How Do You Travel Comfortably with M.E?

As the person in the plane seat in front of me finally leaned forward, my kneecaps were restored to their natural concave shape, as opposed to the pressed flat situation I’d had going on for the previous 45 minutes. I knew I should have paid for a seat with extra leg room. Much like the lady to my left had apparently done with arm room. As I sat contemplating a reasonable rental rate for her elbows to reside in my ribs, I wondered whether everyone else was this tetchy.

Quite possibly; travel discomfort is clearly not exclusive to those of us with M.E. So I felt a bit guilty and selfish for a minute. However, when you’re on-board a 3-hour flight with fatigue, muscle pain and noise-intolerance on the go, maybe I was entitled to feel a bit sorry for myself after all. 

I’d bought an eye-mask and neck pillow, and used the hour-delay to download some tunes onto my phone using the airport’s wi-fi. Now, thousands of feet in the air, I figured I’d ‘snuggle’. Earphones in, hood up, mask down… I could be anywhere, cosy, restful… nope. Lots of nope. 

First of all, you can’t get comfortable on a plane, particularly with aching limbs. No position works for too long. Secondly, when a chirpy woman starts belting out Que Sara Sara from the back of the plane as the captain announces a 30-minute delay to take-off, you find yourself torn between wishing you still had her energetic optimism and wanting to rip off the pull-down window blind to frisbee at her neck.

Thirdly, shut up. Everyone shut up. Woman on the mic – we have absolutely no idea what you’re gabbling over the speakers. We have the technology that, when I land in Spain, I will be able to have a crystal-clear conversation with my family back in England over a phone or computer, yet we can’t invent something which helps me hear what this stewardess is trying to tell me from 10 feet away.

The noise of the engine, probably long-since blended into the background for most others, is really bothering me. Not that I’m planning to lodge a request for the captain to stop that particular sound. 

But the cackling hen party a few rows back definitely need stopping…

No, I’m being a proper Victor Meldrew. I’m lucky I’m not housebound and can actually travel. I need to stop it…

Or at least come up with some better travel management techniques. Of course, it’s not just planes. I recently asked my chiropractor about being comfortable during long car journeys. He said, as expected, to take regular breaks where you can stretch your body out and clear the mind. He also said that, if you’re the driver, adopting a lower steering wheel holding position – as opposed to the traditional 10 and 2 – is better to keep the spine straight.

Then there’s trains and tubes; does getting a seat with a table or the one by the door help?

What other tips can you share to help people with M.E. have more comfortable journeys on different modes of transport? Comment below.

• Extra Reading: Tips from a Spoonie on travelling with a chronic illness on WebMD, and also see the National Fibro & Chronic Pain Association’s top 10 suggestions.

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What does your M.E LOOK like?!…

By Jonathan Fitzgerald

It may seem like a strange question but if you were to personify your M.E, if you were to imagine what it looked like, sounded like, smelled like, what its personality was, what would you say? When you picture it, what form does it take?

I’d never thought of this before – at least not consciously – until my counsellor asked me.

My initial reaction was to imagine it looked how it makes my legs and body feel – so like jelly, or heavy logs, or strings of blue-tac failing to support my weight. A particular colour wasn’t springing to mind but I could imagine others saying grey or black, like clouds.

When I thought about it further, and started to give it a character, I decided it was nothing but a total and utter $%£^@  £”$:***+~& <this blog has been censored for foul and abusive language>

an utter git.

The look on my counsellor’s face suggested there might be an alternative to this approach!

What if it wasn’t an invisible evil sent by a bored imp looking to suck as much life and energy out of people as it could manage? What if M.E is actually a friend which arrived as nature’s way of telling you that your body and mind needed to slow down? What if it’s heaven-sent to make you give yourself some me-time because continuing in the rat-race would have brought something far worse? What if M.E is the cosiness of your bed, the fuzziness of relaxation, the spirit of freedom to help you reconnect with other things, or people, whilst you’re bed or housebound, that you would not have otherwise been doing or seeing?

Far-fetched? Hard to reconcile with? Or might there just be something in that? I can see both sides but the theory is that you need to see it not as an invader but part of who you are now. It’s OK to have rubbish days. It’s not a waste of a day. It’s a day to think, rest, heal, pursue other things whilst sedentary. They are the things I’m trying to tell myself at the moment.

