The Importance of Listening to Your Body When You Have ME/CFS

8
8

Learning to listen to your body is one of the most important things you can do, especially when living with a chronic illness like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). That’s not to say it’s easy!

Before I became ill there were many times when I knew my body was tired and I’d ignore it, and I’d do those (really important!) tasks like cleaning the house, replying to that email or going food shopping because they needed to be done. Looking back now, that was a real luxury. I’d do those extra things and yes, I’d feel tired, but that’s all – just tired. Shattered maybe, even at the end of a busy week at work, but my body would recover after a good night’s sleep or a relaxing weekend doing nothing.

These days, if I try to override what my body is trying to tell me the impact can be hugely detrimental. It can mean a flare-up of symptoms or even days in bed. Just from doing that one teeny little task like dusting the living room or going for a coffee.

Therefore it is so essential for me to try and tune in to what my body is telling me. When I listen to my body I feel better. Simple, right? Unfortunately not!

See, when living with an illness like ME/CFS you may sometimes have “good days,” and on these days it can be very easy to overdo things – often to make up for all the bad days when you couldn’t do anything! Sometimes you know you’re probably pushing yourself too much, and other times there seems to be no rhyme or reason for why something is OK to do one day but not on another. The joys of the unpredictability of this condition!

Also, living with ME/CFS can be very frustrating. As much as we may find ways to deal with this frustration (meditation, yoga or relaxation techniques, to name a few) it doesn’t stop the fact that it is frustrating! So sometimes we will do things because we’re fed up from not doing them or because we’re sick of missing out. Sometimes it’s even worth the “payback” just to go out of the house and feel normal for a couple of hours!

However, I find that by trying to “pace” myself I can try and make the best of things and live life the best way I can. I find this is a much better way for me to live than getting frustrated and making myself feel worse.

It’s taken time for me though to accept this new way of life. In the early days I found it especially hard, as I’m a naturally fast-paced person who likes to be on the go. I was a busy corporate employee where the focus was on how much can we push ourselves to do each day and reach our targets! Also, in my work as a fitness instructor/personal trainer the emphasis was on encouraging the body to do more to increase fitness.

However, gradually I have accepted the way things are (most of the time), and have actually found many surprising benefits from slowing down! By slowing down I now notice the world around me so much more, and enjoy simple pleasures like listening to the birds sing or seeing the blossom appear on the trees. I now really value taking time out from the busy modern world we live in and have realized how important it is to learn how to rest our minds and bodies. On my “better” days I enjoy activities like going for a mindful stroll or a restorative yoga class (where I listen to my body and go at my own pace). That’s not to say it’s easy. When you can’t do simple tasks or you have to miss out on social activities, for example, it can be incredibly frustrating. And when you remember what you used to be able to do when you were well it can feel heartbreaking.

I have found it’s been trial and error to find out what works for me – not just following a regimented pacing statetgy. However, in the early days having a tight pacing strategy was helpful as I needed some structure as to what I should and shouldn’t do. We’re all different though and what works for me may not work for someone else. That’s why learning to listen to your body is so important! Get to know your body and what tends to work best for it. Treat it well!

Pacing is even more essential for me these days, now that I’m a (proud!) Mum to an energetic 2-year-old! The most important thing to me is having enough energy to look after him (tough sometimes!) and anything else is a bonus. Sometimes I have to push myself beyond my limits just to get through the day as I’m no longer always able to rest when I want to. However, I have learned to put strategies in place to allow myself to cope with this. I am lucky enough to have an incredibly supportive husband who does a lot to help, as well as having a wonderful sister who helps by looking after my little boy one day a week. He also now goes to nursery one or two days a week which means I can fully rest and recharge on those days. I have learned how important it is to accept help when living with a chronic illness. Sometimes it’s not easy and it means swallowing your pride but it’s essential. If you feel better then so does everyone else!

So really, with regards to listening to your body I think it’s about being still and listening to that quiet voice inside. Some people would say it’s listening to your gut, and I find that usually my gut feeling doesn’t let me down! Try not to judge yourself or get frustrated when you can’t do something or know you shouldn’t do something. Learn to say no to things and don’t feel bad about it (one of my biggest lessons!). Also, don’t beat yourself up when you thought you’d listened to your body and acted on this but still wound up feeling rubbish. Unfortunately that’s just the unpredictability of this illness. Similarly, don’t feel bad when you do things you know you shouldn’t. Be kind to yourself. Living with a chronic illness is not an easy journey.

However, by becoming more aware of our bodies and learning to listen to them we really can make a positive difference in our lives. Even if it’s only a little shift, it still helps!

Follow this journey on Not Just Tired.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via lolostock.

8
8
TOPICS
JOIN THE CONVERSATION
hands holding on white blanket

When I Learned What It's Like Being on the 'Other Side' of CFS/ME

261
261

So here goes… I know what it’s like to be on the other side. I know what it’s like to have a close family member have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and not understand what they’re going through.

