Listen To Your Body. If You Don’t, Who Will?

Monday 31 January 2022

Happy New Year, everyone. 2022 is now upon us and if you’re anything like me, you’re already fed up with hearing and seeing the adverts for the “New Year, New You” fitness campaigns that put so much pressure on us all to have some sort of resolution or goal this year. It reminds me of how much insensitivity is still out there to not only the chronically ill community but also to anyone who really just wants to make “Getting though each day of 2022” their goal.

I thought, then, that this would be a good time to go back to basics and to talk about what M.E. is, what it’s like to live with it and also to give anyone, whether you are a M.E. veteran or just starting out on your journey or if you care for or are family of someone with chronic illnesses, some hints and tips for daily life which can also aid in any post-festive malaise. Please also remember that M.E. Support provides a plethora of help all year round.

 

Let’s Talk About M.E.

M.E. stands for Myalgic Encephalomyelitis; it can also be diagnosed as CFS (Chronic Fatigue Syndrome). However, there has been a lot of debate in the community and among medical professionals about the latter term being used. M.E. is a long-term, chronic illness that comes with a wide range of symptoms. It is a complex neurological disease and affects all body systems. Not everyone with M.E. gets the same exact symptoms nor the same levels of the symptoms. There are patients who, like myself, find they are diagnosed with M.E. and then find later on more chronic illnesses are diagnosed (such as Fibromyalgia).

The more common symptoms reported by the majority of people in the M.E. community are:

  1. Severe fatigue – This tiredness is unlike any other. You feel like no matter how much or little you sleep, you just want more of it. Your body just can’t seem to function and wants to constantly shut down and you feel like lead.
  2. Insomnia – Yes, you read that right. Even though the body wants nothing more than to shut down, there are many in the community who suffer from insomnia. Personally, there have been many times I’ve been awake at 3 am wanting nothing more than to get some sleep but I’ve been wide awake.
  3. Lack of concentration/Brain Fog – My brain fog was so bad one day that I put my husband’s apple pie in the dishwasher. It can cause you to not take things in, makes decision making difficult, severely reduces your attention span and makes conversations and everyday things very difficult to engage with.
  4. Headaches – These headaches can just come on all of a sudden without warning; they can hit you the minute you wake up or at any time of day and can last hours, sometimes even days. It’s like your head feels toxic and heavy and filled with pressure.
  5. Flu-like symptoms – One of the ways I can tell I’m having a flare is that I start to feel like I’m coming down with a virus. My glands and lymph nodes swell, especially at the back of my head, under my arm and throat. It can feel this way for days, sometimes even weeks, and nothing helps it at all.

Other symptoms include balance problems, nausea, muscle pain and fatigue, confusion, sensitivity to sensory things such as light and noise, other visual problems, bladder issues and clumsiness. Please read The Symptoms of Myalgic Encephalomyelitis for further details.

M.E. is not fully understood by the medical world and is underfunded in biomedical research. However, there are many scientists and organisations who are doing all they can to change this. Currently, the main causes of this illness are thought to be:

  • Viral and bacterial infections
  • Genetics
  • Hormonal imbalance
  • Immune system problems

Anyone can get M.E. and age isn’t a factor in this illness either; however, it has been observed that women of the ages of mid-20s–mid-40s are the group that it tends to develop in most.

Symptoms can also vary from hour to hour, day to day, so it can be really difficult to gain a full perspective.

Diagnosis for M.E. is both simple and harrowing. Simple medically, in that all they do is rule out everything else your symptoms may be and conclude an M.E. diagnosis, as there are no defined tests for diagnosis. This too can be harrowing, mostly mentally, because it can cause so much frustration as you feel like a metaphorical ‘guinea pig’ and sometimes even start to question your own sanity. There aren’t too many medical professionals who are sympathetic towards you during diagnosis. I remember encountering a particularly impertinent neurologist who told me she “didn’t believe in M.E. or Fibromyalgia” and who sent me to a psychiatrist instead. She wasn’t much better and told me to “snap out of it”, and told me that if I didn’t stop what I was doing that my husband was very handsome and could easily replace me. This is the disgusting treatment that we receive from the medical world and I’m sure that many of you reading this have been put through similar, if not worse, experiences.

If you haven’t had a diagnosis and are going through that journey, please know you are not alone. You can join us on the M.E. Support Facebook Page where there is a whole community ready and willing to help and support you. If posting about your issue or worry seems a bit too public for you, we are always there to message and will help as best we can, or we can post the question for you with anonymity. Please also take some time to read Myalgic Encephalomyelitis: Diagnosis, Treatment & Prognosis.

There are a lot of M.E.-related groups on Facebook but please be aware that even though we are all linked by this illness, not everyone is as kind and considerate as they should be and you can get a lot of people in these groups who will make it seem that unless you are as ill as them, your point isn’t valid.

