ME Awareness Day-The Invisible Illness-Generations Photography-Norwich

Updated: Jan 9

Today marks ME Awareness Day and this is a subject which is very close to my heart. I still remember the day I got my ME diagnosis vividly, it was an extremely emotional time after being unwell for over 10 years to then suddenly being given a label to explain all of my symptoms. I am writing this Blog to raise awareness of this misunderstood and invisible illness, which makes sufferers often feel unrepresented and devalued.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
The face behind the invisible illness

The best thing I have ever done for my own ME was changing my working routine to become self employed to set up my own business and open Generations Photography in 2018. Being a Photographer has allowed me to achieve a better work life balance, which in turn has helped to improve my own wellbeing which has helped to overall improve my ME. Being my own boss, allows me to set my own working hours, and take breaks when needed. I am able to space out my day, and take regular rest breaks when needed. I can pace myself and no longer have the stresses of being an employee with a complex illness to contend with.

What is ME?

ME stands for Myalgic Encephalomyelitis. The World Health Organisation (WHO) defines ME as a neurological condition. It is also sometimes referred to as CFS (Chronic Fatigue Syndrome) or PVFS (Post-Viral Fatigue Syndrome). ME is a complex and disabling disease with a wide range of symptoms.

What are the symptoms of ME?

ME is categorised by a range of different symptoms, again this is different for each person. Also some people develop more symptoms over time.

  • The main symptom is a feeling of excessive fatigue which is made worse after any activity

  • Pain-which can be in the muscles, joints or nerves

  • Cognitive issues e.g. difficulty concentrating / problems with short term memory

  • Sleep problems e.g. unfreshed sleep, lack of sleep, too much sleep

  • Flu like symptoms e.g. sore throat, fever, swollen glands

  • Digestive problems e.g. Irritable Bowel Syndrome, Cramping, Indigestion, Nausea

  • Sensitivity to light, sound and smell

  • Eye sight issues

  • Problems with body temperature control

  • Problems with blood pressure

  • Intolerances to certain foods / alcohol

This list is in no way exhaustive.

What can help your ME symptoms?

Sadly there is no current cue for ME. There are different medications and health treatments that can be explored for ME sufferers. Everyone's ME is different so what might work for one person, will not necessarily work for someone else. But I am going to share what helps my symptoms. these are only suggestions and consult your doctor before trying anything. I also take a number of vitamins, but again you would to consult medical advice on this.

To help with my foot pain I use the following:

-A foot spa with epsom salts

-A vibrating foot massager

-Hemp foot cream

To help with hand and wrist pain I use the following:

-Hemp hand cream

-Microwavable water bottle as heat helps my pain

In regards to alternative treatments I have found that Massage has helped me, along with Bowen Therapy. But as these both cost money, I am limited as to how often I can access these treatments. You can find out more about Bowen Therapy here.

What's it like to live with ME?

Every day is different, some days are extremely hard, whereas some days are better. I find the hardest part of the day for me is first thing in the morning. Its hard to explain, but when I wake up I often feel temporarily paralysed in bed, it takes a good 30 minutes to 1 hour before I can move my body enough to be able to get up due to the vast amount of pain I have in my legs, feet, arms, hands, neck and back, despite having just woken up. I find having a warm shower helps to awaken my body and makes it easier for me to move the different parts of my body.

In my experience the hardest part of living with ME is the reaction and attitude from other people. As its a condition that no one can see, the lack of belief of its realness and severity has been something I have experienced first hand, this has come from former employees, work colleagues, the health profession and even so called friends. What you learn quickly is who your real friends are. The most unbelievable experience I had with ME was the reaction I received from management at one of my previous jobs, I requested a meeting when I got my diagnosis to see how my work could help me with my newly diagnosed condition. However I did not get this, instead what happened I still find totally shocking, the manager said to me "when will you be over this so that you can do your job properly". This experience still haunts me now, and having received no support from this employer, it forced me to leave this job.

Having ME is a difficult path to be on and you can feel like no one truly understands you, unless they have it themselves. However the good news is that there are lots of supportive organisations out there who can provide guidance and support and they have members who actually have ME so they understand the struggles first hand.

Sources of Advice and Support for ME Sufferers

There are also some online Facebook Groups as well which can be beneficial to join to talk to others and share experiences with others in the same situation as you:

-M.E / Chronic Fatigue Syndrome UK

-M.E. / C.F.S. / Fibro Support Group for sufferers & carers

If you have ME remember you are never alone, as there are lots of other people out there having the same feelings and experience as you and are also living with this complex condition.

Written by G.Hampton 11/05/2021 Copyright © 2021 by Generations Photography