My Chilli ME Challenge

Hello everyone,

Yesterday I decided to take one for the team and ate a Scotch Bonnet chilli pepper to raise biomedical research funds for Myalgic Encephalomyelitis (M.E.) / Chronic Fatigue Syndrome (CFS). Four brave women and fellow M.E. sufferers came up with this challenge, inspired by the success of the ALS Ice Bucket Challenge, to raise awareness and much needed funding for this horrible disease.

To take the Chilli M.E. Challenge:

1. Eat spicy pepper or hot sauce (have milk ready)
2. Film your funny REACTION (don’t cut off the reaction!)
3. Dedicate it to an M.E. sufferer
4. Nominate 5 others
(Can’t eat a pepper? Make a “My M.E. Story for ‪#‎chilliMEchallenge‬” video simply stating M.E. is not psychological and is neurological and/or tell your own M.E. story.)
5. Upload video on social media using hash tag #chilliMEchallenge
6. Donate to M.E. research:

(To Donate:
Ireland text HOT to 50300(€4)
UK text CMEC73 to 70070(£4)
USA & elsewhere www.gofundme.com/chillimechallenge)

*Info &FAQ: www.chillimechallenge.wordpress.com
*Twitter: @MECFS_challenge
*YouTube channel:https://www.youtube.com/channel/UCMRgz7F5tRba8VRhLqF3Vvg

Just remember to choose your poison wisely! (I wouldn’t recommend eating a Scotch Bonnet pepper, for reasons I won’t go into). As it says, if you are an M.E. patient not well enough to take the challenge, nominate someone on your behalf, and consider sharing your #myMEstory instead. Without further ado, here is my video. Enjoy, please share & don’t forget to donate!

Am I in need of a media detox?

My name is Simone and I’m a media addict. But so are all of you. In recent times, I have seen the idea of taking a ‘media detox’ become popular within the context of mental health. I began to think to myself, what does technology, particularly social media, really do for me? How, if it all, does it enrich my life? Or is it simple a negative influence? I want to explore the positive and negative influences of the Internet on my life. I think technology is important, even essential to living, these days, so I want to be able to use technology in a way that it benefits me and enhances my life. At the same time, I don’t want to waste my limited energy surfing the net.

I use social media to keep in touch with friends and family around the world, for which it has proven indispensable. I am able to bridge gaps between continents and still feel connected despite the distance. Sometimes though, Facebook gets me down. I think this is for the simple reason that it encourages comparison and peer pressure, by feeding you a constant stream of highlights from the lives of your friends. It is rare that someone will disclose personal problems online ̶ we all like to look our best on Facebook, so will only put up photos of ourselves looking healthy, happy and attractive. In this way, Facebook can be seen as a personal marketing tool which advertises our best features to either potential partners or our equals, thus fostering competition. During my latest bad patch with my health, I was in very low spirits and did not want to be reminded of what a great, fun time everyone else was having, so I disabled my account. Half an hour later, my sister was on the phone to me explaining to me why this would not be wise. She said I would only be isolating myself further, and she was right. While Facebook can dampen my spirits sometimes, when I do hear from a friend or reach out to someone, I feel a lot better. Although my Facebook newsfeed can sometimes be difficult to swallow, I am working on feeling joy in other’s experience of life, so it is an ideal test.

I also use technology to research into my current health issues, which has its pros and cons. We have all come to drastic conclusions googling our symptoms, so of course we should take our findings with a pinch of salt, especially if they come from a disreputable source (e.g. a blog or Wikipedia page). At the same time, the internet has been an indispensable tool in finding support for my mysterious illness. While it is usually not advised to try and diagnose yourself, with the myriad of fluctuating and individual symptoms that ME can entail, you are forced to become an expert on your condition. Through reading articles on respected websites, I have learnt so much about my illness, and now know far more then my doctor. As there is so little help or advice offered to ME sufferers by general practitioners, we have to look elsewhere for the support we need. I have found this on online support groups, forums, blogs and non-for-profit websites. Here you can find emotional and practical support, reviews of tried and tested treatments, including controversial or alternative treatments. You can also find horror stories. While there are many positive and reassuring people out there, they are many who are depressed and despairing about their illness. Thus I find Facebook support groups can be a drain as much as a life source. I recently opened a Twitter account which I am using for ME advocacy, because like many ME patients, I am fed up of being ignored by the medical industry. In a way, it makes me feel productive, and like I am actually doing something towards getting better from my illness. In other ways, it reiterates the harsh reality of the intense suffering a lot of ME patients are experiencing and the frustration of so many that have this invisible and apparently insignificant illness. So again, it’s a double-sided coin.

