I have written about some personal things in my blog but today is a hard one to share because for some reason this feels actually quite private and also I don’t want to invite pity – what I am about to talk about is not life threatening and please know, I do count my blessings. However, I am writing about it because, right now I am finding it hard to think about anything else.
I suffer from palindromic rheumatism. It started around 12 years ago after a really bad dose of tonsillitis, when the doctors called it viral arthritis. Essentially, any time I get a virus or infection, I also suffer joint pain. Over the years, it has got worse, and whilst it still hits with things like colds, I also suffer episodic rheumatism by itself. Sometimes it lasts for a few days, sometimes several weeks. It affects all my joints, I have muscle pain across the top of my back and I feel absolutely exhausted and sometimes like I have a low level temperature. The longer it goes on, the more tired I feel – I don’t sleep well and also I think I feel shattered by fighting the pain. It started to affect our lifestyle quite significantly in 2014/15 but actually since then, I have had a really good spell of about two years. Unfortunately, over the last 6 months or so, I have felt it creeping back into my bones and I am currently in the midst of an extended episode – 3 weeks in. I am uncomfortable, getting through the days on painkillers, cross with the children when I don’t want to be, shattered and tearful.
The Friday before half term was for many of us a school training day. The sun was blazing and my friends and their children were at the beach, visiting abbeys, splashing in rivers, celebrating friendships and creating wonderful memories. The girls and I were at home and I was a deep, dark blot on what should have been a bright and happy day. I was unreasonable, I was angry, I was tired and I yelled at the girls for no reason and I didn’t just snap – I spoke to them in a way which was too grown up and in a way which was about me unburdening myself and not remotely justified. I was foul and I knew it. Eventually, I gave in and succumbed to the sofa….drifting off and losing time, waking fitfully, to see the girls, unsupervised, playing on in the garden….At one point, I woke to see H undressing F, and ensuring they all had sun-suits on as they pulled the hosepipe out for some water fun in the garden. My 7 year old, taking care of the family. I went back to sleep, hating myself and wondering if this is what it was like for children of addicts, who are lost in a different kind of blackness. I was the worst version of myself and since then I have replayed that day over and over, revisiting everyone’s pictures of their glorious days on Instagram and Facebook, poisoning my mind with self-loathing and guilt about what an awful example I was to the girls that day. Always aware that H, in particular, is now at an age, when this could be a memory which stays with her forever.
We are just returned from a week in Normandy, where Dan and the kids had an amazing time. We all did – if you have read my blogs before, you will know that our family alone time is my most prized and precious thing. We are a complete and amazing unit. But after last week I am struggling to shrug off the nagging thought that the girls might have had a better time, were it not for me, the short tempered Mummy mood hoover munching on her ibuprofen. After one glass of red wine too many, I sobbed and thumped my chest in the dark, crying to Dan and wondering why I felt so joyless…..Did I mention, I can be a bit dramatic?!
Both of these days have been my worst in the last 3 weeks. Generally, I am fine. Yes, I am in pain and discomfort and yes I am tired. But like I say, it’s not life threatening and I wouldn’t call it a disability. It is manageable, I ignore it as best I can and I also know it will pass.
On one of our nights in France, we sat out on the covered terrace to our little caravan, looking across the Normandy hills, watching the most incredible storm roll in. Slowly at first, masking the ferocity of the elemental attack to come. The dark foreboding clouds, gathering, pregnant and purple with the torrents of rain soon to be unleashed. The thunder rumbling, soon an unrelenting Blitzkrieg, with barley a pause in between. Lightening illuminating the surrounding trees like a succession of gunfire. Then came wind, blasting the rain into our little shelter, whipping up the garden furniture, forcing a very hasty retreat to watch behind glass doors! It was absolutely explosive and one of the most hypnotic storms I have seen.
It also made me think about the phrase “weathering the storm” – it’s a phrase we use almost glibly. But how many of us actually do “weather a storm”? When I am in the middle of one of my little ‘episodes’, I can be prone to a bit of self-pity (I blame the lack of sleep). So at first when I was thinking about the phrase, “weathering the storm”, I was thinking about me, a dark cloud on that sunny Friday, who just needs to get through this….But actually, I am not really weathering a storm – I am not being punished by lashings and lashings of unforgiving weather, I am not drenched to my very being. I am not being tossed around on high seas, lost to the depths. My walls are not caving in, my roof is not being blown off. I am not flooded or scorched. After a few dark days, I had some perspective.
Which made me realise I also have some control.
I mentioned that in 2014/2015, the rheumatism was having a significant impact on our quality of life. Desperate, I visited a homeopath and inspired by Ella Woodward, made a decision to eat my way into better health. I am no expert and of course, it could have been co-incidental but cutting gluten and refined sugar, filling myself with greens and a rainbow of vegetables, seemed to work. But what if there was something in it? After my return to work, I slowly but surely let my healthy diet go and once again, put self-care at the bottom of my list. Should it come as a surprise that my body feels toxic and the rheumatism has crept back?
It is frustrating that this prolonged three weeks has occurred after I had already declared a renewed commitment to health and exercise….This time motivated by a desire to be strong and fit, to ensure my longevity for the family but also to be an example to the girls. But perhaps this episode of rheumatism is just a blaring siren to make sure I know how important self-care and healthy habits are. Clearly, I don’t want another family holiday to be marred by this condition and I don’t want to miss out on opportunities to build happy memories, filling the girls with love. So, I will see this blip as a lesson in taking responsibility, not just for the well-being of the girls, but for my own too. It’s time to treat myself and my body with respect. I want to dance in the rain.
Ps thank you to Pinterest for the images
One thought on “Dark clouds”
Kerry, don’t beat yourself up for not living up to the idealistic photos of fun family life you see on facebook and Instagram posts. Seconds before and after the photo, someone was shouting/arguing/crying… Chronic pain is hard to deal with, but you also don’t know what lies behind the perfect family photos out there. Be a little more cynical about them, don’t try to compete, or feel you should be able to. You’re doing great. I agree that the body reacts to what goes in it – I get skin break outs after a heavy weekend at the least! If eating a rainbow, cutting down sugar and gluten helps then go for it, but allow yourself a limited amount per week so it is easier to stick to longterm. Good luck mate x