My older sister became ill with ME/CFS two years before I did and, I’m ashamed to say, I did not give her the support she needed.

Don’t get me wrong, it’s not that I didn’t care. I did. However, I guess I was too busy leading my own healthy life without trying to fully understand her situation. I did try to help, of course, but never in the best way. Every time we spoke on the phone I would somehow end up saying the wrong thing and upsetting her. When I visited, I took her flowers but didn’t think to cut the ends and put them in a vase for her. I’m sure they were more hassle than they were worth. I didn’t think to bring her meals, do some cleaning, anything that would have made her life a little easier.

My advice for people with ME/CFS? Communicate. When you become ill, it can seem, from an outsider’s point of view, that you have just become extremely withdrawn and down (remember, I’ve been on both sides!).

So here’s what I advise: Explain your symptoms. Explain how the illness fluctuates. Explain how if you can do something one day, it doesn’t mean that you can do it every time. Explain that, in fact, if you do something one day, it more than likely means that you’ll feel a lot worse the following few days. And, always a winner, describe your daily routine. When people realize that you have to rest before and after you brush your teeth/take a shower/do the laundry, any “I get really tired, too” comments will probably fly out of the window. And remind your listener that you suffer 24/7 and never get any respite, so apologies if you’re occasionally down in the dumps but, seriously, you deserve a medal, no make that a trophy (a massive one inscribed with the words “Woohoo, you’re amazing!”), for getting through each day.

I know communicating is easier said than done for many of you (me included) but I recommend doing it in whatever way you can. If you can’t talk to people, then send the occasional text or email. Or, if you have a caregiver, you could ask them to fully explain your situation to friends and family. Alternatively, encourage people to look at a relevant website; Action for ME provides a wealth of information on the illness.

My advice is to give people time. OK, so there will be some who just never get it. If their attitude or comments are really hurtful, let them go. But there will be others who also don’t really manage to get it but still mean the best. Remember that they are not horrible people, their comments are well-intended and they still care for you. After all, we ourselves have enough problems understanding the illness, so it’s understandable that it’s even more confusing for those around us.

I was fortunate that my sister forgave my ignorance. When I, myself, fell into this bewildering black hole, she was on hand to provide support and guidance as I floundered around in the dark. Although being chronically ill is obviously far from what we want, there’s no denying that we have become closer because of it. And when I was finally able to have a tiny wedding ceremony to marry my long-term fiancé, my sister, as maid of honor, was right by my side.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Polka Dot Images

261
261

RELATED VIDEOS

JOIN THE CONVERSATION

What People Who Say I 'Just Need to Get Out' Don't Know About CFS/ME

807
807

What people don’t understand about chronic fatigue syndrome (CFS) is that it’s not just being tired or when you have a late night out. It’s not comparable to needing to take a nap or needing to go to bed early tonight. Chronic fatigue syndrome is a condition that pretty much means extreme exhaustion without cause or relief. It’s never having enough sleep and always being tired. Brain fog, confusion, memory loss, or just being out of it is a struggle every day. No tasks are easy and you forget the simplest things. Which medications I took, did I sign the permission form, who I was supposed to call back?

Days that I have to get up at a certain times are always hard. For me, school days where I have to get my kids up and ready for school are always exhausting. Waking up is a long process, you know you have to get up and take care of your kids but you struggle to find the energy to even sit up in bed. Every task sucks the energy out of you and you always need a break in between. Make yourself a cup of coffee, sit and rest, shower, sit and rest. You always have to plan your tasks carefully. I shower in the late afternoons/early evenings and then I’m able to just get dressed and attempt my hair and makeup the next day. Trying to do my hair and makeup requires a stool. Even lifting my arms to brush and style my hair wears me out. I wish people understood how everything you do takes a little more out of you.

I tend to be more of an introvert lately, so any social interactions takes a lot of energy. I always require a nap afterward. When you’re a parent every trip out of the house requires not only getting yourself ready but also the kids. People are always trying to get you out of the house, saying, “You just need to get out of the house,” but they don’t realize even the simplest trip to the store or a doctor’s appointment is the max you can do in one day. Then it’s over. It’s time to curl up in bed with Netflix and your favorite fleece blanket. You only have so many spoons and then they are gone. All I want is to go see my family or have a night out, but there is always a cost to that. You might not be able to do anything the next day other than lay in bed and rest. When you’re a parent that means less time playing with your kids, reading them story or helping them with their homework.

If you want to hang out with your friend or family member with CFS, offer to come to them. We always love spending time with people, game nights or a movie marathon. Just laughing and taking our minds off what we are going through. So the next time you tell someone with chronic fatigue syndrome that they just need to get out of the house, remember what that will cost them.