When it comes to technology, what I am really curious about is how use or abuse of it affects my mental health and overall feeling of well-being. I finally succumbed to buying a smartphone a few months ago, and now receive notifications from Twitter, Facebook and Gmail every 10 minutes. I find this highly intrusive, but cannot seem to turn it off. Even if my phone is on silent it still vibrates and flashes. For someone suffering from anxiety, this is clearly damaging. I am trying to learn to be more mindful and practice meditation, but I feel that technology is counteracting my efforts. I have read about the effects of receiving a message on the reward system of our brains. Every time our phone buzzes the reward system of our brains is activated, which is also what happens when we eat something sweet. If I think about training my dog, I gave him treats for good behaviour, so he soon learned that certain actions would bring him an instant reward. I equivocate this with our relationship with internet media. We have learned that checking our phone as soon as it demands our attention will bring us a reward. I definitely relate to the idea of a ‘media binge’. We become hypnotized by our screens and hours can go by without us noticing. It’s the same as going through a whole packet of cookies to yourself. Only when we feel like we have sated our hunger, do we relent. I am also aware that if I used technology just before I go to sleep, it takes a lot more time for my brain to shut down and allow sleep in. We’ve been told that the screen’s blue light can disturb our REM sleep patterns. We know all this, but still obediently check our Emails before bed. After opening my Twitter account a few weeks ago, I realized that using it was making me tense, which puzzled me. Having read an article in Psychologies Magazine however, which spoke of the simple magnitude of information available to us on the internet, I realized was getting to me. I am curious by nature, so Twitter must have highlighted to me how many unread articles there are out there; how much information there still is left for me to discover. It seems silly, but it’s the truth. I am simply overwhelmed by the infinity of this resource. But as the article pointed out, this information would take more than a lifetime to go through.

Right now I feel that my technology has a hold on me, when I should be the one in control. I think I need to implement some sort of media diet. Perhaps this means turning my phone of altogether and only checking it at certain times of the day. I’m sure my mind would feel a lot better and less cluttered for it. I also need to find a way of filtering out the information that is relevant and beneficial to me, so I can avoid oversaturating my intelligence. Cutting down on technology use is not dissimilar to cutting down on sugar, alcohol or cigarettes. It’s difficult but with discipline, it can be done. Instead of snacking on media all day, I’m going to attempt a healthier, more balanced diet.

Wish me luck! 🙂

A day in the life of an ME sufferer

Before I begin, let me briefly explain my situation. According to my functionality, I rate myself as a ‘moderate’ ME sufferer. Until recently I was a ‘mild’ sufferer, having recovered sufficiently from 3 years of Post Viral Fatigue Syndrome/Chronic Fatigue Syndrome resulting from a bad bout of glandular fever. Last October, following a period of travelling in Africa, I received a Hepatitis B booster vaccination. My body and immune system reacted severely, and my condition deteriorated rapidly and significantly, to the point where I was forced to leave my job and move back in with my parents. How long it will be before I can resume my life, I don’t know. My days are now much of a muchness. Let me paint you a picture.

I wake up in the morning with a groan, groggy and disoriented. I open my eyes a fraction and shut them promptly against the piercing daylight. I used to be a morning person, who eagerly leapt out of bed to harness the day. Now I wake up each day with a head like someone badly hungover (I have found this to be the best way describe it to non-ME sufferers). My limbs are far stiffer than they should be for someone my age, and I shuffle slowly into the kitchen. I am so sensitive to noise at this time of day that I cannot bear the sound of my mother preparing breakfast, or the morning traffic outside the window. After a breakfast of mainly nuts and seeds (I am on a strict diet, purely energy foods and no sugar) I may read a little until a wave of fatigue hits me – my body’s latest trick. Even though I have already had 9 or 10 hours’ sleep, this seems my body’s way of telling me it has not quite finished in bed. If I ignore its plea, I will suffer a severe headache all morning. So I go with it. By midday, after 2 or 3 hours surplus sleep, my body finally seems to wake up. This is the best time for me mentally, thus one of the only windows I can use to do anything requiring concentration, such as online banking or at the moment, French homework for a distance-learning course I am taking. I require total silence to focus as my illness causes me significant difficulties with concentration. Multi-tasking is a thing of the past. This is the only time of day that I dedicate to important tasks, as I must avoid stress at all costs. The adrenaline produced by the body when under stress is like poison to an ME sufferer. One day of stress and I’ll wake up the next with that  particular kind of headache which means I’ll be in bed until further notice, usually accompanied by floppy limbs and ringing in my ears.

