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CFS

Advice from a former ME/CFS sufferer

There’s light at the end of the tunnel!

The other day I chatted for about an hour with a family friend over in Australia who was diagnosed with ME/CFS after a bout of illness 23 years ago and, four years later, was no longer suffering! You read that right. Depending on how much you’ve heard/read about this illness you might be under the impression that it isn’t curable and, while that is technically true (as far as we know at the moment), there are ways to manage it that can essentially alleviate all symptoms.

Of course, every case is different, and I hope this blog post doesn’t come as a slap in the face to people with more severe cases of ME/CFS. What works for one person might not work for another, and some people might not find the same level of relief from Jackie’s methods. However, I consider her advice well-worth sharing, in case it works for you, in whatever capacity that might be.

Disclaimer: I’m not a medical professional, but I’ll do my best to relay this information correctly. Also, this post won’t address the illness itself nor my own experience with it – but I already have a post on that here.

Like many of us who have turned to our GPs for guidance with this condition, Jackie was confronted with Western medicine’s limited understanding of the causes and appropriate treatment for CFS. Through speaking to various specialists, her own careful research and experimentation and venturing into Eastern medicine and theory – she managed to devise her own treatment plan and, with a lot of time and a great deal of patience and dedication, saw overwhelmingly positive results. Today, she lives an active and rewarding life that is almost the same as the one that CFS brought to a halt two decades ago – only with a greater understanding of her body and what it needs.

Detail from Ilsée, Princesse de Tripoli. Robert de Flers, lithographies de Alphonse Mucha, 1897.

Massages

The first breakthrough for Jackie came when she went for a lymphatic draining massage and felt instant relief. For the first time in months, her eyes were bright, her thoughts were clear and, most significantly, her aches and pains were gone. This lasted for only half an hour before her symptoms returned, but those 30 wonderful minutes gave Jackie hope. She continued to get massages twice a week for several months, and, very gradually, the period of relief extended to an hour, two hours, an afternoon, a full day, etc. Eventually, Jackie could cut down on how often she went for a massage, and today can manage a few months without one.

If you have the means and are able to, Jackie recommends looking into different types of massage – whether that’s lymphatic draining, a deep tissue massage, or reflexology. These treatments promote better circulation and help oxygen to flow through your bloodstream, which is a crucial element of managing CFS, and especially helpful if you can’t get the same results through exercise.

Pay close attention to any immediate benefits when you’re deciding what works for you.

Walking

This is a tricky one – exercise is a huge topic of debate when it comes to ME/CFS. Often patients receive misguided advice about exercise (I was given a pretty intense exercise plan during CBT for CFS) and if you push yourself too far, you can definitely make things worse. However, walking can be very beneficial – again it helps to oxygenate your bloodstream, as well as getting you outside for some Vitamin D and promoting your mental wellbeing – as long as you take it s l o w l y.

Jackie was encouraged to take up walking by a Chinese herbal doctor. She began by walking a very short distance, to the end of her drive, and repeated this daily. When she felt able, she increased the distance, and continued to do so at very small intervals, over the course of a year.

Jackie’s crucial advice here is to listen to your body. This is a skill we all need to practice! When it comes to walking, you have to strike the careful balance between pushing yourself enough to go for a walk when you’re able, but not walking so much that’s doing more harm than good. Stop if it’s painful. And if you can’t do it daily, don’t. If your whole body is screaming to lie down and rest, then lie down and rest. Jackie says when it’s time to carry on or increase your walking distance, you’ll know.

Image from tumblr.

Meditation

Meditation, properly observed, helps lots of different people with lots of different things. It’s a practice that addresses both the mind and body, and specifically the relationship between them. This relationship is a central component of CFS, so it makes sense to address it through meditation.

Mindfulness and breathing practice can help to clear your mind and thoughts (CFS brain fog, I’m looking at you), promote the flow of oxygen through your body, and balance your energy. Furthermore, it will help you learn how to listen to your body. Relatedly, yoga offers much of the same benefits, while also addressing aches and pains and releasing tension.

Have patience with these practices, their full effects may only be realised with time and dedication.

Diet

Food has long been considered in many cultures to be nature’s greatest healer. Much of our health comes down to how we’re fuelling our body, and this applies to managing CFS, too. There are certain foodstuffs that are particularly bad for zapping your energy, and others that are much more nourishing. For the former, Jackie points out that even just a two-month break from a certain product will help you ascertain how it affects your body.