Like many areas of M.E. and chronic illness, how to manage the illness has a lot of controversy and debate around it. If you are reading this as someone who is just starting out with their M.E. journey or as a carer or family member, there is one golden rule I need you hear from someone with experience: There is no cure. No matter what may be put in place to help with symptoms and relieve any pain, M.E. will still be present and nothing will make it go away. So as tempting as that £59.99 supply of pills that helped whatever celebrity is advertising it may be, please stop and don’t waste your money.

The medical professionals will always suggest Cognitive Behavioural Therapy (CBT) and there have been people who have had success in managing their symptoms with this; however, you must be careful with this method as many in the medical field come from a place of still thinking it is a psychosomatic disease rather than neurological. Personally, I feel that this could help with the mental health aspect of the illness but it wouldn’t do much to help actual symptoms. For me, I feel that meditation and building that level of self-awareness of my body has helped much more than CBT would.

Energy management, also known as Pacing, is probably one of the main ways to help try and get a good balance of living life to what your level allows and keeping symptoms and flares steady. If you are new to energy management, you can find more information to get a better understanding of what we in the community call The Spoon Theory here. Knowing your own body and your own limits are key; also knowing that just because today you may feel more capable of doing more, it doesn’t necessarily mean you should. Once you build up an understanding of how you are personally affected by the illness, you can then slowly start to make up a little schedule for yourself that means, with time, you can do bits and pieces around the house again safely, knowing how much you can do, how long for and when to take rests. M.E. has all different levels. For me, when I first was diagnosed in 2013 I was bedbound and housebound for most of my days; with personal changes, support from my husband and learning more for myself, I have built-up a life that works for me and how I manage my illnesses. I know, though, the way I do things wouldn’t work for everyone, but it can be adapted for each person.

I have tried many different medications over the last almost ten years, to help manage symptoms and pain; however, I decided years ago to not take the medications as they made me feel worse overall rather than helping me. I do still have medication that works for both the dizziness and nausea I can feel, as that is an ‘as and when needed’ situation. It can be difficult, but talk to your GP thoroughly about your symptoms and see what works for you. There are many medications out there that have been tried by so many of us in the community that haven’t worked, but that doesn’t mean they won’t work for your personal circumstances.

My biggest challenge to this day is still very much the mental health aspect of having chronic illness. The symptoms take their toll all the time, never mind when other viruses come along to really make it a party, and it’s hard to feel like you are living a life you never asked for – a life you are living that many people don’t even believe in, even though it is very much reality.

Having a Mental Health Toolbox can really help and it is something that I use frequently to help me build resilience.

For us with chronic illness, adaptions need to be taken with these things as exercise isn’t always an option, but please know that these toolboxes are very much an individual thing.

For me, meditation is the basis of my toolbox. The more I practise, the more I realise how much it benefits me. I meditate for 15 minutes each day through an app called Balance, but there are many different ones out there. I use another called Insight Timer, which is completely free to use and has some great coaches and practices on there.

Music is my first love and forever boyfriend, even though there are days I need to adjust the volume and how long I can listen for; it will always be an instant comfort to me and remind me who I really am, outside the trials that life throws at me.

I love to read; granted, now I can’t do it for as long as I once used to be able to, but it still allows me to take time for myself to just be present and enjoy something for what it is.

Yoga and stretching for me is needed: I have osteoarthritis starting in my spine and it caused me to have a back injury to my disc and S1 root nerve in 2018, so I need to keep up with stretches daily, otherwise I start to feel a lot more pain and my walking ability is reduced further.

Being out in nature is another thing for me that allows me to be free. I’m lucky enough to live in some of the most stunning scenery and have a very supportive husband, who prefers to drive, so I can enjoy this part of my toolbox more than most may be able to.

It can be anything – pottery, painting, watching movies, talking to a friend once a week, writing letters or emails, putting on a face mask for 30 minutes while you nap – absolutely anything that allows you to build more resilience and allows you to cope better with situations, especially at the moment when everything is once again very uncertain and you may have overdone it with the festive period.

The main message is to listen to your body. You know when and what you need and don’t let anyone make you feel negatively about whatever it is you need. If you need to nap in the afternoon, go and nap. If you need to sleep during the day and be active during the night, then that’s absolutely okay if it works for you. You may think your body is letting you down so it can’t be trusted; I know I did for a really long time, but once I started to make friends with my body again and realise that it can still do things, just differently, it made a huge difference for me and how I lived. If you would like more guidance, Louise has written A Self-Help Guide to Managing Myalgic Encephalomyelitis, which I highly recommend reading.

Thank you for taking the time to read this month’s blog post for M.E. Support. Please do like and share this post and comment about your experience on the Facebook page. February’s edition of the blog will based around the grief experienced with M.E.