My ME story has no clear start date, as I am one of the few where it seems to have developed slowly over time though, with hindsight, it is likely to have begun sometime during my early teens. Diagnosis was 30 years later, but with a noticeable increase in symptoms in the last decade. This has been complicated by also having Generalised Anxiety Disorder (GAD), which provided the perfect cover story for the ME, hiding its symptoms amongst the symptoms of the GAD. Only when the GAD had been controlled for a couple of years did the penny drop; ‘maybe this fatigue and pain and brain fog is something else’?
My ME is ‘mild’; I still work full-time, but I have had to change jobs to achieve this. I used to be a college lecturer and departmental manager with a strict regime of hours and a backlog of work to be done at home, but now I work 9-5, 5 days per week in a role where I have reasonable control over my pace of work. On good days I can even do some housework, but generally I can’t and I have to rely on my husband to do all the chores, with weekends reserved for spending time together in the mornings and me sleeping/resting in the afternoon. Bed time is always 9pm.
The continuous aches and pains are the most irritating physical aspect of the condition for me, but I am finding the psychological aspects, the need to accept that past ambitions will have to be shelved, potentially indefinitely, actually the hardest thing to cope with. On a good day, I could take on the world; I can get up, eat breakfast, shower, brush my teeth, tidy the kitchen and be at work early with a cup of tea in my hand before 9am. On a bad day I get up, eat, go back to bed, get up, brush my teeth (sitting down, as standing is too painful), get dressed, sit down again then get to work sometime between 9 and 9:30. These are the days when I realise that ambition is something for the fit and healthy, and that I will happily settle for employed.
Life is not all doom and gloom though, and I am not as miserable as I sound. My life is much quieter than many peoples’, but it is happy. I am genuinely grateful for my ‘mild’ ME, because it is not ‘moderate’ or ‘severe’. For those of you out there who are not as fortunate as me, I am truly astounded by your bravery. Hopefully the future will be brighter for all of us, especially with awareness of invisible illnesses increasing, and I look forward to a time when being fatigued is understood to be a bit more than ‘overly tired’.