There was a time not so long ago when I felt like I was failing in my awareness efforts.
Despite years of blogging and sharing online, some of the keys points I thought I’d been making weren’t sinking in.
The fact is, few of the people that I started my blog for read it now*. Life goes on, it gets busier and it changes. Some feel they have nothing new to learn. They get it, I’m ill. For most, it upsets them to be faced with my reality. They have the Old Anna to compare this current and ‘new’ version with.
They tell me they find it miserable and draining to read my blog posts. I’ve been told that perhaps if I shared more of the positives, the days I DO go out, more guinea pig content, things I HAVE achieved, that they might read it more. I thought I was sharing those things…
I am simply sharing my life with M.E. I don’t pretend it’s any better or any worse that it actually is.
While I see hope and resilience, they see only sadness and negativity. What I see as realistic, they see as pessimistic. I see my blog and my social media pages as a celebration of who I truly am, now.
M.E. has changed me, or at least brought out and highlighted what are now my favourite bits of myself. Not everyone can see that. They see only sadness at me having to live a life so different from theirs. They can only watch and wonder how someone can possibly be happy in a life dominated by illness. I’m not sure how often I have to tell people that my life is good, if a tad hard, but they’re still not convinced.
I don’t write or share for recognition. I do it because I want to and I can and it helps me.
And then there’s you. Those right here. Oh you! I appreciate you and I feel your appreciation in return.
For my awareness raising efforts to be noticed, acknowledged and appreciated means a lot to me. I recently found out that I’ve been nominated for two WEGO Health Awards; one as a Patient Leader and one for Best in Show: Instagram. You can see my Profile here.
I consider myself to be small fry, as they say. My Instagram feed is not some beautifully curated, well planned out, scheduled content creation. I want it to be real and I want it to be me and I want it to be relatable and digestible. Not too fluffy but not too gloomy either. Just real.
There are so many people within this community doing fabulous work, and with such a precious and limited supply of energy and usable hours. I consider them to do far more I do. I am not able to keep up with or digest the latest research studies or articles that are published about our health condition.
And yet I have been nominated. Twice.
The internet is such a big place and yet you’ve found me here and you’ve stayed with me. So many people still share my words with their loved ones when they feel unable to express a certain point. It is quite simply the greatest honour to lend my voice to those unable to use their own for whatever reason. Every message and comment I receive from you all is treasured and savoured.
You have made a really rather poorly person feel giddy with joy that you think I’m worthy of such an accolade.
I am so grateful. Thank you all for being here with me.
*There is no anger here. Perhaps a little disappointment, but it’s not intended as a dig at anyone.
The longer I go into my M.E. journey the more I think that anyone trying to do anything when they have this condition is incredibly brave. The repercussions we get from daring to try to pass the time with any kind of activity can be incredibly demoralising.
Since June I’ve been trying to make bunting for my nephew’s first birthday knowing full well that using my sewing machine is one of the things that exacerbates my symptoms more than anything else.
I taught myself to use a sewing machine, having been absolutely dreadful at textiles at school, when all of my previous hobbies came to be beyond my reach. I hadn’t used it in 18 months or so until this project because it’s just not something I’m able to do often. When it goes well, I enjoy it. But it so often doesn’t, because it requires a level of concentration that is rarely available to me.
I haven’t been able to work on this project every week, never mind every day. The process has been slow. So slow in fact I didn’t think I’d get it done by my nephew’s birthday on 8th August. Enter Mr Tree Surgeon to help out (there is so much to do before you even sit down to se a sewing machine – measuring, cutting, ironing…)
Look! I’ve done it. With days to spare so I can recover and rest. I am absolutely chuffed with myself!
Our second date had to be slightly unconventional too, just as our first time meeting had been. I wasn’t well (well I never am but hopefully you get my meaning.)
We’d met on the Monday for the first time, and he wanted to see me again on the Friday. He wanted to take me out for a meal. How to come across as keen to see him too but simply unable to do?
I was obviously experiencing ‘payback’ or Post Exertional Malaise after our first ‘date’ and driving myself home from his house afterwards; the furthest I had driven in years.
I was largely housebound, perhaps leaving the house once a fortnight/once a month for a maximum of a few hours. So to be seeing him twice in one week was not my normal level of doing things.
You know what? I went for it. I properly threw him in at the deep end. If he really was keen to see me, the real me, then it would have to be on my terms. I simply was not well enough to go out for a meal. I could not leave the house or drive to see him. He would have to come to me. And in doing so, he would have to witness some of the Post Exertional Malaise I was experiencing as a result of being out the house on the Monday.
Sink or swim time, so early on!
The relationship had no future if I wasn’t myself. If I pretended I was fine (which I was too unwell to do) at what point would I come clean and end the pretence?
I lived at home with my parents and although he knew that, I was reluctant to have him come over while they were they. I felt too much like being a teenager again. I was 26. My parents were going out (to a fancy dress party of all things) and so it seemed like a good evening to have him over.
I remember my parents running late and really hoping they’d have left by the time Mr Tree Surgeon knocked on the door. Meeting the parents is a big thing, but to do it so soon and while THEY WERE IN FANCY DRESS was not what I planned. Luckily the planets aligned and they’d just left by the time he arrived.
