Action for M.E.

“I love being part of a community”

Nicky Alan, 48, from Devon explains how the support services offered by Action for M.E. have helped her cope with her condition

When Nicky Alan was involved in a road accident in January 2012, she had no idea how big an impact it would have on her life. “I was in the passenger seat of a car which was hit by a young girl who had just passed her test. I immediately felt the most excruciating pain in my jaw, back, neck, shins and knees and had to be taken to Torbay Hospital. After tests I was told I just had soft tissue damage and sent home the next day.” After sleeping for 24 hours, Nicky found she couldn’t get out of bed. “Every nerve, bone and muscle seemed to be in agonising pain; I couldn’t move. I was also having problems with my hearing and vision.” Nicky returned to the hospital in a state of panic. “I kept telling the doctors they must have missed something, but they just sent me away with stronger painkillers.”

Over the next 12 months, Nicky visited a number of GPs, neurologists and rheumatologists to try to get to the bottom of her persistent pain and fatigue. “I got passed from one department to the other as nobody really knew what to do with me. I was given blood tests for various conditions which all came back clear.”

Eventually, a year after the accident, Nicky was diagnosed by a rheumatologist with M.E. (myalgic encephalomyelitis) – a chronic neurological condition causing debilitating pain, fatigue and a range of other symptoms – and fibromyalgia, which causes widespread pain. “Although by that point I was desperate for a diagnosis, I was heartbroken to hear it was M.E. They told me there was no cure and nothing they could do.
I was given some painkillers and left to get on with my life.”

Nicky found herself struggling to cope with the devastating impact of her symptoms.
“As a former police officer, I used to run murder investigations, but now my brain fog meant I couldn’t even think about how to go to the toilet or put a sentence together. I had always been extremely active, travelling the world and regularly going scuba diving, but was now completely bed bound. “Things like cooking a meal or doing the washing, left me absolutely exhausted, and socialising with friends became impossible. My partner also left me and I had to stop work, which led to me losing my home and sleeping on friends’ settees. My whole world just crumbled around me.”

Over the next year, Nicky battled with depression. “I wanted to die as I felt like I couldn’t cope with another day of pain, misery and isolation. Most of the time I was too exhausted to even have a conversation, and when I did, nobody seemed to understand what I was going through.

“Friends and family told me I just needed to push through it, and health professionals were no better. One GP told me to get a grip and find a job as it wasn’t as though I was disabled. I was also struck off from an M.E. clinic as I was too exhausted to make it to several of the meetings, and was told at a pain clinic that there was really nothing they could do to help me.”

It was then, in the midst of this extremely difficult time five years ago, that Nicky came across Action for M.E. in a conversation on a Facebook group for people with the condition. “I signed up to their newsletters, which include updates on medical research and the work the charity is doing. It really helped just to know that someone was supporting people with ME and it gave me the incentive to keep fighting.”

Nicky also signed up to the charity’s online forums. “Signing up to the online community was an absolute lifeline. Being bed-bound, the internet is often your only link to the outside world, and it was incredible to be able to log on and chat to other people who understood exactly what I was going through. We have a laugh about things other people wouldn’t understand, swap tips on everything from the best supplements to the best places to buy underwear for people with chronic pain, and support each other through everything.

“An online friend also told me about a drug called low dose naltrexone, which I spoke to my GP about and started taking in 2015. For me, it’s been a miracle drug helping to manage my symptoms and has now replaced every one of the 30 to 40 tablets I was taking on a daily basis at one time.”

Due to the support of the Action for ME online community and new medication – as well as dietary changes and a mindfulness programme, which were inspired by conversations within the community – Nicky now feels much better equipped to cope with her condition. “The pain and fatigue are still constant, and if I look at how full my life was before it is easy to get upset. However, I have learned to focus on the positives, accept my new life and take one day at a time.

“With ME you often feel quite helpless stuck in bed, but being able to help others on the forum – especially those who are newly diagnosed and feeling lost – has given me a purpose and is something I now love to do. Despite everything that’s happened I think of myself as a content and happy woman, and that’s largely down to the community of friends I have found through Action for M.E.”

  • ME affects an estimated 250,000 people in the UK, and 17 million worldwide – one in four of whom are house- and/or bed-bound, unable to manage even basic self-care.
  • Action for M.E. helps children, families and adults with ME to cope with the impact of the condition, and feel less isolated.
  • Action for M.E.’s information and support resources are downloaded nearly 20 times every hour.

The Candis Big Give project: Action for M.E. – Stop M.E. stealing lives
FUNDRAISING TARGET: £90,000

  • Action for M.E. offers a number of support services for both children and adults affected by the condition, including telephone helplines, a website and online forums. It also supports researchers and research activity into ME, which currently has no cure and very little understanding around how to treat it.
  • The charity will use the money raised in the Candis Big Give to extend the reach of its support services in 2019, with the aim of ensuring an extra 2,300 young people and adults with ME and their families receive vital information and support, as well as driving collaborations and supporting more research into ME over the next year. For more information, visit actionforme.org.uk or call 0117 927 9551.

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