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*This post is pretty damn long, so please read it in sections if you find reading exhausts your ME/CFS*

I’ve had ME/CFS since I was 14, which is *ahem* just over 20 years. My god, now I feel old. Anyway, I’ve learnt a lot about how to live a ‘normal’ (I hate that word) healthy, active lifestyle with this condition.

Until a few years ago, only my family and close friends knew about my health conditions (I also have neutropenia). But I finally decided to share my experience on my blog because I want to help anyone else in a similar situation. Or at least try to.

I’m not medically trained – this is all just advice from what I’ve been through. Basically, I had to learn all of this the hard way and I’d like to help other people to not have to go through what I did.

(By the way, I originally wrote this over a year ago, but didn’t post it because I was diagnosed with long covid and have only just started to feel like myself again. The past year recovering from long covid had some similarities to when I was first diagnosed with ME/CFS. So it’s inspired me to refresh this post and get it out there. I’m telling you this because when I mention my training in this post I’d like you to know that I haven’t jumped straight back into workouts yet – the training I refer to in this post is how I was before long covid. I’m very much listening to my body at the moment and easing in gently.)

10 Things Everyone With ME/CFS Should Know

1. Patience is key

First of all, ME/CFS is a b*tch. There, I said it. We were all thinking it. So I thought I might as well get it out of the way right now.

Anyway, back to the whole patience thing… I’m not naturally a very patient person. But I’ve learnt to be patient when dealing with my health conditions. And life in general. 

With ME/CFS, in particular, you’ll have high energy days and low energy days, and sometimes that will stretch out to weeks, months or even years. 

When I was first diagnosed with ME/CFS, if I had a high energy day I’d foolishly try to cram in as much as physically possible.

I’d go all-out jumping around and try to cram in everything I hadn’t been able to do while resting in bed, I’d say yes to every party invitation, I’d exercise as much as I could.

And then I’d crash. Badly. 

I’d like to say I quickly learnt that this approach didn’t work, but it actually took me years. I’m a stubborn git and I just wanted to live my life like every other person. And if you’ve got ME/CFS I’m guessing you know what I mean.

Patience really is key though. So learn from my (foolish) mistakes and take your time easing back into your normal routine whenever you do have a high energy day. Don’t go all-out!

Tired woman

2. Be prepared for setbacks

I’m an incredibly positive person. But I’ve learnt to accept there will always be bumps (of varying sizes) in the road for me because whenever I start to progress with something, ME/CFS pops up like an unwanted ex sliding into my DMs and tries to pull me back. We’ve all been there, right?!

If only blocking ME/CFS was as easy as blocking those unwanted DMs. My body needs a ‘block’ button, damn it.

Anyway, the bumps in the road used to be significantly bigger than they are now and I’d end up getting signed off work for months at a time. I remember when my health got so screwed up I had to have a blood test every day for six weeks so the doctor could monitor what was happening with my body! 

Thankfully, if my health conditions play up these days it tends to just mean I need a day or two off training and then everything is fine again. But if someone had warned me that progressing in any area of life would involve this kind of pattern it would’ve made it much easier for me to grasp.

Remember though, an optimist is someone who knows that taking a step backwards after taking two steps forward is not a disaster – it’s a cha-cha.

So our health conditions are just making us awesome dancers. Theoretically anyway.

Woman relaxing by the sea

3. Try to stress less

It took years for me to realise that my emotional state has a huge impact on my health conditions. HUGE! And I’m pretty certain I’m not the only one.

When I used to have a lot of stress in my life my health was at its worst. When I look back I realise why! Now I’m in a much better place – I’m happier, I have way less stress in my life, I feel more fulfilled and I spend most of my time doing things I love with the people I love (especially my Son)…and I get plenty of alone time too, which I very much enjoy. Am I the only one who feels like alone time is a chance to refresh and get some mental clarity?

Anyway, stress puts so much pressure on your body and mind, so it’s no surprise that when you add ME/CFS on top it becomes an almighty struggle!

These days I tend to feel more feel balanced and happy, so I’m in a better place to handle anything life has to throw at me. Well, most things anyway. And as a result, I tend to handle my health conditions much better than ever before.

