A couple of months ago I stumbled across May 12th being the date for Chronic Fatigue Awareness Day, and that for 2015 there would be another #May12BlogBomb event. It was a pleasant surprise, as there’s little doubt in my mind that chronic fatigue is a condition which needs far greater public awareness. It also seemed a good occasion to dust off the quill (or keyboard, but that doesn’t sound quite so romantic does it?) and write again, which I’ve not done much of since having chronic fatigue. I’ve still got this old blog, which I’ve not used for ages and which has a title that isn’t even vaguely relevant anymore, but it will certainly do. I figure it’s a good opportunity to add a little more noise to the #May12BlogBomb.
I’ve spent my short career thus far working in mental health and wellbeing, and I’ve seen that chronic fatigue is afflicted by many of the same problems as mental health issues are. To name a few; a lack of understanding, stigma, and the mainstream health system being poorly equipped to deal with it. I’ve seen awareness around mental health issues grow considerably over the last decade, and I’ve also seen how powerful it’s been when people share their stories. That’s all I really have to offer this year for chronic fatigue awareness day, even it feels rather self-indulgent. However, if it creates a little bit more understanding somewhere then it’s got to be worthwhile.
This particular story starts with a young man living in London who attempts to fit a two days’ worth of work (sometimes three) into one, cycles to work in the winter rain to save money and generally considers any physical ailments to be irritating obstacles preventing him from getting to where his mind thinks he ought to be. He finds life pretty stressful and difficult – more so than he used to find it.
During January last year, which is pretty much happy season for viruses, he finds himself unwell with what seems to be a generic flu/cold-like thing. Much to his irritation, he gets over one virus, and then shortly after another one arrives. This carries on for a while, until eventually the viral symptoms have gone, and yet there remains a peculiar feeling of exhaustion – as though he’s not slept at all, has severe jetlag and has just run ten miles.
The young man is confused. He returns to work. He gets home, immediately falls asleep and wakes up later on that evening wondering what happened. He repeats this for a few days before resigning to more time off of work and seeing the GP, who promptly diagnoses postviral fatigue. It should pass in a couple of weeks says the GP. The young man thinks that this is an unacceptably long time…
Several weeks pass and there is little improvement. He decides that if he changes his job that should fix things. He goes to interviews and then has to rest for several days afterwards. He then decides it must be the house, so he goes flat hunting and the consequences are very similar. He determines that it’s time to turn to Doctor Google. He follows the virtual trail of breadcrumbs and they lead him to chronic fatigue syndrome/ME. The thought terrifies him, as do the horribly low recovery rates, but each day makes this realisation seem clearer. And he’s getting worse, not better.
At this point he gets fortunate – very fortunate. It turns out a friend of the family works at a clinic set up specifically to help people with chronic fatigue and fibromyalgia. She explains what’s happening to his body, tells him what to do now and reassures him that she’ll help him get over this.
A few weeks later and he’s packed up most of his life in London and moved back in with his somewhat surprised but supportive parents to (attempt to) get better.
I remember very little of my first month back living with my parents, but they tell me that our conversations rarely consisted of more than a few words, and I was asleep most of the time. I’m quite sure that the person happiest about the situation was the cat, who now had a full-time sleeping companion.
I do remember feeling relieved. My body felt so exhausted and was craving rest, which was much easier to do now I was no longer living in London. It was not a comfortable position to be in however, physically or psychologically. I felt mentally foggy, physically wiped out and everything ached – this was essentially the case all of the time unless I was completely distracted (thank goodness for Sky Sports). Weeks would pass with me hardly being there, and day to day reality could be pretty bleak. I was very restricted in how much I was able to engage – contributing to dinner for example could be considered a grand achievement.
The psychological adjustment to begin with was chastening and there was an element of grief. I had to let go of my job, independence and acknowledge that any goals I had at the time (finding a cool flat, the perfect job, a nice girl) would be postponed indefinitely. I cancelled summer plans – a trip to Scotland, a cycling holiday tracking the Tour De France and hated the feeling of letting people down. Amusingly, the thing I held onto the longest was the Oxfam Trailwalker; a 100k charity walk that has to be completed within 48 hours. I have no idea what I was thinking in still aiming to complete it and my parents mocked me repeatedly for it. Bear in mind I needed a lie down after a walk down the road to Tesco and back… I guess you have to let go of things gradually.
