Let’s Talk: M.E. & Depression
Hindsight is a wonderful thing. When I look back now, I see that the clues were there all along really – weak immune system, easily tired, chronic pain – but, for all intents and purposes I was a completely fit and healthy person up until the age of around 27. Then it all seemed to go a bit wrong from there.
When I was 26, I was experiencing itchy feet and longed to work and live abroad for a while, so my boyfriend (who later became my husband) and I packed up and moved from north-west England to Milan, Italy. I got a job as a Teaching Assistant and loved every second. The children were wonderful, I made some fantastic friends and was enjoying all that Italian city life had to offer. My husband and I tried to pack in as much travelling as possible; I joined my local gym and bought a bike so I could start cycling around the city. In my second year in Milan, things began to take a turn. I found that I wasn’t able to keep the same pace as my friends – easily becoming run down and having constant cold symptoms. I had to start carefully pacing and managing my activities, to ensure I didn’t catch yet another cold or virus. For a while I put it down to some workplace stress I was experiencing, but then my symptoms took a more severe turn and I finally went to the doctor. After a few months of appointments and tests, I was diagnosed with endometriosis, a condition that affects 1 in 10 women. The specialist assured me it was nothing to worry about, it may involve some surgery in the future but for now could easily be treated with a hormone pill. Problem solved. And for a long while, it was.
Cut to two years later, and things had improved. My energy levels were better, I was still catching every bug going but I put that down to working in a classroom full of five-year-olds every day. In 2015 I decided to undertake a Postgraduate Certificate in Education to become a qualified classroom teacher. I was very lucky to be able to train at my current school, which meant less stress because I was already familiar with the children, the staff and the curriculum. It meant I would have to maintain my full-time Teaching Assistant job whilst completing my studies, but I was sure I could handle it. I had also recently got engaged and so would be planning my wedding as well as completing my PGCE. It was a lot, I knew that, but it was just for a year and my husband was incredibly supportive and happy to take on most of the wedding planning. I would be fine, I was sure.
The year turned out to be perhaps the hardest and most stressful of my life. I would be in work every morning for 7:30, working through my breaks and my lunch hour, staying until the cleaners kicked me out at 8pm and then going home and working until around 11pm, before collapsing into bed to do it all again the following day. Then on the weekends I would work from around 8am to 4pm, completing essays and research projects for my course. It’s not exactly surprising, therefore, that I quickly became extremely run down. I was constantly exhausted and under such a lot of mental pressure. I began with chronic throat and ear infections, which would linger for weeks and weeks despite any antibiotic the doctor would prescribe.
I completed my PCGE in June 2016 and my husband and I got married a month later. It all went off without a hitch (mostly) and although I was happy to be married, the overwhelming emotion was sheer relief that the academic year was over. My health wasn’t great, but I assumed that a summer of rest and relaxation would do the trick. Unfortunately, it didn’t make much of a difference. When people ask if I’m able to pinpoint a precise moment when M.E. began to rear its ugly head, I can say with some confidence that it all started in the autumn of 2016.
Fresh Start (Or so I Thought)
I was so excited for that September. I couldn’t wait to have my own class at last and was looking forward to getting to know them all. The only slight snag was that my endometriosis had started to cause problems again and so I had to undergo surgery at the start of September, which meant missing two weeks of school. It all went well, and I went back to work a week earlier than my doctor recommended. I wasn’t keen to miss any more time during those crucial early days of the school year and so went back before I was really ready. I told myself that I was young, fit and healthy and so would easily bounce back. From this point, my health began to deteriorate alarmingly quickly. I was experiencing quite severe fatigue, but I couldn’t seem to make anyone understand that it wasn’t just a case of ‘feeling tired’ but that every muscle in my body ached with an overwhelming weight that I could neither explain nor alleviate, no matter how hard I tried. Then came the chronic ear infections again, but this time so much more severe and painful than before. My doctor prescribed antibiotics but nothing seemed to work, and from October 2016 to March 2017 I was plagued with infection upon infection, eventually spreading from my ear and into my mastoid bone.
I was struggling, I knew that something was very wrong, but every blood test came back clear and my doctor had no explanation. I knew I needed to start pacing and managing my activities again but working in a school doesn’t really allow for that during the day. You’re going at 100 miles an hour from the minute you step into the building. Especially in your first year of teaching when you want to prove yourself and earn your professional stripes. After each new test came back with no answers, I began to tell myself it was all down to stress. This is what your first year of teaching must do to you, and perhaps it was just survival of the fittest. I began to question my ability to do the job, even though my dedication to my class never once wavered, despite my increasingly poor health.
