad day to do it because I’m thirsty and cold and my parents aren’t around it could easily become dangerous if I have an energy crash and trigger an emergency shutdown.

If an activity causes you to become breathless or triggers pain, you can’t do it reliably, because you can’t do it safely.

Motivation is also a key factor. If your condition means you lack the motivation to do something, for example if your ME/CFS has also made you depressed (for which a lack of motivation is a key symptom), that counts as not being able do it reliably.

When you answer your questions, you need to think in terms of whether you can do the things they’re asking about reliably, safely, repeatedly and in a reasonable time. Answer accordingly, and specify on each answer as if that's included in every question.
(This is another thing you could have on a separate piece of paper and put next to each question when you have the form.)

Here’s a transcript of the House of Lord’s debate where Lord Freud (DWP government minister) used the safely, repeatedly, and reliably terminology, for reference. 

9. Fill in as your worst days

There is some debate about whether you should try to give a general overview, or focus on the fluctuations of good days and bad days when filling in your forms. All I can tell you is my personal opinion, and I think that the discussion of good days and bad days does give a general overview, provided you explain what level those good days and bad days mean. 

After all, our good days are not like other people’s good days, so we need to explain that so that assessors know what we mean when we use that phrase.
If you don’t like using the phrase “good days”, try using “better days” instead.

You can discuss with a healthcare professional how they’d rate your activity level as compared to a healthy person your age, both for good days and bad days. This will give you a bracket to help explain your activity level to your assessors. They can then help you work out what percentage of your days are good days or bad days.

For my last form, my Specialist Physiotherapist wrote a letter as evidence to explain my activity level as compared to a healthy woman my age (5% on bad days, 10% on good days, which I still think is a little generous, I rarely go past 8% even on great days), and the number of days in a week that would be described as bad or good.

You can work out a rough estimate yourself by looking at an activity you had done before you got sick, working out how long that took you, and then working out how long it’s taken since you got sick (don’t forget to include the time it takes to recover from the activity), and comparing them.
For example it took me sixteen weeks to reread the Harry Potter series, when it would’ve taken me a week before I got sick, so sixteen times as long. One hundred divided by sixteen, is 6.25. 

My average activity level is therefore approximately 6.25% that of my healthy self.

In terms of the form, if your condition fluctuates, and the worst case scenario happens more than 50% of the time, you’re scored on the worse situation, but you need to put both in for clarity’s sake, even if the difference in minimal. Leaving out good days entirely is essentially a lie of omission and that is a very bad idea. 

However, you do need make sure they know just how bad a bad day is, so there’s no problem focusing on that, and then letting them know what a good day looks like after.

When filling in my form I focused more on the bad days (because, as I said before, the assessors need to know how bad it gets), but also said what the good day equivalent would be. So, as in the hot drinks example above, I would say that on bad days I can’t make myself a hot drink, and the reasons why, but say that I can sometimes make one a day, on better days, and the extra steps I have to take to make that happen.

10. Make copies

I know I’ve mentioned already that making copies of evidence is a good idea, but it’s worth saying again. You also should make a copy of your completed forms before sending them in. This is for several reasons: 

A. If the form goes missing you can easily send another (this is doubly true for any evidence that may go missing) 

B. You can take a copy to refer to to any assessments you have (and leave a copy of this or evidence if they don’t have them, or they have gone missing)

C. If you do need to appeal, you’ll have more copies to send and to take with you to tribunal as evidence that you’ve told them about your situation adequately (and again, evidence to leave if they haven’t seen it for whatever reason)

D. If you need to inform the DWP about a change in your circumstances (hopefully for the better!) then it’s an awful lot easier to use your previous filled-in application as a template and just change the necessary information in the new form. It’s so much effort doing it the first time, you might as well use what’s still relevant from the old form and save yourself some energy.

I know someone who actually types their answers and then prints and sticks their answers into the form because they find typing and typed fonts so much easier deal with. It's also easier for them to reuse for the next time. Not a bad idea, but just be wary of getting the form stuck together!!

