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Mettle Monday - It's All About M.E.
Gabby Coles • Mar 02, 2020
Written by Gabby Coles
Myalgic Encephalomyelitis or M.E, Chronic Fatigue Syndrome, doesn’t seem to convey the devastation this illness causes.
I was 13 years old when I was diagnosed with ME in the early 90’s, it was still called the “Yuppie Flu” then and understanding of this Chronic illness hasn’t progressed that much since that time.
I was a normal teenager; School, Netball team, homework, hanging out with friends, watching Top Of The Pops & taping the top 40 on a Sunday. Thinking about a career once school had ended. I had suffered from Glandular fever, was being bullied & had some vaccines all within a short period of time, my body was under stress, but nothing really out of the ordinary for a teenager. All that radically changed one morning when I couldn’t get out of bed. A high temperature, headache and lethargy is not that uncommon, so we weren’t concerned to begin with. Only in the following weeks more symptoms presented themselves. Nausea, loss of appetite, achy muscles, light sensitivity & incredible fatigue with insomnia. Then came the kicker I started to lose my short-term memory. This was really when I started to panic.
I was sent for a battery of tests; Blood tests, MRI’s, Eye dilation, Psychiatrist & on it went. There is no one test for an M.E diagnosis, a process of elimination is all the doctors can do. I was incredibly lucky that early on my doctor was pretty sure I was suffering from M.E. but had to carry out all these tests to eliminate any other illnesses. Once it was confirmed I wasn’t suffering from a life threatening illness & was officially diagnosed, I was placed under a Pediatrician, who was carrying out a study of M.E in childhood – regular appointments were made to monitor my progress.
It was a few months into my illness at this point and my days mostly consisted of laying in bed, with my eyes closed some of the time due to the light sensitivity & in silence as my headaches were pretty debilitating.
If I was lucky & having a “good day” I would be well enough to be either carried down the stairs or crawl to the stairs and bump my way down to the sofa to lay there but not do much else. The isolation was one of things I struggled with, I know that my friends tried to visit me, but after a while their teenage lives went on and mine stayed the same, Bed & Sofa. Gradually their visits were less often and then stopped all together. The strain this illness had on my family was Immense, not only were there two other children to look after, both my parents worked too. The guilt for the extra pressure my illness put on my home life is staggering. I am forever grateful to my family for their love and endless support. I will never be able to adequately pay the debt.
As time went on, of being confined to the bed or sofa & with no improvement in my health showing I gradually became more despondent. I was humiliated & angry that I had no control over my body or my life. I had to rely on whoever was caring for me on a given day to take me to the bathroom, to brush my teeth. To try and force me to eat or drink something. I had to rely on my Mum to put me in the shower or wash & brush my hair. I couldn’t believe that my life had taken such a turn and I could see all my hopes, dreams and career aspirations float away as I was stuck in that bloody bed. I was proscribed Anti-Depressants & sleeping pills, which I didn’t take, but we had a supply of pain killers.
The insomnia was hell, I would lie awake at night, my brain mulling worries over, but would be so fatigued I couldn’t move. The relaxation techniques my Doctor had given me to do did not help & to this day, I can’t sit still long enough to mediate.
A good day was followed by three or four “Rest days” where all I managed was to open my eyes for a few minutes at a time. I had been quite stoic up to this point, believing the confidence of others when they told me that the good days will outnumber the bad soon.
My breaking point came around a year into the illness. I don’t remember many specific days from my illness but this one has stuck around. This was the day I hit rock bottom. I had a bad few days but woke up on a better day & I remember grabbing the painkillers on my bedside table, shuffling into the bathroom, shutting the door and staring at these tablets in my hands.
Crying with grief, anger & confusion. At 14 years old I felt that my life was over. I didn’t want to live if this was my life. I was sat, on the bathroom floor, completely lost & never feeling more alone. Crying into the crook of my elbow so my Mum couldn’t hear me. I still had those tablets, unopened in my hand and I don’t know how to explain it other than complete stubbornness, but I decided to channel that anger. This thing that I have will NOT. BEAT. ME. I am going to take it on & even though it may take years, I will live my life the best way my body would let me. As time went on the good days did start to outnumber the bad. I got to go out in a wheelchair, managed a few days away with my parents and younger sister and even managed to shower myself, although I would have to rest for the remainder of the day.
I started to be able to sit and read, which was an absolute delight. The simple act of finally being able to pick up a book and transport myself to another place helped my mental health so much. Watching TV also was a treat, as the light sensitivity had meant that it was not possible at times.
