Chocolate eggs? No. A roast dinner with the whole family around the table? No. Binge-watching movies on the sofa? No. Going out drinking and partying? No.
Happy Easter for many of you, I’m sure. But not if you’re living with an illness that’s ‘all in your head’.
As I previously wrote for The Canary:
Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:
- A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
- Flu-like symptoms.
- All-over pain.
- Sleep disturbance / problems.
- Cognitive impairments.
- Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.
You can read my full body of work for The Canary on ME here.
As I’ve previously written, my girlfriend Nicola Jeffery lives with ME, along with a host (now ten in total, as it happens) of other conditions, diseases and illnesses:
- Hypermobile EDS (hEDS)/ Hypermobility Spectrum Disorder (HSD). She was diagnosed as hEDS before the criteria changed. So she now fits the HSD bracket.
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Non-epileptic focal and tonic clonic seizures.
- Polycystic Ovary syndrome.
- Temporomandibular Joint Dysfunction (TMJ).
- Clinical hypotension.
- Deformations in left foot, left leg shortness.
She is also now under clinical investigation for:
I’ve written extensively about her story to this point. You can read that work here.
So, what does our Easter look like? Probably a world away from many people’s. But also very similar to Easter for millions of chronically ill people.
Just another week in the Jeffery-Topple household
Around 5am on Wednesday 17 April Nic started vomiting. This was followed by diarrhoea. This continued until around 2:30am on Thursday. For the rest of the day she fell in and out of sleep. It’s now Friday 19 April at 1:30pm and she’s eating something for the first time since Tuesday. But only half managed it and has gone back to bed.
Her blood pressure fell to 78/33 at one point, which is worryingly low. During this time she also had three suspected focal seizures. I say “suspected” because no medical professional is able to explain what they are, except they present like them. No tonic clonic this time, though. So we’re grateful for small mercies.
“Why didn’t you call an ambulance?” I hear you scream down your devices.
For numerous reasons. Not least because this bout of unexplained sickness has happened countless times before. But also because we know that a hospital would do little that we weren’t doing at home. In fact, they may in the long term have made the situation worse. If you’re wondering why I think that, check out the reasons why we’ve switched to a paleo-keto diet. All will be revealed. Plus the likelihood of mental health being brought into the equation. Our glorious NHS, hey…?
We’re now weaning her back onto food, and will start reintroducing the 17 different tablets/oral/intravenous solutions she’s on a day, in time.
So, Easter has gone out of the window for us. But for Nic, and millions of people like her, it was never actually in the window in the first place.
Sunday roast? No chance.
If you’re non-disabled, you probably relish the thought of a huge Sunday roast with all the family. If you’re living with ME this could be your worst nightmare.
Maybe explain to people why you can’t eat half the food on your plate due to your socially damaging, highly restrictive diet.
Try eating all that when you have impaired digestive transit. Or if you’re struggling to swallow. Maybe if you have hypersensitivity to taste.
Also, try eating all of that while numerous people talk around a table and you’re hypersensitive to sound. Then try it when your cognitive function is so impaired you can barely follow one person in conversation, let alone a whole group of people.
This, of course, all presumes your family hasn’t effectively disowned you because they think your illness is ‘all in your head’ and you just need to ‘pull yourself together’.
Enjoy your lamb.
Easter eggs? Jokes.
If you’re non-disabled, the best part of Easter may be chocolate eggs. If you’re living with ME, they could be torturous for you.
Histamine intolerance may mean you can’t even eat chocolate. Mast cell activation syndrome could mean it will trigger an allergic reaction in you. And if you’re on a socially damaging, highly restrictive diet, we’re back to the sugar problem again.
Meanwhile, you have to have the strength in your hands to remove the foil wrapping and then break the chocolate in the first place.
All that of course assumes that you even have the money to buy Easter eggs. Try getting the Department for Work and Pensions (DWP) to give you benefits when your condition is still considered part-psychological by much of the medical community.
Hope you have a good sugar rush.
Binge TV? Out of the question.
If you’re non-disabled, you many plot yourself on the sofa and watch endless movies for much of the weekend. If you’re living with ME, this could be near-impossible.
Try being in any other position except lying down for a long period of time when every part of your body aches, you feel like your walking under water and you have a constant fog of light headedness.
Maybe try and sustain your concentration for more than just the news when your cognitive function is so impaired you can’t remember what the weather is going to be like from one day to the next.
Then have a go at enjoying a film when the slightest laugh, scream or groan from people feels like the noise of a high speed train right next to you. And throw in the noise of the television and the strain on your eyes for good measure.
I do hope you have fun watching your Hollywood brain-bleach.
Get ready to party? Not here.
If you’re non-disabled, you may go out over Easter to the pub or a club. Or, like me and Nic were, put on the guest list for a concert by a rapper like Lowkey. If you’re non-disabled, this would be impossible.
Attempt to get showered and dressed when your body is so weak that even going to the toilet exhausts you for hours afterwards. Try putting your make up on when your hand to eye coordination is screwed. Not that you’d be able to sustain the holding up of your arms for that long, anyway.
Try drinking alcohol when you know it will leave you even more bed-bound than you were already. Oh, and try affording alcohol under the DWP.
Maybe you’d like to go to a venue where there are going to be hundreds or thousands of other people, exposing you to their germs, which could make you seriously ill. Hundreds or thousands of people all ready to brush past you or bump into you, but in doing so leaving you in agony.
Or try dealing with the same issues you had eating your Sunday roast with a small group of people all in intense conversation – but multiply it by hundreds and throw in extremely loud music for good measure.
Oh, and try all of this when you can’t use public transport due to the infection risk, the danger of physical damage and the lack of accessibility for chronically, invisibly ill people. And if you want to try and get a taxi to and from where you’re going to, we’re back to the DWP issue again.
I hope your hangover is worth it.
Ultimately, try doing all of these things when you constantly feel like you have the flu, never have any energy nor have the cognitive function to decide whether to even do them or not.
Then try doing them when much of the medical profession and state systems disbelieve you, leaving you with no support except other people in exactly the same boat. Even friends and family will only tolerate your inconsistency, the consuming nature of your disease and your inability to do what most people consider ‘normal’ for so long. Gradually, knocks don’t appear at the door. The phone slowly stops ringing. Messages are left unreplied to.
And ultimately, trying doing all of this with the overwhelming feelings of guilt your disease leaves you with.
So, no. There is no Happy Easter for millions of chronically ill, disabled and sick people. There’s just another long weekend, spent fighting not only their own bodies but also a system and society that’s not designed for them to fit in to. Let alone live in.
I’ve given up writing full time to support Nic. Most of her medical treatment now has to be private; a challenge in itself with no income.