*STRESS BUSTING AND ENERGY BOOSTING WORKSHOP Mon 2nd October 7.30pm. Book tickets now*
THE CURSE OF THE INVISIBILITY CLOAK
Tired all the time, poor memory and concentration, muscle pain, headaches, low mood, sensitivity to light and noise, disrupted sleep. Imagine having to feel that way day in, day out. This was my life for 8 years.
The symptoms are widespread and changeable but for the estimated 250,000 sufferers of M.E./CFS (Myalgic Encephalopathy or Chronic Fatigue Syndrome) that’s exactly how they feel every day.
I was diagnosed with M.E. after failing to recover from a bout of glandular fever during my GCSEs. Over the next few years, my health continued to decline until my mother was having to wash me, feed me and push me in my wheelchair when I was unable to walk.
Often the most frustrating part about this illness is the battle you fight behind closed doors. I felt like I was wearing Harry Potter’s Invisibility Cloak as people couldn’t always see or understand the symptoms. Reactions from friends and family were polarising and often strained. After all, it’s just not normal for a previously healthy, over-achieving teenager to become chronically ill.
The illness was and indeed remains relatively misunderstood with multiple theories on its causes from a virus, response to a stressful or traumatic experience, to mitochondrial disruption. Children and teenagers are often the worst affected however adults can also be suffer especially in their 20s to 40s. Hormone changes and increased stress levels, especially in the exam years for children, trigger all sorts of chemical reactions within our bodies.
The M.E. Association explains: “It can be a difficult diagnosis to make. In some the effects may be minimal but in a large number, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.”
This is why having a diagnosis or label can be so helpful. We all like to know what we are facing. M.E., CFS and Post Viral Fatigue Syndrome are umbrella terms as are other invisible illnesses such as IBS (Irritable Bowel Syndrome), anxiety or depression which all have a plethora of causes, triggers and solutions. Diagnosis is an emotional time. Some people need labels, other do not want to be restricted by them. Whatever your approach, it is unifying to acknowledge your symptoms, to share with them with your practitioner and look for commonalities.
Dr Tim Robinson wrote a great article on multiple treatment options last year (in the Sherborne Times). For me, it was a combination but ultimately, I do think that acceptance and lifestyle changes played a significant role.
Einstein’s definition of insanity is to “Keep doing the same thing over and over and expecting a different result”. I kept trying to battle on, to try to pace and manage my energy but would get too excited on a ‘good’ day and overdo it, resulting in two ‘bad’ days for recovery, hidden behind closed doors.
Step One: Accept there is a problem.
Step Two: Be willing to work towards a solution rather than burying your head.
I just wanted to be normal and to be healthy. I didn’t want to spend time finding solutions, I wanted a magic wand. But as we all know, that doesn’t exist. A quick fix would not provide a long-term solution. Through various treatments including kinesiology, I worked to identify the root cause and find an approach to help manage multiple symptoms.
Recovery is a long process and there will be obstacles and detours, which in hindsight often provide our greatest learnings. Managing lifestyle and stress levels are hugely important in leading a healthy, balanced (ish) life.
For me it’s an on-going process. As life evolves so have my methods of treatment. What worked for me in my twenties has been adapted and reviewed to have relevance in my thirties. I’m not perfect (don’t tell my husband!) and could always do more, but it’s having the willpower to return to the basics (step 1 and 2 above) and courage to accept where things need to change.