So try to minimise your stress-load. I know that’s easier said than done as many things end up causing us stress. But for those times when unavoidable stress does happen, take a few deep breaths and try to calm your mind instead of ending up in a downward stress spiral of worry and overthinking. An experience many of us know far too well.

10 things everyone with MS CFS should know

4. Listen to your body

I know, I know…I talk about this a lot. But I really can’t emphasise the importance of it enough. 

We live in a world where being exhausted is almost seen as a badge of honour. Like you’re only really working hard enough if you’re shattered every day. Or you’re only worthy of that promotion if you’re willing to push yourself to the point of a breakdown.

This is all a load of junk. Sorry but it is. Don’t get me wrong – I strongly believe we should all work on becoming the best possible versions of ourselves. I also believe we should work hard to achieve our goals.

But when your body is screaming out for rest, listen to it. And give it that rest it so desperately needs. 

This might not always be in the form of a sofa day…sometimes you can feel just tired of your usual routine. So even changing things up a bit and going for a walk (if you’re able to) or trying a new hobby could actually rejuvenate you! But if your body does need full rest, don’t fight it.

Sure, people might not like the fact you cancel plans or take a sick day.

But ultimately, you’re doing what’s right for your health.

Because if you don’t have your health nothing else matters.

That’s right – the things you worked so hard to achieve all mean nothing if you aren’t in good health to enjoy them.

And for those times when you do need to cancel plans (which is kind of a given with ME/CFS), remember this…

The people who matter won’t mind. And if they do mind then they don’t matter.

Woman reading a book

5. Exercise can both help and hinder

When my ME/CFS was at its worst, I remember my GP kept telling me to try to exercise. I thought he was insane because I could hardly even lift my head off the pillow! But once my energy levels regulated a little, I began going for short walks each day. And I mean really short.

Some days I literally just walked down the stairs to the front door and back. And that was enough!

But I’ve obviously come a long way since then. 

I spent years (genuinely over a decade) trying to figure out what my body liked and what would help me most and it turns out my body hates steady-state cardio. So running/cycling/swimming at one pace for long periods of time is out of the question. I’ve tried it numerous times and my body always freaks out for a few days/weeks afterwards.

But my body LOVES resistance training. I don’t know if it’s because my body finds it easier to regulate the energy knowing it’s only for short bursts of time – lifting weights tends to take maybe 1-3 minutes per set rather than running non-stop for 30 minutes or more.

Your body might be different though, so find what works for you. Maybe try walking or yoga. And definitely check with a GP before starting any exercise regime. Like I said before, I’m not medically trained – this is just advice from my own experience. And what helps and hinders may well be different for you.

One thing I have to point out is this…Definitely don’t even consider starting to exercise if you’re not totally certain you’re ready to add a little bit more movement into your life. If you’re currently spending most of your time in bed then now isn’t the right time to try getting active. But if you’ve reached a level where you feel like you could add a tiny bit of movement in then try something small like maybe walking around the house or doing literally one or two minutes of gentle yoga (not anything too physically demanding), just to see how things go.

I always think with ME/CFS it’s much better to do too little than to make the mistake of doing too much. That way you can monitor how things go and make any changes needed next time.

Please remember to pace yourself. It’s taken me decades to reach the level of active living that I’m at.

So stick to the rule of ‘little and often’ rather than trying to exercise for 20 minutes straight if you’re not used to it.

Jumping in like that will just end up setting you back further than you were before!

And yes, I learnt that the hard way too. 

10 things everyone with MS CFS should know

6. Learn what your limits are…and how far you can push them SAFELY

This has been the hardest part for me to master. If I ever completely manage to master it I’m pretty sure the Queen should turn up and present me with an award because I swear it’s worthy of that!

I’ve been great at listening to my body for a long time now, but I’ll admit it’s not always easy knowing what your body can handle and what will set you back.

When I was at my worst with my health conditions I struggled to even walk to my bedroom door from my bed unaided. I didn’t have the energy (or appetite) to eat, so my mum used to hold a straw to my mouth when I was thirsty.

Yet now I workout often and I’m able to do things I never dreamed I’d achieve!

Pushing your boundaries is the only way you can grow. In every aspect of life. But learning how much you can push your own limits takes time, so be careful with this – do it gradually.

I ended up becoming afraid of pushing my limits a few years ago because I’d messed up badly so many times before by pushing myself too hard too soon. Don’t make the same mistake I did.