This blog was originally published on My Autonomic Dysfunction Adventure.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by junce

807
807
TOPICS
JOIN THE CONVERSATION

When an Advertisement Treated My Disability as a Joke

173
173

It is not easy to navigate London with a disability, as any disabled Londoner will tell you. Accessing most tube stations requires walking up and down stairs, passengers with prams and extra luggage often take up spaces reserved for wheelchair users, and there is an overall hurrying mentality that means anyone traveling slowly is met with groans, rolled eyes and sometimes even pushing and shoving. I am often made to feel like a nuisance just for leaving my home.

Recently, I was also made to feel like a joke.

While on my way to a hospital appointment, I noticed a poster imploring passengers on the tube to “Please give up your seat for those less able.” At first, I was encouraged, and then I read on:

“Please give up your seat for those less able. Like bad sleepers. You have to pity those poor souls who didn’t sleep well last night. But you don’t have to be like them. The Eve mattress is made with next-generation memory foam to provide the perfect bit of shut-eye. No lumbering around like the walking dead for Eve fans. No desperate search for a carriage with a seat. Just a more alert mind and body. Everybody deserves a perfect start to the day. Start by going to our website. Tap in START for your £50 off and your 100-night trial will begin within one day. Which is round about the same time your perpetual lethargy will end, coincidentally. Everybody deserves the perfect start.”

It’s hard to explain just how upsetting this was to read. I have myalgic encephalomyelitis, also known as chronic fatigue syndrome. It can be very hard for me to get a seat on the tube sometimes, even though I need one, because I don’t look disabled. Until TFL rolls out their much anticipated “please offer me a seat” badges, when there isn’t a seat, I have to decide which person in the carriage looks least likely to argue with me about whether or not I’m disabled. This is a very real fear. On the basis of exactly no expertise whatsoever, many able-bodied people appoint themselves as arbiters of disability, confronting people like me when we use the elevator, park in a disabled space, or even ask them for a seat. Sometimes these confrontations can turn violent.

Society is largely oblivious to the everyday experiences of disabled people like me. The people at Eve Mattress certainly seem pretty oblivious. An able-bodied passenger’s search for a seat isn’t really desperate, but mine is. Sometimes that last seat is the only thing that will stop me from collapsing.
Here’s the thing: having a bad night’s sleep does not make you disabled. Needing a new mattress does not make you disabled. Being tired is nothing like living with CFS. I’m not just “tired:” I have chronic pain and chronic fatigue. My mobility is restricted; some days I can’t stand. I am often to be found “lumbering around like the walking dead,” but my “perpetual lethargy” will never end, coincidentally. One bad night’s sleep does not come close to a lifetime of fatigue, and it is offensive to suggest that it does.

Either Eve Mattress were deliberately intending to hurt and insult disabled people like me, or more likely, the thoughts and experiences and inner lives of people like me are something they never stop to consider. Both of these possibilities are ableist, but the latter is subtler, more insidious and deeply entrenched in how we think about what it means to be human. Far too often the disabled are left out in people’s thoughts, just as we are shut out in real life by doors we can’t open, stairs we can’t climb, or those who refuse to make room.

To the able-bodied, I say: I’m not an inspiring quote to put on a poster, or a sob story that makes you feel better about your life, I’m a person. I don’t want your “pity,” and I certainly don’t want you to laugh at me or at people like me. I want you to treat me with the dignity and respect you expect to be met with yourself; I want you to change the way you think about disability, and listen to disabled people when we tell you that you’re wrong. I want you to be outraged at the prejudice and the scorn we live with every single day. And, yes, sometimes, I want you to let me have your seat.

A complaint about this advert has already been made to the Advertising Standards Authority. If you want to complain, I suggest you contact Eve Mattress, or call them out on social media.

We want to hear your story. Become a Mighty contributor here.

173
173
JOIN THE CONVERSATION

Chronic Fatigue Vs. Tiredness

TOPICS
Video
JOIN THE CONVERSATION

Please Don't Suggest 'More Coffee' for My Chronic Fatigue

7
7

There is a huge difference between fatigue and being tired. Chronic fatigue, due to medication or illness, isn’t, “I stayed up too late last night, I’ll just have extra coffee.”

Fatigue is needing help to get out of bed to pee.

Fatigue is not showering because you don’t trust yourself to be able to stand for that long.

Fatigue is falling asleep sitting up, waiting for your toast to finish.

Fatigue is skipping meals because whether it involves cooking, a drive through, or just grabbing something out of the fridge, it’s just too much work.

Fatigue is crying while getting ready for work because you just can’t bear the thought of having to function.

Fatigue is setting an alarm two hours early and still being late.

Fatigue is being unable to read because the book is too heavy.

So please, before you suggest drinking “more coffee,” or before you say you’re jealous because I “get to” stay in bed all day, remember this isn’t a choice I’m making.

Please reconsider your words. They hurt.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: efetova

7
7
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.