I’ve often heard it said that when a person gets very sick, it can be almost as hard for the partner or spouse as it can for the person themselves. This is something I have thought about a lot lately. How difficult it must be to stand by and watch your partner suffer, knowing that you can’t make it better or take any of it away. I’m lucky, my illness isn’t life threatening * but it is certainly life changing; not just for me but for those closest to me as well. None more so than my husband. Now, those of you that know me know how uncomfortable I am with public displays of affection. In fact, I like to pretend I don’t even really like my husband that much at all. Keeps him on his toes you see. The rest of this post is going to be agony therefore because, dear reader, I am going to suspend my cynicism and discomfort and dedicate this whole post to my rather excellent husband.
My husband and I have been together for nine years after meeting/being set up by a mutual friend in the very glamorous, extremely romantic setting of Bamboogy Bar in Wigan. We married two years ago, sweating serenely under the Tuscan sun in the company of our nearest and dearest, and to be quite honest life has been a total laugh riot ever since. I sometimes wonder if he thinks I’m just putting the ‘in sickness and in health’ vow to the test a little extremely lately. (Either way, he passes on that one with flying colours. Which one should I test next?) It goes without saying that these first two years of our married lives have been more than a little bit challenging for both of us. So much has had to change in such a short space of time that it left us both reeling. Throughout all of it though, he has been such a constant source of comfort and support to me that I honestly don’t know how I would have coped without him. (Oh lord, if only you knew how much I cringed writing that – it was worse than having to kiss him in front of everyone at the wedding!)
When one person in a partnership becomes unwell, it inevitably changes the dynamics within the relationship. Even when one of you has a cold, the other naturally picks up the slack for a while. So when it’s something more serious, something chronic it means a lot of responsibility falling on the shoulders of one person. I was always independent and liked to do things for myself (ask my mum about my toddler tantrums) and am a bit of a perfectionist. So much so that it pains me to watch my husband do the dishes and not stack them in size order in the drainer, and don’t even get me started on way he ‘organised’ the spice cupboard in our new house. He on the other hand, is very laid back and couldn’t really care less about silly little details like a disorganised spice cupboard (the absolute sociopath). Over the past couple of years his role has transitioned from that of husband and some-time pest to carer, chef, cleaner, personal assistant, hairdresser and therapist - all rolled in to one handsome, red-haired package.
Monday to Friday he gets up, goes to work (teaching – which is exhausting at the very best of times), comes home and prepares dinner, does any housework that needs doing, gets his marking and planning done and then usually has to sit through my daily slide show of photos I took of the cat whilst bored at home all day, before then helping me to get ready for bed. Then on the weekends he does yet more housework, food shopping, more school work and if we’re lucky we manage to go out for a little mooch in the Hot Wheels, or a short walk if I’m feeling up to it. Then it’s back to a quiet, dark room for me to recover. What a fun wife he has! Sunday afternoons he spends batch-cooking so that I’ll have ready-made meals to eat during the week, because most days I’m not able to cook for myself from scratch.
On my bad days he has to help me bathe, wash my hair and dress and let me tell you, nothing spices up a marriage quite like your husband trying to pull your skinny jeans up over your arse and asking if they’ve shrunk in the wash. No dear, that’ll just be the carbs. On my very worst days at the beginning, he even had to help me to drink and feed myself because I simply didn’t have the strength or energy to lift a fork to my mouth. I am learning to manage much better but there are still days that he has to sit by whilst I struggle to keep a handle on my pain, and watch me cry with frustration when it all just gets a little too much. Somewhere in between all of that we try to make some time to just be a happily married couple in our early thirties.
My husband and I used to live very active lives; we cycled to work and back every day, spent our weekends hiking, we enjoyed camping and travelling together. I loved to outrun him in the park and he loved to avoid that by going out to play squash and football with his friends instead. It wasn’t just me that my illness took all of this from, it was him too. His life has been drastically changed by all of this as well and it takes its toll, mentally and emotionally. We’re both grieving for what has been lost and we are both working hard to stay positive every day, taking the small victories when and where we can. We are learning to live with our new normal, all the while not giving up hope that this is a temporary situation (the M.E, not the marriage!).
Looking after someone else’s needs 24/7 doesn’t leave much time for you to think about your own and sometimes when I look at him he just looks so exhausted that I could cry. There is so much guilt that comes with being chronically ill and despite his protestations, I worry that I’m holding him down and that being married to me is a drain on him. He doesn’t like it when I say things like this but it’s impossible not to feel this way sometimes. He rarely allows himself time to go out and just have some fun because he doesn’t want to leave me alone at home. I think sometimes he feels guilty about going out and enjoying life, when I’m stuck in the house unable to enjoy it much at all most of the time. Don’t get me wrong, of course we still have fun – how could we not, I’m a hoot! We are learning to enjoy the little things in life now like enjoying a coffee together in the back garden, doing crosswords or playing boardgames and of course being complete and utter die-hard Strictly Come Dancing fanatics (yes, we are 80 years old).
Of course it’s not always enough and there are days when our hiking boots are calling to us and we just want to be up a mountain, but he never complains or allows me to feel guilty about this. He just plods on, making sure life is as easy as possible for me. He is the very definition of a good egg.
So I guess what I’m trying to say is that if you know of anyone who is suffering with M.E or any other kind of chronic illness and you want to help, then don’t forget their partner for whom this journey is just as exhausting. Offer to take them out for a beer or a walk, whatever it is that they find fun and relaxing. Be a supportive shoulder to lean on. By helping them, you’re also helping the person suffering with the illness because the last thing we want is for our partners to not be able to enjoy life. To be honest, it’s nice to live vicariously through them sometimes too. Finally, if you would like my husband to live to see 32 you’ll offer to come round and help him organise that bloody spice cupboard.
*(Earlier I said that M.E isn’t life threatening and it isn’t, not at my stage anyway, but a young woman did pass away this year from severe M.E. Her name was Merryn Crofts and I think it’s important that people know about her. You can read about her here)