It didn’t take long though for things to start picking up. I began working with a nutritionist, the chronic fatigue health practitioner I mentioned earlier, and added relaxation practices such as meditation and yoga to my daily routine. The people helping me were, and still are, amazing – I’d have been lost without them. I struck gold with my GP too, who started by giving me the most enormous list of blood tests to check whether there could be another cause. For those who aren’t aware, chronic fatigue is a diagnosis of elimination.
There was definite improvement. My folks said that when they heard me playing the guitar for the first time since I moved in they knew I was feeling better. Indeed, in time I found myself feeling better in myself than I had done in quite some time. I’d been rushing around for the last five years, and the change of pace was actually rather welcome. I guess I found peace with my situation, which is rather more pleasant than fighting it. I also learned a lot during that time, but more on that later.
I was blown away by the support from friends and family, who showed so much understanding. Some in particular took the time out to lift my spirits almost every day, and I’m so grateful. My day to day life was limited in many ways, but I still had those relationships with people – and that’s by far the richest thing. I was aware that some people were quite sceptical about the condition, but to be honest I’ve never gotten hung up on that. It’s a confusing condition to live with, and I’d imagine much more so looking from the outside in.
The last twelve months have definitely seen my health going in the right direction, although it’s been up and down the whole way. The peaks and troughs are less severe now, and the troughs don’t seem so deep or difficult to clamber out of. Different parts of my system have recovered at different speeds. For example my general energy and immune system are pretty good nowadays, but I can’t sustain mental activity (like this!) for too long before I begin to feel foggy and my eyes start struggling.
Each month that passes I feel like I can do more. I’m now able to have a pretty lively social life, I go dancing, I can work a little, I drive to visit friends/family around the country and I’m talking to a couple of places about volunteering. The warmer weather’s even got me thinking about riding my bike again for the first time in eighteen months. All of this really feels magic, and I don’t take any of it for granted in the way I once did. I still have probably one or two ‘bad’ days a week, where I can do little more than just rest and wait for my energy to return, but this is in stark contrast to last year when the bad days were the norm, rather than the exception.
I wouldn’t say getting over chronic fatigue has ever felt easy, but it gets easier. It’s still frustrating to cancel arrangements and to miss opportunities, or to have to wait to do what you’d really like to do because you know your health isn’t up to it yet. You yearn to live a more active, normal life like many of the people around you. Most of the time though the negativity is outweighed by the knowledge that I’m improving, and by how wonderful it feels every time that I get out and spend time with people. I’ve always believed I’ll get better eventually, and the question of ‘when’ has faded away.
Chronic fatigue has been a brilliant, if sometimes brutal, teacher. Often the most valuable lessons are learnt in the hardest way, and I’m sure that the difficulties of the last year will be far outweighed by what they’ve taught me about how to live for many years to come. I’m thankful for this. I’d say that I’m now more self-aware, patient, tuned into the needs of my body and more accepting of how things play out. I’ve discovered that even on the extreme days when I’m so exhausted that leaving the sofa is a daunting expedition into the unknown, it’s still possible to feel a very profound sense of joy – perhaps in a song, or listening to the rain, or in a short moment of connection with someone. You can take strength from the fact that you didn’t shy away from the situation; you at least showed up.
Most of the learning has been psychological and spiritual. If getting into a chronic fatigue state is a consequence of our actions and behaviour, and those actions and behaviours results from our psychology (largely unconscious) then it follows that this is one of the keys to recovery. In my case, it was the drive to achieve and help others that burned me out. These aren’t necessarily bad, but they need to be tempered. Going a little further, many of our more harmful behaviours are triggered by fears buried deep in our unconscious. Bringing those up and working through them is not only valuable for recovery, but also for other areas of our lives. There are no dark corners in my mind anymore that I’m scared to explore, and I feel freer.
In addition, a lot of us are dreadful at paying attention to our bodies – I sure was. We’re stuck in our heads, and we listen to our minds at the almost total occlusion of the needs of our bodies. I can count on the fingers of one hand the people I know who really give their bodies a chance to rest when they’re unwell.
