Emma England

@emma-england-5 | contributor
I’m Emma, a wife and mum to a three year old son, and I’ve been living with ME/CFS for 5 years. Before the illness I was someone who loved to keep fit, and I was actuallly a qualified fitness instructor/PT!
Emma England

26 Tips for New Moms Living With ME/CFS

Following a difficult spell with illness and sleepless nights with my toddler, it got me thinking about how I managed to cope when he was a tiny baby. Looking back to those early days when he didn’t sleep much at all during the night, it was such an exhausting time. Having a new baby is unbelievably tiring for all new parents, but when living with a chronic illness like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it really does push you to your absolute limits. It can be challenging enough trying to look after yourself, never mind adding another little person into the mix! Thankfully it’s all very rewarding, and for me without a doubt, most definitely worth it. Despite all the rewards, that’s not to say it’s not really tough going. There are days when your body is crying out to stop and rest, but you have to push through and keep going. This is the opposite to all the things we learn to best manage our illness, like pacing and getting adequate rest. However, by putting coping strategies in place, I found ways to adapt and find a new kind of “normal.” I also think that to a certain degree nature kicks in, and your body goes into “survival” mode to allow you to cope in those first few months. Once my son got a bit older, I was able to adopt better pacing and resting again. I decided to come up with a list of tips that helped me to cope when my son was tiny. My hope is that they may help others who find themselves in a similar situation, or perhaps those who may be considering having a baby. So here goes! 1. My first and top tip is to not worry about anything other than looking after you and your baby. As long as your baby is loved and cared for, that’s really all that matters. You won’t have the time or energy to worry about anything else. I think I was in a “fog” for a lot of the first year, but we survived and got through – with some happy memories made too! 2. Set up a changing station downstairs. Keep some small storage boxes with diapers, wipes, clothes, and other things you may need to hand. This saves energy by not having to go upstairs for things, as well as not constantly having to think about what you need. 3. Nap whenever your baby naps. This is important for all new mums but “essential” as a mum with a chronic illness. Don’t get caught up in other “stuff.” You need every single ounce of rest you can get. If the house is a mess, it really doesn’t matter! 4. Pre-warn family and friends that you may not have the energy to speak on the phone, or even text. I had to hand over all baby announcement duties to my husband. Plus, I wasn’t able to speak on the phone to anyone for the first few months and could only manage very short texts. Social media was also a big no no for me for almost the first couple of years. 5. Accept any and all offers of help, such as babysitting, someone making meals for you, cleaning, etc. My sister was like a fairy godmother in the early days and used to bring us home cooked meals that we just had to heat in the microwave. This was an absolute godsend! I also remember her coming over in the first couple of weeks to sit with her new nephew so we could go to bed, and get a few hours sleep in the bank. 6. If possible, batch cook and freeze some meals before your baby arrives. Preferably ones you can eat with one hand – think chunky stews! 7. Make a packed lunch in advance (or ask your partner to make it) so you don’t have to use energy making something on the day it’s needed. 8. Try and eat regularly and keep well hydrated. I’d love to say eat healthily, but I found it wasn’t always possible in the early days. As long as you’re eating something to keep your energy levels up, that’s the main thing. Healthy eating can come later. In fact, I think having cake is essential in those early days. 9. You will need to have your baby weighed regularly in the first year. Ask your health visitor to call to your house for weigh in appointments (explain your illness) rather than go to the clinic. This helped me out so much. 10. Don’t feel guilty if you are not able to breastfeed. You may be made to feel you “should” by healthcare professionals, family, friends and even your very own self. I would have loved nothing more, but I knew I just wouldn’t have the energy – and that I would also need help from my husband with the night feeds. Do what is best for you and your family. It’s your overall happiness and wellbeing that is most important. Remember a happy mum means a happy baby! 11. If you are formula feeding, make life as easy as possible for yourself. Let your partner or relatives help with feeding your baby. You don’t need to do everything yourself. It’s nice if your baby is happy and adaptable to go to others. I also found it helped to have little storage pots of the formula powder measured out in advance. My brain would struggle to function to count the correct number of scoops for each feed, so this meant I was already prepared! 12. If you’re breastfeeding, make sure you rest whenever you can. Get your partner or relatives to help with other baby “duties.” 13. Have a prepped changing bag ready by the front door for occasions when you do go out. This helps to avoid any rushing around and having to think on the spot. Again, another energy saver! 14. Keep visits very short and well spaced out. Everyone will want to come and see your baby, but let them know in advance that these will need to be time restricted. This helps to manage expectations. Helpful visitors that stick the kettle on or bring food are definitely the best! 15. Set reminders in your phone to note down any medical appointments, feeds, or any medication you need to keep track of. In fact, just note down anything you need to remember! I found this helpful to refer to when asked any questions by healthcare professionals, and also just to keep track myself when brain fog was at it’s highest! 16. Don’t compare yourself to anyone else. Some mums will sound like they have it all sussed out! Yet, they probably don’t. Remember that they likely don’t have a chronic illness to contend with. 17. Do take time out for you. You may not get long, but even a bath or short meditation will help a lot. 18. Do your shopping online or accept any offers of help from family or friends to do your shopping. In the early days my brain wouldn’t even function to do it online. 19. If you have a partner and you’re able to, then set up sleep shifts! My husband and I would take it in turns to go to bed for a few hours in the early days and it helped us both get some sleep. You never know, you may have a baby who is a wonderful sleeper. We weren’t quite so lucky, so this helped us get by. 20. Dress your baby in easy clothes as it will save energy and stress. My son lived in baby grows (also known as sleep suits or rompers) until he was about 6 months old. You will be doing a zillion nappy changes, so make life easy. (Thank you to my sister for this tip!) 21. Set up “stations” in the kitchen and bathroom for when you need to move about, to make life easy for yourself. I put a bouncy chair in each so I had somewhere safe to put my baby down. 22. Remember you’re doing well if you manage to get dressed and brush your teeth before the end of the day! 23. Take snaps on your phone to record baby “moments” and create memories. I was given a memory book to complete, and I’m sad to say I just didn’t have the energy to fill it in. I’m so glad I took loads of photos and videos though. 24. Don’t worry about attending mum and baby groups if you don’t have the energy. I didn’t! I used to worry my son was missing out, until I realized that these are mainly an opportunity for mums to have a chat. Your baby just wants to spend time with you in those early months. 25. Have a friend or relative you keep in contact with for times when you do need to chat or ask advice. It can feel lonely trying to manage with a baby when you can’t get out easily, so it’s good to have someone to talk things through with. Mine was my sister. 26. Give yourself a massive pat on the back for getting through each day. It’s really is a huge achievement! I hope you found these useful. I also try to remember that everything is just a “phase.” The sleepless nights don’t last forever, and once your baby is older, it’s not quite so exhausting. Try and enjoy each precious moment, as it all goes so very quickly. You’ll find your way of coping and managing things. I know I found an inner strength that I didn’t even know I had. Getty Image by jacoblund