Avoid:

  • Preservatives. Jackie cut out all ready-made sauces and products that were heavily processed and packed with chemicals, and saw some really positive results. This might not be realistic for everyone depending on means and accessibility, but if you do have the option to cut down on additives and preservatives, do so. When her health had improved, Jackie began to reintroduce certain products into her diet one by one, paying close attention to the effects of each.
  • Caffeine. Unfortunately, coffee is apparently a no-go for CFS sufferers. Yes, that includes de-caff. And tea, even green tea! There is some level of caffeine in all of these drinks, and it’s not good for us. Jackie switched to dandelion tea, which is available in many health-food shops. She even discovered a method of making cappuccinos with the dandelion teabags and found that many cafes were happy to make one for her if she took the teabag and explained, so she could still participate in coffee-dates with friends (thank goodness, because these are my favourite kinds of outings).
  • Alcohol. Yes, Jackie cut out alcohol for 5 whole years while she recovered from CFS. I’m not very excited about this one, but I must admit that last year I went teetotal for a few months just to see if I could, and it was far easier than expected.
Dandelion tea. Image from lastea.com.

Prioritise:

  • Organic. Organic products tend to contain far less (or none) of the nasty chemicals that are bad news for anyone, but especially those of us with CFS. They’re often a little more expensive, so again this might not be for everyone, but if you have the opportunity to consume homegrown and homemade food instead of mass-produced and heavily preserved goods, do it!
  • Raw ingredients. Similarly, it is best to cook from scratch, with raw ingredients, if you’re able to. Instead of ready-made meals and sauces, use fresh vegetables, herbs and flavourings. This is inevitably a longer and more demanding process so it depends on your energy levels. For me, if I do have enough energy to put a lot of effort into food prep, I try to make a big batch of whatever it is (e.g. a curry, soup, or stew) and freeze several portions for days when I’m struggling.

Don’t underestimate the power of food!

Social life

Your social life is most likely already greatly affected if you have CFS, so this one is probably less of a choice. To state the obvious: we can’t do as much as we want to. Sometimes we do have some agency over this – when we have enough energy to do activities and see friends, it is easy to overestimate our capabilities and push ourselves too far (at least I find this, I suppose others might be a little kinder to themselves). Sometimes, we might not even realise we are over-exerting until later, and then the ‘payback’ time begins.

Just as it’s a part of suffering with CFS, saying no to plans and outings is equally an important part of recovery. Jackie told me she had basically no social life for 9 months when she began her recovery. This sounds intense, but there are still plenty of ways to interact and feel the mental and emotional benefits of friendship without taxing excursions (as this lockdown has taught us all!).

Learn to pick and choose which activities are serving you and your recovery best. Learn to say no.

In conclusion

The main lessons that I learned from Jackie are as follows:

  1. Listen to your body! Learn to recognise the signs that something is working or not. While many of these recommendations take time to work to their full potential, you will likely get an initial signal if your body likes something.
  2. Don’t push yourself. If you do too much, too quickly, you’ll likely take several steps back. This will cause you more harm, and put you off taking measures towards recovery. Again, this requires listening to your body.
  3. Progress isn’t linear. While you want to avoid the consequences of pushing yourself too much, it’s likely that there will be a few steps back over the course of your recovery, anyway. For example, you will gradually increase your walking distance, and then suddenly you’ll be too tired to manage it for a few days. This is okay. You’re still taking more steps forward than back. Rest, and pick it up again when you can.
Image from tumblr.

By Matilda

Hello! My name is Tilly (Matilda) and I am a 21-year-old student at the University of Sheffield, studying Politics and Philosophy. My blog is heavily influenced by these subjects, as well as by the arts in a larger sense. I enjoy making and consuming art - whether that be drawing, painting, poetry, or film.

My creations are from the perspective of a #spoonie. My invisible illness is ME/CFS, and I sometimes write about that too.

One reply on “Advice from a former ME/CFS sufferer”

This is a very uplifting and inspiring summary of the advice that you received and certainly does bring into view a bright sunny light at the end of the tunnel. I have every faith that you will gradually navigate the obstacles along your own route to enjoy more and more of that glorious sunshine over time. What’s more, by sharing this for other CFS sufferers to read, you and Jackie will hopefully help and encourage others to do so too. Keep going, Tilly! You’re doing so well!!!

Liked by 1 person

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