So maybe, just maybe, if M.E does still look like a looming, dark cloud to you, it could also be a soft, fluffy one which is cushioning you, wrapping you up in its cotton wool, being your peaceful pillow, protecting your body and mind.

Maybe. It certainly feels better to think of it like that anyway.

What do you think? What does M.E look like to you? If you visualise it, does it look like a horrible Monster Munch character or more like the Honey Monster?! Can you make peace with it and see it in a different way? Please – share your thoughts in the comments below.

Extra Reading: More positive thinking in this Light Visualisation During Meditation article from the M.E Self-help Guru.

M.E is…

By Jonathan Fitzgerald

Who remembers those Love Is… comic strip cartoons which appeared in newspapers? The idea behind them was that there are so many different ways to express how it feels – and it’s a little different for every person.

So that got me thinking – what a good and creative way to share what M.E is to us. It would also be useful for those around us to see these short ‘definitions’ or insights, to help them better understand.

 

So I’ll get the ball rolling with a few of my own and then this blog is over to you in the comments section!

 

• M.E is… living in slow-motion some days
• M.E is… like having anchors on your feet, anvils in your arms and led weights on your eyes
• M.E is… having an almost empty battery inside you that won’t recharge
• M.E is… very taxing, not relaxing
• M.E is… running an errand and feeling like you’ve run a marathon
• M.E is… when your brain says you can do more than your body then allows
• M.E is… strong at making me weak but isn’t going to break my spirit.

Your turn! Be as simple or creative as you like. Just don’t swear!

What is M.E to you? What does it feel like? How would you describe it in these nutshells?

Oh, Sugar! 15 people with M.E share their energy alternatives.

Chocolate, cakes, sweets, fizzy drinks… with such low energy, it’s no wonder we crave these boosts. But the short-term highs can simply propel us up a ramp towards an even bigger crash. Plus there’s the other health impacts such as weight gain and poorly teeth, among others!

The realisation I’ve come to this week (after eating two Double Deckers for breakfast then zonking) is that we have enough symptoms to worry about without self-inflicting more – there must be a better way! So I put the question to various M.E and fatigue communities that I’m part of and have collated all the ideas shared here.

Naturally, this comes with the disclaimer than we’re not doctors or dieticians, so do seek advice and eat a balanced diet etc… but hopefully some of these suggestions will really help us all to swap baaaaaaad sugar for good alternatives, and with better results! I’m going to try some of these so will report back – and let us know your thoughts and experiences in the comments below, too 🙂

 “Porridge for breakfast will help with energy in the morning – and you could put a tiny bit of honey in it 🙂 “

 “My go-to are roasted nuts & 100% chocolate. I get my dark chocolate from www.montezumas.co.uk . I drink lots of hot water & lemon too!”

 “I was advised to have 3 small meals and 3 small snacks a day to keep energy levels up and blood sugar constant. I tend to snack on hummus (a limited amount in a small plastic tub) and wholegrain crackers, or cheese and crackers, with some grapes or other fruit. My cravings have reduced considerably.”

“Manuka honey on wholewheat toast, in tea instead of sugar, in plain yogurt, on top of porridge or banana, egg, pancakes etc. It’s expensive but a little goes a long way and is very good for you and your sweet tooth.”

“One thing I’ve made recently is a low carb bread (made mainly with ground almonds) that when spread thickly with cream cheese makes a nice afternoon snack and one piece is quite satisfying. It is almost like cake but much healthier as it’s sugar-free.”

“If anyone likes peanut butter and bananas, it is a real energy boost!!! Fills me up too so stops you resorting to the bad stuff!!”

“I downloaded the Food Smart app to check for hidden sugars – this has helped the whole family cut down.”

“Strange as this may sound, it does help… sniff/smell a chocolate wrapper. The smell tricks your brain into thinking you ate it. Protein snacks will also curb the sugar craving  “

“I’ve cut out refined sugar the past few weeks. Normally I can’t resist treats but I now have alternatives on hand to kerb the cravings – and it’s worked  An easy one is hot Cacao (I make it with almond milk) sweetened with honey, plus refined, sugar-free cakes. Another easy-ish one is a mug cake recipe with banana, cacao, nut butter and honey. Pinterest is good for finding sugar-free treats. Normally I have no willpower but I’ve lost weight and some of my CFS symptoms have eased. Now I just have to stay strong over Easter! “

“Sweet teas! I have lots, caffeine-free of course! Obviously fruit salads – add some honey when being naughty! Also really dark choc, like 85%. I also freeze banana slices – you can make banana ice cream with it but I just take a few slices when I need sugar – tastes amazing!”