11. Recorded delivery

If you can afford it, I’d recommend sending completed forms that have a time limit via recorded delivery, so you know they have reached the DWP within the time limit.
It’ll be a load of your mind, and, if you keep the receipt, you can prove that it reached them on time if you have to.

12. Get an assessment to suit you

On the forms for benefits that require a medical assessment, they’ll ask if there’s anything you need to make that possible. Medical assessments are pretty nerve-racking, so mention anything that you can think of to make things easier for you. It’s tiring enough in the first place without adding unnecessary strains, and these assessments aren’t meant to make your symptoms worse.

Things to think about would be:

Does the assessor need to avoid wearing loud patterns or strong perfumes to avoid triggering your brain fog?

Do they need to speak quietly to help with your noise sensitivity?

Will you need someone with you as moral support, to take over speaking if you get tired, and to take notes? (I would recommend this, and I’ll say why in more detail later)

Will you want to record the assessment? (This is possible, but there are provisos that I’ll go into later.)

Do they need to organise a place for your assessment on a ground floor, with wheelchair access, or with a lack of stairs?

Do you need a certain type of chair to sit on?

Will you need a home visit, because of fatigue, physical weakness or anxiety?

Do you need to be able to go right into the appointment rather than waiting in a waiting room?

Even if these things don't get taken into account on the day, you are entitled to ask, and from the perspective of any outside assessors that might need to look into your case, it's better if you've been seen to ask for what you need.

Do not agree to an assessment that will damage your health. You are entitled to a home visit, although you may need your doctor to write a letter stating that attending an assessment elsewhere is detrimental to your health.
(It’s my personal opinion that anyone with ME should have a home visit: our condition comprises of constant exhaustion which is greatly worsened by activity, so frankly it makes no sense to wear yourself out when the assessor can come to you and suffer no ill effects.)

End of Part Two! Check your spoons, and continue to Part Three!

Sunday, 29 January 2017

Top Tips for Benefits Applicants: Part One


Hello my lovely loves!

Today I’m going to be going through some tips I have on applying for benefits. This is based on the UK benefits system, and is aimed at Spoonies and their carers, but it might be interesting for other people to realise the amount of thought and effort it takes to apply for these kind of things.
The PIP form alone is forty pages long, and when your illness is one that attacks your energy reserves, that’s a real struggle to manage.

There’s also the emotional side that goes with it; as someone who’d avoided asking for things from the State, I found it quite difficult to admit that I needed to apply for help with medical costs.
As you know, there are no direct treatments for ME/CFS, but the costs of living with a condition like this are still high, and are higher still if you look for support outside the (honestly quite limited) help the NHS is currently able to provide. (This is often through no fault of their own, they just don’t have the funds, staff, and research available to give other treatment. Unless they support the PACE trial. Then it's all them.)

I’m not really able to go through each question individually, but I have some more general things to bear in mind that I think will help people applying.
By following the steps I’ll list below I was able to get my benefit without having to go through any appeal stages and had a generally positive experience with the welfare system. Although I certainly can’t guarantee others will too, I can at least try to help where I can.

I’ll also be listing places where you can get more comprehensive help on each of the forms.
Because of the mammoth size of this guide (which has taken me a whopping nine months to write), I’ll be dividing this up into three posts. I’ll put links in each to make sure you can access the other parts easily.

1. Stay Calm

In the immortal words of Douglas Adams, “Don’t Panic.”
Applying for benefits is a bit of emotional rollercoaster, and is generally extremely intimidating, but you’re not on your own.
There are a number of great, free resources available to sufferers which can help, and, although there are a lot of horror stories about people finding getting their benefits difficult, there are ways in place to contest if you think your case been handled poorly, and there are people who have a generally positive experience. I am one of these examples, so know that they DO EXIST.

2. Get support

As I said before, there are a great deal of amazing resources to help applicants.

The ME Association has both a general guide on benefits to help you find out which you may be eligible for, and individual guides for each benefit. These guides aren’t free, but they are very reasonable and are very, very detailed; going through each question on the form, and further advice on medical assessments and what to do if you need to appeal. The guides range from £1 to £3.
The main advantage of these guides is that they’re catered specifically to people with ME/CFS, and help you  negotiate some of the trickier aspects of having a condition that isn’t as obvious to the casual observer than other conditions. I can’t really recommend these highly enough.

