ME Awareness: The Lost Years: Missionary forced to give up vocation to do battle with ME | 18 May 2020

The Lost Years by Selina Greenow.

I graduated from the University of Edinburgh in Geography with Environmental Studies and lived in Glasgow for a year before moving to Nantwich, eventually becoming the Environment Officer for Cheshire Fire and Rescue Service. 

 Then, in 2012, I joined Operation Mobilisation, to serve onboard Logos Hope.

The ship was in an extended dry dock, so my initial work placement was in the engine room.

I then moved to the Bookfair where I was responsible for product placement and looking after my book areas. 

During my second year onboard, I joined the LineUp team, going ahead of the ship to book and organise the ship’s visit to a particular port.

My ports were Hong Kong and Busan, South Korea. I returned to the Bookfair for my remaining time onboard.

In January 2015 I moved to Athens, Greece to work as a volunteer for the OM Greece team. I was the Communications Officer for the team while also learning Greek, teaching English and assisting at Threads of Hope.

Threads of Hope is a sewing business in Athens, Greece, with the goal to bring freedom into the lives of women who have experienced exploitation and abuse.

Through training and employment Threads of Hope provides opportunities to rebuild their lives.

During my year in Greece I had several severe colds, lost my voice twice and had a severe gastric illness which I have never fully recovered from. I tried to keep going even though my body was telling me to stop.

I think that as a missionary you feel that as people are financially supporting you, you can feel guilty about taking sick days.

Sickness leads to return to UK

In January 2016, Janice came to visit the OM Greece team as part of her care duties. We had a one-to-one meeting and I said how tired I was all the time and that I didn’t really feel like I was fully better after illnesses.

The previous day we had had a 2-hour team meeting and it exhausted me so much I slept for a few hours after I got back to my apartment.

Janice said “Selina that’s not normal! Take 2 weeks off to rest properly.” And I never went back.

My Greek teacher turned into my medical appointment translator as I had various tests, scans and bloods done.

My Greek doctor could see there was something wrong but, apart from raised inflammation markers, there was nothing to point to a particular illness/virus. The next step would’ve been to admit me to hospital.

It got to the point where I was no longer able to look after myself. My friends were bringing me meals and helping with laundry, changing my bed and cleaning my apartment but it wasn’t a long-term solution.

We, the OM Greece leaders and I, decided that I should return home and stay with my parents for a few months to rest and recuperate.

So, on 6th March 2016 I returned to the UK and I’m still here! It was my 4-year ‘sickaversary' yesterday! 

We think I’ve had mild M.E. (myalgic encephalomyelitis) since a very severe flu episode when I was 16 and was almost hospitalised.

Following that I developed IBS, contact skin dermatitis – a reaction to nickel – and I started needing to sleep for a few hours after school before I could even think about starting on my homework or doing anything else. 

So, for last 4 years I’ve been pretty much completely housebound and mostly bedbound.

I realised in the April of 2016 that I couldn’t have consecutive medical appointments after I ended up needing help to turn over in bed and to go to the toilet.

I started implementing pacing techniques which I think has helped me to maintain a sort of baseline of activities I can manage on a daily basis or when scheduled. 

• M.E. diagnosis – December 2016.
• Fibromyalgia – December 2017.
• Addison’s Disease – suspected December 2018 and diagnosed in April 2019. 

What is the practical reality of being housebound? What sustains me?

I guess my Christian faith sustains me even though a lot of the time I feel like I’m just holding on with my fingertips.

When you know people all over the world are praying for your health, but it still doesn’t improve, it’s hard. But also, those same prayers are lifting me up and helping me in ways I wouldn’t have thought of. 

I was pretty much confined to my bedroom at Mum and Dad’s as I couldn’t manage the stairs. I called them my Mount Everest.

Whenever I had to leave the house for an appointment my parents would need to physically lift each leg to help me up each step afterwards.

And I would be in recovery for at least a week, barely able to sit up to eat or go to the bathroom.

I was thinking, “Is this it? Is this how I’m going to be spending the rest of my life? Stuck in a small bedroom in my parents’ house?”

As someone used to living on my own and abroad and having independence, it was tough to contemplate.

So, I tried not to dwell on it and I learnt to appreciate the things I could do: crafts, creating, sending cards/parcels, connecting with people via social media, and taking photos out my window.

When we realised that it was unlikely I would get better any time soon, we approached Social Services/Occupational Therapy to see about getting help to install a stairlift.

At that initial meeting in January 2018. Holly said, “How would you feel about being supported to live on your own?” I burst into tears! I didn’t even think that was an option for me.

Ground floor disabled access social housing is incredibly difficult to come by. But again, in answer to prayer, Holly did an Environmental Assessment on my own flat which I thought I would need to sell (it had been rented out while I was abroad) and said I could move back there!

It would be a trial initially to see if the care package etc. was working OK and if I could cope.

I moved back into my own flat in June 2018 and Willow Bluebell moved in later that month.

She’s an amazing companion cat and I call her my therapy cat too! She’s quite quiet and is happy to snuggle away the days.

She doesn’t even meow much as she chirps to communicate which is definitely better for my noise sensitivity issues! She’s very funny too and makes me laugh every day. She’s a favourite with all my carers. 

Over the last few years, I’ve made a list of hopes and dreams for the year rather than New Year’s resolutions and it’s been amazing to see how they’ve come to pass. 

Last year I launched my craft shop Oak & Robin. I love being creative when my chronic illnesses allow and making personalised cards and gifts for my family and friends. 

Life through a window

If all started with the tractor photo. I knew my niece and nephews would love to see it, so I took the photo for them. The tractors were cutting the grass for silage. I knew that over the next few days the grass would be gathered and then collected and then taken away by trailers.

I realised that the moments I was seeing out the window everyday could be photographed and would tell a story of the ever-changing canvas outside. It’s true that being housebound makes you enjoy and appreciate the simple things and because you can’t rush so if I see something that catches my attention I can stop and watch.  

Also, you might think nothing much is going on but if you intentionally look you become aware of the details. It can be fun, trying to learn which birds are visiting my bird feeders and watching how the different birds interact with each other. 

I realised a year had passed and I thought I’d make a photo book. I loved that process too – deciding which pictures to include, different layouts. Putting photos of the Acer tree in chronological order to show the vibrant red leaves forming and then falling off to scatter on the ground. 

It’s a way I can still connect with the world around me and enjoy creation even though I’m mostly only viewing from my window.

When I do go “outside” it’s normally for hospital appointments – actually one of my hopes and dreams for this year is that I’ll be able to leave the house for non-medical appointments – and I love capturing the scenes and changes I see along the journey.

I am grateful for the views from my bedroom at my parents and the views from my own flat and that living here means even hospital trips have opportunities to see nature and the seasonal changes.

I’ve only made one photo book so far but I’m in the process of sorting photos for 2018 and 2019. I’ll have 2 from my parent’s windows and however many I end up with at Riverside. My photos have also helped other people who are housebound as they enjoy seeing the views, activities and changes too. 

ME Awareness

We have a fantastic online community. There are lots of pros and cons to social media but being able to connect with other chronic illness warriors is definitely a huge positive. 

I really feel that in the last few years, awareness of our condition, what the reality of living with M.E. means and why we so desperately need more funding and research has gained real momentum.

But we are nowhere near where we need to be. That’s why we need people like you, our healthy allies, to help us lobby parliaments/government bodies/NICE etc. to take positive action. We need funding because until we know what causes M.E. we can never have a cure.

ME Awareness Month – May 2020

The Lost Years

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