As some of you will know I have recovered from ME/Chronic Fatigue Syndrome (CFS), after struggling with it for over 6 years. So to raise awareness of International ME/CFS/FM Awareness Day on 12th May and the many millions of people struggling with ME/CFS/FM throughout the World I have decided to put together my tops tips for managing ME/CFS.
So here they are:
- Learn to relax properly (through meditation, visualisation &/or relaxation techniques). Remember it’s not a proper rest if your mind is still buzzing with thoughts! These practices also have a lovely side effect of helping sleep patterns.
- Eat healthily & regularly! This should be every 4hrs to maintain balanced blood sugar levels and release a steady flow of energy rich foods – not processed foods, sugars, or caffeine based foods. Food really is our fuel, so plenty of slow releasing carbohydrates like brown rice, quinoa and sweet potatoes are a must, plus plenty of vegetables and good fats and proteins with each meal.
- Try and have a fresh juice or smoothie each day. These are great ways to get lots of much needed nutrients into your body.
- Use your energy for fun things, not just chores. We all need some ‘me’ time and some ‘fun’ time, saving energy for just chores doesn’t make you feel very fulfilled or happy, so split your time between the two (the dust will be back tomorrow anyway).
- Only do half of what you think you can do. This one was so important to me. On days when I felt better I would do loads of things to make up for the other days, but this never helped and always made me feel worse again afterwards.
- Have the things you use the most close (on your bedside table or coffee table). I know this seems simply but it really helps to place anything you feel you might need for the day close by so you don’t have to keep trying to get up.
- Consider buying a small folding table to go on your bed. I had a little laptop table on my bed, which was a great as it meant things could be close by if I wanted to use them.
- Make a flask of tea (or whatever hot or cold drink you prefer) at the beginning of the day that will last you all day and save having to get up more often than you want/can during the day. My hubby used to make me a flask to drink during the day before he went to work, this would last me all day and sometimes I would have another flask with soup in it for lunch as well. This will also help to keep you hydrated.
- Put a pillow under your knees when laying in bed or on a sofa as this can relieve the pressure and pain in your legs. I found this really helpful for my heavy painful legs and surprising comfortable to sleep with.
- Do your shopping online if you can. The great thing about this is, if you feel tired you can just save your basket of goods and go back to it another time to finish your shop.
- Consider taking up a craft or art project. I know this sounds daft and also hard work, but it really helps to give you a sense of achievement (you can monitor) when you can’t do much else. I started knitting a patchwork blanket. I couldn’t hold my arms up each day for longer than one line at a time when I started it, so each patch would take me weeks, but over the months and years I produced many patches and loved the fact I was still able (if very slowly) to create something beautiful.
- Cook batches of healthy food when you’re feeling more up to it and then freeze them down for worse days. This includes batches of rice, quinoa and even jacket potatoes.
- Use a stool or high chair in the kitchen instead of standing for long periods of time. You can get a shorter stool for the bathroom also.
- I know it’s hard but try not to give yourself a hard time, it doesn’t get you anywhere and only expels even more energy and effects your adrenals and your sympathetic nervous system. It took me a long time to form this new habit, but it really helped.
- Learn to meditate. I mentioned this above in the learning to relax part but learning to meditate was invaluable to me. It helped to reduce my stress and anxiety, helped me actually sleep at night and get much longer and a better quality of sleep and with guided meditations I started picturing myself well, happy and healthy rather than constantly focusing on the negative stuff in my life. This in-turn helped build and reinforce new positive pathways within my brain and gave me hope for better health. Meditation also grounds you, so helps people feel a little less like their head is in the clouds.
- Practice Mindfulness. This is when we are mindful of our activities rather than thinking of dozens of other things. This helps to calm the mind and body and also helps us appreciate what we are doing. For instance, when we are mindful whilst brushing our teeth we absorb ourselves in the motion and feeling of the toothbrush, the water and how wonderful it is we have these things and are able to use them.
- Put a sign on your door saying ‘no doorstep sellers, canvassers or junk mail’ to minimise the amount of times your doorbell might get rung during the day and then you have to struggle to get up only to find it’s someone trying to sell you something you probably don’t want.
- Use natural herbal oils etc for calming, relaxing and sleeping. Lavender, camomile and rose-bud, valerian and such can me found in ‘night-time’ or ‘relaxing’ sprays, oils and even teas that you can pick up in most health food stores and will help sleep.
- Use Bach Night Remedy & Neal’s Yard Night Time Roll-on. Also their relaxation & energy roll-on blends are great as and when you need them for additional support. Neal’s Yard even do a study roll on, which I found helped when I knew I had some forms to fill in or something important to concentrate on.
- Try to give up or at least minimise caffeine, sugar, processed foods and white foods like white rice, white flour & white potatoes (these effects your blood sugar levels and you’ll only feel worse for it in the long run. They also allow you to think you have more energy than you do, so you over do it without realising it.
- Plan trips out in advance, looking on google maps and planning places to rest or to easily get home from is invaluable.
- Get fresh air – even if it’s just sitting in the garden. This helps your Vitamin D levels and also makes you feel like you have actually left the house! I would quite often sit or lay in a garden chair/sun bed and read a book, meditate or simply do nothing. I would be wrapped up in blankets and such like but still enjoy just being outside.
- If you cannot get outside then sit at a window and absorb the beautiful outdoors through the window, appreciate the fact you are able to take this all in rather than buzzing around with stress related blinkers on like everyone else out therein the world!
- Try to deal with underlying stresses and anxieties. Being constantly in that stress cycle effects sleep, mood, rest, the sympathetic nervous system, the adrenals and overall energy levels. I found Emotional Freedom Technique (EFT/Tapping) and Bach Flower Remedies really helped me deal with past traumas and issues and gave me a few less negative things to focus on.