Next I get dressed, eat lunch and go out for my early afternoon stroll. We live in a small town in the middle of the Essex countryside, so there are many green places accessible by car. It is part of my recovery plan to do a little ‘exercise’ every day. I hesitate to call it exercise as I walk so slowly that I often wonder if my body benefits at all. The irony of putting on state of the art hiking boots and then shuffling along at a snails’ pace. If not exactly making me fit, at least moving my body stops my joints from seizing up and my leg muscles from deconditioning further. It is also important for me mentally to get out of the house. The distance and intensity of these walks has been trial and error. Several times we have been overambitious and I have ending up having to wait for one of my parents to go back and get the car to pick me up. On one embarrassing occasion, they even had to carry me up a hill. Hills are a no-go, as for me they’re the equivalent to climbing up a mountain. After a few miles’ of walking interspersed with sitting on benches, I am exhausted and it’s time to go. I conk out in the backseat of the car on the way home, and once we are back, climb into bed for my second nap of the day. This afternoon nap is essential, first and foremost to allow me to recover from my trip out. It also helps me recharge for the second part of my day, the evening.

Unlike most 27-year-olds, I now spend every evening – including weekends – in with my 60-year-old parents. My soul sighs as I ask if there’s anything on television tonight. Next comes the battle with the television’s volume. If it is over a certain threshold, it hurts my head. Understandably, my obsession with sound drives everyone else insane. But I can’t help it: sensory overload is a defining symptom of ME, severe cases having to live in the dark wearing sunglasses and ear defenders. Television drains my energy, and often I can’t stand the combination of the bright screen and the sound, but there are not a lot of other evening activities available to me. I can usually only watch it for one or two hours before retreating to my bedroom. Sometimes I have a bath in the evenings, but the heat often drains my body and knocks me out even more. If I have the energy, I do a 15 minute yoga routine before bed. It usually takes me quite a while to fall asleep, which I put down to my anxiety and sleeping too much during the day (though it’s not like I have a choice in the matter). If I have exerted myself too much during the day, for instance walked too far, I wake up in the small hours with aching legs and ankles. They are so tender that I have to soothe the inflammation with cold gel, and prop them up on a cushion in bed.

I’ve calculated that I am actually only conscious for 11 hours a day, which is far less that a healthy person (most people get 8 hours’ sleep, leaving them 16 more to play with). My eye mask has become my best friend, but I hate my bed. For ME sufferers, it becomes their prison. I often lie there, wishing I was capable of doing something else. There is so much I could achieve during the time that I spend in bed. I tell myself resting is an investment for my future self. But because of my intolerance of any noise, I am confined to my bedroom even more than necessary. I have also lost a lot of independence as I am afraid to go out by myself. I don’t know if this is due to my becoming too dependent on my parents since I moved back home, or because of the feeling of vulnerability that is an inevitable part of going out in public with a disabling and yet invisible illness, or because I am experiencing culture shock, having lived abroad for so long. I think it is a mixture of all three. It does seem ridiculous to someone who has been living alone, however, and travelled extensively, to now be scared to walk down the street or get on a bus! I certainly feel that the isolation I face, especially when housebound due to a flare-up, leads me to become mildly agoraphobic. Going out, I also have to consider my constant need to sit or lie down, which is not easily met unless you know the exact location of every bench. It is difficult being bumped and shoved past and generally not being treated with the respect that someone with a visible disability would be given. How can I for instance ask for a seat on a bus, when I look like the picture of health?

Disability vs Invisibility

One of the main characteristics of autoimmune diseases is their ‘invisibility’. It can be difficult for the sufferer when how they are feeling on the inside is not projected to the outside world. Personally, I have felt a lot of frustration towards those who did not appear to understand or sympathize with my condition, and am only now beginning to accept that some never will, and that that’s ok.

We hold some fundamental misconceptions about biological illness. For instance, we expect to see an emaciated body, total immobility, even drips and feeding tubes. Rosy cheeks, shiny hair and a healthy weight generally do not indicate ill health. So when someone who looks healthy claims they are ill, even medical professionals can label the symptoms as psychological, psychosomatic or just hypochondria. As a result, those suffering from a chronic ‘invisible illness’ are constantly having to justify their sickness to others.