Emma England

Easy Self-Care Tips for People Living With Chronic Illness

I’ve created a list of easy self-care tips when living with a chronic illness. These are simple ideas that can be done without going too far or using up too much energy. 1. Allow yourself to daydream. Sit for five minutes and think about happy things. 2. Be kind to yourself. If you find you’re giving yourself a hard time, speak to yourself as you would to a friend. 3. Give your hands a little massage, whilst sitting in bed or on the sofa. Here’s one you may like to try. 4. Breathe. Spend a few minutes simply focusing on your breathing. Here is a three minute breathing exercise you may like to try. 5. Write down at least three things you like about yourself. Read them a few times and really acknowledge them. 6. Sigh. Breathe in and sigh the breath out loud. Repeat a few times. It helps to relieve tension. 7. Treat yourself to something. Be it flowers, a book, new pajamas – just because you deserve it! 8. Watch an old, favorite movie. Blanket and hot chocolate anyone?! 9. Be very proud of yourself for dealing with these horrible, debilitating illnesses every single day. 10. Work on letting things go. Anger, frustration, guilt, etc. You will feel better! 11. Write down your hopes and dreams. Start with a list of three, and add to it whenever one springs to mind. 12. Spend 10 minutes simply absorbing nature, enjoying what you can see and hear. Open a window if you can’t get out. 13. Write in a journal. It can be therapeutic to get your thoughts onto paper. 14. Practice saying positive affirmations. Example, “I am calm and relaxed.” 15. Make a nice cup of tea. Sip, relax and enjoy! 16. Have a long soak in the bath. Add some Epsom salts, magnesium flakes or bath oil, and light some candles. Bliss! 17. Listen to your body and act on what it tells you. 18. Be creative. Do some painting, knitting, crafting, taking photos – whatever floats your boat! 19. Light some candles and enjoy how it makes the room feel calm and relaxed. 20. Listen to the birds sing. 21. Graze on healthy snacks throughout the day to help manage your energy levels. 22. Acknowledge and be proud of your achievements, no matter how small they may seem. 23. Listen to some relaxing music. 24. Sit in bed and give yourself a manicure. Who cares if you’re not going out! 25. Laugh. It’s not fun living with chronic illness, but try to find little things to cheer you up. 26. Tell those close to you how much you love them. It will make you feel all warm and fuzzy! 27. Make rest a priority. Do whatever works for you to switch off and relax. 28. Look for the stars and the moon. Enjoy some star gazing! 29. Reach out and contact an old friend. This may be tough if folk have disappeared since your illness, but it will make you feel nice. 30. Pace yourself. You know you can’t do it all, so don’t try. Do less than you think you can. I hope you found these useful. As always I’d love to hear your comments, as well as any easy self-care ideas you may have. We want to hear your story. Become a Mighty contributor here . Gettyimage by: g-stockstudio