The ME Association also run ME Connect, a phone service where you can get information and support. They’re not able to give detailed information on benefits, but knowing there’s an actual human to talk to can be really helpful.

Similarly, the Citizen’s Advice Bureau (CAB) has guides on their website. They have large sections on PIP and ESA and, again, give advice on each individual question, and general information on the appeals process. These are free, but are directed more generally at sick or disabled people, and therefore don’t have specific advice for ME/CFS sufferers.
You can also go into your local CAB office in person to find out information, although it’s unlikely they’d be able to help you fill out the forms in person.

Disability Rights UK publish the Disability Rights Handbook and have factsheets available on benefits online.

SCOPE (which was DIAL) has information on networks in different areas for people to get support and advice.

There is a great blog post from Kitty Jones on Wordpress that talks about things to keep in mind when claiming for ESA, and this knowledge is pretty much applicable to PIP applications as well.
There is also some information on how ATOS may word questions in health assessments to assess your health, which are worth reading, as many of them do not actually give an accurate view of the situation as a whole.
If you know what they might ask and why they’re asking, you can explain the situation fully.
For example she states that “Do you use the internet?”, and you saying "yes", may lead to them reporting that you have no visual problems, where in fact it may be that you do after a certain time, or have visual problems in different circumstances. If you know why they’re asking, you can quantify that you can only use the internet for a certain amount of time, or that you can use the internet but find reading from a book difficult, for example.

There are two paid websites that take you through every aspect of the process, from filling in the form all the way to the appeals process, and these are Benefits and Work, and Fightback 4 JusticeFrom what I’m able to see their sites and guides look to be comprehensive, although Fightback 4 Justice is more known for their appeals work. These are more expensive options, and if you feel more comfortable trying on your own first, then it’s totally possible to get the benefits you’re entitled to without these services (I did), but it’s amazing to know that these services exist, and have a very high success rate.
Benefits and Work costs £19.95 for a years full membership, and Fightback 4 Justice had two levels available; £4.99 per month for fixed access to their resources, and £11.99 per month for total access.

Advice Now also have a guide on the PIP appeals stage, which is free to download.

There’s a group on Facebook which you can join called M.E. & Chronic Illness Benefits Advice Group, which also give advice and help from applicants. It’s a closed group, and you need to prove you’re a human to join, but they have instructions for that on the blurb of the group.

Don’t forget, there are plenty of resources in others too. Talk to your Spoonie friends who’ve applied to see how they did, ask questions on forums, and, if you’re able, ask for help from your carers, friends or family. It’s perfectly alright to get help physically filling in the form, as well as getting the supporting evidence, or helping you organise or attend your assessment with you.

3. Start Early

If you know you’re going to need to apply for benefits, it’s worth starting to prepare early. Read up on the questions you’ll be asked and start jotting down bullet point answers while you wait for the form to arrive. Contact your medical professionals and ask for your supporting medical evidence, so it’ll be ready to add, or on it’s way, when your receive the form.
The process is stressful, so spreading out its completion over a longer period and taking the pressure off will only help you in the long run.
The forms also have a deadline of when they need to be returned, so starting early will make it a bit easier for you to deal with the time constraints.

4. Get Evidence

On my internet forum travels, I once saw a comment from a benefits applicant stating that they hadn’t provided evidence with their application, because if the government wanted evidence, they should find it: this is absolutely wrong and I cannot overstate the importance of providing evidence to support your application if you’re able to get it.
The government is legally under no obligation to give you benefits designed for the sick and disabled unless you are able to prove that you are sick or disabled.
What’s more, we all know the government is trying to save money wherever it can, and if you don’t have evidence of your condition it will make it a lot easier for them to decide against you. If you can possibly prevent it, do not make it easier for them to say no to giving you money you are entitled to.
I know that having to search around for proof that you are ill is frustrating, tiring, and feels like the opposite of what you need to be doing to get well or even manage your condition, but I can pretty much guarantee you that not providing it will lead to a much more difficult, frustrating and stressful situation in the long run.

