“When you first got sick, did you worry I would leave you?”
Pete asked me this recently, when he was in bed with a virus and I was looking after him.
“No. I worried I was a massive burden who was ruining your life. My life was destroyed and I was taking you down with me.”
When my M.E was at its most Severe, I could only talk for 5 mins twice an hour. However, sometimes even that would wipe me out and I’d have to sit several hours out in silence before I could try talking again. I was bedridden, with zero quality of life and what felt like zero purpose; Pete had become my carer as well as my partner. I relied on him for almost everything apart from spoon-feeding me and wiping my arse.
On occasion, I would cry. Sometimes I would cry so hard, I was close to howling. I’m fairly sure the neighbourhood dogs were gearing themselves up to join in, but I’d dial it down just in time. This was my pity party, not theirs. I’d wonder why Pete was still with me, and berate myself for ruining his life. It was a tough pill to swallow, knowing this really wasn’t what he signed up for.
Yet … this wasn’t what I signed up for either! I went into this relationship with the same hopes and dreams as Pete. We planned to dance, travel, have adventures, become running buddies, and so much more. We were a team, and as a team … we lost.
In sport, teams lose all the time … but you don’t see their members walking out on each other. They stick together and support one another to be the best they can be. Relationships shouldn’t be any different.
Self-kindness is SO important with Severe ME/POTS – but sometimes it’s easier said than done. It’s tough being so unwell and vulnerable. Losing your career, hobbies, social life, hopes, dreams, and even your future, takes a shit-tonne of grieving. And this is where it helps to have good team mates.
Be it family, friends, and/or partner – the ones worth keeping are the ones who sit with you in the darkness, and stay until the morning light (no matter how knackered they are). The ones who carry the load when you can’t, and still make you smile.
Contrary to my feelings at the time, I now realise I didn’t drag Pete down with me.
… He climbed down that massive black hole voluntarily, and sat with me until I could claw my way back up.
Because we’re a team.
Burden or Team Mate
I so relate to this for my 19year old daughter Elizia.. Ill since 15. Mostly housebound.
Its refreshing to hear your take on relationships. My daughter is afraid of loss. She will not allow herself a boyfriend. Partly because the boy ‘friends’ she gets close to she doesn’t wish to risk losing the friendship if things go wrong. The other part of her I guess doesn’t value herself for who she is and thinks why would someone wish to be with her when she can do so little only going out once or twice a week at best for a couple of hour.
It’s so hard to watch her as a mum. I’m always here for her but lately she wants me at a distance or with less advice (I guess that’s the case for all teenagers). So I’m trying to learn to just be a friend and less of the mum stuff.
Your blogs give me such hope. I wish she would/could read them (Oops there I go again trying to help)
One day she will read your blogs and it will be great because it will be all her idea! Then she’ll find echos of what you say resonating and her mind will allow a little growth and self compassion.
I’m figuring the reason for your website is to help others tread a path out of that blackhole whilst not feeling so alone.
Thank you for your work and openness.
From a mum who is learning a new role as part of her daughter’s team
Hi Teresa, thank you for being so open about your daughters struggles. I can imagine how hard it must be as a mother to watch your child struggling so much – no matter how old she is! It is such a shame your daughter isn’t allowing herself to get too close to anyone, but I totally ‘get’ why she does it. It can be really hard to value yourself and see yourself as someone’s equal when you’re not able to do even a fraction of the things they can. I know I struggled with it when my condition was more severe. It took a long time for me to realise that what I lacked in physical ability, I made up for in emotional support, companionship and connection with Pete. And it was him who made me see that. Hopefully your daughter will meet someone one day, who will also help her see her worth.
As for trying to learn to be a friend and less of the mum stuff – it’s a tough balancing act with most teenage girls, let alone a teenager with chronic illness. I always kicked against my Mum’s ‘helpful’ advice when I was 19, and I was perfectly healthy back then! But, although it irritated me at times, I knew it was because she loved me – which I appreciated (albeit, I didn’t tell her that!). I did a lot of things my Mum disagreed with, but it always helped to know she was there for me. And now I’m all grown up (biologically, at least lol) my Mum is my best friend. So I guess what I’m saying is, it sounds like you’re doing a fantastic job of supporting your daughter, and she probably knows how lucky she is to have you (even if she doesn’t always show it). It takes time, but one day she will show herself the compassion she deserves, see her worth, and realise that you’ve been seeing it all along. Big hugs xx
Oh, and yes – you’re spot on. The purpose of my website is to help others feel less alone, and to offer a bit of hope that although things may be pretty crap now … it can improve. Be it physically or just mentally – one way or another, there is light to be found.