“I’m just reading a book called ‘I Quit Sugar’ and there’s also this website… lots of suggestions in the book and advice about hidden sugars too. Worth a look. I was driven to reading it after demolishing the two Easter eggs I’ve been given for Easter already… they were just calling my name!”

“Nuts are my go-to snack, I get big catering size bags for economy and roast my own for when I need something salty, that way I ensure no added oil. I also have eggs for breakfast, the protein really sets you up for the day and I rarely get cravings.”

“A simple but very effective one is good old water which can make a huge difference – I make it more interesting by either adding in fruit (you can get some good, easy, infuser bottles from Amazon) or sparkling water which tricks my brain into thinking it’s a fizzy drink! Most pubs will give you “soda water” for free, too.”

“I snack on fruit (grapes, mango, melon, strawberries and raspberries to name a few!). This helps with the sugar craving. The Cadburys options are a low-calorie sugar fix as well. For energy though you’re better off with proteins like boiled eggs (just apologise to the people around you first…) chicken pieces, ham etc.”

“Take a look at your carb intake. You can crave carbs if you eat excessive carbs if that makes sense. Vicious cycle syndrome. Be warned though: coming off excess carbs can give you a rotten headache for a day or two!”

What are your tips or experiences?
Comment below!

“Tired? A young man like you…?”

by Jonathan Fitzgerald

The pay machine in the car park is on the go-slow and I’m making small talk with the two pensioner ladies waiting in the queue behind me. “It’s a bit like me in a morning,” I quip. “A young man like you?” they chuckle back, unaware.

Now I’m not about to correct and start lecturing two octogenarian ladies in the middle of a car park. In fact initially I feel a little guilty – why am I moaning when they are the old people with the aches and creaking bones

And why would they know any different anyway? I’m having an OK-ish day and they can’t tell I have something like M.E based on our 30-second interaction. And I’ll never see them again, so does it matter? Should it really get to me?

Rewind two weeks and I’m in an exercise class, trying out different things to help my body. (There’s another blog here on all the exercises I tried, just in case you missed it.) This one is a mix between Yoga and Pilates. By the end, I’ve decided this one was a bit too much for me. I kept having to stop, or do the easier version, whilst noticing that several old ladies next to me were doing just fine.

Again, small talk as we put our mats away at the end. This time they can see I found it tough as, through the sweat, I force a chuckle about it being hard work. Then it comes again: “Tired? A young man like you?” and they chuckle back about whether they will see me at the session next week or not. (They didn’t.)

This is perhaps a more innocent version of “But you don’t look ill”. Innocent because they are not to know – and I think it’s important for us all not to add anger and any more upset to our list of issues, as hard as that may be some times. None of the ladies meant anything by it. They’d be quite embarrassed if I’d launched into why I’m so fatigued at my age, why it’s different to being tired, why you shouldn’t judge a book by its cover etc etc… it might have felt cathartic in the moment but what would it have ultimately achieved?

The real battle we have is when people we know, people we are going to see again, people whose opinion really matters to us, are also not getting it, looking and asking why we’re so tired.

That’s when explanations and awareness-raising do need to happen, because we need the support and understanding of people around us. But, as best you can, try not to be mad at them for not understanding it. It’s something we struggle to comprehend ourselves sometimes. It is quite invisible sometimes, it is a strange illness and, rightly or wrongly, people can only say what they see at first. Old public misconceptions can linger too.

Once explained, that’s when you’ll find out whether they are the kind of friend or family member who will be there for you and do their best to understand – or still be dismissive. Remove the drainers from your life and love the supportive ones.

So if you need help explaining it in ways that they might be able to relate or at least understand, have a gander at one of my first blogs on analogies and descriptions of M.E for others.

And if they don’t get it – forget it. Otherwise you’re just wasting precious energy.