Eventually it came to the point where work was the only thing I was managing to do. I was no longer well enough to cycle to work, so instead opted to drive. I would drag myself in each day, surviving on strong painkillers, coffee and adrenaline. Each night I would collapse into bed by around 6pm and would usually have to spend most of my weekends in bed, recovering just enough to enable me to get through the following week. I was no longer able to run, go to the gym or cycle. Most days I wasn’t even able to climb the two flights of stairs in my apartment building at the end of my working day. I was extremely sick, I knew this. Yet my doctors would continue to tell me that there was nothing they could do. I had spent a small fortune on extensive blood tests and specialists, but I was, on paper at least, in good health. So where did this leave me?
I dragged myself through the rest of the academic year, giving everything I had to my children, determined that whatever was happening to me would not affect the quality of dedication, love and support I gave to my job. When I finally got to the end of the year, I had come to the conclusion that I must simply be experiencing burnout. If my doctors couldn’t find anything wrong with me then surely there was nothing to find. I had, after all, just experienced two years of high pressure and stress, so I suppose it was only natural that my health would suffer. I assumed, naively, that a good rest during the summer holidays would set me right. I just needed to recharge my batteries and then I’d be fighting fit and raring to go.
I didn’t return to work that September, and I haven’t been back since.
Two years have passed since getting a formal diagnosis of M.E., and I am now living back in the north-west of England to be close to family and to access what little medical support is available for me here. I am now mostly housebound and rely on a wheelchair if I need to go anywhere that requires walking for more than five or ten minutes. I am too sick to work, but not quite sick enough to qualify for support from the government. My husband and my parents take care of me, because I am unable to perform most of the household tasks. I do have days that are better than others, and on these days I almost feel normal, but eventually my body will have to pay the price of debilitating pain and fatigue for having had some fun.
Two years on from my diagnosis there have been some improvements, but not enough to allow me to enter the normal world again. I long to get back to teaching, to run, to ride my bike, to climb another mountain, to start a family. To just live my life.
No doctors can tell me if or when this will ever happen.
Finding Light in the Darkness
It would be wrong of me to downplay the severity of this illness and the ways in which it affects my life. People need to understand the gravity of this condition. The last few years have been the hardest of my life, and there have been times where my mind has taken to me to some very dark places. I have suffered terrible bouts of depression, especially since giving up work, and I still have to work extremely hard not to let myself give in to these feelings.
I have actually been suffering with depression since before I got sick, but with the help of a wonderful counsellor I had made huge strides in dealing with this. As someone who has lived with both conditions, I think it is of the utmost importance that a clear distinction be made between M.E. and depression. M.E. is not a mental illness. There is some overlap of symptoms, but they are two distinctly different conditions. Unfortunately, so many healthcare professionals still work to the misconception that M.E. and depression are the same thing, and that some positive thinking and lifestyle changes is the answer to all your problems (FYI: that won’t cure depression either). Yes, many people with M.E. do suffer feelings of depression, but I challenge anyone to live with a debilitating chronic illness like this and to not feel depressed at times.
Living with this disease is hard. It is isolating and it takes so much from so many of us: our independence, our careers and financial security, our relationships and our family plans. That is to name but a few.
The sad truth remains, that while many charities and scientists are working hard on our behalf and making huge strides in research, there is still little help available to M.E. sufferers. We must, therefore, become our own advocates and take charge of our own care as best we can. Over time I have realised that while there may be little in the way of medical help for my physical symptoms, aside from pain management and pacing, there is much that I can do to protect and support my mental health as I learn to navigate my new life with M.E.
Supporting Mental Wellbeing – My Strategies
- Meditation or Yoga
While I know it has become a joke in chronic illness circles that people will always offer yoga or meditation as a cure for everything, I have actually found it to be an immensely helpful coping tool.
It’s not easy to get started and, as is the case when learning any new skill, it requires practice. I’ve tried different paid apps, such as Headspace, Calm and Stop, Breathe, Think, but there are also plenty of free guided meditations available on YouTube and Spotify. Taking time out of my day for short meditations really helps me to switch my ever-busy mind off, which has been invaluable in learning how to pace and stabilising my mood. I’m not for one minute suggesting that meditation is going to cure you, but I genuinely find it helps to calm my nervous system throughout the day, particularly when I’ve overdone things and my body has switched into that ‘fight or flight’ adrenaline mode that we hear so much about in M.E. patients.