Emma England

How to Eat Healthy When You're Sick With ME/CFS

Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. When it comes to eating healthily when living with a chronic illness, you may find yourself in a bit of a quandary. We know that eating healthily can help us feel somewhat better, but we simply don’t have the energy to spend ages in the kitchen. Hmmm. Some days cooking anything at all just isn’t manageable. Many also rely on others to prepare and cook their meals (if they’re fortunate enough to have that support). So I thought I’d dig out my old nutrition hat (I’ve previously worked as a Personal Trainer and I’m also qualified in Holistic Nutrition!), and come up with some simple ideas on how we can still eat healthily when living with a chronic illness. Even if you’re unable to do these yourself, it can help those we may depend upon to spend less time in the kitchen. That has to be a good thing, right? I’m very aware that we all have our own individual nutritional needs. People may also struggle with a lack of appetite and/or nausea which can make food seem unappealing. Plus, in the complex world of chronic illness, all sorts of different allergies and intolerances can come into play. I’ve come a long way, but I’m still learning what works best for me as I go! I have found that (pretty much) cutting out dairy and substantially reducing gluten in my diet has made a big difference for a lot of my gut issues. Plus I try and eat a higher proportion of plant-based meals – though I still have some meat in my diet. We’re all so different though, and what works for me may not work for you. When it comes to chronic illnesses like ME/CFS, it really can be a case of trial and error until you work out an eating pattern that suits you best. My tips here are not about telling you what you should or shouldn’t eat. I’m merely just giving you some ideas to hopefully make your life a little easier! Feel free to adapt them to suit your needs! 1. Use frozen veggies to save time and energy by not having to chop. I honestly couldn’t live without frozen onions! I use them in soups, stews, pasta dishes, curries, etc.! I also love frozen peppers, and I’ve even recently discovered frozen, chopped garlic! Bonus! Frozen sweet potato and butternut squash chunks are also wonderful for making easy stews/soups or roasting them to add to salads. 2. Use frozen fruit to add to smoothies. I always have a supply of frozen berries and mango in my freezer. You can also chop up bananas and freeze them in bags. Handy for those over-ripe ones! 3. Staying with smoothies, I love my smoothie maker! I tried juicing for a while, but I found the chopping (and washing up afterwards) far too labor-intensive! I like to have smoothies to add some extra nutrition into my day while giving me a little energy boost. They’re also handy if you struggle with poor appetite or nausea, as it can sometimes feel easier to drink something. Be sure to sip them slowly though as otherwise it can be difficult to digest! The smoothie maker I use comes with two sports bottles (not used for sports of course these days!) and you just add your ingredients to this and blend! Then add your cap and voila, it’s ready to drink! Easy to make and easy to wash up! No fuss – phew! 4. Sprinkle seeds onto cereals, salads, soups, etc. Seeds are little nutritional powerhouses! They contain natural fiber, iron, protein, good fats and plenty of vitamins and minerals. You can use sunflowers seeds, pumpkin seeds, linseeds, chia seeds or sesame seeds, to name a few! I often buy a bag of mixed seeds to make life even easier! Happy sprinkling! 5. Add a little fruit or vegetables to each meal to be sure you reach your five servings a day! This is as easy as adding banana or berries to your breakfast, having some avocado or tomatoes with your sandwich at lunch, and having a side salad with dinner. 6. Add herbs to your meals. Fresh herbs are great but dried are good too (and easy!). Herbs have been used for centuries and have a whole host of nutritional benefits. These include strengthening the immune system, lowering blood sugar and cholesterol, anti-inflammatory properties and reducing the risk of some diseases. Think oregano/basil with pasta, coriander with curry, parsley/rosemary with stews. Often I’ll add herbs to salads for extra flavor and goodness. Or why not brew up some mint tea – any excuse for a cuppa! 7. Spice it up a little! Like herbs, spices are historically known for their wide range of health benefits. They are full of antioxidants, they can help to reduce inflammation, help digestion, reduce the risk of certain diseases, strengthen nails/skin/hair, etc.! Like herbs, each spice has its own specific benefits – there’s loads of info out there if you fancy learning more! So apart from the obvious like making a curry – why not sip some ginger tea (good to help with nausea too), add some cinnamon to your porridge and, if you’re feeling a little more adventurous, try making a turmeric latte! Or if you’re anything like my husband you’ll just add chili to everything! 8. Use tinned pulses such as chickpeas, black beans, kidney beans, lentils. They are handy to use (no soaking required!) and are a good source of protein, fiber, vitamins and minerals. Plus they’re inexpensive and count towards your five a day! These can be your friends for making easy stews, soups and curries! 9. Drink plenty of water. Don’t underestimate the benefits of being well hydrated! You could always keep a jug on hand to make this easier. 10. Use a slow cooker/crockpot. I recently dug out mine from the back of the cupboard and I’m so glad I did! Throw in all the ingredients in the morning, and you have a healthy, tasty dinner ready for that evening! Fab! I especially love recipes where you don’t need to brown anything first! If you have any tried and tested recommendations I’d love to have a peek please! I usually adapt recipes and use chopped, frozen vegetables to make life easier. 11. If you want to be a little more fancy you could stock up on a few nutritional powders! These are handy if you’re struggling to get enough vitamins and minerals in your diet or you just want a bit of a boost. For example, wheatgrass is high in iron. They can be used in cooking/baking, added to smoothies or even just stirred into water as a shot! Who needs vodka?! Just kidding! I’m not suggesting you go out and spend a fortune. It can be very easy to get caught up in thinking you need x, y and z when you probably don’t! Maybe just talk to your doctor and try a couple if you both think they’re necessary. I couldn’t live without cacao these days as I use it to make hot chocolate and energy balls. 12. Try healthy recipes with only a few ingredients listed. If you’re anything like me then a long list of ingredients will put you off! Again, you can adapt recipes and use frozen instead of fresh vegetables if it makes life easier. As you can probably tell, I’m not a fan of chopping! 13. Save the links (or take a pic if it’s in a book) to any easy, healthy recipes you like. If you’re like me, you’ll forget them otherwise! Pinterest is also great for finding new recipes. Check out my “Healthy Eating” board! 14. Graze on healthy snacks throughout the day to try and help manage your energy levels. Think nuts, seeds, fruit, energy balls, smoothies. 15. Double up the ingredients of a recipe to make enough for a couple of nights. My husband always makes a big batch of something at the beginning of the week, and it’s great to have something handy for the following night! Or if you’re using fresh (rather than frozen) ingredients you could always freeze batches. Try to make healthy eating fun and remember it’s OK to have a treat. Phew! Some days it will all go out the window and you just have to eat whatever is convenient to get by. That’s life with a chronic illness! However, I find that by making some little tweaks to my diet, I can still manage to eat healthily the majority of the time. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Wavebreakmedia Ltd.

Emma England

ME/CFS: What It Looks Like to Love Someone With Chronic Illness

August 30th was our wedding anniversary, and my husband and I were celebrating four wonderful years together! We were hoping to go out for lunch to celebrate the occasion, but we had to cancel (as is often the case!) as I didn’t feel well enough. Instead my husband used his lunch break to look after our toddler so I could rest. This got me thinking as to what it really means to love someone with a chronic illness. Whether it be a partner, spouse, relative or friend – it’s those little (but oh so important) things that really help to show your love for us. It’s not grand gestures or fancy outings. It’s just being there for us and letting us know you care.   Here is a little list I compiled as to what I think love is and how my brilliant husband shows his love for me! Love is: Loving you when you’re in pain Loving you when they can’t make you better Loving you when you’re too exhausted to speak Loving you when you’re sad Loving you when you’re grumpy Loving you when you’re upset Loving you when you’re frustrated Loving you when you’re a little bit mad at the world Loving you when you can’t make decisions or change your mind at the last minute Loving you when you have to cancel plans (a lot) Loving you when they have to cancel their plans to take care of you Loving you when you can’t do the fun things you used to do Loving you when you forget things Loving you when they have to look after children so you can rest Loving you when you’re fed up of nobody understanding your illness Loving you when you get your words all muddled up Loving you by knowing when you’ve done enough and making you rest Loving you by listening to how you “really” feel – day after day Loving you by still asking how you are every day Loving you when you’re in your PJs all day Loving you when you can’t wash/brush your hair and look a mess Loving you by still making you smile/laugh Loving you when they have to do the cooking/cleaning/shopping Loving you by having to work full-time and then come home and help take care of you – and not complain Loving you by still appreciating the things you can do and acknowledging the amount of effort it takes Loving you by still buying you flowers Loving you when you have to go to bed ridiculously early Loving you when you have to watch a movie in three parts because you’re exhausted and can’t concentrate for long Loving you when you’re upset after every medical appointment and offer a shoulder to cry on and an ear to listen Loving you by learning everything they can about your illness and being interested in new research Loving you by still listening to your hopes and dreams Loving you when others have disappeared from your life since becoming ill Loving you just for being you There’s loads more I could say but my “little” list is already getting quite long! I’d love to hear your comments on how those close to you show you their love and support. I know not everyone is lucky enough to have someone to love and care for them at this moment in time, and to you I send lots of love. Don’t give up hope of finding love and friendship. You are still you despite your illness and very, very lovable! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Ridofranz.

