Monday, 23 September 2013

Love is for Suckers

(It’s a great song and I can’t take myself seriously writing something even slightly soppy unless I've taken the mickey just a bit.)

One of the things I read a lot about across the communities and pages I frequent is people who feel cut off from their partner by their illness, or who feel they’re not understood and supported for whatever reason. I’m drawn to genuinely offer support because reading such things makes me very sad indeed, because your partner is the one person you should be able to tackle a large hurdle like long term ill health with.

It also makes me powerfully aware of just how lucky I am.

Alex and I met in a field.

As much as I’m tempted to leave it there for entertainment value, I’ll clarify that this wasn’t just any old field and was in fact the Bloodstock Open Air festival which regular readers are probably a bit fed up of me mentioning by now. We’d talked a bit online before that having hit it off as friends over the festival’s forum, but that was the first time we met properly.

All he did was jump up and down like a child at Christmas and shout “Hannah, SAXON!” at me for about 30 seconds (Saxon had just finished playing; he’s not quite that much of a raving lunatic).

If anyone was looking for any tips on flirting, for whatever reason it would seem this approach works rather well!

We got together at the end of that year (2009) and started to live together in February this year. Somewhat surprising to him at least is the fact I haven’t murdered him yet (That’s a self-deprecating reference to some of his more annoying tendencies and not a hint that I’m a psychotic axe murderer, I promise.)

(An old one while I was still well. I'd say I was completely sober here, but it's a lie and you all know it.)

The biggest point I wanted to make here is that for well over eighteen months he had a perfectly healthy girlfriend.

I’m not for a moment suggesting that starting out with someone with long term health issues isn’t just as daunting, but I can’t imagine that suddenly being thrust into the new reality of me not being anywhere near as able was an easy thing to deal with, especially coming out of nowhere overnight the way it did. It can’t have been any easier to watch the situation deteriorate over the next twelve months either.

You really wouldn’t know though.

I’m not that easy to live with, particularly in the winter months when I’m at my worst. I’m awkward to plan around, can’t always pull my weight with jobs about the flat (and even when pulling my weight it’s still weighted somewhat against him) and particularly when pain levels are running high I’m cantankerous and extremely short of temper. If pain and allodynia or sensory overload combine then I’m impossible and should probably walk around with “Danger, do not engage” branded somewhere about my person.

I never feel like me apologising or any amount of understanding that things are difficult takes the sting out of me being a bit of a cow, but luckily for me Alex is very good about it all. It’s also a big lifter for me that even though he’s the first to admit he can’t really understand to a full extent what Petunia’s doing to me, he reads this blog and takes an interest even when I’m waffling on and musing aloud.

With the amount of musing aloud I do about anything and everything, you’ll just have to take my word for it that he has nigh-on the patience of a saint.

I’m a hugely sensitive soul, and the person I get most upset with most often it myself. I still get frustrated with things I can’t do, and particularly with the amount of times I get muddled up or forget things. As a highly intelligent person this gets to me more than anything else. Not only does he listen, but he tells me off when I need it too. So not only has he had my back in the couple of instances where someone else has had a go about my health, he even defends me against myself on occasion. That’s a skill.

The first thing he’ll do when he reads this of course is tell me I’m not that bad (I’ll come back and confirm, but I’d lay a substantial amount of money on that being the case).  

I often feel like the role of your significant other doesn’t get the attention it deserves in respect of chronic illness – they might not be suffering the plethora of symptoms, but in some ways they do suffer with you and it’s hardly an ideal situation for them either. Naturally all he wants to do if I’m upset and sore is give me a cuddle – if my allodynia is awake, he can’t so much as touch me let alone put arms round me. I also don’t like thinking what a psychologically horrible thing it is to have to help your girlfriend who was completely fine yesterday up off the floor where she’s gotten stuck today.

So, in summary Alex deserves a huge amount of credit, and we really have a lovely life in our little family (us and Madam Dovakhitty) despite everything.

If love is indeed for suckers, at least we’re suckers together.

(And now.)

Wishing you all many spoons xxx


  1. It's hard, isn't it? My OH had a (relatively) healthy partner for 10 years, give or take the bout of PVFS that I think was the starting point for my FM. The last 3 have been hard for him, 2011 especially as I was ill with stress, anxiety and depression as well as starting to suspect about the FM. He's been wonderful, though I still don't think he really understands, especially about the fatigue. He's currently flat out in bed, having hurt his back really badly, has been walking with a stick for 2 days. I could be wrong, but I think he may be undergoing a revelation of just what my daily life is like!

  2. I think chronic illness is hard on us all. My husband started off with a well woman. He had her for 4 years, and I know it's been hard on him accepting the 'new' unimproved me, but I'm so thankful he's still here and we can go through it all together. I'm glad you have someone to go through it all with, too.

  3. I really loved reading this. You're so very lucky my dear to have the man that you do! I know that the one thing I worry about the most it why is anyone going to chose to be with me, when I am the way I am. Lovely to stumble across your blog. Liv xx