However, I do find that there are times when I find that I am simply too restless or too worked up for meditation to be effective. This is where yoga comes in. The gentle movement means that my restless limbs get to use their pent-up energy without over-exerting, while the concentration on breathing helps to slow down my heart rate and calm my mind. There are literally millions of yoga tutorials available on YouTube nowadays, but my advice would be to do your research carefully. Look for routines that are specifically tailored for people with M.E. or CFS. Some of my favourites are Sleepy Santosha, Chakrapod and Yoga, My Bed and M.E. Each of these has routines tailored specifically to people with very low energy and strength. Most involve only sitting down postures, and some can be done lying down in bed.
I particularly like Yoga, My Bed and M.E. because Donna herself suffers from M.E., therefore is extremely knowledgeable about what types of movements are going to be helpful and which to avoid. It’s also important to know your own limits and avoid any movements that cause pain or elevate your heart rate. The idea is very gentle stretching to keep your muscles and joints moving, and breath work to help calm and relax you. It is important to stay well within your limits.
- Do a Good Deed
Managing life with a debilitating illness like M.E. can often be a full-time job. Every waking moment of the day is dedicated to pacing, symptom management, resting, taking meds, checking in with pain levels, and resting some more. If you’re also housebound like me, life can quickly become dull and lonely.
To combat this, I decided to look into volunteering opportunities that could be done from home and might be manageable for me. I came across a charity that supports older people suffering from loneliness. The role involved committing to a 20–30-minute phone call each week, something I felt was manageable within my energy limits. After an interview and some online training, I was matched with a wonderful lady with whom I share a lot of interests. Just 20 minutes of my week spent focusing on someone else, on something else other than M.E., felt like a gift. Not only that, it gave me a sense of purpose again and made me feel I was doing something worthwhile.
As is always the case for people with M.E., it is crucial that you only undertake something like this if it is going to be manageable for you. If it’s going to make your symptoms worse or tire you out too much, it isn’t worth it. I know that many people with severe M.E. would not be able to tolerate a conversation of that length, or even hold up the phone for that long. Try to think of other ways you could do a good deed within the limits of your energy. There are lots of charities that offer befriending roles through letter writing, for example.
For me personally, I get such a warm, fuzzy feeling from doing something nice for someone else. Despite everything the world has thrown at me lately, making the effort to spread a little kindness out into the world feels like taking back a little power.
- It’s Good to Talk
I know that for people with M.E., socialising is an extremely high-energy activity that requires careful symptom and time management and often leaves us feeling completely wiped. Especially for those who suffer with severe M.E., for whom socialising is often completely out of the question. It’s no surprise, therefore, that so many sufferers report feeling lonely and isolated since becoming ill.
This means that many people with M.E. and other debilitating conditions often turn to social media to socialise and keep up to date with friends. It took me a long time to be comfortable and brave enough to share details of my illness online, and I know that social media can often be a toxic environment that has to be carefully managed. Having said that, I can honestly say that nothing has been quite so therapeutic, so encouraging and so helpful as getting online and connecting with the chronic illness community.
By engaging with fellow M.E. sufferers online, I found a community of kind, interesting and supportive people who truly understand what I’m going through. I’ve had my eyes opened to issues surrounding chronic illness and disability that I was previously ignorant of and I continue to learn from members of this wonderful, inclusive community. I know that not everyone is comfortable with sharing personal aspects of their lives online but I assure you that for every new symptom, worry or frustration you may experience on this journey, there are so many people within the online community who can relate, who will listen and are ready to hold you up and support you, or at least share photos of their pets to cheer you up.
In a community of people who suffer pain, ill health and marginalisation daily, there is so much warmth, humour and kindness to be found. It makes you feel part of something worthwhile and makes it that bit easier to face each day. You might like to follow my Cream Crackered Blog or join my social media communities.
Finally, I want to say that it’s vitally important that we learn to talk about mental health as openly as many of us do about our physical health. Loss of health is a form of trauma. Living every day fatigued, in pain, housebound or bedridden, takes its toll on your mind. It’s normal to feel sad, angry, resentful, bitter. While I think it’s important to allow yourself the space to feel these emotions, it is just as important not to let yourself stay there for too long. If you or someone you know are feeling emotionally distressed, please take a moment to read Emotional Distress: Information & Support by Louise Sargent.
As wise old Dumbledore once said: ‘Happiness can be found in the darkest of places, if only one remembers to turn on the light.’