Spiritual practice is wonderful for various reasons. It helps keep us calm (stress is the enemy of recovery), aids us in tuning in to ourselves, and increases our sense of wellbeing – not least because I laugh at myself almost every time I attempt yoga. I have the flexibility of a door.
I believe we’d be much happier if we had a stronger spiritual, inner component to our lives. Generally, we’re so locked up in pursuing external goals that this gets neglected.
My mind is beginning to resemble what I imagine Homer Simpson’s must be like, so I’m going to tie this up.
Everyone’s experience of chronic fatigue differs in its symptoms, duration and severity. My experience is definitely on the more mild side and that, for me, is very saddening. I was very lucky in catching it early, and in the support/advice that was given to me. I’m lucky to even be able to write this.
For some, getting out of bed and dressing themselves is a good day. I rarely hear recovery stories shorter than about three or four years. I hear many stories where people have had this for decades and have no hope of getting better. I want to give all of those people a hug. It’s remarkably prevalent (estimated to affect over one million Americans), and I can’t overstate the extent that chronic fatigue can affect someone’s life – and the knock-on effect it has on those around them. Yet, it hardly gets talked about and most countries’ medical systems are in denial about there even being a physical component to it. This can’t change soon enough, and anyone with chronic fatigue can tell you what nonsense that is.
What’s stood out to me is how common it is in my generation and age group. It makes you think – why are so many of us burning out in our twenties? I wrote down some ideas on this a while ago, questioning whether this is largely a symptom of modern lifestyles. Research shows that these days we sleep more poorly than before – 42% of us rely on sleeping pills, we sleep on average 1.5 hours less a night than at the turn of 1900, and even when we are asleep we are too wired to enter deep REM sleep. We also work longer hours, are under more stress and consume more caffeine, all of which keeps us in a fight or flight state. Stress-related illnesses are on the rise, as are obesity and mental health issues. Our bodies collectively are creaking under the relentless demands of modern society. I’d posit that those in their 20s, attempting to carve out careers, pay off enormous debts, buy houses and go out partying several nights a week are getting hit hardest by this, but no one is immune. How many of you feel like you need a rest from life?
I’ve just ambushed you there with a depressing couple of paragraphs.
However, the reality of chronic fatigue is not cheery, and we shouldn’t shy away from that. Nor should we bury the positive messages that emerge from it. Recovery is possible – I’ve seen the evidence of that in a number of people. And if not recovery, then it can be managed. Gradually, research is shedding light on likely causes such as reduced mitochondrial activity and immune dysfunction. We’re finding out which alternative therapies work, how to plan our nutritional and what the best psychological strategies are. Plus, the way I’ve seen it give people courage, self-understanding and appreciation of life is quite remarkable.
I believe that we’ll get better at dealing with chronic fatigue, just as we have with other health conditions that were once much more stigmatised than they are today – like cancer or mental health issues. Society will only be better for it.
Parting words of wisdom? If you have chronic fatigue, keep holding on to those things that make life feel worthwhile, and be kind to yourself. If you know someone with the condition, go and show them you care.
Thanks very much for reading, you’re all wonderful. Now go give someone one of these!
I need to have a lie down…
I thought I’d post a couple of links to chronic fatigue-related stuff which can tell you a lot more than I can.
http://www.meassociation.org.uk/ – An organisation with heaps to offer those with chronic fatigue (or relatives/friends) – information, stories, a helpline, groups etc.
http://www.actionforme.org.uk/ – Similar to above!
http://www.freedomfromme.co.uk/ – Clinic which does great work with chronic fatigue and fibromyalgia
http://www.huffingtonpost.co.uk/2015/05/12/things-people-with-chronic-fatigue-want-you-to-know_n_7263604.html – Article on the Huffington Post acknowledging Chronic Fatigue Awareness Day
https://www.facebook.com/may12th.awareness – the Facebook page for Chronic Fatigue Awareness Day
http://www.michaelppowers.com/wisdom/rilke.html – The Man Watching, a poem by Rainer Maria Rilke about growing from our defeats, which I’ve found very inspiring (thanks Ben)