I was still in my pyjamas. True story. They were decent ones, but still. Talk about a baptism of fire. I’d text him to ‘warn’ him that I hadn’t been able to get dressed and that I was still wiped out after Monday. And you know what, he brought his pyjamas to put on so we could be the same. Pizza and pyjamas. Probably a dream poorly-person date!
We watched Dreamworks Puss in Boots, like the overgrown children we apparently are. He seemed completely unfazed by my apparent poorliness.
My temperature regulation has been an issue throughout my M.E. experience. I remember, having had to take my socks off because my feet got too hot, that they then got really cold (burning cold I call it because it hurts!) A pivotal moment, for me, was that he put my socks on for me because I couldn’t bend down or muster the strength/energy to do it.
Our third time of meeting was the first time we had a more conventional date.
For our first real date (as in our first date that wasn’t me in my pyjamas and us watching a children’s DVD!) we met in town for coffee, my parents having dropped me off as close to the meeting place as possible. (It was a big deal for them to be letting their 26 year old daughter go out with anyone other than a close friend or family member.) And then, my now-husband, declared that he knew a great place to eat that we could go to for lunch.
“I can’t walk very far” I said. (He knew about my health condition from the get go, but I thought I’d better reiterate this part!)
“It’s really close don’t worry.”
Google maps now tells me it was 520 yards/0.3 miles/480 metres. He learnt that day that that distance was exactly what I’d meant when I said “I can’t walk very far.” It was out of my range. Whilst I did make it to the pub, my battery was drained by the time we got there. As we’d walked, I’d got slower and slower and slower. I wasn’t embarrassed and he wasn’t fazed but he felt awful for not quite grasping the severity of the situation. “Oh she REALLY can’t walk far. At all.”
Perhaps I downplayed things a little in the hope that he’d stick around, but truth be told it simply wasn’t possible to pretend I wasn’t as unwell as I was. Of course I ran on adrenaline at times, just as I’d do when enjoying seeing my friends. And although my M.E. was ever-present we didn’t really discuss it in depth each time we met in those early weeks and months. It came up constantly “I can’t drive that far.” “I can’t drink alcohol.” “I’m not able to go to the cinema just yet.” Sounds terribly miserable doesn’t it. But it was my truth. I just tried to own it and be as upbeat about it as possible.
The key was communication, and there being a level of trust from him that I know my body, my health and my limitations far better than he did. (Initially at least. Mr Tree Surgeon is now a pro at seeing the signs I’m flagging while I try to kid myself that I’m fine.) Had he disregarded, even kindly, what I was saying about how much I could do, I simply don’t think it would have worked. In the same way I trust that he knows far more about trees and knots and which rope to use in a tree, he trusted that if I said I wasn’t yet well enough to take a train to Cambridge or to spend more than a couple of hours together at a time
On certain days I can’t muster the physical strength to get dressed. On other days I am restricted by what kind of fabrics my skin can tolerate. I do though have an array of more colourful clothes, to help liven up the hardest days.
What I eat
I’ve experienced an intolerance to gluten and dairy and lactose several times over my time with M.E. My body also has days where it can’t tolerate too much fruit or certain vegetables.
I simply cannot be the friend I want to be because I often don’t have the capacity to even check in on my friends via text message. I forgot birthdays or can’t afford to send gifts. I have been unable to support friends at the funerals of their loved ones. I’ve missed the hen dos of my favourite people when I was meant to be helping to organise the event. My relationships are now often not evenly balanced because I cannot hold up my end of the friendship bargain; for the relationship to be about mutual support and give and take.
My sense of pride
I get to feel proud of myself, in one way or another, most days! This time with M.E. has taught me that feeling proud of yourself can come from something like washing your own hair, remembering to eat lunch at lunchtime, or simply not throwing in the towel when doing these things might seem pointless.
A biggie. I now live in a body that I cannot trust to perform the basic tasks a body should preform. It’s led me to question my other abilities. Society constantly reminds me that I am Less. Have you seen that social distancing measures in car parks are often using the disabled bays as part of new queueing systems? How do you think that makes the people needing those parking bays feel?
My financial security
The disability benefits I receive are not enough to cover my share of household outgoings. I am reliant on the generosity and kindness of others, even with the higher rate of benefits I receive. I can no longer afford the very supplements that are recommended to possibly improve my symptoms.
What I watch
Luckily for me I very rarely experience boredom, because more often than not I can only manage to watch animated children’s films that I’ve seen countless times before. Anything that could make me jump is a No-Go as the adrenal release I get is so extreme. Certain movie soundtracks affect me too. Most recently Frozen 2 exacerbated some of my symptoms because of the tempo of the music.
Not only am I a prisoner in my own home, rarely well enough to go out on ‘Day Release’, I am also often a prisoner in my own body, at worst unable to speak or communicate.
My idea of strength
Strength has become the refusal of my spirit to sink when faced with having to start over and build myself back up after each setback. Strength is the ability to accept what I cannot control. Strength is giving in but never giving up.
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.
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.
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.
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.