The symptoms were still there, but some of them to a lesser degree, I always had a headache, Nausea, aches & short term memory loss, but the light sensitivity had reduced to almost nothing. Although to this day I still have to wear sunglasses when it is bright out.
Soon I was well enough to have a tutor come to the house for an hour twice a week. I had been out of school for all this time and had come to terms with the fact that I was not going back. The sessions were tiring and once the hour was up I usually went to bed for the day.
After another few months, I got a place in a local hospital school for two hours a few times a week. I found another girl there who also suffered from ME. We bonded pretty quickly and became fast friends for a while.
I went to the hospital school for around 6 months, gradually increasing my workload and even managed to take work home to complete.
Managing to walk by myself and study set me on course for early entry at the local college to take 3 G.C.S.E’s, which was all I could manage. English, Maths & Art. The next year I manage computer Science & Sociology. By 16 I was well enough to complete all of this and manage to work weekends at a retailer. I was still suffering lingering headaches and when stressed or overworked the exhaustion was a killer. I had been suffering from M.E for a few years, but it was now manageable.
My older sister talked me into going out & trying something called a “Social Life”. I had a few friends at college and at work but I didn’t really trust anyone enough. I went out with her & a few of her friends, who gradually became my friends. Some of the best ones I have to this day.
I recovered even more and by 18/19 discovered a love of dance music & friends who shared that. We went to local nights & dance festivals.
In a field with your friends, dancing while the sun rises in the morning mists. I was experiencing life, finally.
I should of also stayed in college to get all my qualifications & progress on, but I was so excited that I was able to be normal, doing things that others got to do at my age I embraced it. Still the lingering effects of the illness were there, but I refused to let it rule me. I just went to bed a little earlier in the evenings, knowing exactly how much to push myself. Ignored the headaches and got on.
I met someone who made me laugh and shared the exact same love of music. We made a life together and have two amazing children.
Up until recently I dis-owned the illness. If I didn’t talk about it, or how bad it was, I could pretend it happened to someone else. I didn’t accept that it still affects my mentality.
The stigma. The helplessness. The absolute vulnerability. The loss of control over my body, that still terrifies me. I didn’t want to be that person. I ran from being that person. The person who was weak, fragile, scared and so vulnerable. I feel the need to constantly prove to myself “I can do this” but also continually question if I am able. I am absolutely petrified that my children will also suffer with it. I am afraid to push myself in training, scared I will relapse, but am never happy with my performance. However, I have come to realise that suffering from that illness, has made me the person I am today.
I appreciate being able to run, play & dance. I am stronger than I ever give myself credit for, both mentally & physically. There are over 17 million suffers worldwide & there is still no diagnosis, treatment or cure.
I am one of the lucky ones and I give thanks everyday that I am not still in that bed.
Gabby Coles is a finance administrator for a medium sized business based in the U.K. Loves weight training, running in the woods and sees dance and house music as an intrinsic part of her life.
Most girls dream of their big day, meeting the love of their life and having the most beautiful wedding. They have a dream dress in mind sometimes well before even knowing the person they might marry. But for me it was different, I never dreamt of that day. In fact I had a perspective that was quite the opposite.
When Brin and I brought our first house, we were beyond excited to finally have our own space. We moved in together in June 2015 and couldn't wait to start our next chapter. A few days before Christmas 2015, we were both going on our annual works night out, I dropped him off at the pub, he told me he loved me and that was to be the last time I saw him.