Only the sufferer can truly comprehend the nature of their condition. This is why I forgive those who can’t, or refuse to understand. They cannot accept the contradiction of my illness. And I understand THEM. Because if I put myself in their shoes, would I be able to accept my illness? There is nothing to see! Most of the time I look fine. Furthermore, the occasions on which I venture out to see friends and acquaintances are always on my good days. People don’t see the other side to my illness; the hours spent lying in bed with migraines and body aches, hiding from the light and sound.

What’s more, as many illnesses are only temporary, it is hard for people to grasp when the illness does not go away even after a substantial amount of time has passed. Friends often leave me alone to ‘recover’ for a few weeks once I have proclaimed myself ill, before contacting me again to ask ‘How are you feeling?’ This questions demands only one response: I am feeling better. But since I don’t feel better, I do not know how to respond and often end up avoiding the question altogether. To the sick person, it feel like pressure to be well. Furthermore, many common illnesses are treatable, either by over the counter meds or specialist treatment. Friends and family generally want to offer advice, so may suggest remedies or treatments that you either have already tried or know won’t work for you. Though they mean well, the fact that you are so blasé about treatment options may seem to them like you are not trying hard enough to get better, but it’s only because you know there is no quick fix for your illness. On the other hand, there are also stigmas surrounding illness: some people prefer not to talk about it. I have again been a culprit of this, trying to mask my illness and pretend that everything was fine.

These misconceptions have played a large part in my personal struggle with my condition, as I was prey to them myself at first. It took me a long time to accept that a) my illness will not just go away and b) there is no miracle cure. If it took me so long to come to terms with these realities, then how on Earth can I expect others to? The only way to help loved ones to understand is through communicating your needs to them and educating them about your condition. However, some people may never understand, and that’s ok. It’s also ok to ask those that are willing for help. Whether or not is manifests itself externally, you know internally that you are sick and must seek the support you need.

Together we can fight the stigma of invisible illness!

ME/CFS: what you CAN do

Warning: I’m not a doctor, these suggestions are simply based on my personal experience, advice I’ve received and personal research.

I don’t know how some people get better from ME. I wish I did. But I’m pretty sure I’ve figured out you can get worse, and what you need to do to improve your mental, emotional and even physical state. Because CFS is an illness that affects the mind and body equally, I feel it should be treated as such. A lot of dealing with this condition appears to be common sense and discipline. Since there is a lack of reliable medical knowledge available, we must become experts on our own condition. The sooner you break away from traditional view that “my doctor/these meds will fix me” the better. You must accept that a holistic approach is the only way that your condition will improve. Read and talk to as many people as possible. Listen to your body and document how it reacts and where it is sensitive. Be willing to try anything, as long as it is realistic and within your means and limitations to do so. One of the best pieces of advice I received was to “Be your own doctor”. I would interpret this as being kind to yourself, treating your symptoms as far as possible and respecting your limits. Above all, have hope! Even though with ME/CFS it can often seem like you take one step forward, and two steps back, the illness is usually not progressive so it is likely that you are improving, even though it may be so gradual that it may be unnoticeable at first!

Avoid the boom & bust cycle

Overexertion is clearly counter-productive for those with ME/CFS. Don’t find yourself running on empty – it’s essential to rest and recharge. Stop before you are tired and do not push yourself – figure out what your limits are and stay within them. Put as much on hold as possible and delegate tasks if you can. You must learn to avoid the boom and bust cycle as this will not help your body to heal and may even cause your condition to deteriorate.

Avoid putting unnecessary strain on your immune system

If you can, I would recommend undertaking a full health check to see if there is are any underlying health issues that may be exacerbating your ME/CFS. Of course I know not all GPs will be willing, so you must be assertive or if you are able, go private. Sufferers of ME/CFS are prone to developing food or other allergies and nutritional deficiencies, which should be tested for. In my own case, I discovered I had chronic anaemia, which may have been contributing to my fatigue, so am now taking regular iron supplements. Furthermore, a fructose malabsorption was detected, a condition that was preventing my body from absorbing valuable nutrients and placing a strain on my immune system. I must now avoid sugar and fruit for the most part and have also had to address digestive disturbances caused by my IBS (irritable bowel syndrome), by logging what foods tend to upset my stomach.