Emma England

4 Ways I'm Making the Best of Resting My Chronically Ill Body

Another Saturday has come around where I’m waving off my husband and toddler who are off out for the morning, so I can have some time to rest and hopefully recharge. I know many parents probably long for a rest, but resting because you want to is very different to resting because it’s essential. A lot of people would probably think it would be lovely to have a day lying in bed or on the sofa, but when you’re suffering and in pain, it’s a very different experience. Also, it breaks my heart that I’m not going with them. As I’m writing this, part of me feels guilty. I’m so grateful to my husband for being happy to spend time on the weekends entertaining our son. I know perhaps a lot of men wouldn’t be so understanding and genuinely pleased to spend so much time doing “kid’s stuff.” The logical part of my brain knows it’s great they have such a special bond and that my son is going to spend the morning enjoying all the physical things I would struggle to do. However, the emotional side of me feels sad. Looking back on how I used to be before getting ill, I was the kind of person who would have loved to be running around parks or going for walks up hills. When living with a chronic illness like chronic fatigue syndrome, getting sufficient rest is essential. That often means having to miss out on things, as well as ignoring tasks that need to be done, such as cleaning the house. It can be so frustrating seeing an untidy room, yet not having the energy to do anything about it. Or, you know that if you decide to tidy it, you will have to trade it for another activity you wanted or needed to do, or worse – cause a flare-up of symptoms. After a little cry, I get myself together and realize I have a choice. I can continue to feel bad, sad, frustrated and guilty… or I can decide to use the time wisely. I do this by making rest as positive an experience as possible. Also, getting frustrated causes a flare of symptoms in itself, so I figure it’s for the best! So how do we go about doing this? I’m sure everyone will have their own ideas on what works for them, and I would really love to hear those… but here are my “allies” when it comes to making the best of rest! 1. Tea I like to make myself a nice cup of my favorite tea and take the time to sit, relax and enjoy it. I find that a square (or three!) of good quality dark chocolate goes perfectly with peppermint tea – which you have to try! If I’m feeling well enough and it’s a dry day, I like to have this outside in the garden. Being in nature really helps to relax my mind and body. Otherwise, it’s the sofa or taking it up to bed. Get yourself cozy, sip, relax and enjoy! Really take the time to enjoy the experience. 2. Reading I like to have a couple of books stored on my Kindle at the ready for reading. I love having a Kindle as it’s so light. If my arms are too tired, I can prop it up on a pillow whilst reading. I was a book lover so it took me a while to let those go, but I honestly think it’s one of my best purchases since becoming ill. I usually have an easy fiction book on the go where I don’t have to think too hard, as well as a more thought-provoking book. A recent favorite was “The Alchemist,” which was a lovely, positive read. There’s so many fantastic bits I could quote but here is one of my favorites: “The simple things are also the most extraordinary things, and only the wise can see them.” I love losing myself in a good book. It provides some much needed escapism from all the pain and suffering. Also, I may learn a thing or two, or gain a new perspective. 3. Meditation I have found meditation to be one of the most helpful ways to relax my mind and body. It allows everything to quieten down – be it my thoughts or my symptoms. Before becoming ill, I used to be the kind of person who felt I was too busy to meditate. I now realize I missed out on creating a space in my life to relax and simply be. These days I find meditation is essential in helping me manage my symptoms and one of the most positive things I can do when resting. Like reading, it also provides me with some much needed escapism from my symptoms. I’m not exactly what you call the perfect meditator. Some days are easier than others. My mind can often still be busy, and I often fall asleep. However, to me, the most important thing is that my body is getting the opportunity to relax and hopefully recover a little. Even on the days where my mind is busy or I struggle to switch off from the pain, I always still feel better afterwards. In fact, many types of meditation now tell you to simply acknowledge your thoughts and pain – rather than trying to push stuff away. There are so many different types of meditation to try, and I like to mix it up a bit by trying different methods. I find different things work on different days. There are meditation apps like “Headspace” and “Calm,” which are useful. Sometimes I simply do a search on YouTube and pick a meditation track I like the sound of! Currently I’m enjoying guided meditations by the “Honest Guys.” 4. Naps Often after a meditation I have a little nap – if I’ve not already dozed off. Once my mind and body are more relaxed I find it easier to drift off. I usually set my alarm for 30 minutes later, as I find if I sleep much longer than this, I risk feeling worse. I find this is enough time for me to recharge a little without risking preventing sleep at nighttime. However, we’re all different and you have to do what works best for you. Just listen to your body. Some days you may need more sleep and others you’ll need less. Usually after a nap I’ll initially feel worse. However, once I’ve had my green tea and moved around a little I find I feel the benefits. Without that time to recharge I know I’d feel a heck of a lot worse. So there are my four favorite ways to make the best of rest. It doesn’t change the fact that I’d rather be spending time with my family, or doing something fun. However, it does help to make me feel more calm and relaxed. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: m-gucci