Resources for supporting evidence are as follows:

Your GP (if your GP isn’t supportive, then it’s a good time to change, most of the other medical professionals are accessed via GPs when they refer you)


Any Carers you have

Social and support workers

Occupational Therapists

Any Counsellors or Psychologists you see

Nurses or Doctors from your local NHS ME/CFS clinic

Any medical professionals you have from a private ME/CFS clinic (although you’ll likely have to pay for a letter from them)

And of course any Specialists well versed in the condition

(If you don’t have ME/CFS services in your area, don’t panic, you can say this on your form, as it’s evidence that you don’t have access to services that would help you deal with your condition.)
This is where calling on any reinforcements in your daily life will come in handy; your friends, family, or carers can help you compose and send emails or letters to your medical professionals, they can make you a cuppa while you call your GP. If you are unable to use the telephone get someone to call with you so that they can take over when you tire. You can nominate them to speak on your behalf.

Friends and family can even write their own reports to back up those of the medical professionals, although make sure you choose people who are fully aware of the impact your illness has had on you.

One thing I would say is that even if you don’t receive your evidence back from your various sources in time, don’t delay sending off the form. You can always say you're awaiting evidence in the form and send it on when it arrives.

Finally, make sure you make copies of all your evidence before you send anything off.

(Edit: Robin has commented below with some great options for compiling objective evidence yourself, so take a look at that!)

5. Fill in in pencil first

It might sound a bit patronising, but if you’re anything like me and have fairly large handwriting, you’ll realise fairly quickly that the spaces are tiny, and that its easier to try and make everything fit in pencil first, and go over in pen later. You’d be surprised how much information actually needs to go into one of these applications.
Also, due to those pesky cognitive symptoms, the chances of you forgetting something and then having to try and squeeze it in later are pretty high. Pencil is the way forward. If you don’t have the heart to go over it in pen later, then you can always ask someone to do that bit for you. That’s what I tend to do.

6. Be honest / No Sugarcoating

It’s all too easy to fall into a habit of making light of our situations; it’s more palatable to friends and family, and it helps us remain more upbeat in what can be a pretty horrible situation. But this is not the time to do that.

I know it’s depressing thinking about just how bad things get, but that’s exactly what you need to do, in the application and during any assessments, appeals or tribunals.
The reason you need this benefit is because you are sick and vulnerable, and the assessors and decision-makers (what a stupid title!) need to know exactly how sick and vulnerable you are in order to give you the right level of benefit.

If you feel uncomfortable with the idea of a stranger reading or hearing about your vulnerabilities, think of it this way: this is your opportunity to give a no holds barred account of everything you’ve suffered; every indignity or struggle or emotion. You can tell someone exactly how hard it is without worrying about complaining too much, or making them sad, or how it’ll affect them; it’s literally their job to hear about how bad things are for you.

If being sick makes you depressed, then say that. If you feel isolated, then say it. Constant pain? Confusion? Memory loss? All of it goes in. It’s a long list, and you might get tired (or sad) when writing it. Just take a break, and go back to it later, or get someone to help you. You can use extra paper if you need to, and bullet point if full sentences are hard, but don’t leave anything out.

Writing down how bad things really are is really difficult, but it can also make you realise how strong you are to deal with everything you do. It’s okay to feel down during or after completing a form, but just remember, you’re doing this for a good reason, and you are much, much tougher than you realise.

I don't really think this needs to be said (because it happens a lot less than both the Government would like, and the right wing press would have you believe), but in the interest of protecting myself and all of you, I'll remind you that you should never lie on official forms. It is a criminal offence and you can be prosecuted for Fraud.
ME/CFS sufferers face constant suspicion when trying to convince people that, a) ME/CFS is real, b) that we have it, and c) that it really sucks as much as we say it does.
Given that, I'd say the chances of us lying on our forms and giving those doubters ammunition are about as likely as the Daily Fail giving a fair and unbiased account of anything; technically possible, but astronomically unlikely.


End of Part One! Check your spoons, and continue to Part Two!