In the meantime, do as much as you can to support your immune system naturally. Again, this means using common sense. Get as much fresh air and sunlight as possible, and avoid becoming chilled by making a habit of overdressing. If you are able, move to a warmer climate! If not, try regular trips to the sauna or steam room, depending on what your body can handle (the heat of the sauna is too much for me). There is no need to buy expensive products claiming to boost your immune system (which according to a study by Harvard University, may not even be scientifically viable) if you adopt a healthy diet and lifestyle. Raw fruit and vegetables and an overall healthy diet will give you essential vitamins. My doctor also recommended I take zinc, vitamin C and cod liver oil supplements. Since these are reasonably priced and widely available I decided there was no harm in boosting my nutrient intake.

With regard to diet, people with ME/CFS should cut down on sugar, white carbs and anything with “empty calories”. We need slow-burning, low GI food that gives us as much energy as possible, such as oats and whole wheat. The Food Doctor has a lot of great tips and recipes for creating a diet low in sugar and high in slow-burning foods. Drink filtered water so that your body does not have to deal with any additives in your tap water. Replace coffee and black tea with green and herbal teas. You can still get your caffeine fix from green tea. Herbal teas can also help alleviate symptoms: camomile or St John’s Wort are calming, valerian root and lavender help with sleep, ginger and lemongrass give you energy. I also drink blends of aniseed and peppermint to help with digestion and hibiscus for a sore throat. Yogi Tea and Pukka have a huge selection of teas with various health benefits.

Keep moving

To prevent your joints from seizing up and your muscles from deconditioning, it is vital for your body to remain mobile. It only takes 12 hours for your muscles to start to decondition – that fact is enough to get me off my bum! With ME/CFS, I have found it all too easy to become glued to the sofa and/or bed. However, I always feel the benefits of making an effort to go outside and even for a small walk when I didn’t feel like it. Leaving the house and getting the fresh air and sunlight on your face is also important for your mental health. Try to move your body in some way every day. Yoga and stretching are ideal anaerobic exercise that can help strengthen your muscles. If your body feels rusted up from lying around, try a short stretching session. You don’t have to attend a course, as there are plenty of yoga CDs or Youtube videos available. Look for yoga poses specifically for relaxation, stress and for strengthening the leg and arm muscles. Energizing yoga poses can help with brain fog, but remember not to push yourself. For some us, even standing up for sustained periods of time can be challenging, so slowly build up to remaining upright for 5 to 10 minutes at a time. Find an activity you can do standing, such as watching TV.

For many people with ME/CFS, pacing is a godsend, as if harnessed it can allow sufferers to regain some control of their illness. Pacing can help you take advantage of your limited energy supply by using it wisely. This includes working pre-emptive rest and scheduled rests into your day. Limiting activities (e.g. only spending 30 minutes on the computer at a time) has also proven helpful, as has switching from high-intensity tasks such as cooking to low-intensity tasks like reading. You can use a weekly or daily schedule, reminders, timers and whatever else you need to discipline yourself (get creative!) Pedometers are a great tool for pacing, as they enable you to establish a baseline, or a distance you can walk even on a bad day, and go from there. The CFIDS website has a lot of good information and tips for pacing, and offers online courses to help to implement it. Hopefully adopting some of these strategies will help your energy go further and allow you to slowly build up strength. I advise you to take baby steps and celebrate each small achievement!

Deal with any psychological issues

Over-production of adrenaline will zap your mental and physical energy, so managing psychological issues that may accompany the illness such as anxiety and depression is crucial. Try to minimize stresses in your life by staying away from people who are unsupportive and surrounding yourself with positivity as well as your loved ones. Confront situations or tasks that you have been putting off so that they are no longer weighing on you. Learning to relax (see below) is also important. Some people find writing their thoughts down in a journal to be very cathartic. Alternatively, talking about your experience with someone other than your family, such as a psychotherapist, can be very helpful. Ask your doctor about Cognitive Behavioural Therapy (CBT), which can help you deal with negative thoughts. Anti-depressants may be prescribed to you as well, which have the added benefit of helping with CFS-related sleep disturbances (particularly Amitriptyline).