Written by Wendy Searle When I reached the South Pole in 2020, I was exhausted, elated and not a little relieved. I had just completed a 42-day solo, unsupported expedition; over 700 miles of vast, white nothingness. Those feelings persisted throughout the flight back from Pole (which took only 4 hours, to do what had taken me five weeks), throughout the return to the UK via South America. I had already been delayed at the start, thanks to bad weather, so I returned to work after a long weekend at home. My colleagues seemed genuinely glad to see me back, and were interested in my journey. For the first week or so, I couldn’t sleep, despite being achingly tired. (I also couldn’t stop eating, after losing 10 kilos in just over a month, so much so that I once had to stop for supplies during a 15-minute walk.) I was high as a kite, and still so wired after the continual focus of expedition life. It’s akin to climbing, or skydiving, where your whole focus is in the moment. Was I too cold? That could be fatal. Was I too hot? A surprising risk in polar latitudes, as if you sweat it will freeze. Was my kit OK? How long to the next break? And on and on, for what felt like forever when I was actually out on the ice. It’s that element of total immersion, of being so far removed from the everyday – emails, traffic, work; that is at once so daunting and so addictive. After the initial high dropped to merely walking around being more back there than present here, I started to think about going back to training. For what though? I had nothing to train for, and very little in reserve. I took to tyre hauling, which is what I spent so much of my time doing in the run up to the expedition – the traditional method of building leg strength and endurance for pulling a sled (or pulk) for 11-12 hours a day. As soon as I strapped on my pulk harness, I could transport myself back to Antarctica. And that helped, because I was struggling to readjust to life after expedition. It wasn’t just those weeks alone on skis that I missed. I’d been planning, training and fundraising for what amounted to just over 1,000 hours, for five years. I’d met a team of soldiers who were traversing Antarctica, and I became more and more drawn to this extraordinary continent. I read some polar history, some accounts of the first Polar expeditions, when they were true explorers. Despite not having any kind of adventure experience to speak of, I was hooked. I dedicated my life to making the expedition happen. Everything was in pursuit of the Pole. If I read a book, it was about Antarctica, if I had free time, it was spent attending events where potential sponsors might be found. I spoke to everyone who had ever been to the South Pole that I could. After working out what training and experience would be required, I set about ticking it off; Norway training, a spectacular crossing of the Greenland ice sheet, time alone in Iceland. The training was, if not at the level of an Olympic athlete, was certainly dedicated. Twice a day, for six days a week, I hauled tyres, ran up hills, lay in rivers and ice baths, and put up my tent in my house, over and over so I’d have the muscle memory ingrained when I was tired at the end of a long day skiing. Once I was back, I decided the only cure for the huge gap in my life that all those things had left, was another expedition. I don’t think I’m unique in that regard, but I actually missed the build-up, the nurturing of this idea, which became the expedition, which eventually took on a life of its own. I missed the slightly-sick feeling in my stomach when I thought about actually having to go ahead with what I set out to do, the uncertainty of my ability to complete the journey. When COVID stopped all travel outside the UK, my plans took a hit. The world became smaller overnight – so small it really only included Wiltshire, where I live. I’d gone from an all-or-nothing challenge to, well, nothing. Ideas, plans, even talks with sponsors, were pushed into the long grass. Ironically, after finding the South Pole on my own, I felt a bit lost. But gradually I began to see that the adventure can lie in the everyday. I had to if I wasn’t going to lose my mind. I bought a mountain bike for the first time, and began to explore the local off-road routes and tiny jumps. I wrote a book proposal about my journey. In the end, I think that period of quiet gave me to time to reflect on the enormity of what I’d done – being only the seventh woman in history to complete the journey solo, unsupported, from Hercules Inlet to the geographic South Pole. Instead of jumping into another trip, I allowed that to sink in, for it to become part of who I was. And now I’m ready for the next adventure.
A few hours later, I’d be called back to the hospital under the pretense my consultant had a cancellation. He sat me down and told me that I had a brain tumour. It was an acoustic neuroma (sometimes known as a vestibular schwannoma), a low grade, but in my case, uncharacteristically fast-growing, cystic tumour that was growing on the hearing and balance nerves within the confined space of my skull. This explained many of the symptoms I’d been experiencing recently, but not all.
I lost all of my hair at age 2, due to the autoimmune condition, Alopecia. It was extremely hard to navigate not knowing anyone else with my condition. I felt very alone and isolated. I began to wear a wig since I can remember to fit in with everyone else. I never truly felt like “me” but I didn’t know how to be ok with my Alopecia and the emotional roller coaster that was being bald. Kids were extremely mean to me and bullied me a lot for my wig and lack of eyebrows and eyelashes.
I don’t recall much about the call. It was a dead guy, or girl. I helped the coroner collect the body and went outside. It was night-time and the lights from our overheads were swirling in the darkness. I began speaking with another deputy, and suddenly became aware that I was seeing his face as he would look if he were dead. It wasn’t a conscious decision, it just happened. It wasn’t as shocking as one might think. I blinked and even laughed to myself about it, but I couldn’t shake myself free from what I was seeing. It should have been a sign; I should have questioned what I was seeing, but I didn’t. My mind had begun to operate on its own. I should have questioned what was happening, but I didn’t. I told myself it must be a natural repercussion of seeing so many dead people. But it didn’t stop.
