ME Awareness Week:
Gwyneth’s ME story part 3 – walking for ME
Gwyneth Hopkins is one of a small percentage of people who has recovered from ME within 5 years. Here is part 3 of her story. Part 1 & part 2 cover her experience of ME and her path to recovery.
Staying healthy…and helping others
After recovering I went to college to study natural nutrition to help me understand how to keep my body healthy. I went on to train in some of the therapies that I feel played a big part in my recovery. I am now a part-time Reiki Practitioner and Master/Teacher, a Bach Flower Remedy Practitioner and Em-Power Therapist. It’s nice to be in a position to help others after all the help I received during my illness.
By the end of 2003 I was back riding horses and walking in the hills. However the pressures of the illness on my marriage became too much and I was divorced in February 2005. We had only been married for 18 months when I became ill. The marriage lasted 8 years, 5 of them I was sick. We have stayed friends though, and he’s now happily remarried.
During my illness I used to imagine being well and riding across Wales from south to north, but I couldn’t afford to keep horses now I was divorced. After I’d been recovered for a couple of years I knew I’d be safe to push myself so I decided I could walk it instead. I had never done anything like that before, but after not being able to walk more than a few yards for years it seemed like the most exciting thing to do.
Coast to coast – my first walk
In June 2006 I walked from Aberavon sands near Port Talbot to Penmaenmawr on the north coast, 230 miles in 3 weeks. I had a big rucksack carrying minimum camping equipment, a change of clothes, OS maps etc. It weighed 16 kg when I started but I soon got it down to 15kg. I’m only 8st 2!!
Most people thought I was crazy and that I’d never manage it. My sister Liz had cycled from Lands End to John O’Groats in her younger days so she understood and was very supportive, as were the people I worked with in Monmouth sports club. I was determined to try.
I didn’t want a fixed route or time schedule. I chose 5 places to pass through as a guide, including Llandovery, Devils Bridge, Cadair Idris and Mt Snowdon. I used OS maps and just planned my routes daily as I went. If I got to a split in the path I’d choose the one that looked most interesting!
Other than that I made my way across hill tops and farmland not knowing where I would sleep (sometimes wild camping, sometimes on small camp sites) or where I would eat next. It was such a sense of freedom! I often slept 10 hours a night and didn’t miss a bed, but accepted a kind offer of accommodation for the night from people with ME in Tregaron and Ysbyty Ystwyth. It was the bath that was the real treat. I often washed in cold streams and would fantasize about soaking my tired body in a hot bath!
Some footpaths were just sheep tracks so I had to be careful with my navigation, the stiles across farmland were usually in a corner and over grown with nettles and brambles. I had to bash my way through and often had scratched legs. Some paths had fallen trees etc. blocking them and then it was it was a real scramble with a big pack on my back.
“When asked why I do it I say because I can and it’s a joy to feel well and be out in nature again after spending years in bed. If I can help inspire people with ME at the same time, that’s great.”
I usually carried enough food for about 36 hours but I didn’t have anything to cook with, so it was all cold. Sometimes on a farm camp site a kind camper would give me a cup of boiling water for one of my herbal T bags or give me some hot baked beans. I made a point of going through a village where I could buy food or have a hot pub lunch once every few days.
In the spotlight for ME
When I told some people with ME about my planned walk they asked me to raise money for MERGE (now ME Research UK). I agreed and then spent 6 weeks promoting the walk in the press etc. In fact a friend made me a web site and soon people with ME were picking it up and contacting me.
During my walk I raised as much publicity for ME as I could by getting into local papers and on radio. BBC radio Gloucester had given me a tape recorder to talk into daily. When I got home, edited bits of that went out on the radio every day for 3 weeks. I also spoke live on other radio stations, trying to tell people what it was like having ME.
I carried flyers explaining what I was doing and gave them out as I went. On the whole people were amazed and handed me cash or donated on my Justgiving page. In my opinion most people who are aware of ME only see the people who don’t have it so badly or are partly recovered, they don’t realise that a large proportion of people with the illness are either bed or housebound.
A lot of people with ME, and others, were following my walk and I had loads of people ringing me on my return. I had given out my number then, as I do now, offering to chat, and I was on the phone most days after work to people with ME who enjoyed talking to someone who knew what they were going through, also to some of their carers. Carers are amazing people, usually family members who go through a lot when they see the person they love suffering. They themselves can get overtired and stressed looking after them. Thanks to them all!
Interesting encounters
I hadn’t been sure if I could reach my destination but I got fitter the farther I got and people were so supportive along the way. I also met many people with ME.