Learn to relax

Anxiety and the “tired but wired” feeling, along with sleeping too much during the day make it difficult for ME/CFS sufferers to get a good night’s sleep. As mentioned above, you may need to take medication to help with your insomnia. Otherwise, adopting good sleep hygiene habits can be helpful. For instance, try to limit your naps during the day by setting an alarm. While it is evident that people with CFS need extra rest, you can learn to control when and for how long you nap. Instead of napping as a result of exertion, trying taking scheduled rests, e.g. 30 min mid-morning and another 30 min in the afternoon. Maintain regular bed- and wakeup times. Furthermore you should switch off all technology an hour before bed and trying reading instead, to calm an active mind. A gentle massage will relax your whole body, while taking a bath before bed with essential oils can also help you sleep. Aromatherapy is a fantastic tool. You can get a cheap oil burner and blend 100% essential oils such as lavender, eucalyptus and pine. I recently invested in a Soto oil diffuser, which only needs to be turned on for 20 minutes for the oil to be diffused in the room. Another great help is learning how to relax your mind using mindfulness, meditation (See my post 3 Myths About Meditation Busted) or hypnosis.

Keep a check on your emotions

It is essential to build up a support network of people who you trust who can help satisfy your emotional needs. Being chronically ill is an emotional rollercoaster, and having pillars of support will feel like a crutch during the worst times. It is also vital to educate those closest to you on your condition and be able to communicate your needs. If someone is not understanding and creating extra stress, try talking to them again. Reach out and connect with people who may be able to help, whether it be family and friends, professionals or (online) support groups. Know that it’s ok to ask for help, or ask friends to visit you if it is difficult for you to go to them. Often we are afraid to ask for support and think people will not be willing to give it. But if you try, you will be surprised. Don’t be ashamed or hide your illness either. Most people have hardships in their lives, even if they are of a different kind. Don’t be afraid to say no or miss out. Although it’s hard, remember there will always be other parties, weddings and office dos. You may be worried that cancelling on people will cause you to lose friends, but remember that the truest friends will stay with you no matter what happens in your life. Being ill, you may even cultivate new friendships in places and with people who you would never expect.

Psychotherapy or CBT can help you to accept the limits of your illness and alleviate negative emotions that stem from feeling helpless and lacking control of the situation. Focus on what you can still do rather than what you can’t, and try to focus on BEING rather than doing. Start living rather than living in wait of getting better, a mistake I have made and am now rectifying, as we do not know when or if that may happen. As humans we need to feel fulfilled, connect with others, feel loved and have a sense of purpose in our lives. You must learn to be creative within your limitations. Your condition may lead you to pick up new or forgotten hobbies that give you pleasure and suit your circumstances. Accept that this is one of the hardest things you will have to endure in your life and step up to the challenge – remember that no experience is wasted. Maintaining a positive mind-set can be easier said than done (see my post The Positivity Mandate) but it can be cultivated over time. With help, you can become emotionally self-sufficient and begin to treat yourself with empathy and compassion rather than being in a constant battle with your condition. Practice speaking to yourself in a kinder voice, for example telling yourself “It’s ok to be sick.” Try to maintain a realistic perspective too, by remembering that there are always in a worse position than yourself. If you are physically able, volunteering with the aged, severely disabled or homeless people could help you practice kindness and change your outlook.

Our lives may feel a lot smaller as a result of our condition. But ennui and a quiet life can have its blessings. You may learn to appreciate and notice the smaller things in life such as the changing seasons, a bird’s song, a child laughing… It may sound corny but I have begun to find joy in my surroundings instead of wishing I was elsewhere. To help cultivate gratitude for what we still have in our lives, I recommend keeping a gratitude journal, in which you write 5 things per day for which you are grateful. I guarantee that this practice will open your eyes to the abundance in your life.

Personally, I also find inspiration from quotes so I have a collection of the best ones pasted on my wall.

Take advantage of any treatment available to you

The NHS has 13 ME/CFS treatment clinics, offering CBT, occupational therapy and Graded Exercise Therapy. You can find more information about ME services in your area on the ME Association website.

Here is some information on treatments recommended by the NHS.

Good luck!!

A Poem

Here is a poem I wrote to describe the sensations and emotional whirlwind of my illness. CFS/ME is very difficult to convey to those who have never experienced it. It has even been nicknamed “The Invisible Illness” as symptoms are felt inwardly and the appearance of a sufferer will remain unchanged.

I wrote this piece while in the depths of an ME crash, which can be very scary and isolating place to be. I wanted to portray the helpless feeling of being trapped inside a body that is not functioning as it should.

Prisoner

Heaviness.