More reading: This article might also help, explaining more about it including the difference between being tired and fatigued. 

Over to you. How have you dealt with similar situations? Is there a stock reply you have now? Have you found a way to not let such remarks bother you? Please share your thoughts and experiences in the comments section below.

5 ways to accept what your M.E body can’t do any more

By Jonathan Fitzgerald

I think the thing which frustrates me most about having M.E (except for it feeling like I have invisible anchors tied to my eyelids and heavy cement instead of blood, of course) is how it’s changed me.

Not only can it invert many of my natural personality traits of being positive, confident and patient, it’s also reduced how active I am. In my head, I can still play football at 100 MPH, run around the park with the kids, swim 25 lengths and generally be all bouncy like Tigger, chum of Winnie the Pooh. But nowadays, I either give up on those things or try one and pay for it the next day. Even simple, non-energetic activities require motivation I don’t always have.

So it’s got me to thinking – whilst I go through the process of trying to manage and even improve my M.E, how can I reach an acceptance of my new limitations? I still need to enjoy life, feel fulfilled and not become a couch potato. Consequently, I’ve come up with 5 things…

1. Re-connect with an old pastime: Many of us have hobbies or talents which we’ve lost touch with over the years, whether it’s the old clarinet in the back of the wardrobe or picking up a pen and doing some creative writing again. That last one is me; I’ve always been good with words and had some poems published once so, whilst I aim to get back into all that if I can, for now I’m getting in touch with that side of myself once more through this very blog! Realisation number 1 is why this website exists.
2. Discover a new skill or hobby: It’s a fact that you haven’t tried everything in the world yet! It therefore stands to reason that there is something else out there that, once discovered, you will enjoy and even realise you’re quite good at. The exercise classes I’ve been taking are my example so far – I’d never have associated myself with yoga in a million years before but now’s the time to forget what you think you know about yourself and let something new in. Maybe you could take an adult learning class – I’ve thought about cooking and Spanish. Maybe you’ll get a sense of enjoyment and accomplishment in the outdoors through some light gardening or cycling. What about photography or computer skills? The only limit is your imagination.
3. Re-visit your ‘lost’ loves from a different angle: For me, whilst I do still play football in a more limited way, I scratch the same itch by coaching a children’s football team. I also exercise my (alleged) football knowledge by getting involved in a Fantasy League. Could you teach or write about something you used to do that you can’t now? Or get involved in another way?
4. Adapt how you do it: It may be that whatever you used to love doing isn’t entirely impossible any more. Maybe you used to dance or do lots of DIY. If M.E is about pacing yourself and choosing carefully what you spend your limited energy on, never feel bad about spending some of your spoons, your energy credit, on something that makes you happy. Fulfilment is very important. You may just have to discipline yourself to do less of it, that’s all. If you used to do an hour of something – and even if in your head you think you’d still like to – just try 20 minutes of softer dancing or build something smaller in your tool shed! Trial and error, see what you can manage. Even these shorter bursts will add to your happiness rather than abandoning something entirely.
5. Accept that you are still you – and you still rock! You haven’t had a brain transplant (as much as it feels like you’ve had a body swap with a 95-year-old sloth). You are still who you always were, it’s still in there but now there’s a new version of you. This has given you the opportunity to look at new things in new ways. It’s You Version 2.0.

I’m still at that point of reaching acceptance so this list is not complete, I’m sure. So, over to you…

What do you think? Does any of that resonate? What else have you tried to accept your new limitations? Please – share with us in the comments below.

The Power of People: Peer Support for M.E

By Jonathan Fitzgerald

Other people have M.E/CFS! That might seem like an obvious thing to say – and I’m not saying I’m delighted by that sad fact (!) – but it can really help you.

I found a Facebook group of people in my local area with M.E and, after joining and building myself up to going along to a meet-up, I realised the power of people. Great people. It seems odd to say, but even up to that moment, it hadn’t really dawned on me that others actually had this thing… felt similar to me… knew what I was talking about.

Then I met more truly brilliant, like-minded, like-bodied people at the NHS M.E Service. Sources of encouragement, people to share a tricky journey with. Then by talking about it, I found out that two people at my work and a neighbour also have M.E. We don’t even talk about it all the time, but just knowing they are there if we need to, and they understand, makes such a difference.

