ME Awareness: “ME is a cruel illness and whether we have it mild or severe, we all still suffer,” by Naomi Gilchrist | 15 May 2020

May 15, 2020

The Symptoms of ME by Naomi Gilchrist.

M.E varies from person-to-person and it affects each person differently. My main symptoms and the way in which they affect me, may be completely different to another person with M.E. We are all unique in that way.

Naomi Gilchrist.

But, regardless of what symptoms and experiences we have, no one suffers more or less than another person.

M.E is a cruel illness and whether you suffer from it mildly or severely we all still suffer.

Some symptoms of M.E. are pretty much a constant with me, for example fatigue, cognitive difficulties and different types of pain which are always there to one degree or another. Other symptoms come-and-go.

Both my persistent and my occasional symptoms are incredibly unpredictable; I can never know what occasional set of symptoms I will have or how bad each symptom will be.

Add to that PEM or PENE – Post Exertional Malaise or Post Exertional Neuroimmune Exhaustion. The latter when I heard it fitted well with my experience as when I experience PEM/PENE my immune system symptoms do flare up big time.

But with PEM/PENE I never can predict how bad it will be other than I know I will experience it after doing any sort of activity and even after the same activity I will experience different degrees of aftereffects.

Symptom Management

I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.

I find giving my body a routine helps but like today that routine got thrown a little as I struggled to get out of bed, and I was more fatigued than normal all morning despite sleeping well for a change. 

I can usually manage to do an activity for 30-60 minutes depending on the activity and I find putting a timer on helps me to not overdo it. I also have designated rest periods in the day which just gives my body time to pause before I carry on. A good sleep routine I’ve found is also important.

But what works for me might not necessarily work for another person, our bodies, and our M.E is unique to us and it’s about listening to our bodies and a case of trial and error to work out what works best.

Professional help, such from an Occupational Therapist can help with working out how to manage my day and working around my symptoms and level of functioning. I have to adjust my day a lot because of my symptoms like I had to do this morning.

Other things like physiotherapy I’ve found to be important especially for when I am less mobile and to help when I start to recover and as maintenance for my functional ability.

I try other things to help with my symptoms like mindfulness/meditation – I particularly like a colour meditation I found on YouTube.

Other things like using a TENS machine (if my body can handle it) and my heat pad as well as distraction from what my body is experiencing.

  • My worst symptoms are probably the PEM/PENE as I don’t know how bad it will affect me – will I be in bed for a day or a week?
  • I also find the cognitive dysfunction difficult as it affects me in so many different ways – poor memory, difficulty finding words, poor concentration, difficulties starting tasks etc.
  • The persistent pain and fatigue are also difficult symptoms and the ones I find hardest to manage, especially the fatigue.

Living with ME

Help with M.E. symptom management by Dr Charles Shepherd. Free to download until the end of May!

My advice to those seeking a diagnosis is that you might not necessarily fit nice and neatly into the tick box for M.E, but that doesn’t mean that you don’t have it.

We are all unique in how this illness affects us; what’s important is how you experience your symptoms and how they affect you not just physically or socially, but emotionally too.

In terms of aids my wheelchair has helped me so much and so has my electric bed as I can now raise myself up in bed more easily.

My bath lift also helps as transferring on and off my bath board became too difficult. I find laying in the bath to wash easier than showering.

I’ve had a lot of problems obtaining a care package and it took me a number of years to get one. Before, I had to use my precious PIP allowance (which most months I completely use) to privately pay for care.

I’m sure not many people in their 20’s or indeed any age wants to spend their money on getting someone to wash them!

My Dad helps me, and he has become very good at washing hair (I think it makes up for his baldness!) and my family help with meals and housework as I don’t have the energy to do it.

I don’t like being on ESA, I rather be in education or work but my health for now, and for a long time before, hasn’t allowed that. I also don’t like the stigma that comes with being on long-term sickness benefits.

My advice is if you are struggling to get care, to navigate the care system, or to get an accurate diagnosis, is to find an independent advocate who can help you get your voice heard and support you in getting the support that you need.

ME Awareness Week Monday 11th – Sunday 17th May 2020

Visit the ME Awareness Media Toolkit and download posters and graphics.

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