Post-viral illness is not new
Most people with ME remember having a virus. Some were really ill and never fully recovered. Others recovered from the virus after a few weeks, only to collapse again later. Many cannot identify the virus they had, or, like some with COVID, hardly noticed a virus had infected them at all.
Sharon’s story – Pembrokeshire
Pembrokeshire-based WAMES Volunteer Coordinator Sharon Williams caught the Epstein Barr Virus at the age of 17, while studying for A levels and representing Wales at gymnastics. She was ill for 20 years but managed to continue to study and then work part time and eventually improved enough to be able to run a successful foreign language school.
After a severe relapse in 2012, her symptoms lessened for a few years but they have partly returned since the COVID jabs. She says “Living with a chronic physical illness day in day out for decades is hard, especially knowing that there is no treatment or cure. But suffering with an invisible illness and having people doubt its validity is even harder. ME affects people not only physically with a wide range of unpleasant symptoms, but also emotionally, financially and socially.”
Mike’s story – Powys
Mike caught an unknown but nasty virus in 1990 and was off work with profound exhaustion, weakness, a very high temperature, and a very sore mouth. The doctor offered nothing but the advice to “take a cold shower”! Mike tried to return to work but his health continued to deteriorate and unfortunately he had to close his business. “I resorted to medications to try to help myself and in desperation spent an awful lot of money chasing a cure, both complementary and through the NHS, but all to no avail.” In recent years he has had to cut back on medications due to intolerance of many of them.
He continues to get a lot of migraines and headaches, plus can only walk a few paces due to leg pain and weakness. He still feels unwell and toxic and has unfortunately not found anything which helps. Mike, who lives in Powys, steers clear of visiting doctors about his ME as they know so little about it. “It is hard suffering with an illness which is so all-encompassing but which is so disbelieved and dismissed.”
Jan’s story – Ceredigion
Jan caught a gastric bug while visiting Singapore and although her husband was back to normal within 2 days, she was wiped out for 2 frustrating weeks before recovering enough to resume sightseeing. “I must have discovered every park bench in the city and seen only a fraction of the sights as I had to rest more than I could explore.” To her disbelief the same thing happened on another visit 2 years later. This time her recovery was short lived.
Back home in Aberystwyth she became weak and in constant pain. “Even my eyelids hurt and my body was so sensitive it hurt to wear clothes. I felt as if kilos of extra weight had been strapped to my back and I was being dragged down to the ground.”
For 35 years her many symptoms have fluctuated in intensity and variety, easing sufficiently sometimes to enable her to get involved with WAMES, the patient charity for people with ME and post-viral illness. “I have improved somewhat, but every day is still a struggle to some extent. I haven’t felt well for 35 years and though some doctors have tried to help, they have done so without any knowledge or interest in the condition
Tony’s story – Conwy county, North Wales
North Wales resident Tony caught an unidentified virus in 2003 and seemed to recover within a month, enabling him to get back to work. A few years later he had a relapse and has not recovered since. “I underwent a never ending roundabout of blood tests, urine tests and consultant appointments, only for doctors to tell me that ME isn’t a real condition!”
With low energy and temperature fluctuations his body began to malfunction more and more and he has collected a variety of additional debilitating diagnoses. “I can hardly walk and very rarely leave the house. This has put a great strain on my wife, who apart from being my carer, also has to manage her full time job and care for her elderly mother.”
Tony found little help from the NHS and spent years searching for treatments in vain. “I’m in my second decade of this now and despite trying every treatment available I seem to be continually sliding into a worse condition than the year before. But I live in hope of a brighter future while making the best of what I still have. ”
Find out how to Tell your story
Send your story to jan@wames.org.uk
