M.E. Awareness Week: How M.E. helps me to cope with the sleepless nights

You may not know this about me, but when I was 15 I was diagnosed with M.E., “Myalgic Encephalomyelitis”, which can also be referred to as Chronic Fatigue Syndrome (CFS). It seems rather apt to share my journey with you, being that it is M.E. Awareness week.

Although I wouldn’t wish M.E. on anyone, I can now say that having M.E has helped me to cope with the sleepless nights associated with parenting.

At the time of diagnosis, I knew nothing about what it meant but after a year or two of constantly being unwell, feeling exhausted, recurrent infections, enduring many blood tests, the GP gave me the diagnosis of M.E. Never did I think that I would be battling the illness for a further 10 years if my life.

Before the days of lying in bed in agony, I was the teenager who was full of life and energy, playing various sports at a competitive level. For me, this was the hardest transition to make, as I had to give up the things I loved and which I excelled at.

What is M.E?

For those that are not aware of M.E or CFS, I can describe it as having a permanent or long lasting glandular fever, coupled with the flu mixed with the worst hangover ever. Obviously this is not the official definition, you can find that here.

Whilst there are varying degrees of M.E., each person experiences different symptoms and severity. For me, at my worst I could not walk a flight of stairs with 10 steps, it was too exhausting to pick up my knife and fork to eat and for two years of my life I was pretty much bed bound.

Every muscle and bone felt heavy and in pain, I had tonsillitis every month and at night it felt like I had adrenaline rushing through my blood. It was no surprise that I also developed severe anxiety that usually reared its ugly head at night.

For someone to say that this disease or illness is not real is both not surprising and also very insulting. On the one hand I have never been so unwell, yet no one can see anything physically wrong with you.

Where am I today?

Fast forward to life today, 20 years after being diagnosed with M.E, I no longer to consider myself to have the illness. Some say it is always with you and it is impossible to recover from.

I decided to ignore this prognosis and took matters in my own hands. It took me 10 very up and down years to recover, but that’s not to say it doesn’t affect me now. The main difference is I see it as affecting my life for the good. Here are 5 positive lessons that M.E has taught me and how they help me to with the sleepless nights as a parent.

“Pace Yourself”

If you have suffered or are suffering with M.E., you may have been advised by health care professionals to pace yourself. I remember hating this phrase with a passion. I suddenly had to learn when to stop and how to “spend” my new limited energy. I could no longer do the things I loved and basically that stripped me of my whole identity. I can see similarities with this and parenting.

Although this was at least a 10 year lesson and making many mistakes which delayed my recovery, such as walking too many steps in one day or drinking 1 glass of wine and being sick the following day. This lesson has given me one of my biggest strengths to date. I now know where my “stop” or “pace” line is. I know when I can push myself just a little further and when I definitely need to rest. This is an absolute vital skill when you are a parent but more importantly when you are a sleepless parent.

Opening my mind

I quickly realised that the NHS at the time had no answers for me and could offer little support. Although it is worth saying that this was 20 years ago, so I’m hoping that this has changed for people dealing with M.E. today.

All the NHS could offer me were anti-depressants as they felt I was depressed. I declined these as I felt they were not getting to the root cause of the illness. Instead I started to read books to find out how I could recover, and the one that changed my life the most was Women’s Bodies, Women’s Wisdom by Dr Christine Northrup.

The book is absolutely huge, I could only read a paragraph at a time due to extreme fatigue, but I am so glad I did as this unlocked the door  to recovery that I never would have found. It is not specifically aimed for those trying to recover from M.E, but instead I would describe it as a bible for women who are on a road to healing whether that be physically and/or emotionally

From this point, I decided that the only person that could help me overcome this illness was me, not the NHS and not anyone else. I threw myself into pretty much every complementary therapy, but the ones that were absolutely key for my recovery were a nutritional therapy and reflexology.

If I hadn’t of learnt to be open to finding solutions to complex problems, I believe I never would have been open to seeking the support of a sleep consultant for our first born sleep thief. In turn, I would have never have created and grown a business to support families across the U.K with their sleepless children. That just blows my mind!

My Body Fuel

My diet prior to M.E. consisted of high sugared foods, whether this be healthier high sugared foods such as fruit, white pasta, white bread or unhealthy such as cake and biscuits. However after consulting with a top nutritionist, I quickly learnt that these foods were hindering my recovery.

She taught me which food groups I needed to eat more of and why. I needed to start eating foods and taking supplements which improved my immunity and gut health which therefore boosted my energy.

I changed my diet to include slow release carbohydrates, lean protein and plenty of vegetables. I restricted healthier foods which have a high glycaemic index (GI) such as fruits high in sugar. I eliminated processed sugar, caffeine, gluten and dairy as I realised that I was intolerant to these food groups.

It took a good year of these changes to see a difference and I had to be so strict to start with but within that year I was a different person with a new level of energy and immunity. My pain had decreased, and life improved significantly.

Eating healthily didn’t come naturally when my son wasn’t sleeping, sugar was an instant yet short lived energy. Once I started to pull myself together, my experience of nutrition and M.E. meant that I knew what to eat for my self care.

All you need is sleep

How could I write this without mentioning sleep? During my worst M.E. I suffered with insomnia where I slept for around 10 minutes a night. Clearly, this resulted in even more fatigue and exhaustion, I was in a vicious cycle of overtiredness.

It’s hard to pin point how I overcame my insomnia. Personally, medication has its place, but it made me worse. Looking back, I think it was a combination of improved nutrition, increased exercise (the right type), working on my mindset and hypnotherapy.

Experiencing insomnia helped me with two motivations. Firstly, how important sleep is for your wellbeing, health and happiness, and secondly that nothing was going to stop me from resolving this situation. Even though it felt impossible at the time, there had to be a way to turn this around.

No man is an island

Last but not least, M.E has taught me that there are some struggles in life that you cannot tackle alone. I could read all the books and research online, but it was the expertise and emotional support from all of the professionals I worked with that resulted in me stepping away from this illness.

That is not to say that throwing money at a problem is the answer, the professionals gave me the tools to build the house and I built it.

This is now engrained in me, there is always someone that can help you by holding your hand to navigate the ups and downs of parenting. This gave me clarity to invest my time, energy and money into sleep consultancy, which has totally changed my life for the better! I went from a sleepless, unwell, irrational, desperate parent to sleeping through the night feeling happier and healthier in family life.

Yes parenting is always hard, but it is a lot easier when you are sleeping.

There are my five lessons of how M.E helps me to cope with the sleepless nights. If you are a parent struggling with M.E or have done in the past, why not comment or share your experience.