Emma England

ME/CFS: Practicing Gratitude Daily With Chronic Illness

Following my “July gratitude challenge,” I was keen to write a post to reflect on this and discuss both the benefits and challenges of “gratitude” when living with a chronic illness. In a nutshell, my gratitude challenge involved tweeting something I was grateful for every day, using the hashtag #mydailythankyou. I also asked others to join me, and I was delighted that many of my Twitter friends were able to contribute. Especially as all of them also have chronic illnesses, so I know how much effort it can take to focus on the “good” when we’re struggling. When living with a chronic illness like ME/CFS, it can often be challenging to find things to be grateful for. When we wake up in pain each day, gratitude is not usually the first thing that springs to mind. However, by trying our best to shift our focus away from all the pain and struggling, we can usually find there are still many things to be grateful for. Also, by doing so, it means we can still manage to find a little bit of magic in our everyday lives. Something we definitely need! Of course on the good days it’s so much easier to feel positive and be grateful. On the bad days it’s not so easy. You really have to dig deep. In the first week of the gratitude challenge, we had a flood in our kitchen which caused some damage to the rest of the house too. Yikes! When you’re healthy and well, this is a pain and an inconvenience. When you’re living with ME/CFS, it also has an impact on your health. Dealing with both the physical and mental side of cleaning up, phoning various people and arranging for things to get sorted was totally exhausting. When living with ME/CFS, anything that impacts your usual routines and uses up extra energy can really take its toll and cause flare-up symptoms. I remember thinking, “Well what a time to have started a gratitude challenge!” Also during the month, I experienced other difficulties. My husband’s parents were struggling with their health and it meant he had to be away from home a lot more than usual. It was hard to see him upset and with so much to cope with. In addition to this I also came down with a virus which really floored me for a while. Just as I thought I was recovering, I caught another cold which set me back to square one! So all in all, you could probably say it wasn’t a great month! However, on I plodded with #mydailythankyou, and I was actually surprised how helpful it was! It helped to shift my attention away from a lot of the crappy things that were happening and focus on the positives. Sometimes it just made me find something to be thankful for in a difficult situation. For example, my sister offering to help while my husband was away or my toddler making me laugh by wanting to splash in “the flood!” When focusing on gratitude, it doesn’t need to be big things. It’s often the simple things that bring the most pleasure. Things like enjoying a cup of tea or feeling the sun on your face can really brighten up your day. It was also lovely to read other people’s tweets about what they were grateful for in their everyday lives. It brought a smile to my face and it also motivated me to continue with this practice. Thank you to everyone who took part in #mydailythankyou! I loved them all but here are some of my favorites: “Today I’m thankful that I have my wife to care for me. Rough and painful day today, unable to do anything.” @wigglethemouse “Today I am grateful that I managed to have a morning coffee at the cafe! Long time no see.” @knitcrochetlove “Today I’m grateful I’m well enough to manage on my own this evening so my hubby can have an evening out.” @SallyClareR “Today I’m grateful that I was able to get up early so I could see my son before he went to school.” @Paul29286239Now “Today I’m grateful for frozen diced onions, saving me time, energy and tears!” @Cheggers1971 “Grateful for drinks and a snack left for me by my husband before his work day began.” @hopefoundinme “Grateful my health held up on holiday.” @macanders “It’s #SevereMEday today… grateful I’m not severe like 25% of ME/CFS sufferers.” @JulieDuffy4 Also, here is one of mine! “Today I’m grateful I was able to take my son to the library. We’ve had a lot of ‘at home’ days lately so it was really nice!” @Not_Just_Tired This is just a selection, and if you’d like to read more I’d suggest checking out the above Twitter accounts. As well as some lovely gratitude tweets, you’ll find some great information and resources on living with ME/CFS. What really struck me was that those of us living with chronic illness are really grateful for the little (but oh so important) things in life. Things that ‘healthy people’ would probably not think twice about and as such take for granted. Being able to go for that coffee or spend time in nature are things that can make a big difference to our daily lives. We really cherish any “good moments” our health allows us to have. Also, we truly value the support of our family and loved ones. In my opinion, practicing gratitude is not the same as positive thinking. I’ve got myself in a bit of a tizz in the past, giving myself a hard time about not being positive some days. I’ve since learned (still learning!) that it really is OK to have a bad day and to say everything is rubbish sometimes. It doesn’t mean you’re a negative, ungrateful person. It just means you’re human – and one with a debilitating illness at that! When living with a chronic illness we really don’t need to be giving ourselves a hard time on top of everything else. We need to have a lot of compassion for ourselves. Some days you will feel more grateful than others and that’s OK! Phew! Focusing on gratitude actually made me become much more mindful. I started to “look” for things to be grateful for each day. Then as I got towards the end of the month it had almost become a habit! I remember reading somewhere that it takes 30 days for something to become a habit! A few people have asked if I am going to continue with #mydailythankyou, and I have decided I will! Even if it’s not something we can commit to every day, it’s still nice to take the time to acknowledge the things we’re grateful for. When living with a chronic illness, anything that brings us a little bit of joy is worth doing! Gratitude may not cure us but it can certainly make us feel a little bit better about our everyday lives. I’d love to hear your thoughts on this, and any experiences you’ve had (positive or negative) on practicing gratitude. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via SALSEN.

Emma England

Going Outside, Connecting With Nature When Living With Chronic Illness

Since becoming ill with ME/CFS, just over four years ago, I have found many benefits in learning to connect with nature. Spending time in nature is both relaxing and deeply healing. It can provide some much needed nourishment for the mind, body and soul! Nature can help us to feel revitalized, and often helps provide us with a fresh perspective when we feel a bit stuck in a situation or negative mindset. Unfortunately in today’s modern world, we often fail to spend time in nature due to an increasing amount of time spent indoors – often in front of screens. As technology continues to progress, it is very easy to get caught up in this “cyber world” as we become addicted to our tablets and mobile phones. How many people take their lunch these days, surfing the net while eating a sandwich?   Also, when living with a chronic illness, it’s not always that easy to get outdoors. Just getting out of bed can use up a huge amount of energy, so getting out of the house can be a step too far on some days. However, on the “better” days, I find that spending time outside in nature has a positive effect on how I feel. Getting outdoors allows us to take a break from the monotony of living with chronic illness, as well as slowing down our busy minds. Paying attention to beautiful things such as pretty flowers or a clear blue sky can be incredibly calming. In fact, studies now suggest that time spent outdoors can have real long-lasting health benefits. From my own personal experience in living with a chronic illness, I have found that spending time in nature has helped to ease painful sensations in my body and calm my mind. Rather than focusing on what is wrong or feeling helpless and frustrated by my situation, it has helped me to refocus my attention on all the wonderful things we so often take for granted. On the “good days,” it’s usually easy enough to sit outside in a garden or on a park bench – or go for a stroll if you are up to it. As little as 10 minutes outdoors can make all the difference in how you feel, and it is such a simple thing to do! If you are unable to leave the house, then how about opening the windows and letting nature come in to you! Simply gazing out of the window and looking at the trees can be wonderfully relaxing! Or lying in bed listening to the sound of the rain can be nice and calming – having an almost meditative effect! However, if our minds are busy it can be difficult to switch off, which leads to us being de-sensitized as to what’s going on around us. Often we find our minds are elsewhere thinking about all sorts of other things. Also, when our bodies are in pain or our mood is low, it can be really hard to switch off from all of this. Something I have found helpful when learning to switch off and “connect” with nature is to tune in to your senses – so paying attention to what you can see, smell, hear, touch and maybe even taste! This can really help you to be mindful and to start appreciating what is going on around you. Simple things will make a difference, such as noticing all the colors you can see as you look around at the flowers, plants, trees and sky, listening to the sound of the birds singing, touching the leaves on the trees and even taking time to smell the flowers. When I first became ill with ME/CFS (and I was forced to slow down), it really occurred to me just how much I’d been caught up in the busyness of modern day life – by living life on a treadmill without really noticing what was going on around me. I vividly remember one day pausing to hear the birds sing, and then I realized just how long it had been since I’d noticed this simple pleasure. Now every time I go outdoors or open the windows, it is one of the first things I notice, and it always makes me smile! The more you take the time to consciously “tune in,” the more automatic it will then become. You will soon find you become much more aware of the world around you. One of my favorite things to do is to sit in the garden with a cup of my favorite herbal tea, and simply spend time watching and listening to what is going on around me. Being in nature can help to provide us with a welcome break from our pain, as it helps bring the body and mind back into harmony and balance. It’s not known as “nature therapy” for nothing! If you have more energy, then why not plan a trip to the seaside or go for a stroll in the woods? Particularly if you live in an urban environment, this can be hugely beneficial. Spending time breathing in the fresh air and taking time to admire the scenery “connects” us to nature, which can feel wonderfully invigorating. Kick off your shoes and walk barefoot in the sand or grass and enjoy the feeling of being free from the constraints of everyday life! Why not grab your camera and capture some snaps of the amazing things that grab your attention? This is something I have done since becoming ill and it has really helped me to pay attention to all the beautiful things around me (please feel free check out my Instagram account!). I’ve realized that you really don’t have to go very far to discover these things. Many of my photos are taken in my garden! Taking photos really does encourage you to focus more on what you can see – as well as maybe even bringing out your creative side! In my opinion, connecting with nature can help to create a positive perspective on life and brings back a sense of wonder for the world we live in. Both of which I feel I certainly need when living with the constraints of chronic illness. It may not cure us, but it can certainly help us to feel a little bit better about our everyday lives! What simple things can you do today to connect with nature? I would love to hear your comments! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Smileus.

