Monday, 2 May 2016

ME/CFS Awareness

Today is 12th May: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) awareness day. While my ME/CFS isn't believed to be the predominant cause of my current level of disability (that honor goes to FND), CFS is how it all started years ago, and is what has put enormous strain on my body, so awareness of this condition is still something I deem very important, particularly as I now know, and know of, so many amazing individuals affected by this debilitating condition. ME/CFS has had a massive impact on my body over the last 6.5 years, and it still affects me every day.

Chronic Fatigue Syndrome involves a number of different symptoms, all of which can be life-changing. Below I'll detail some of those most common, but there are many more potential symptoms.

Chronic fatigue (the symptom that people always think of) can devastate lives, and leave people living with such little energy that they live with horrendous limitations. It's way more than just tiredness- it's a toxic exhaustion, way beyond the experiences of healthy people's tiredness, that isn't relieved by rest. There are people unable to leave their houses. Some people never leave a single room. Some people are entirely bed-ridden. And then there are many, many more people living a life limited to an extent- they may use a wheelchair some of the time to conserve energy (among many other reasons), they may have to opt out of doing some things they'd love to do to allow them to do others, they may have to push their limits to be able to leave the house but then suffer consequences afterwards.

Payback is a phenomenon that ME/CFS sufferers and their close family/friends know only too well. A sufferer may go beyond their body's limits to do something, but then suffer a horrible symptom flare afterwards as a result. This can be to have an enjoyable day out, or can be something as basic as showering. It all depends on the individual sufferer and their level of severity.

Post-exertional malaise is the cardinal symptom of ME/CFS. It's related to payback, but is more specifically the ill feeling that suffers of this condition get following exertion. This can be caused by any activity that is pushing the limits of the individual sufferer. The only way I can describe it is like the feeling healthy people get when they know they're 'coming down with something', when you feel unwell due to an infection- that's how we feel from doing things.

Pain is also a common payback symptom, but is also something that many of us battle daily. All day, every day. It's draining and demoralising to hurt so much. And people don't appreciate the pain you're going through when you're able to put on a brave face and smile. If you're out and about and smiling, people think you're pain free, which is often not the case. That being said, there are times the pain overwhelms us and we do break down and cry because of its severity, but this is the minority of the time. Pain can be difficult to manage, pills don't always help, or don't relieve it completely, and sometimes doctors are reticent to give out medication strong enough to keep the pain at a bearable level. There are reasons for this, but it can mean pain has a huge impact on quality of life.

I think it's fair to say Quality of Life of some moderately/severely affected patients is fairly appalling. Particularly those that are in the dark and unable to tolerate sound or touch. Sensory sensitivity is something many patients struggle with to varying extents. Being stuck in a bed/room/house, unable to be involved in the outside world, and able to do very little each day, is difficult. Some people cope better than others, some people are dealing with more symptoms than others, some hours/days are better than others, but there are certainly times that sufferers feel desperately in need of a break from their symptoms. The symptoms are oppressive and constant and difficult to constantly live through.

The devastating impact of the condition can have emotional consequences for obvious reasons. There's no break from the relentless struggle. It's hard to watch friends able to do things you can't and living the life you wish you had. It's hard to hurt and have to cope daily with things that most others can't even begin to understand. For some people the emotional consequences lead to mental health difficulties; they develop secondary depression, or develop anxiety about their future. We might seem 'together' and as though we're coping fine, but it really is hard.

We need emotional support, but unfortunately the impact of the condition can lead to isolation. We can seem flaky or unreliable. It's difficult to get us to commit to things, because we never know how we'll feel. Even good friends can drift away as a result. It happens more often than you might think. The fault doesn't lie entirely with the friends though, illness puts huge strain on friendships, and sufferers sometimes struggle to maintain friendships and keep in touch.

Part of the reason why friendships are difficult for ME/CFS sufferers to maintain is because staying in touch can be difficult due to the cognitive difficulties caused by the condition. Sometimes replying to emails or texts is beyond us. We haven't lost our intelligence, but understanding what's been said, and being able to formulate a response can be difficult. There have been times that I've read sentences, and have known that I knew the individual words, but the sentence meant nothing to me. I simply couldn't understand.

Another element of the condition that can make cognitive difficulties worse is orthostatic intolerance or co-morbid dysautonomia. Our bodies struggle to adapt to moving from lying to standing. This can be so severe that sitting can cause fainting. Research has suggested that ME/CFS causes a reduced blood volume and we can get blood pooling in our lower body, leading to reduced blood flow to the brain and vital organs. Reduced blood flow to the muscles is also believed to contribute to our pain. 

Nausea can also be a serious issue. Mine got so bad at one point that I was being tried on all sorts of nutritional supplements, I was told I was at risk of death due to being severely underweight, and we were seriously considering tube feeding into my small intestine. Feeling sick constantly can be overwhelming. Being unable to eat is horrendous. Trying different medications for it can lead to dealing with the side effects of those in addition.

Another symptom that I have to medicate is sleep disturbance. Most people think that we must sleep a lot due to fatigue. The truth is that it's far more complicated than that. The 'tiredness' we suffer from doesn't help us get to sleep- it's not like a healthy person's tiredness- and we struggle with un-refreshing sleep (we wake up exhausted). While it's common in the early stages of the condition to struggle with hypersomnia (sleeping a lot), over time this tends to morph into sleep reversal (sleeping during the day, but unable to sleep at night), or insomnia. While it's tempting to respond to our comment that we're tired, by telling us to nap, or have an early night, please don't- it shows a complete lack of understanding of the condition if you suggest that we need sleep.

Something that makes our condition difficult is that there aren't outward signs of our symptoms- it's an invisible illness. It can seem that we're using our condition to get out of things, or it can seem that we're exaggerating, and maybe a tiny minority are, but it's likely those you're suspicious of are in fact struggling through far more than you realise.

ME/CFS is a very difficult condition to live with. It's difficult for those around us to understand, and can have a huge impact on friends and family members' lives too.

It's a condition that is also difficult for doctors to understand, and it's still not fully understood, which can be frustrating for all involved! New biomedical abnormalities are being found all the time though, so progress is being made, albeit slow.

If you're wondering why awareness matters, please see blog post:

If you want to know more about the different severity levels of ME/CFS, please see this post:

If you're reading this because you have a friend or family member with ME/CFS, please know that they will really appreciate you reading this, try to keep in mind the battles they're facing when you're frustrated by the impact on you/your relationship, but also remember it's ok to be annoyed by that impact sometimes- it's hard on you too (just try not to take this out on the sufferer- they're dealing with enough already). To those who know no-one with the condition: I'm glad no-one close to you is afflicted to your knowledge, but keep this post in mind when you wonder why someone is behaving a certain way- people can be badly affected by a condition, and yet look perfectly well- ME/CFS is one of many debilitating, chronic, invisible illnesses, so that 'able-bodied' person using a disabled parking space or toilet, or not offering their seat, may not be as able-bodied as you think. To fellow sufferers: take this day not only as a day to raise awareness of our plight and our cause, but as a day to remind yourself how strong you are for coping with so many symptoms every day!

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