Invisible Illness

I’ve been living with ME/Chronic Fatigue Syndrome for 14 years. Invisible illnesses like ME/CFS and Fibromyalgia are often difficult to share with people, as there is no one ‘physical’ sign that you are very unwell, and the medical definitions are vague and often rather bleak.

Rather than share my story of how I became ill and the obstacles that I came up against, I thought it might be helpful to share some of the different ways I have learnt to manage my illness, and the lifestyle adjustments I have made to make my own life easier. Over the years I have learnt different coping mechanisms, and I have had to build up a lot of resilience around negative remarks and thoughtless comments.

The most helpful thing I ever did was going to see a Cognitive Behaviour Therapist. It only took 6 sessions of CBT to help turn my entire mindset around. Before I started therapy, I was always anxious about the worst things that could happen. I would worry about making plans to see people and then having to cancel them because I was having a bad day where I felt too unwell. I was worried I would lose my friendships and I worried all the time that my friends would think I was unreliable or didn’t care enough. I also wanted to go back to work but I was terrified that I would be too unwell, or that I would have too many sick days and would get fired, or be thought of as someone who never pulled their weight (I had been very ill for the first 6 months and was unable to get out of bed most days). Attending CBT helped me to map out each scenario that I was worrying about, and gave me a clear picture of the ‘worst’ and ‘best’ outcomes, and then the ‘middle ground’ in between these two things. Once I had learned to recognise these outcomes I was then able to build a coping strategy for each scenario. It doesn’t sound like a lot when I write it down, but for me it was a lifeline. It was a logical and practical approach to managing a very emotionally draining and overwhelming illness.

There were two other things I learnt about during CBT I still use to this day. The first was building things up slowly and having little breaks. When I finally went back to work I managed to get a job that I loved, and that only required me to work part time. For the first year I could only manage working 4 hours a week. During these 4 hour shifts I was advised by my therapist to ask my manager to make the adjustment to my working day where I got to have a 5 minute sit down break during every hour that I worked. I was to spend these 5 minutes ‘recharging’, so I would listen to music or read a few pages of my book. It sounds like such a small thing, but these 5 minutes made my shifts so much easier, and I was better at my job because of them. As I built my working hours up over the years, I kept the 5 minute breaks in my routine. Each year I doubled my hours, and finally, after 5 years I was able to work 35 hours a week. I still struggled with ME flare ups, but I was lucky enough to have a caring boss and to work in a team of kind and compassionate people.

The final thing I learnt about during my CBT was Sleep Hygiene. This has had the biggest impact on my life, and it is one of the things that I am most passionate about when I coach clients now. I make sure that my bedroom is free from lights in the evening (so no stand by lights on the TV, and my mobile phone goes on aeroplane mode between 9:30pm and 7am). My bedroom is kept at a comfortable temperature and I try to keep it clutter free. I go to bed at the same time each night and I try to get up at the same time each morning. I try not to watch TV in bed in the evening, and instead I wind down with a bath and I read a book. I don’t have caffeine after 2pm, and if I’m noticing that I am becoming reliant on it to get through my day I take a break from it all together.

The last thing that I try to do in the hours before bedtime is to move my body gently, which is usually yoga or stretching.

I’ve had to make other adjustments to my life since getting ME/CFS, and they have involved me creating some strong boundaries in my personal life and in my work life. There has only been one time that I have let these boundaries slip, and the result was a relapse that led to severe burn out. However, I’m thankful for this as it taught me an important lesson about putting myself first, and it is what drove me retrain to become a Health Coach

Flippin' Pain is a public health campaign supported by @NHSLincsCCG @oylincolnshire & @ActiveLincs which aims to raise awareness & bring a better understanding of the problem of persistent pain to the population of Lincolnshire

Visit www.flippinpain.co.uk to find out more

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If you would like support to make healthy lifestyle choices visit www.oneyoulincolnshire.org.uk and register for free today to speak to one of our Health Coaches.  

The information and advice within this blog are not intended to replace any medical advice, with all our clients we seek to address their individual needs and circumstances - this includes any adaptations required for long- or short-term health conditions and medications. Please seek medical advice if you have any health conditions before considering a lifestyle change. If you would like to address any of the content of this blog, please email us at hello@oneyoulincolnshire.org.uk 

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