What it’s like to live with chronic fatigue and depression
Chronic fatigue syndrome, also known as ME (myalgic encephalopathy) is estimated to effect 250,000 people in the UK.
It is a serious and debilitating illness that at times can render its sufferers unable to function effectively due to the level of fatigue. ME is more than just exhaustion.
According to Dr Charles Shepherd, medical advisor to charity ME Association, the condition ‘can cause greater functional impairment and poorer quality of life than many other serious medical conditions’.
‘ME has a unique and defining clinical feature known as postexertional malaise – a delayed exacerbation of symptoms that can follow even minor physical or mental exertion (such as movement or exercise),’ he says.
‘Research has discovered significant abnormalities in the central nervous system, immune system, endocrine (hormone producing) system, and in muscle, causing energy metabolism impairment.’
Chronic fatigue is described by the World Health Organisation as a neurological disease.
There is still so much that doctors do not fully know about the condition but medical research continues to discover more about it and best courses of treatment.
As well as physical side effects, having Chronic Fatigue Syndrome (ME) also affects mental health.
Those with the condition often develop depression and anxiety due to its impact on their lives.
Sonya Chowdhury, chief executive of charity Action for ME, tells Metro.co.uk: ‘We know that ME scores lower on health-related quality of life tests than some cancers, depression, schizophrenia, chronic renal failure – in fact, most other chronic conditions.
‘Its key symptom is post-exertional malaise, the body and brain’s inability to recover after using even small amounts of energy.
‘This leads to a flare-up in chronic fatigue and pain, cognitive difficulties, inflammation and a range of other symptoms.
The daily challenge of living with these symptoms can, unsurprisingly, lead to anxiety or depression for many of the 250,000 with ME in the UK.
‘When someone with ME experiences a mental health issue, it can be tough accessing treatment that does not exacerbate their illness.
In some cases, exercise and some medication can be helpful in managing depression – but absolutely not if you are living with ME, an illness made worse by exercise, and one which can also cause increased sensitivity to medication.’
Action for ME continue to say that having a well informed GP to assist with both depression and ME is important.
Having appropriate and different treatments are vital, so that the mental health treatments don’t make the neurological side of ME worse.
Dr Natasha Bijlani, Consultant Psychiatrist at the Priory Hospital Roehampton agrees.
She tells Metro.co.uk: ‘Chronic Fatigue Syndrome (ME) is a very debilitating, long term condition with a fluctuating course that results in extreme physical fatigue to the extent that sufferers struggle to even get out of bed, let alone cope with the most basic every day tasks.
‘Not surprisingly then, this can tremendously impact on mental health, with people becoming depressed and developing low self esteem and confidence.
‘The first step in coping with any condition like CFS (ME) that is unlikely to resolve quickly is to accept the diagnosis and then to try to manage fluctuating symptoms, following medical advice.
Cognitive Behavioural Therapy (CBT) has a very good evidence base for managing the negative psychological aspects of any condition, and especially ME.’ We spoke to some people who are dealing with chronic fatigue and mental health issues.
I first developed symptoms 10 years ago and found it completely debilitating.
We all get tired from time to time – especially with work and children thrown into the mix.
But chronic fatigue is exactly that – chronic. It’s beyond tiredness.
The feeling of overwhelming weakness leaves you almost completely incapacitated and no amount of sleep refreshes you.
Something as simple as making a cup of coffee or getting dressed is exhausting. When I have flare-ups, it affects everyone around me, particularly my son, who gets annoyed when I can’t do things with him.
Most recently, the pain of my arthritis coupled with the severe fatigue makes getting up for work a horrendous chore and I can’t wait to go back to bed again at the end of the day.
My depression started when I was in my teens and was not well managed until my mid-twenties.
It took a long time to find medication that was effective, and even now I have episodes when I struggle to eat, leave the house, or take care of myself.
It’s not just feelings of emptiness or sadness, it’s an unbearable but unreachable pain.
I think, like any hidden illness, people don’t comprehend the life-inhibiting effects.
Because you look absolutely fine on the outside, there really is no way of people knowing how you feel unless you speak up. Even then, the unpredictable nature of both conditions means that one week you may be relatively ‘normal’ and then the next week feel as if your life is falling apart.
While there are certainly things I can do to manage my conditions, I can’t cure or control them completely.
I have experienced chronic fatigue syndrome twice in my life.
Firstly, aged 10, shortly after a lot of family trauma, and secondly age 24, after work stress. In between I fully recovered, both times.
My symptoms included feeling total exhaustion, unable to walk, heavy legs, memory fog, headaches and fear of getting worse, along with anxiety and low mood.
For a while, it felt like CFS really impacted my life.
I lost my job, and it felt like the end of the world, but what I want to share with people now is how this can actually be the universe’s way of showing you where you are meant to be.
As I allowed my life to unravel, I actually retrained as a wellbeing mentor and I transformed my life by doing that.
I awakened to a profound understanding about life, and how we are experiencing life via thought in the moment, that allowed me to see depression, CFS, and our wellbeing in general, quite differently.
I eventually set up a blog to help share this message, and I now help people tap back into their innate wellbeing I want people to know that there is absolutely hope of recovery, as well as acceptance that you are perfectly whole even though you are ill.
I am the embodiment of that; I know it is possible. I used to hear some doctors say ‘it is all in your head’ and it would really upset me.
It isn’t ‘all in your head’ at all; the symptoms are very real.
I was diagnosed with CFS/ME at 14. I always had a sore throat and cough, and was generally rundown and exhausted.
The doctor did all the usual tests and said I had it. I have always tried to hide it as much as possible.
I try to fit in extra naps after lunch when I can.
However, I am lucky in that my illness is a mild form, and as I have got older, I have learnt to manage it, and rest before I reach that totally exhausted stage.
After my sons were born I suffered severe postnatal depression.
I actually didn’t really recognise it at the time, but now I look back and think: why didn’t I ask for help? CFS/ME for me, means I have to be a bit careful.
For depression, running and yoga helped so much. You need to learn to be kind to yourself. I try to eat well and generally appreciate I am not superwoman, but that’s okay.
It’s okay not to be perfect, to be tired, and to accept help every now and then. That’s a hard lesson to learn, and it’s taken me a long time to get there.
The term chronic fatigue was first mentioned when I was in my late teens – I’d been suffering periods of debilitating tiredness for ages and having mentioned this to my GP they suggested that it could be CFS.
I started experiencing some more severe symptoms such as memory loss, clumsiness and severe joint and muscle pain. My new GP helped me investigate further.
Symptoms can be so vast and no two people are the same, but I constantly feel like I’ve not slept and run a marathon while carrying a bucket of water on my head.
I’ll have bad days when I just want to cry with the all over shooting pains and foggy head, and others where I feel pretty much normal.
I’ve found that lately it has been the frustration of not being able to get things done, not being as organised as I usually am, having to give up hobbies and not join in as many social events as I would like to.
It’s been a really tough few terms for my being a teacher, and I think it has definitely been a lot harder to keep on top of the game I have found that my mental health has started to deteriorate.
This is to do with feeling so helpless and slightly lost – not knowing who to talk to and how to describe exactly how you are feeling.
I have also been one of the hundreds of unlucky people who is still waiting for referral appointments to specialists who will be able to help me better manage it and balance my life a bit more than I currently can.
I think people just need to be more aware of the condition in general – if someone is telling you they feel tired or ill frequently don’t just roll your eyes and say ‘you’re always tired’.
Ask them if there’s anything you can do to help.
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