Emma England

ME/CFS: Personal Trainer's Advice for Exercising With Chronic Illness

Please note that before you start any new exercise program it is important to get advice from your doctor. This is particularly important when you have a health condition or are recovering from illness. For medical advice always consult your doctor or a health care professional. When living with a chronic illness like ME/CFS, it can be so difficult to know where to start when it comes to exercise. Should we even attempt to exercise? Let alone which activities to try and for how long should we be doing these. I hope my gentle guide to exercise helps answer some of these questions and sets you off on the right path. As a qualified Fitness Instructor/Personal Trainer, I am fully aware of the oodles of exercise advice there is out there for fit and healthy individuals, but when you don’t fall into that bracket it can be difficult to know where to turn. I’ve even struggled myself with how to approach exercise! It took me a long time to decide to write this post as I didn’t want it to come across that exercise should be used as a “treatment” for illnesses like ME/CFS – it absolutely shouldn’t! People with ME/CFS are not lazy. Most of us would love nothing more than to be able to exercise but often our bodies simply won’t let us. Believe me, I know! This is why I feel that rigid programs like Graded Exercise Therapy (GET) don’t work for most people (see my previous post on GET), and has perhaps put many people off giving any kind of exercise a go. I know when I tried to do a series of circuit type exercises given to me as part of some Graded Exercise Therapy (GET), I just didn’t have the energy to do them, and just looking at what was expected made me feel anxious. As well as dealing with all the symptoms chronic illness brings, people really don’t need to feel under pressure to exercise. More research into ME/CFS is what is needed – completing an exercise program is not what is going to bring our health back! In fact, for many people it has made them feel worse or even relapse. From my own experience in living with ME/CFS, I have sometimes found it hard to judge how much I could do from day to day, and I have often tried to do too much and then found myself wiped out and exhausted. In the early stages of the illness the absolute best thing for me to do was nothing at all, and sometimes (especially for those of us with “fast-paced” personalities) what our bodies need is a really good rest. It is just as important to make the time to rest as it is to exercise, and this applies whether we are ill or not! In fact, when we’re ill, rest and relaxation are much more important. However, if we can adopt a flexible approach where we are very gentle with ourselves, we may find we can enjoy some types of physical activity which may in turn help our minds and bodies. When my body was ready to start moving again a little, it let me know, and I think some of the best advice I can give is to learn to listen to your body. When we try to override the messages our body is trying to communicate to us and push ourselves to do too much before we are ready, we usually end up paying the price. Believe me – I learned the hard way in the early days and many times I found myself back in bed!   However, there may come a point when we do get the right signals and we are perhaps ready to try and do a little more – after all, our bodies are designed to move! So where do we start? Even for me, with all my fitness training and experience, I struggled to know exactly what to do. See, when we are going through something as difficult as a chronic illness, we can be fearful of doing the wrong things and putting ourselves back to square one. Also, I know that for people with severe ME/CFS or some other chronic illnesses, they will likely be far too ill to be able to attempt any kind of physical activity. On my journey in living with a chronic illness, I have found “pacing” to be one of the best ways to manage my energy. This is basically about balancing activity and rest to manage symptoms of ME/CFS. I believe that whatever condition you may be dealing with, or even if you are fit and healthy, we can all benefit from pacing! By learning to balance our energy better and by taking the time to recharge our batteries, we can manage our health much more effectively. Just think of your energy as being like a mobile phone, and if you completely drain the battery it needs to be plugged in to recharge before it can be used again! I believe it is also best to take a very gradual approach to exercise when dealing with a chronic illness – where we may encourage our bodies to do a little bit more but don’t ever push ourselves to the point of exhaustion. Just remember that it is impossible to approach exercise in the same way you would if you were fully fit and healthy. It is also worth pointing out that some days will be easier than others, so don’t give yourself a hard time on days when you find you are low on energy – just listen to your body! For me, some days I will struggle to even leave the house, and I have had to learn to be OK with that and try not to beat myself up or get frustrated. It’s simply not worth it, and that in itself uses up far too much energy which we simply can’t afford to spare! So what types of exercise are best? This is down to you and how you feel but I think it is best to start with low impact activities such as walking and swimming. With these types of activities you are also in control of how much you do – so you can decide how far you walk or how many lengths you swim, and at what pace you feel comfortable with. Start really slowly and then you can gradually increase the distance, pace and frequency as (if) you feel ready. It’s really important not to be competitive with yourself. Go more slowly than you think you can and then if you find you feel OK with that level of activity you can perhaps increase it a little next time. See it as a marathon and not a sprint – if you will pardon the pun! Patience is the name of the game here! You will not be able to do what you have been able to do in the past before getting ill (believe me, I know!), so please do be gentle with yourself. After you start to gain a bit more confidence you may wish to join a group exercise class like yoga, for example. Please make sure it is something gentle to begin with and always discuss any conditions with the instructor to ensure they can make any necessary adaptions for you. If you start a class and find some of the exercises are too much for you, don’t be afraid to sit them out. In fact you really must do so! Just remember that everyone in the class is far more interested in themselves than what you are doing. You are responsible for your own health, and so if you find that a class or an instructor doesn’t work for you, then find another one that does! Also, be aware that some instructors may not be aware of your condition or how to manage this – and even if they do you will very likely know more than them! Just because someone is a qualified Fitness Instructor doesn’t make them an expert! When living with a condition as poorly understood as ME/CFS you almost have to become your own health expert! It is really important to choose an activity/class you think you will enjoy and feel relaxed about doing. The last thing you want to do is feel stressed or anxious about it as this will release all those unwanted stress hormones and you’ll feel exhausted before you’ve even started! Remember that activities like gardening and playing with your kids are good forms of exercise, so it doesn’t have to involve going to a class. For me, holistic exercise classes such as Restorative Yoga and Qigong have been hugely beneficial. These activities focus on mindful movement, breathing and restoring balance in the body. They can be very calming and help to ease any tension in the mind and body, and many of the exercises have a meditative effect. In fact, one of my favorite parts of these classes is the meditation and relaxation session at the end – bliss! Before I became ill I wouldn’t have had the patience to enjoy things like meditation, as I was more interested in fast-paced activities, but now I really value it and feel so many benefits from taking the time to relax my mind and body. If you have not come across Qigong before, it is a Chinese system of breathing exercises, body postures and movements, along with mental focus that supports good health and energy flow. The great thing about it is that it is suitable for everyone regardless of age, ability or condition. The movements are gentle and focus on restoring health in the body. In both the Qigong and Restorative Yoga classes I have attended, there is the option to do the exercises sitting down. This can be a great idea if you are experiencing mobility problems or your energy is low. If you find a good teacher they will be able to work with you and give you alternative exercises where appropriate. Sometimes I go to my yoga class and spend a lot of time just lying on the floor and absorbing the energy in the room – joining in with the gentle stretching exercises when I can. At one point I’d have been the person at the front of the class (or even teaching it!) but now I’ve found I”m OK with where I am and working within my new limits. It’s quite nice actually to lose that competitive side where we push ourselves to do more, and simply enjoy something for what it is! After attending these types of classes you may find you can also start doing some of the exercises at home once you become more familiar and comfortable with them. Please remember that it may take a long period of time before you see any improvement or you may need to go back to square one. You may even have to stop altogether. If you do then that is absolutely OK. Your body may not be ready to exercise or it may need to go back to resting for a while. With an illness as unpredictable as ME/CFS, things can change so much on a daily/weekly/monthly basis. It is your body and it’s important to (try to!) get to know what works for it. The most important thing is doing what feels right for you. For example, before I became a parent I was often able to do weekly qigong or yoga classes (on the good days) and I sometimes managed to go for a gentle swim too. Now all my energy is used up on looking after my active toddler so this has pretty much had to replace other exercise for now. On the days my little boy goes to nursery I have to rest in order to recharge and try to gather up the energy to get through the rest of the week. I sometimes manage to go to a restorative yoga class which I really enjoy, but not every week. Yes, I would love to be able to try to do more and as he gets older this may change, but for now I have to do what my circumstances will allow me to do. As obvious as this may sound please only exercise on your “better days.” There is absolutely no point in trying to exercise if you are having a bad day. If your energy is low and your body is in pain you will do yourself no favors whatsoever. Also, on the days you do manage to do some exercise please always factor in plenty of time to rest afterwards. When I go to my yoga class, it’s in the morning when my son is at nursery, so this gives me the rest of the day to rest and recover! As I said earlier, we have to approach exercise differently when living with a chronic illness. It takes a bit of getting used to, and yes, sometimes I would really love to just go for a run and not have to think and plan every little activity, but I have had to learn to adapt to this way of life and live as well as I can with it! Remember: take small steps and have lots of patience with yourself. I wish you lots of luck on your healing journey! I hope you found this useful? If you have any comments I would love to hear them! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Ridofranz.