- Join some online forums or groups for people with ME/CFS/FM so you don’t feel so alone and so you can chat to people that understand what your going through. I felt no one around me understood what I was going through, so this really helped. Although some of these sites can be rather negative (don’t allow yourself to get drawn into the negative one, delete these straight away if you can), on a whole most people are really supportive and understand what your going through.
- Read every recovery story you can (even if not ME/CFS/FM related), these were not only great reads but gave me hope and inspiration.
- Carry sunglasses everywhere you go, even in the winter if the sun effects your eyes like it did me. Who cares if know one else has them on, no one else needs them on (pretend you’re a movie star)!
- Take baths with Epsom salts. This helps draw out aches, pains and toxins from the body as well as allowing you to absorb some of the magnesium in them, which helps calm your sympathetic nervous system and eliminate toxins.
- Try natural pain killers like White Willow Bark and Ginger, they not only help with pain but also reduce inflammation.
- Try taking some supplements and/or teas for detox. Most of us have far to many toxins in our bodies, which is another thing we struggle with and need energy to deal with. Milk thistle and magnesium help with this, plus the items in the section below.
- Drink plenty of water and herbal teas (a number of herbal teas help with healing and supporting the body, bitter teas (like nettle and dandelion) help with detoxing and peppermint and ginger teas help settle to digestive system.
- Try writing a gratitude or happiness journal. This helped me to focus on the good bits of my day rather than how terrible I felt all the time. Even little things like ‘hubby bringing me my supplies for the day before he goes to work’, rather than saying to myself ‘I’m so alone and no one understands’. I was surprised how this helped my day to day thoughts.
- Watch at least one inspirational film, documentary or YouTube video each week. I used to find watching and reading the news and soaps could trigger me feeling low, so I started watching more positive stuff instead and this really helped.
- Focus on what you can do, (even if only tiny) to get better, I spent a lot of time and energy looking into why I was ill, why the NHS/Doctors didn’t want to or couldn’t help and why more research wasn’t being done. I realised later on that this didn’t get me anywhere, other than making me feel more upset, more negative and more alone. Instead I started to focus on little things I could do to help my health every day, the energy that I wasted on chasing a cure or a proper diagnosis for people with ME/CFS was then spent on positive steps for myself.
- Do skin brushing whenever you feel able to, I used to try to do this after every bath. The idea is that you run your hands or a brush up (always up) your body towards your chest. Then on the face you rub or brush down towards the chest. This helps stimulate the lymphatics and helps eliminate toxins as well as helps shift lactic acid in the body (which is some of the reason for the pain in your muscles). This made me feel worse to start with but really helped with my muscle pain after that.
- Start using and getting others to use natural and toxic free beauty products and household cleaners. Not only will these stop more toxins getting into your system that your body has to try and deal with but also they won’t smell so bad, which is a bonus when you’re sensitive to smells etc. It’s surprising what a mixture of white vinegar, water and a couple of essential oils can clean and kill in your home (plus it’s cheaper and better for the environment = bonus).
- If and when you can manage it try light Yoga, Tia Chi, Pilates, Rebounding/mini trampoline (even if sitting down to do these), they help stimulate the chi (energy) within your body and also make you feel more grounded.
- Reduce stress in any way you can, otherwise this will only lead to more energy being expended than you have. Sometimes this means reducing or removing certain people or events from your life for a while. Learn to be selfish, you really do matter!
Top Tips from others:
- Keep in mind things that you can do at different energy levels. Do the tiny things on low energy days. I’ve found this really combats the “I can’t do anything ever” feeling. By Nadine Steidl from Facebook community from From ME to Recovery.
- Keep a change of lounge wear within reach at all times to deal with nightsweats– also towels to put on your pillow and so on. By Nadine Steidl from Facebook community from From ME to Recovery.
- There is a time where exercise is a definite no no, especially with severe M.E as I’ve had but when the time is right swimming is the most gentle form if exercise for aiding recovery even if it means starting at a few minutes each visit and very gradually working your way up. By Lorna Cameron from Facebook community from From ME to Recovery.
- Linseeds/Flaxseeds are a great source of omegas and anti inflammatory amongst other things. By Lorna Cameron from Facebook community from From ME to Recovery.
- Keeping hydrated is a big one and may seem obvious but when very ill it can be more difficult. By Lorna Cameron from Facebook community from From ME to Recovery.
Some additional tips that made the world of difference to me:
- Read the Way of the Peaceful Warrior by Dan Millman. There are loads of books that helped my recovery, but this book and then DVD made me realise even if I couldn’t do much I could still appreciate what I had, it inspired me and gave me hope for better health. Click here for his website.
- Read David Hamilton’s book It’s The Thought That Counts. This book and many of David’s teachings explain in a detailed and sciency (but easily readable) way what our thoughts do to our bodies. Click here for his website.
- Read the book Adrenal Fatigue by James Wilson, or at the very least take the quiz on his website and have a nose around whilst you’re there. Click here for his website.
- Once you start to feel better read one Small Step Can Change Your Life: The Kaizen Way – Robert Maurer. This is a great way to make and monitor tiny little improvements in your health. Click here for his website.
- Most importantly – NEVER, ever, ever give up hope for better health!
Here are a few related articles, blogs and links that might interest you:
Jess’ ME/CFS Blog, click here.
The ME CFS Blog Roll, click here.
My Journey Thru M.E, click here.
CFS Warrior, click here.
World has Teeth / Just my Life, click here.
That’s all for me, but if any of you have any other tips you’d like to add to this list I’d love to hear them, so please comment below.