So trust me, take your time with this!

Take tiny steps forwards. Seriously TINY steps.

Like adding maybe one minute more on to your walks.

And if your ME/CFS is severe like mine used to be, make sure you check with your doctor first.

Basically, listen to your body and get to know it better. You know your body better than anyone else, so pay attention to the signs it’s giving you.

The best advice a doctor has ever given me is to monitor my progress one week at a time, rather than one day at a time. 

Health conditions can fluctuate loads, so monitoring the change from one day to the next didn’t always work for me. But keeping an eye on how I generally feel from one week to the next is brilliant!

How do you feel this week? Do you have more energy than last week? Or do you feel worse? What have you changed this week that might have made a difference to you feeling better or worse? Track you’re progress. It can help!

Woman doing downward dog

7. What you eat might make a difference

Don’t worry, I’m not one of those people who believes food can cure all illnesses. I’m not about to say that drinking a certain juice will heal ME/CFS. If only! But what you eat does have an impact on your body and I definitely notice a difference with my energy levels when I eat certain foods. Sadly, the foods that give me more energy are healthy foods. I say sadly because I don’t understand why, in a world where we can travel to the moon, nobody has invented chocolate that has the same nutritional benefits as spinach! Why?!

Seriously though, I do actually enjoy eating healthy food most of the time. But who doesn’t wish chocolate was good for you?!

Something I found that majorly triggered my ME/CFS in particular was gluten.

This might not be the case for you or anyone else, but when I cut gluten out of my diet I saw an improvement almost immediately!

And even now when I accidentally eat gluten I notice a big shift in my energy levels. And my mood. Well, my Son notices the change in my mood because I become majorly grumpy. As in, nothing like my usual self at all. It’s incredible the difference it makes to me! Almost like a Disney villain – perhaps Ursula from The Little Mermaid. Yep, I’m a delight to be around when I’ve accidentally eaten gluten.

If I’ve been glutened, do not approach me. Trust me, steer clear.

I’m not saying you should remove gluten from your diet…because it might make no difference to you whatsoever. We’re all different after all. And please don’t just go removing food groups randomly as that’s not what I’d encourage anyone to do. Ever.

But if you have any kind of inkling that certain foods might be making your ME/CFS symptoms flare up I’d recommend keeping a diary of what you eat and how you feel.

Then if you’ve found a potential trigger, try temporarily removing those trigger foods from your diet to see if there’s an improvement.

And as always, this is probably best to do with guidance from your doctor.

After you’ve removed the foods for a few weeks try adding them back in to see if your symptoms come back. And if they do then you’ve found a potential trigger! Tah-dah…my longest and possibly most boring magic trick ever!

Woman choosing a meal from a menu

8. Rest really is best 

I used to get angry with myself for the amount of rest I needed in comparison to my friends and family members. But once I stopped beating myself up about it and started having naps and giving my body what it needed, I felt better. 

Rest doesn’t mean you’re lazy…or weak.

We all need it! Especially if you’ve got ME/CFS.

Ok, let’s think about our bodies as a phone battery for a minute. You know where I’m going with this…

You’ve felt that sense of panic when the ‘battery is low’ notification pops up on your phone. You rush to grab a charger, plug it in and then carry on scrolling. But why don’t we all pay that much attention to our bodies when they’re screaming at us to rest more? 

Treat your body like your phone battery.

I don’t mean let it run as low as possible while you keep scrolling to see how far you can drag out 1%.

I mean recharge it regularly with good quality sleep…and naps.

I LOVE naps almost as much as I love porridge. And that’s a lot! I’m practically addicted to porridge.

Anyway, I feel like naps might be the secret to my superpowers. And by that I mean the ability to live an active lifestyle without ME/CFS limiting me. Not much anyway. And they’re your best friend when you’ve got ME/CFS.

There’s loads of research on the perfect nap length and you could probably spend days looking through it all. But I don’t have a specific nap length I’d recommend because let’s be honest, it’s never quite as simple as that. Sometimes you’ll need 2 hours and other times you’ll feel better after 20 minutes.

If you find that you don’t need naps during the day, just try to get as good quality sleep at night as possible. I’d never heard of sleep hygiene until about six months ago, but it’s worth paying attention to. It’s helped me.

Sleep hygiene and naps rock!