Written by Rachel wild I am a survivor of sexual abuse by my own father. Still feels like a taboo subject even currently. Therefore, it is so important for me to speak out. bravely... loudly... so everyone can hear. It was not my fault, sexual abuse is never the victim’s fault, but they carry it like it is.... they carry the shame and the guilt and the anger. The man who was meant to protect me from all evil in the world was the person who damaged me the most. Both parents were abusive physically and mentally, which I still struggle to understand as to how you can hurt your own child. I have been on an incredible journey and life has been made much harder because of this, however it has made me fight hard to do the right thing, it has made me resilient, it is developed my kindness and compassion. It also affects your ability to trust, I have nightmares, I have hyper independence as I have always had to do everything on my own. I went into care at 15, I got my own flat and three jobs at 16 and took myself to night college and studied to become a beauty therapist and Dental Nurse. I have always had a defiance, a drive, a determination to not let what has happened ruin me or use it as an excuse to behave poorly. I strive to do well in life, I have had so much stolen from me, I have a lot of life to live and make up for. I have slowly over the last two years started to process what has happened, I have felt incredible hot white rage, depression, panic, such sadness I have not wanted to go out, grief and loss of my childhood and all the things they stole from me. But I have grown as a person. I do not carry this secret alone, I feel empowered, calmer, more peaceful. It has given me kindness and compassion for myself. I want to help other survivors of sexual abuse, I want them to know life can be good, you can move forward you can heal. For me what has helped me heal, has been unburdening myself and sharing, reporting to the police, friends, support from counselling and specialist services, running, nature, mindfulness, meditation, and yoga and cheese and chocolate! Walking into the police station to report this was one of the most terrifying things I have ever done. What happens if they do not believe me? what happens if he comes and gets me and attacks me? what happens if other people attack me? I had the most incredible Detective, who listened whilst I told her some of the most intimate details of the abuse, feeling so ashamed. Not once did I feel judged, I felt listened to and cared for... and eventually so empowered. Not straight away, I felt exhausted after reporting, scared... I could see him everywhere. I had panic attacks, nightmares, I could not sleep... this lasted for about 12 months, and then eased slightly. It is normal to feel how you feel, it is important to acknowledge it and access help, the Independent Sexual Violence Advisor at the RASASC (Rape and sexual Assault Unit) probably saved my life, as did the support from my friends. If someone discloses abuse to you, be aware of the strength and vulnerability that it takes, you might be the first person they ever tell. It is so important to listen... just listen... please do not judge, please do not tell them how they should or should not feel. Just listen to them and do not interrupt, depending on the situation later ask them if they have ever spoken to anyone.... and would they like to talk to someone who deals with abuse/rape/assault like the RASASC unit. Just telling one person can start a domino effect on the path of healing. You do not have to report to the police, ringing an anonymous line, telling a friend, a counsellor, journaling can all start the process to you feeling lighter and getting on the road to peace and contentment. I reported sexual abuse by my father in 2018, he was being charged on the 15th of September and did not turn up to court. A warrant was issued for his arrest, he was found dead at home. Ten days earlier my Grandad died, he was my only family member so the past few years have been incredibly difficult. The last few months were so difficult, but also because my father is dead for the first time in my life, I feel safe. This will never go away for me, it will always have happened, so it is a life-long journey, it is part of who I am. Please do not tell survivors to put it behind them, forget about it, or move on, it is not that simple. Trauma is complex, I still have nightmares, I still think I see him, I still feel unsafe if out running and there is a man that looks like him. Even though my brain knows I am safe, my survival brain is trying to keep me safe. I have always been a very private person and kept things to myself. One of the things I have found most beneficial and helpful is talking to other survivors. I have always felt very alone and felt no-one understands (and I do not want anyone to have to experience this), especially with it being my own Father. The feelings I have had, and the experiences resonate with others and it has made me feel more understood, more normal almost. No two experiences are the same even if the circumstances are similar due to a multitude of factors, but there are some common denominators which have brought me comfort. The compassion, awe, and kindness I feel for other survivors, is something I have been able to start to apply to myself, which has been difficult. As a coping mechanism I downplayed, minimized, compared my situation, it is a survival technique that trauma victims use. This meant if I made it small it was not that bad, so therefore I did not have to deal with it. I am thankful for our incredible brains; I think it is fascinating how our brain protects us until we are ready to deal with a situation. Due to the abuse, I am a huge advocate of speaking out about abuse and rape and helping individuals to become empowered and hand the shame back to the abusers. I want to raise awareness so more people can speak out Bravely and be heard and supported and access the right help. I am working with RASASC (rape and sexual abuse Centre) this year to help provide training for the police and other agencies in how to help survivors. I am also going to train as an Independent Sexual Violence advisor, because how you are treated and supported is essential for the healing process. I also want to show people that with the right tools and support they can cope, they can have an amazing life....and that life can be great.
My sense of adventure and my love of sports started from a very early age. I grew up in a military family which meant we travelled the world as my Dad was posted from one country to another. I went to more than 15 different schools and lost count of the number of houses we lived in. For many children this is extremely daunting, but for some reason I loved it, I was always on an adventure.
