Accepting ME by Shantel Palmer

01st February 2022

Shantel Palmer accounts her journey with M.E. and showcases her beautiful artwork.

I first noticed something ‘wasn’t quite right’ in 2011 when I was 34 years old. Around that time, I was active, fit and (I thought) healthy. I was an avid runner – running many miles a week, swimming and using my home gym; I was in the best shape I’d ever been in and I felt pretty confident both physically and mentally.

Over the course of a year or so, I started to struggle, particularly with my running. At first, I thought I was lacking something in my diet so I looked into magnesium deficiency, and was convinced it was that, so I started taking supplements and carried on. Nothing changed. I added in other vitamins, cut back on the distance slightly – I even went to the doctor’s and asked if I could try an inhaler because I felt out of breath, like I wasn’t getting enough air into my lungs! I tried in vain to carry on, but over the following few months, as well as feeling out of breath, my legs started to feel heavy like lead and I could no longer run consistently. I walked up hills I had previously run up with ease, I couldn’t even manage a flat terrain or the running machine. Slowly but surely (after many attempts of stopping and then re-starting a few weeks or months later), I had to admit defeat and quit altogether. I was absolutely devastated, but more than that, utterly confused as to why I felt so exhausted – for no apparent reason! For a while I continued with other activities and replaced my running with walking. It was easier, but just like the running, it slowly became more and more difficult. The distance I could walk got shorter and exercise became a chore; it was no longer enjoyable. The adrenaline rush or buzz that I felt after exercise was replaced with exhaustion, depression and despair.

After a while, with no improvement (despite cutting back on my activities and eating a healthy diet) I decided to get my bloods re-checked. They all came back normal. How could this be? I actually wanted something to come back raised or deficient because at least then it could be treated! My then general practitioner said, ‘You’re healthy, nothing is wrong. You’ll just have to push through the fatigue.’ Great advice for somebody with M.E. right?! Even if I didn’t know it at the time…

So where do you go from there, when you’ve had everything checked and told you’re healthy? You tell yourself you’re healthy and try to carry on, and you even believe it for a while. I started to think that maybe it was all in my head, maybe it was just my existing anxiety and depression? Nothing had happened to trigger this exhaustion – I hadn’t had the flu or any other virus, and I wonder if that’s why the medical profession didn’t even consider M.E. to begin with. I certainly didn’t, because at that point, I’d never even heard of it!

Three years later, 2014, and things had progressively worsened. I wasn’t just feeling fatigued, I was also noticing my thinking was fuzzy and I was forgetful and couldn’t concentrate. I felt nauseous, I ached, I noticed a sensitivity to food and to medications I had previously been able to take, I experienced what I can only describe as internal vibrations (like standing near a washing machine on spin!), insomnia, a ‘drunken’ feeling made worse by even attempting to drive, and I was also sleeping during some of the day because of my exhaustion. I was struggling to work (I worked for myself making wedding cake toppers) and reduced the amount I was doing as deadlines were adding to my overall stress – there were days I simply couldn’t do anything at all. My depression sky-rocketed and my anxiety magnified. The activities that helped with my depression, that boosted my confidence and helped my anxiety were taken away from me, leaving me feeling worthless, unhealthy, overweight and unable to take antidepressants. I felt suicidal – a feeling that has stuck with me over the years. I couldn’t even tolerate alcohol, so drinking myself into oblivion wasn’t an option either.

I was finally referred to see an endocrinologist, who tested for other issues such as Postural Tachycardia Syndrome (PoTS), Multiple Sclerosis, Addison's Disease. I also had an MRI on my head to check for any problems that would explain my clumsiness. Nothing. Nothing again!? I was told that the only explanation for my symptoms was Myalgic Encephalomyelitis. By this time, I had done my research and knew what this was, but immediately dismissed it. I had convinced myself at this point that the problem was my thyroid (you can find answers to all your health problems thanks to Dr Google). I started to self-medicate with NDT (natural desiccated thyroid), convinced that I would feel better. I didn’t feel better, not even slightly. It was suggested that I attended the NHS M.E./CFS clinic but I declined. I wasn’t going to accept this diagnosis and I felt, at the time, that it was just an umbrella term that was given when they just didn’t know what was wrong with you. Also, attending anything with social anxiety is torture in itself! And besides, where would I find this energy to go in the first place?

In 2016 I was also diagnosed (purely by accident after being sterilised at the age of 40) with stage 3 (moderate) Endometriosis, which at least explained the severe pain I had experienced since the age of 21 (19 years of visits to the GP, A&E and being told I had urine infections and Irritable Bowel Syndrome). The Endometriosis is somewhat ‘controlled’ with the Mirena coil, opioid painkillers, hot water bottles or basically crying and putting up with it. My mental health plummeted into depths I’d never experienced before. I knew that I had to accept the diagnosis of M.E. (and my new endo diagnosis) because until I did, I was never going to be able to adapt to the new me and the new life I was now living.

I’m now 45 and I do finally accept that I have M.E. because I have to for my own sanity. The alternative is driving myself crazy trying to find a cure, or trying to understand why this has happened. I accept that it seems unlikely I will get better, or be able to do the things that I used to. I almost mourn the old me, but one thing that gets me through and gives me a purpose in life (apart from my family and my lovely dog and cat who are always there for me when I am unwell, and also when I look like I have been dragged through a hedge backwards!) is my art. I never made it to art college because of my social anxiety, and actually gave up drawing when I was 16, only taking it up again a few years ago. Art gives me a sense of purpose, and I when I complete a piece I feel a huge sense of achievement, much like I did when I’d completed a run or a workout! It does take it out of me, and I know that I should pace myself but never seem to be able to. Once I start drawing, I find it difficult to stop until it’s finished (the perfectionism and stubbornness kicks in!). Then it almost feels like somebody flicks a switch, and I what energy I had is gone and I’ll spend days – sometimes weeks – exhausted and unable to even pick up a pencil. I can only usually draw in the mornings, as this is the time I have my little bit of ‘battery’ to work with.

You can view my artwork at Shantels Pencil Art.

Chronic illness has forced me to take a different path in my life, but I need to remind myself on a daily basis that it is not something to be ashamed of. It isn't my fault. My illness isn’t who I am, but it does control what I can do.

I feel acceptance is key to finding a way forward and creating a new path, even if it is very different and slower than the one you imagined. Not being able to do as much as you used to, or as much as others, doesn’t make you a failure. If you define yourself by what you can’t do rather than what you can do, or compare yourself to others or your old self, you will drive yourself crazy. All anybody can do is their best, and sometimes that just means simply ‘being’. It’s ok if all you do today is survive.