Emma England

How to Raise Awareness of Chronic Fatigue Syndrome Without Energy

With it being May, and therefore Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness month, I felt inspired to write a post about simple ways in which we can help to create awareness of this illness — even when we have limited energy. Sometimes we feel we have to do something big to make a difference, which can make us feel overwhelmed and discourage us from doing anything at all. However, I figure that it all helps no matter how small it may seem — even if you can get one more person to know about your condition (and maybe even understand it a little) that’s a big achievement! More than anything I wish people had a better understanding of how we feel and what we’re going through. It’s unbelievably tough living with a chronic illness that is not only invisible a lot of the time, but also so poorly understood. So often we are going through hell on the inside yet we look well on the outside, and so people are completely unaware of our inner turmoil. It’s four years this month since I first became ill with ME/CFS following a nasty virus. Part of me can’t believe it’s been so long, yet another part feels like it’s almost becoming a distant memory of what it was like to live a “normal” life (I know many people have suffered for much much longer and so I know this must feel much worse for them). However, it’s taken me until the beginning of this year to have the courage and confidence to start speaking out about it more. I hate to admit it but I think a part of me felt ashamed that I was living with a chronic illness, and almost like I was a shadow of my former self. As someone who was always so health-conscious, never off sick from work, loved to exercise and eat healthily, I found it hard to accept that I was now someone who had a chronic illness. Before, I was Emma the personal trainer, Emma who did well at work, Emma who loved traveling, Emma who loved keeping fit, Emma who enjoyed socializing, etc. We have to try so hard not to let our illness define who we are. I’m getting there but it’s not easy! I also felt as though people (family, friends, folk in general) were thinking I should be better by now, and I would find it so hard to explain this illness and how it makes me feel — I still do! Sometimes I used to wish I had an illness that people understood better as at least then I may get a bit more empathy! Anyway, this has all driven me to change my outlook and try to do my bit to create awareness of ME/CFS! Here are some simple ways I think we can do this. 1. Telling people about your illness I never used to speak to people I didn’t know about my illness as I didn’t want to draw attention to it and I found it easier just to try and fit in as best I could. However, over the last few months I have changed my approach and started talking to more people and telling them I have ME/CFS — sometimes with surprising responses! I know many of us don’t get out and about much, but when you do get the opportunity and start up a conversation with someone, don’t be afraid to tell them! I’m not talking about preaching to everyone you meet (this would be annoying!) but if it’s appropriate, do talk about it. When I’ve made it to my restorative yoga classes, reiki clinics, and parent and toddler groups, I’ve recently had some really good conversations with people about it! Even in the library I had a nice chat with someone! It’s surprised me the number of people who say they know someone with ME/CFS and so have understood a little about it. Yes, I’ve had some people who have just looked at me and not really known what to say but that’s fair enough! I don’t expect everyone to be interested but at least I feel I’ve been true to myself when people have asked me questions like what do I do for a job or am I having another baby for example! Someone said to me the other day, “I’m sorry but I don’t know what that is,” so it gave me the perfect opportunity to explain! I’m not talking about ‘War & Peace,’ just a couple of sentences about the illness can give people an insight and therefore create awareness! I’ve even met a couple of people who have also had ME/CFS just through talking about it, and this has been invaluable to chat to someone who really “gets” it. 2. Explaining more to family and friends what it’s like to live with ME/CFS This is a tough one for me. Apart from my husband who sees me every day, I think that other people in my family and people who were once close friends, struggle to understand the illness. As well as my husband, my sister also makes a huge effort to understand and is always reading up on it and asking me how I am — this means the world to me. However, even she says it’s impossible for her to really get what it’s like without going through it herself. So that made me think that I need to take more responsibility to explain more about how I’m feeling and what I’m going through. I recently met up with an old friend who I’d lost touch with since being ill, and rather than continue to feel upset (and maybe even slightly bitter about it if I’m honest), I decided to explain! As you know it’s not an easy condition to explain but I did my best and it’s actually made a difference! I felt better for getting my feelings out there and since we met up she’s sent me some thoughtful and understanding messages to see how things are. Small things like that make a big difference when you have a chronic illness. 3. Using social media to create awareness and increase understanding This can be fairly easy for most of us to do (as long as we pace ourselves!), especially as we can do it from our beds or sofas. Soon after I first became ill I actually deleted my Facebook account and came off social media altogether. I found it too exhausting checking in with it in those early days, and I also found it brought some much needed peace to my life to be away from all the “hype” that it seems to bring! However, at the beginning of this year I set up my Twitter account @Not_Just_Tired as I felt passionate about creating awareness of ME/CFS, and sharing things that I am learning about the illness to try and live well with it. Also connecting with others who have the same or similar conditions is so helpful. When you read something and you think “yes, I feel that too” it makes such a big difference to know you are not alone. I love #MEawarenesshour which is every Wednesday 8 – 9 p.m. (UK), 21 – 22 CEST, 3 – 4 p.m. EST (USA), where