At one group, someone was telling a story which at one point caused them to use the phrase “…I have M.E…” and it hit me like a tonne of bricks! That was just a sentence that only I said, and I’d never heard anyone else say it before. It was almost surreal. It shouldn’t have been, it sounds silly, but it was. It was also brilliant.

Not brilliant that the person has it of course! But brilliant that, here we are, a group of strangers who know each other’s language, empathise with each other’s experiences and challenges. It’s strangely comforting. We say things which were effectively “in-jokes”. We share. If someone can’t make it, can’t find their words or can’t last beca
use they are jiggered, that is fine because everyone totally gets it. We also talk a lot about normal stuff, nothing to do with M.E, because we’re also normal human beings!

Once you get chatting, no matter what different stages of your journeys you’re at, I will guarantee you something: Every single one of you in the room, whether there’s 4 or 24 of you, will have one piece of advice, one nugget of knowledge, one experience or one tip which at least one of the others hasn’t heard and could benefit from. 

Crucially, make sure there is laughter and positivity too, as well as empathy. It shouldn’t be a place to go where you magnify your feelings and leave more negative. Such groups can be a source of information and inspiration to help you improve!

The photo is me with one of my groups; sometimes we go to each other’s houses with absolutely no expectation of the host to tire themselves out cleaning up first! Sometimes we meet at a convenient pub or cafe and I often offer to pick anyone up who is struggling – both in the car and metaphorically speaking!

It does take a bit of courage to go along to such a meet-up and I’d definitely recommend starting the chats online first. You have nothing to lose there. Go for a national or non-geographical one to begin with if you’re concerned about people nearby knowing, such as Chronic Fatigue Syndrome Support UK on Facebook. But definitely go for it.

Here’s a way in – have a look here for UK groups by local areas and here for lots of other countries. There are both online and physical meet-up ones. Also search on Facebook or Google to see what comes up for you.

For a group all devoid of energy, there’s somehow plenty of it in the room and in the chat pages. A different kind of energy. Supportive energy. People power.

What do you think? Have you had similar experiences? What are your support networks like? Or does something put you off? Please comment below and sign up in the footer to receive alerts of new blogs.

Not the foggiest idea… What’s the funniest thing M.E brain fog made you do?!

by Jonathan Fitzgerald

There are two well-known sayings: “If you don’t laugh, you’ll cry” and “Laughter is the best medicine”. With these in mind, I’m inventing a new saying for us: “If M.E makes you daft, share it and have a laugh!” 

Whether you’ve steam-ironed the cheese and tried to grate your shirt for dinner, forgotten why you were going upstairs by the 2nd step, typed your credit card PIN into the microwave or accidentally called one of the children into the room using the name of a pet that died seven years ago, we’ve all done or said something silly because of the brain fog.

I know I have. The effort of memory recall and concentration seem to be the main culprits. Sometimes, I think my memory is so bad I could plan my own surprise party.

Planet Jonathan – where my brain often jets off to for an unannounced break – has witnessed some foolery of the highest order. You can be frustrated about it, you can beat yourself up about it or – as long as it’s not causing any serious risk – you can learn to chuckle at yourself. Don’t worry, we’re here to help and share back!

So for this blog, it’s over to you! However, I’ll get the ball rolling for you with some of my brain fog blunders, where mind and body weren’t connecting and I really didn’t have the foggiest what I was up to!

My Top 5 Brain Fog Moments

• On my way out of the house to an appointment, I took a full bin bag with me but forgot to put it in the wheely bin on the way past, so the smelly sack joined me in the car journey!
• Pointed my car keys at the office back door at work, pressed the unlock button and then stood there waiting for it to open.
• I’d remembered putting a leftover slice of pizza in a sandwich bag but it wasn’t in the fridge when I came to eat it. I found it several days later. It was in a sandwich bag alright… and back in the sandwich bag drawer.
• I frequently get my children’s names mixed up. To be fair, this is probably common in most parents; I can remember my Mum doing the same and with three boys it’s understandable. But, much to my kids’ despair, their names are interchangeable despite one being a girl and one being a boy! “Can you call Emily for dinner, Emily?”
• HOT-CHOC OFF THE PRESS! This one happened on the day I was finishing writing this blog, aptly enough. Very dark chocolate is supposed to be good for people with M.E. However, it’s not so good for us if, like me, you leave it on your passenger seat all day on a very hot day… and then try to pick it up… I got very hot, liquid chocolate all over my seat, gearstick and, well, my lap. My car looked like Augustus Gloop had been unwell in it.

