When my fibromyalgia diagnosis was fairly new I was having a lot of trouble settling to sleep because of the pain. One of the simple and sensible suggestions I came across was to have a bath before bed. The bath did make my arms and legs feel better but the migraine made my eyes too sensitive for the strong light in the bathroom. And when I closed my eyes my dizziness got worse. So having a bath is good for my joints but bad for my migraine. So frustrating!
I really wanted to be able to soak in the bath. I have some glasses with green tinted lenses that are soothing during a migraine. But sunglasses in the bath seemed too ridiculous. Eventually, I realised I didn’t need to use the main overhead light and could make use of the soft wall light above the mirror. This worked! The light was gentle enough not to bother me! The heat from the bath eased my shoulders and neck.
Problem solved! The next time I had to leave my partner and friends in the pub and come home early because I was aching, sore and starting to feel abit miserable I was ready. I planned to take a nice long bath to ease the aches and pains and to make up for an evening cut short. Once in the bath however, I started to experience quite intense feelings of travel sickness and felt quite nauseous. I realised that the movement of the water in the bath was enough to trigger the vertigo that comes with my migraine.
After grumpily giving up on another bath I got back to probelm solving. I needed something that would block my view of the water line but still allow me to keep my eyes open so I’d have visual points of reference to aid my balance. I started searching on-line for bath trays and found one with a book rest that looked like it might do the trick.
Surely now I was fully equipped for that nice, relaxing soak? Nope. This time I did manage to get a bit of a soak before I found the heat from the bath made the throbbing in my head and the tenderness in my face worse. Got out the bath feeling just a little bit miffed. At some point later on, I remembered reading how some people used heat and cold together to treat migraine so I tried again with another plan. This time resting the base of my skull on my home made ice pack (dried mung beans in a mesh bag that’s kept in the freezer) wrapped in a towel. This produced a lovely but slightly strange feeling.
Now I had an elaborate bath time ritual in place: turning on the low ight, fetching the ice pack, fixing the non-slip mat and grab rail, then tucking the bath tray up by my chin so I could relax in the bath without getting sea-sick. It worked!
For while. Only a month or two after this my eczema and folliculitis flared up. I did a little bit of research on the eczema society website and made a visit to my GP who confirmed that hot baths made eczema worse. I told my GP that the baths were for easing my fibro pain, and I think my voice must have conveyed my sense of frustration and disappointment. She gently told me that sometimes I’m going to have to weigh one discomfort up against another. I should have a bath when I need to ease my pain, and then I’ll need to treat the eczema. She was so kind and she was right. I am in the situation where my different health conditions and their symptoms can have conflicting needs and I just need to balance them as best I can.
So more elements were added to my increasingly, ridiculously elaborate bath time routine. I put a little oil (not advisable and I’ve stopped doing it as it can be a slip hazard, especially for someone with balance issues) and salt (not convinced the salt is doing anything) in the bath, have moisturiser and eczema creams to hand for when I get out. I use a timer to limit the bath to 20 minutes and have the water just warm enough to do my joints some good. And it really does help my pain and improve my sleep. It also gives some relief to the migraine pain in my neck and shoulders too. Success at last!
I told this story in a small group discussion in a fatigue and pain group I attended. It made a funny story and I thought made a good point about how important problem solving is. Like whack-a mole, no sooner than one problem was squashed and another popped up! It was funny as I rolled my eyes while recounting the weary exasperation and dogged, stubborn perseverance with which I faced each new hurdle.
It didn’t feel quite right though. When I was encouraged to repeat the story to the whole group I realised I had to correct myself and tell it properly. I explained although I told it as a funny story actually it broke my heart that time when I couldn’t even have a bath. After I’ve left my friends in the pub early and come home because of my migraine and the pain in my joints. I came home to have a nice relaxing bath and ease that pain. Only to get seasick. In the fucking bath. I would have cried – if crying didn’t make my migraines worse.
It is a story of perseverance and resourcefulness. But it’s also true that it took it out of me every time I found another problem. There’s so much grit and determination and cheering myself on and cajoling needed to persevere with this kind of problem solving and to see it through to a solution. And then circumstances change and you need to adapt again. I think this aspect of living with chronic illness is easily hidden from view. And there are so many things that uses to be taken for granted that now raise problems that need solving or enduring. I certainly never understood this before I had a chronic illness myself.
I still think it’s good to have a sense of humour and a black sense of humour is one of my coping tools. It’s to be in a group of people who understand and to laugh about these things as well as comfort and commiserate. But it’s very important too, not to minimise how hard these challenges can be. It’s important for myself because a story of how I went through something really difficult and came through it can be something to lean on in the future – I’ve overcome problems like this before so I can do it again.
It’s also important that I don’t forget how hard these things were for me because it allows me to empathise and recognise how hard everyday things can be for others. I don’t want to minimise my struggles or anyone elses. It takes heroic efforts to keep overcoming these challenges in everyday life. It isn’t fair and that’s hard to live with too. Humour and honesty – that’s what I’ll aim for when I tell my story from now on. It’s okay to admit that it hurts.