The most interesting contact was from a lady in the US who had ME. She asked if I was going through Llanddewi Brefi on my route. I replied no. I was going about 15 miles east of there. She said “that’s a shame, my grandmother is buried there and I’d like a photo of her grave.” I replied “I’m going there now, as this is a walk for ME”
I also met a Chilean mountain biker on his holiday. He had stopped to have lunch and asked me what I was doing but couldn’t understand much. I gave him my flyer. Later he caught me up, he’d been trying to interpret it. He was full of praise in broken English and insisted on giving me a carton of apple juice. When I got home I saw there was £20 from Carlos on my Justgiving page!
I had expected wonderful scenery and I certainly got it. Mostly in very hot weather but it turned wet by the time I walked up Snowdon. But the best thing I shall take from that walk was the amazing people who helped me along the way, and their stories.
One day I went down a foot path that went past a remote cottage of a lady with ME. She saw me and invited me to lunch and I stayed a few hours chatting. Once going through Llandovery I turned up a road mistaking it for one 100 yards further up. It took me up a steep hill and at the top a man was gardening and stopped to tell me his daughter was housebound with ME and he gave me £10 for MERGE.
But the best thing I shall take from that walk was the amazing people who helped me along the way, and their stories.
One goal reached – now I was hooked!
I had promised friends that I would finish by going into the sea when I reached my destination. I had arranged to meet a press photographer and friends who had come to take me home at 2 pm. It had gone cold and I had been wearing a fleece and waterproofs on the last part of the journey. I stripped down to my charity T shirt (but kept the thermal top on underneath) and ran into the sea and threw myself under.
Had I not had ME I wouldn’t have had the idea or the courage to undertake such a trip on my own.
I was elated that I’d managed it after years of pain and just lying in bed feeling utterly useless. I was also feeling very sad that it was over, it had been such an amazing trip. Had I not had ME I wouldn’t have had the idea or the courage to undertake such a trip on my own.
I enjoyed it so much I went on to do walks from 110 to 168 miles over the next few years, for charity. I gave it up in 2015 at the age of 64 after a 168 mile walk which took my total to over 1,000 miles. I raised over £7,000 mostly for ME Research UK but some for Get kids going who supply sports wheelchairs for kids.
I could tell endless stories about my trips 🙂 and I am very proud to have been able to raise awareness and give hope to people with ME.
Gwyneth Hopkins, South West Wales
I tried 
It was pointed out to me that we absorb about 60% of the chemicals we rub into our skins which is even more worrying when you think that what’s in hair dyes, face creams etc. can easily be absorbed into the brain, damaging our nervous system. There are lots of good alternatives on the market today – usually found in health food shops or online. For people in good health these substances may not cause a big problem, but with ME you have little energy to support your detoxing organs like liver and kidneys, and the substances can build up like poisons in your body. Your liver is a major filter and it just gets blocked.
Every day requires time spent lying down, experiencing pain in my muscles and joints and sensitivity to noise, smells and light.
In November I was rushed into hospital with what was diagnosed as a mini stroke. I was kept in for nearly a month undergoing endless tests, a lumbar puncture and multiple scans. In the end by a process of elimination they diagnosed ME. It was useful having an early diagnosis but they wanted to keep me in hospital because I was so weak. In the end I had to beg to go home. Hospitals are noisy and being in a stroke ward the lights were on all night and there was noise as the other patients were being attended. The lights hurt my eyes and I was very sensitive to sound.
My daughter has had ME for the last 27 years, since she was 11 years old when she suffered a bad attack of glandular fever. She was a few weeks into a public school, where she had gained a place on merit. She was extremely bright and enthusiastic, playing cello in a junior orchestra and she excelled at sport.
Staying at home in self isolation is nothing new for her. She has her bedroom blind closed most of the time. Her body clock is reversed and she is asleep during the day, despite several attempts to change this. She has pain in her muscles, is light and sound sensitive, and suffers with brain-fog and extreme unnatural exhaustion. She is only just able to go to the bathroom herself. She is an immensely independent and private person, and sometimes it is a struggle. Often a conversation is too much for her and she shuns any company most of the time.
May 12 was chosen as it coincided with the birth date of 
ibbons are used by many groups as symbols of support or awareness. The ribbon colour used for ME/CFS is blue, for Fibromyalgia it is purple and for MCS it is green. In all cases, the ribbon colour is not unique to the cause but is used for other causes as well.
You have always been there
Now you stand back a little as walks become longer,