So heavy, like lead.

An invisible force takes hold,

Dragging me down till I can stand no more.

A dull ache begins in my head,

And, as though a switch has been flicked,

I am plunged into darkness.

 

As in a cave,

I shrink away from the world,

Sucked under by a blanket of fatigue.

My bed; once my comfort, now my prison,

Its bars recall a cell.

 

There I lie, my limbs sore from idleness;

They are not needed, now.

Nor is my mind,

For it can no longer think.

I simply exist;

A small, unheard voice deep within

A lump of flesh, bone and duvet covers.

Waiting, and hoping for release.

 

Alone in my room,

Time stands still.

The only thing in perpetual motion

Is my mind.

As I lie there, bound by invisible chains,

Evil pulsing through my veins,

I wonder what crime has led me to this imprisonment.

 

Isolation overcomes,

Evoking that of birth, of death,

As nothing matters now but to exist.

 

In my bed I remain and progress

From bad to worse,

From worse to better again;

The relentless cycle.

Until finally,

I am ready to face the light outside.

 

Venturing out the door

I stand, blinking like a newborn,

Startled by the day.

I take my first steps,

On buckling legs,

And shuffle down the street;

A young woman, now old.

 

I notice that while I’ve been sleeping,

The world has carried on turning

At a far greater speed,

And I wonder if I can catch up.

 

Out here I am an invalid

Without a licence to be ill.

 

‘You look fine’, they say;

Who’d blame them?

When there’s nothing to see.

So I put on a brave face

And pretend,

All the while alone in my sickness.

 

Until it’s time to retreat once again,

To the safety of my bed.

 

 

Welcome (again)!

Hello everyone,

I started this blog a year ago, under the original title “My Pursuit of Happiness: The Search for Happiness in an Unhappy World”. It has since been on hiatus due to some developments in my personal life. Although I will continue with the themes of mental health and achieving contentment in life, recent difficulties lead me to take this blog in a new direction.

For the past six months I have been struggling with bad relapse of my CFS/ME illness, which has severely limited me and forced me to put my life on hold and move back in with my parents for the time being. I therefore want to use the outlet of writing to share this unique experience, and to explore how human suffering can help us to develop. I have been fortunate enough to have a valuable spiritual mentor during this time, who has help me to harness the power of meditation.

As CFS/ME is as much a psychological as a physical struggle, I want to look at ways in which we can deal with physical limitations by maintaining perspective and philosophical outlook, as well as exploring creativity and spirituality, and thus healing our minds. This will in no way be a space for me to mull over my situation or cry for help, but rather a platform on which to gather strength and hopefully share what I have learned with others, and vice versa.

Welcome to all!

Overcoming Illness

 

Depression is a temporary state, though for some of us we are prone to it reoccurring throughout our lives. Whether is it brought on by circumstances, genetic disposition or a combination of these, we should never look at it as something that we are stuck with and powerless against. We all have the capacity to overcome our depression.

While for those of us with hereditary depression, it certainly does not feel like a blessing, I think it is important to look at the rest of the picture. We would not be the same people without our illness. For instance most of the world’s greatest thinkers, writers, philosophers, inventors and artists have had what I prefer to refer to as an ‘artistic temperament’. Spontaneity, creativity and sensitivity often go hand in hand with this state of mind. So would we give up some of the best parts of our character in order to be ‘normal’?

 

Everything great that we know has come from neurotics. Never will the world be aware of how much it owes to them, nor above all what they have suffered in order to bestow their gifts on it.

–Marcel Proust

 

Like anyone with a chronic illness, we must learn to live with our depressive tendencies as best we can and avoid aggravating them. As depressives are commonly prone to alcohol and drug dependency or other addictions, we must purposely handle these things with great care or stay away from them completely. Likewise, we must try to steer clear of situations and people that cause us distress and the inevitable worsening of our symptoms. Of course, this is all easier said than done. But my point here is that if we listen carefully to our bodies and instincts, we do in fact know what is best for us.

