M.E. myself and him – Part 2

A brief background

I was single when I became ill and I remained that way for the first four years, the most severe years, of my M.E. journey. I was living at home with my parents and youngest brother. I rarely tasted independence. Even when driven the ten minutes or so to see friends, my parents remained on standby, often waiting locally rather than going back home to wait until it was time to collect me ‘just incase’. A few friends had my mum’s number ‘just incase’. Even by 2014, I could rarely drive and was still building up to driving short distances and then doing an activity (holding a conversation with a friend, for example) before driving myself home again. When I look back, dating seemed rather ambitious on my part actually!

Meeting Mr Tree Surgeon was my first experience of dating with M.E. and was infact the first time I let anyone new into my life (outside of the M.E. Community) since having M.E.

I did go for coffee with a friend of a friend early on in 2011 but coffee was all it was. He walked so ‘fast’ back to the car that I confess my tone of voice may well have been far from jovial after the fourth time of asking him to slow his pace. Perhaps he’d not enjoyed the chat over coffee and so was desperate to rush home. In truth he was just walking a normal pace, while my pace was/is much slower.

How did I meet Mr Tree Surgeon?

Online. After a healthy friend’s success of an online dating site, I decided to do a little experiment and see if I might have any luck with dating whilst still very ill and restricted. I joined Plenty of Fish at the end of November 2014. I was largely housebound, perhaps leaving the house once a fortnight/once a month for a maximum of a few hours. And so while I had never imagined I would partake in online dating myself (honestly the idea of it was not my cup of tea) it was farcical to think I was ever going to meet anyone any other way.

My online profile

It was suggested that I didn’t just use selfies on my profile. More natural photos would apparently set me apart from the majority of other profiles on the dating website. Trouble was I was rarely in a position to have my photo taken. And I’ve always been the one behind the camera. I didn’t want to use pre-M.E. photos of me out and about or clubbing or on the beach. They were more fake than any staged and filtered selfie was going to be. In the end I used a mix. I had a couple of me in recent group shots (from Christmases and the like) that I could crop, and then I used selfies I already had on my instagram page.

In the part of my profile where I could write a little about myself I stated that “life hasn’t quite gone to plan since leaving university.” The understatement of the year perhaps. But that one line really helped lay the foundations for opening up about the realities of my health and my life. I also said “currently not working” (in truth it had been over four years since I’d been able to work.)

Hobbies and Interests. What are those?!

It was Interests and Hobbies that were the main focus of any initial conversations. As someone who had had every corner of their life impacted by their health it was actually hard to think of things to say. And for me, it was tinged with sadness that my usual hobbies were impossible. I still had the desire to do them though so I talked about them. Simple. I mentioned my History degree and my love of all Disney Pixar films. Baking. Teaching myself to sew. Reading.

When asked about sport I replied that I’d become a spectator rather than a participant but allowed myself to talk freely about how much I’d loved being put forward every sporting event at school. To me, more then than now, those things were still the essence of who I was.

Mentioning M.E.

I remember describing my health as “dodgy” when explaining why I was currently out of work, or why I was no longer as sporty as I was once was. When asked, I told them I had Myalgic Encephalomyelitis. Over the years I’d swiftly learnt that the letters M and E could bring out the worst in people. I remember Mr Tree Surgeon’s response being something along the lines of “So is that musclar pain and spinal inflammation?” Blimey! Sold to the first bidder! I joke. But I’d never met anyone who even tried to decifer the meaning of those two words before.

Other contenders

It quickly became clear who had bothered to read my profile and who hadn’t. As someone with very limited energy, and rather high standards, anyone who hadn’t or anyone who merely said “Hi. How are you?” didn’t get a reply. Sorry not sorry. I remember Mr Tree Surgeon’s first messaging commented on my line of life not quite going to plan. While he didn’t jump right in there and then and make me elaborate it felt like a promising sign.

I shared my number with Mr Tree Surgeon and three others. All had been told my health wasn’t great and it hadn’t made them run a mile. I told them via text that it was Myalgic Encephalomyelitis that was the reason for my illhealth. One was swiftly blocked after a few messages after it became clear he was only interested in knowing whether M.E. affected my abilities in very specific areas! No dates were ever arranged with the remaining two other contenders.

Sharing the realities of my health

It would have been impossible to pretend I wasn’t mostly-housebound or that my life wasn’t heavily impacted by M.E. (That said, I had reached a certain level of ‘wellness’ that allowed me to even consider dating in the first place. It is vital people know that someone with a chronic health condition needs that certain level of wellness.)

I wanted to find the balance between being honest and upfront about how M.E. affected my life but lighthearted enough that it didn’t stop any conversation in its tracks. I felt no need to lay it on thick from the get go. I did have to make it clear that our dating experience could never be conventional though.

As Mr Tree Surgeon suggested dates, I had to try to explain that while I thought he was lovely and I was keen to meet up, I absolutely couldn’t go out in the evening/go to the cinema/walk around a Christmas market/sit in a noisy pub. Because his suggestions were such normal, mainstream date ideas the limitations that M.E. placed upon my life had to be discussed before we’d even met up.

A little bit at a time

We’ll talk about our First Dates in Part 3 but I’ll say now that, although we met in December 2014, he didn’t see me in my wheelchair until July 2015. I simply avoided doing anything that would mean I needed it. At the time I didn’t use it for daily life, unlike when I needed to be wheeled to the toilet from my Dining Room bed.

By that time we’d already met each others families and even spent time away with them. (We can come to that later. T’was a MASSIVE deal for me.) Rightly or wrongly, it felt like far too big a test. I don’t agree with my reasoning on that anymore, but my self confidence and self worth is in a very different place now.

I also stalled for as long as I could when it came to staying over at his house. At the time I was having issues with bladder control (which I absolutely did not want to admit to) and the sense of vulnerability when first waking up, being unable to talk or move for sometimes an hour, was too terrifying.

Allowing him into my life was absolutely the bravest thing I have ever done. Ever. As I said before back in a 2015 blog post, he could have called it a day at any time. And whatever the reason for him doing that, a part of me would always have thought it was because of my health or my need for extra help or mobility aids. While some things went very quickly with us, others were slower and parts of my health and the limitations it placed upon my life were shared as and when they came up.

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Part 2 of a new blog series M.E. myself and him.

I will never tell anyone else to “Never Give Up Hope” with regards to meeting someone like I have. I find it patronising and offensive; we can only ever comment on these things from within our own experience. I’ve never understood why others feel so confident in making statements about how “It Could Happen For You Someday Too.” For a start you have to feel physically well enough to start dating. I hope it does happen for you if that’s what you want. I hope just sharing my story might give you a glimmer of hope but we can talk about it all another day if you like.