I wrote this letter to articulate how the experience of post-traumatic growth has affected my life and through my own lived-experience, how my friend Pain was difficult to live with for many years. It also highlights how, pain must be present in our lives to experience the beautiful, the pure and the good. Life is a short and yet bittersweet journey, that to appreciate fully will require finding your strength that is forged from within.
It's something that I thought would never happen within my lifetime, I don’t think anyone would have thought the same. For one moment within that initial chaos, it became real that we were to put our lives on hold. Not just that, the whole of life was put on hold for everyone. So all these months later, what have we learned?......or have we? When it was first said it was only going to be 3 weeks in length but those few weeks turned into many months. For most people, everything within their life had to change. They then had to find a way to get through each day. But something I’ve realised that maybe many haven’t was in fact that, 2020 has been the biggest wake up call for humanity. So why would it be the biggest wake up call at all? What I’ve seen was how people had to adapt to this ‘New Normal’ but not just that, they had to find a way to live. I took every opportunity to build and learn. I wrote a book, started a podcast, built a business and expanded my network. But through this time, once again I often questioned a lot of what was happening. We saw a rise in celebrities carrying out morning workouts, focusing on using physical fitness to help us all put us in a positive mental headspace. For once, it seemed that all the things I had been using to help manage my mental health for years was being used to show people how effective it was. Same as going outdoors, exploring the mountains and hills, just to take time out in nature. So did it take a worldwide pandemic for people to actually get up and become active? It seems not just the power of exercise but also we saw, the canals of Venice crystal clear and the smog lifted from the Himalayas to finally see Everest. For once we could see the destruction we’ve done to this earth. But will it last? Absolutely not, it’s not that I’m pessimistic, definitely not. But I don’t have the greatest of faith in humanity at the best of times. Even though, I’ve consistently used my social media to promote positive mental health and for people to think for themselves so they can better themselves. A large majority of people will continue to carry on their usual routines ignorant of the destruction that we’re doing to this planet. Just think of that one piece of rubbish that was lingering in your hand, how powerful that is. Why you may ask, think of that one piece of rubbish, we’ve now got a choice. We can put it in our pocket and put it in a bin and let it be collected to be put in a landfill site to be covered with other millions of pieces of rubbish, slowly decomposing but working its way down to the water table. Or we can drop it with all the rest of the rubbish that another person has dropped, for it to collect and suffocate the seas, pollute the earth, choke innocent animals in their natural surroundings. The choice is yours, but one thing we need to do as a society is have a global rethink on how we protect this planet. Years ago, I came up with a recycling project that was cost effective and which would put an end to landfill sites. I was rejected by Councils and local authorities. It was simple in its approach, filling sealed Olympic sized swimming pool vats with rubbish using chemicals to break down the everyday household rubbish but leaving the materials that could be recycled. But not just that, at every level of the operation, there would be a filtration unit that would clear the rubbish in the chemicals, scrubbed and reused. The factory could be powered by green energy, reducing the carbon footprint. We are slowly choking and suffocating the earth and oceans with all the rubbish from products we consume. It’s a simple choice really, we concentrate on developing ourselves in subjects that are either intrinsically or extrinsically motivating depending on your needs Vs wants but we don’t spend enough time concentrating on how we can all improve the world around us. So whilst we’ve seen that level of self development rise and a large number of people have been intrinsically motivated to create and build a positive lifestyle, there are many that have jumped on the bandwagon and to join in this movement to escape the lockdown blues. So whilst we saw a large number of people out running, cycling, walking in the hills, using this excuse of “Because Boris said we can” what happened when the lockdown was lifted? Did they do it because it was a way to show some kind of compliance or rebellion? How many people actually changed their lifestyles or carried on post lockdown. Did they look at what they needed to become better instead of carrying on being full time members of the Netflix and Dominos club? So if Sir David Attenborough joining Instagram wasn’t enough to show the world that it needs change, that we as a population needs to open our eyes and see the destruction that we’re doing to our planet. Then I don’t know what will make people change. We as a population need to take our level of self accountability to a whole new level. 2020 has been an interesting year, one I hope we all learn from because if we don’t, then it’s only going to get more difficult. Now if I can create a business, write another book, start a podcast to get people talking more, having those important conversations and network on a higher level, then I can’t see why others can’t too. Globally, we’ve got the power to interact and connect to anyone at anytime. So let’s make a positive change, together we can make a change but let’s not carry on being politicians pawns on their global chessboard. If one person can create one positive action, just think of the possibilities of what millions can do?