I’m going to talk briefly about my experience of overcoming illness. My anxiety originally came on during a bad bout of glandular fever, where I was bed-bound for 3 months. I felt as though my life was falling apart in front of my eyes as I was lying there, powerless to stop it. What’s more, I was left with Chronic Fatigue Syndrome (CFS), a.k.a. Post-Viral Fatigue or Myalgic Encephalomyelitis (ME). Whatever you choose to call it, this is an illness that zaps all your energy; the best way I can think to describe it is I felt like my battery ran down very quickly and needed constant recharging. CFS affects not only your physical, but your mental state. Among the symptoms were brain fog, short-term memory loss and constant dull headaches, all which contributed to the overriding feeling that you have gone senile. I was no longer able to exercise and it was often hard to get out of bed or wake up in the morning. I felt I could no longer handle anything; even going back to work part-time was a tremendous effort as attempting to concentrate on anything for long periods of time was difficult. I suffered from constant mysterious infections and low-grade fevers. The worst aspect of the illness, however, was that it was invisible. This made it hard to get people to understand let alone sympathize, when they could not see nor imagine what you were going through. As the research on this illness is fairly limited and many doctors do not even recognize it, I gave up trying to explain my symptoms to various doctors and their implications that it was all in my head fostered my intense loneliness. The length of CFS is also varies from person to person, so I had no idea if I’d be stuck with it for anything from a year to 10 years! As my health seemed to go through good and bad patches, I also lived in constant fear of a relapse. I was unable to attend as many social events as before and often had to cancel last-minute due to sickness. Some weekends I was too weak to clean the flat or do the shopping. I missed a lot of work and again had to invent and vary the reasons for this.

Overall, what I am describing here is a period of absolute hell in my life, which, after 2 years, I have miraculously almost gotten over. I’d say this was mainly down to my mindset. I read as much literature as I could on the illness, found a lot of helpful tips from other sufferers on online forums and tried everything they suggested. I also convinced myself that I would get over the illness.

Just like depression, different things work for different people and you have to find out what works for you. This involves spending some time, money and effort in a therapy to see if it yields anything. I disciplined myself as much exercise as my physical state allowed (as recommended, I only gave 80% and stopped before I was totally exhausted), cut sugar out of my diet to prevent energy dips and ate foods that gave me long-lasting energy. I took a course of nutritional supplements, an alternative therapy that had been reported as the most successful treatment for CFS and has been the most helpful one for me. I set myself goals and got over my CFS-induced avoidance of physical exertion; eventually on the good days I was able to get back on my bike. My friends and family were supportive, although like everyone else they found it hard to put themselves in my shoes or to offer any advice. Therefore it was all up to me. Just when I was finally back into full-time work and had reached an estimated 70% mark in terms of improvement, I had another setback; I lost my job, and it wasn’t the first time since being ill. The previous summer I had been fired from my job as an invigilator in a museum for not having turned up for two shifts. I had confused the days and times and put it down to my altered mental state; I would not normally have been so absent-minded. The second redundancy was due to differences with my boss but also his lack of understanding about my illness. I had been employed at a fast-paced, busy start-up for a boss who was full of beans and on drugs most of the time. He expected the rest of the staff to be as dedicated to his dream as he was, which meant extra hours and basically working yourself into the ground. Of course I did not have the stamina, and was looked down on by him for working within the hours stated in my contract. Trying to keep up ultimately led to a complete burnout and loss of all motivation.

Jobless again, confused and at a loss of what to do next, I made what seemed to my family and friends the illogical decision to spend the last of my savings on flying to Africa to embark in a 6-month volunteering project in Sudan. It had always been my dream to visit this continent, and I decided what better time than now to indulge in my fascination. I also somehow wanted to reward myself for having largely overcome the most challenging time of my life, during which I felt I had missed out on many opportunities and some of my youth. Lastly, as my illness always worsened during the cold winter months, I wanted to see if living in a warm climate would a healing effect on me. I was still not totally healthy and honestly did not know if I would be able to handle to harsh climate: I was going to middle of the Sahara desert; a European girl who had never experienced heat above 36 degrees. However I was determined to go and fortunately, was right about the effect the perpetual sunlight had on me. I felt a lot better, mentally and physically, of course also due to the minimal amounts of stress I experienced there. The stream of new experiences distracted me from my illness, so that I hardly thought about it for 6 months. By the time I was ready to leave, I felt so good that I even tried (and sadly, did not yet succeed) to come off my anti-depressants.

I am telling this story to inspire you and show you that recovery is possible if you have patience, determination and faith. It is also the basis for this blog and a new chapter in my life. Having faced Chronic Fatigue Syndrome head on, I fully intend to do the same with my mental illness, and so should you! At least depression is a fully recognized, well-researched and treatable illness. We should therefore not be afraid to use all the resources available to us.