Six photographs about losing myself in ME/CFS

From my photo project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome. I'll continue to share mini series as a flavour of the broader project.

Please note that ME/CFS affects multiple bodily systems and symptoms are not uniform between sufferers, and nor from one day to the next. I’m not trying to be representative of all forms of ME/CFS here, but to offer a basic flavour.

Shadow of myself

The vagueness, absence, emotional fatigue and disconnectedness - compounded by the sense of grieving for a life and future seemingly lost - is emptying. You become a living shadow of yourself.

Tired but wired

I rarely look in the mirror these days, but when I do I am often shocked as to how tired and ill I look around my eyes. It's a reliable barometer for how I'm feeling. I do find it easy to get a bit dehydrated - so have to watch for this. I really need a new pair of glasses, my frames are about seven years old, one lens is cracked and the prescription is likely out, but I've yet to get it together and make it to the opticians.

Where I sit, a lot

I can spend hours sat here, listening to a podcast, watching telly or doing some work - depending on capacity. We've only had the sofa around one year and it's already showing the impact of my inactivity - this side of the sofa has a dip in the seat cushion, so I now have to alternate with the other side.

Inactive

I used to be so active. I didn't really compete in running, but did manage the Bristol half marathon in 1:47hrs, which is half respectable. Currently housebound, the weight is creeping on - I've gone up three jean sizes in as many years. I've had to make my peace with this phase of life, as it hopefully won't be forever. I really miss using my body, feeling healthy-tired from a good workout.

Micro immunotherapy hope

It was found that my immune system was in imbalance, over-working and not returning to balance. Micro Immunotherapy is a mature low-dose (but much stronger then homeopathy dosage) therapy for rebalancing the immune system. It works by sending messages that get the immune system to work in normal and healthy ways and patterns. Brain fog meant I struggled to understand how best to take these - in the specific order - but I've got a handle on it now, after two months!

Missing being active

I really miss cycling. I miss the feeling of sailing along, climbing, navigating, seeing the world in all its delights and struggles glide by. I miss the flow state. I miss flying down a good descent. I miss the exertion, the happy-tired and glowing legs, the boost in mood a few hours later and the ability to eat like a horse.

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Your feedback and shares are very welcome - I’m keen for this project to now find its audience within the ME, Long Covid and chronic illness communities.

I made these using the reflection in the TV panel from sunlight coming into the room where I spend 99% of my waking hours. I'm not yet sure if these will stay in the main project.

You can also follow along via my Instagram, Glass, Bluesky and Mastodon accounts.

Millions missing

It’s thought 17-24 million people world wide suffer with ME/CFS, also impacting their family, carers and community. 50% of Long Covid sufferers meet the diagnostic criteria for ME/CFS.

You can read more at; https://me-pedia.org/wiki/Myalgic_encephalomyelitis

Currently many (most?) sufferers have to navigate an often under-informed health system, self-advocating whilst also being seriously ill. Further, many sufferers have to self-fund treatment, supplementation and adaptations privately where there isn’t public or insurance provision, or sufficient welfare support. ME/CFS has a ‘quality of life score’ considerably worse than many other diseases, yet receives a fraction of the funding, education and awareness.

There is not yet a single ‘silver bullet’ cure. It’s a complex multi-factorial condition, but it *isn’t* acceptable for health professionals to relinquish their medical curiosity at the point of diagnosis. This is when their medical curiosity and motivation should kick in!

Health improvement may be found through identifying and alleviating contributing and compounding health factors and managing symptoms effectively.

Recovery can be elusive and protracted. Sufferers may live with the condition for months or decades. Some become house or bed bound. Others make a more full and/or faster recovery.

More funding to find a cure is urgently needed. Better education for the health system is urgently needed. Community groups will welcome any support you can offer meanwhile.

If you know someone suffering ME/CFS or Long Covid please do offer to stay in touch, in spite of them seemingly withdrawing from your normal means of contact. They will really appreciate it :)

Thanks for reading!