10 things everyone with ME CFS should know

9. Fill your life with things you love

Speaking of awesome things…We all come alive when we’re doing things we truly love. And I believe our lives should be spent doing things we love with people we love.

When I was first diagnosed with ME/CFS, my main passion (and really my only passion) was dancing. When I was at my worst, I had to stop dancing. I’d been training as a dancer for 10 years and thought I was heading for some kind of career as a dancer (hopefully in the West End). Then the universe said no. I was devastated. And if I’m honest, that’s still my biggest dream in life. I WILL dance on a West End stage some day. Even if I have to sneak up there after watching a show to just do a quick shimmy before getting escorted out by security, it will happen.

Anyway, I let my passion for dance go for a long time simply because I had to. I didn’t have the energy to dance. And because that’s all I’d spent my whole childhood doing, I didn’t know what other things I might like.

But over the years, I’ve found so many things I truly love that I struggle to fit them all in to my schedule without overwhelming myself or using up too much energy.

I’ve made a particular effort to find things I enjoy that don’t involve being active.

That way, if I’m feeling good then I’ll dance, workout and/or sing.

If I’m not feeling good I’ll usually do some kind of crafting – like glass painting, macrame, etc. Or sometimes I’ll just watch movies.

In a world where we’re made to feel like we should always be doing something, I want to remind you that it’s ok to just lay on the sofa and do nothing. I LOVE it sometimes!

I also get days when I feel somewhere in the middle of high and low energy. I’m guessing you know what I mean. So for those days when I don’t quite feel like my body could be particularly active, but I want to move a little bit, I’ll play guitar (badly), bake or maybe go for a gentle stroll. I’m rubbish at playing the guitar, but I enjoy it. 

That’s another point I want to make here…

You don’t need to be good at something for it to be your passion.

It just has to fill you with joy, bring out your inner sparkle and make you feel free.

By the way, the in-between days are the ones where it makes a massive difference to your body because the times when I’ve ignored my body’s signs and trained regardless are the main times when I’ve ended up relapsing. But the times when I’ve moved my body just a a little on those days I’ve felt better and managed to avoid relapsing.

Playing guitar

10. Surround yourself with positive people

Ok, I’m publishing this post just as the Covid-19 lockdown is easing. So I’m obviously not advising you to literally surround yourself with people. Obviously don’t break lockdown.

But just decide on a few family members or friends who you can call when you need a kind of support group to talk to about your health conditions.

Make sure they’re people who have got your back.

People who will encourage you to do your best and achieve great things with your recovery and life in general, but will also guide you in the right direction if you seem to be struggling.

People who will tell you to rest more if needed.

My Mum is probably my main confidante. Any time when I feel like my health conditions are playing up I tend to feel lazy for not training…but my Mum always reminds me it’s ok to take a few days off. She also knows I hate being reminded that I have health conditions when things are going well. So for the times when I’m coping well with them she never brings them up unless I do…and that’s made a huge difference for me over the years. 

She knows how I feel about basically trying to keep my health conditions and myself as almost separate entities…

I strongly believe your health condition shouldn’t become your identity.

Take it seriously and always listen to your body, but (and this might sound crazy) try not to let it become who you are.

Hear me out… When I was at my worst, I used to think about my health conditions all the time. They’d be at the front of my mind whenever I had to make any decisions and I almost felt as though ME/CFS was becoming a big part of my identity.

These days, other than when I’m writing about my health conditions for my blog, I don’t tend to mention them to anyone other than my Mum, Brother and Son. If I’m having a relapse of symptoms then I’ll obviously pay attention to what my body is going through and I’ll seek medical advice if needed. But when I’m feeling well, I almost forget I have health conditions…and that’s made a massive difference to my quality of life. 

Yes, I have health conditions.

But that doesn’t mean I’m not capable of achieving incredible things.

I will achieve my goals, not despite my health conditions, but because of them. Because living with health conditions has shown me I’m stronger than I ever believed. And so are you.

Sure, it might take us longer to get there because we’ll encounter more obstacles than the average person.

But we’ll just keep dancing that cha-cha (taking two steps forward and one step back) all the way to our goals.

After all, two steps forward and one step back is still progress. So keep moving forwards, no matter how slowly.

And above all else, believe in yourself. You can do this. Believe.

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