Top 5 Steps to Mindfulness

I’ve found that practicing mindfulness – the opposite of forgetfulness – has really helped me though; it’s about getting your brain focussed ‘in the moment’ instead of letting it wander off to the next thing before you’ve done or said what you were about to do first. Think of your head as a computer – when you have too many windows open at once, it’s going to slow a poor processor down. It might even crash. Juggling multiple thoughts or worries consumes precious energy! So visually minimise or close the windows in your mind until you actually need them to be open. Consciously concentrate on one thing from moment to moment. Write the others down to get them out and then leave them somewhere else until a set-aside time to deal with them arrives. Your pizza and passenger seats depend on it! It’s well worth a go – try these top 5 tips for mindfulness.

How about you? What muddlesome misfortune has our befuddling brain fog made you do or say in the past? Please – share in the comments below. 

Extra Reading: Here’s an interesting article about a study which sought to explain brain fog in people with M.E.

Telling people about your M.E – which of the 5 Sharer Types are you?

By Jonathan Fitzgerald

When it comes to telling others about your M.E, have you taken out a peak-time advert on your regional radio station or does everyone just think you’re stuck in slow-mo or genetically linked to Eeyore?

I originally kept my M.E to myself. In fact, I even kept it from myself at one point! Admitting and accepting it is one hurdle but then explaining it to others is the next. If it’s true that only 250,000 people in the UK have M.E, this doesn’t help with a listener’s understanding. With some conditions, you can simply say you have it without either having to then explain what it actually is, or worry about stigma or misinterpretation. But should that be a deterrent if it will help you?

The idea for this blog came to my mind as I’ve recently jumped hurdles one and two – telling myself and then those closest to me. The next stage, I guess, is allowing others such as acquaintances and people at work to hear. None of these leaps are easy and some people may prefer to stop at different points for now, which got me to thinking about the different Sharer Types and whether or not it would be of benefit, with advice and support, to slowly start moving through these.

So – who have you told? Where are you on this Sharer Types scale?

Sharer Type 1: You haven’t even let yourself know yet… Maybe you’re reading this as you think you may have M.E or have recently been diagnosed but are trying to push through it rather than admit to yourself that you now have a ‘label’. You might have posted anonymously somewhere as part of initial exploration.

Sharer Type 2: You’ve admitted it to yourself and told one or two closest to you… Perhaps your partner or family know because they see you on a regular basis but you’ve kept it as tight as that. It’s private.

Sharer Type 3: You’ve told a few others who ‘need to know’… Maybe
the time has come to let your main friendship groups, wider family or a boss / colleague at work in on it, because it’s not something you can or want to hide any longer.

Sharer Type 4: You’ll allow anyone to find out now, as it comes up… You don’t really mind anybody knowing and have allowed wider circles to hear you have, and learn about, M.E. It might be because you’re relaxed about it now or you find it helps manage their expectations of you, but you’re not necessarily going out of your way to ensure they all know.

Sharer Type 5: You actively tell anyone and everyone, in fact you want people to know… Perhaps you find it helpful to know that people know, so they understand why you may act in a certain way or have obvious limitations. It might be cathartic or you might be looking for sympathy and support. You’re certainly raising awareness and reducing stigma!

Personally, at the time of writing, I’ve recently moved from Sharer Type 2 to Type 3. I’m just starting to think about number 4 if it will help. So which one are you – and are you comfortable there or are you looking for advice on how to move along the list?

My advice and thoughts, fresh from experiencing it myself, would be that if you’re Sharer Type 1, don’t feel bad about that as it’s a natural place to be – I certainly sat there for months, even years – but the sooner you move to Sharer Type 2, the more you’ll start on the road to dealing with it and the more support you’ll start to let in. If you’re already at number 2, and feel you maybe have a mild case and don’t need to take it any further, great! But don’t be afraid to let others in and move to Sharer Type 3. Although it’s hard to explain, it’s not impossible and some people may surprise you with the support and strength they can add to your armoury of coping. You might also not have to try so hard to hide it either.