people tweet about ME. I also recently set up my Facebook page “Not Just Tired,” which is in the early stages and work in progress (as I find my way around Facebook again!) but hopefully it will help a little to spread the message. Of course there’s Instagram and Pinterest too which I know many people use. 4. Blogging about ME/CFS to create awareness This obviously takes a bit more energy and is not quite as straightforward as the ideas above, but still it can be relatively easy these days to start a blog (if I can do it anyone can!). It can also feel quite therapeutic to write down your thoughts! I set up my blog notjusttired.com at the beginning of this year to try and help create awareness of what it’s like to live with ME/CFS. I’m enjoying sharing my thoughts and ideas, and hopefully it may help someone else who is living with this illness. I also love reading other people’s blogs about living with chronic illnesses and learning new things. So if blogging is not for you, simply sharing other people’s blogs and blog posts will help to get the word out! 5. Fundraising for ME/CFS Maybe you could take part in an event to help raise money for one of the ME/CFS charities and raise awareness, or even support a loved one/friend if this is not something you’d be up to doing yourself. Maybe even holding a coffee morning and sharing this on social media could get people talking about it! I’ve arranged to meet the two people I’ve met locally, who have also had ME/CFS, on ME Awareness day (Friday, May 12) for a coffee! If nothing else it will be lovely to have a chat with people who understand! 6. Supp0rting events like #MillionsMissing This is a movement to raise awareness for ME by highlighting the number of people missing from their lives because of this illness. On May 12th, 2017, protests will be carried out in 13 cities in seven countries to demand change and ask for increased government funding for research, clinical trials, medical education and public awareness. You can take part by attending one of these, or if you’re unable to attend in person you can take part virtually by sharing a picture of your shoes and posting it on social media with the hashtag #MillionsMissing. You can find out more here. So not just for the month of May, but for the rest of 2017 and beyond, let’s all do our little bit to help raise awareness of this debilitating illness. This list is designed to be added to so please do add your ideas in the comments below! I would love to hear them! We want to hear your story. Become a Mighty contributor here . Thinkstock photo by artant

Emma England

Explaining How I Feel as Someone With CFS/ME

One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me. CFS/ME falls into the category described as “invisible illnesses,” which I think sums it up very well! Other invisible illnesses include fibromyalgia, lupus and Lyme disease, to name a few. Living with CFS has made me realize how easy it can be to misjudge people. People may see me and think I look absolutely fine, whereas on the inside I am dealing with a debilitating chronic illness. This can be very frustrating! My husband also gets frustrated as friends/family will say “Emma looks well” and he’s trying to explain that although I do, I’m actually feeling pretty rubbish — to put it mildly! If you also have CFS/ME or other similar illnesses, you may also know how challenging it can be to explain to people how you feel when they can’t see it. When you have an illness that is so poorly understood, we really do have a challenge on our hands! When I first got sick, I used to worry about going out of the house in case people thought I was a fraud. However, after a few months of living with CFS/ME I realized I can’t stay cooped up inside forever. See, it’s not like having a short-term illness where you’re off work sick for a week or so. This becomes everyday life. You are living with a chronic illness and you need to try and get out and about when you can (as difficult as it can be sometimes). Obviously there are times when I feel so ill I absolutely can’t leave the house, but for me, on the “better days” I feel better for popping out — even if its just for a short stroll. Which brings me on to my next point. Just because you see me out having a coffee with a friend (or something along those lines), it doesn’t mean I feel well. For me there is an amount of effort (not to mention planning!) that goes into getting out for that coffee. It can use up a huge amount of energy and I have to make sure I factor in time to rest before and afterwards. Even then I may still feel it for the next day or two. Before I became ill I’d never have thought that going for a coffee could be such a big deal! It would be so nice not to have to think so much about every little activity, but these things really do need careful planning or it’s me that will be in pain. Please also bear in mind that the times you see me will be on my better days. So I will have made an effort to look OK and may therefore likely look like any healthy person. Very few people will see me on my bad days and during the tough times. Friends will see the Emma out having a chat and a coffee, whereas only my husband will see the Emma who comes home wiped out from it and has to go to bed for the rest of the day. I met someone else with CFS (she has since become a good friend) one Saturday at a reiki healing clinic, and she said she couldn’t believe I had the condition as I looked so well! At this time she was in the early stages of the illness and felt bad for just being out of the house. It was a “good” day for me, I had managed to wash my hair and I was also wearing makeup. I told her this and she said she didn’t wear makeup as then people wouldn’t believe how ill she was. I explained my own battles with this exact scenario but told her I now wear makeup as it makes me feel better and more positive. If I look in the mirror and I always look ill, that only makes me feel worse. We had a chat about the difficulties in living with an invisible illness but how it shouldn’t stop us from presenting our best selves to the world. Even when on the inside we may feel pretty awful. So please do bear in mind that next time you see someone with a chronic illness smiling and looking well, that person is likely to be going through more than you might begin to imagine. Follow this journey on Not Just Tired. We want to hear your story. Become a Mighty contributor here. Thinkstock photo by lorenzoantonucci