Again, if you’re then happy to stick here, that may be no bad thing. In time, you might naturally feel like you want or don’t mind anyone knowing and become Sharer Type 4. You may not feel the need to explain yourself any more or you’d rather everyone has awareness of why you’ve been off work or not around as much, for example. You’re taking that one stage further if you’re Sharer Type 5; you’ve achieved complete acceptance and are quite an ambassador for M.E! You could find it hugely helpful to share – just be careful you’re not too full-on and it has the opposite effect of people being turned off by viewing you as attention-seeking. Maybe cancel that radio ad and Town Crier booking!

Extra reading: It can really help to share with like-minded, like-bodied strangers to start with. Search online/Facebook for virtual M.E groups and have a look here to see if there is a virtual or physical group near you.
And if you need help explaining M.E to people, have a look at these helpful analogies.

Over to you in the comments section – which type are you? Have I missed any? Would you like advice from readers on how to move from one to another or don’t you see any need? Please – share your thoughts below!

If you had a time machine…

By Jonathan Fitzgerald

…what would you tell Younger You before, or at the start, of M.E?

I must be related to someone from the A-Team because I just disappeared into my garage and assembled an incredible contraption from a few old parts. I found a DeLorean, a flux capacitor and – handily – loads of plutonium!

So I have for us… a time machine. Whilst we can’t really stop ourselves getting M.E, maybe we can share our wisdom with our younger self to help with it all.

The idea of this blog is for two reasons:

1. To help anyone reading who is recently diagnosed, still confused and worried, and could actually benefit from such advice right now!
2. To help those who have had it longer realise how far we’ve actually come and what we’ve learnt

I kind of fall into both categories; I’m a veteran of M.E in one sense, having first been diagnosed in the early-mid 1990s. But by the turn of the century it was more of a background lurker and it’s only since late 2015/early 2016 that I had a relapse. So, with more known about it now as well, I’m learning to live with M.E all over again, this time as an adult.

So I’ll get the proverbial ball a-rollin’. I have three things I’d tell pre-M.E me…

1. It doesn’t have to screw up your career and dreams. Some people may beg to differ on this one, particularly if your plan was to be a sprinter or something else requiring actual energy, or of course if you are bed or housebound. But for me, I missed 55% of my GCSE exams year. At the time, I was worried my grades wouldn’t be good enough and that I’d fall behind the competitive curve from the start. The pressure of grades is in the news in England a lot at the moment, at an even younger age of SATS tests. But, through my current eyes of managing to adapt and use my skills, and as someone who now recruits and looks through CVs when we’re hiring at work, I’d tell Younger Me not to add to my worries about this. Employers don’t just look at marks. They look at life experience, including voluntary things, they look at specialisms and want unique people who work hard. Whoever you are, you DO have something to offer, M.E or not. The same goes for interests outside of work. Yes, you might need to change and adapt things to make them more realistic for you. I’m a children’s football coach rather than a footballer myself, whilst a friend of mine with M.E just became a published author. So do not give up on your dreams. Ever.
2. Listen to your body sooner. Having had M.E before, I really have no excuse here. I knew what it felt like and should have listened to my body well before it finally gave in and I broke down. For that matter, I should have also listened to my wife and my doctor who saw it coming! If something’s not right, do something different rather than try to push through it. That means seeking help and advice and changing your lifestyle as appropriate. You might not be able to fully ward it off, but you’ll cope with it a hell of a lot easier.
3. Learn coping strategies earlier. This one is hot off the press really as I’m just discovering this at the moment. When you’re caught up in the fast pace of home and work life, it’s all too easy to never take time to stand and stare. Some of the calming and mindfulness things I’m learning now may well have been useful at an earlier stage and I’m sure I’ll learn other things such as pacing which would have benefitted Younger Me.

Your turn! What would you tell Younger You or a real reader who
is nearer the start of the M.E journey? Perhaps you’d tell them to find someone much sooner who ultimately helped you?
A doctor, a friend, religion or something else? Perhaps you’d tell them to slow down sooner or discover a certain managing technique earlier. Or would you tell them to make a different health/life decision somewhere?

Please – share your thoughts in the Time Drive Comments section below.
Note: It only works if you type at 88mph 🙂