One of the many things I’m very thankful for is that I have some very proactive friends. They’re problem solvers, they like to find solutions when I present them with a challenge and I love that about them. I’m exactly the same; if something’s not working I want to assess what’s not working and what needs to be done to fix it. That can make me a pretty frustrated fibro sufferer because, as we all know, our physical, mental and emotional pain is not something that can be fixed logically fixed. Or is it?
I know my friends and I can’t fix my body and unless one of them is harbouring some immense medical research skills, I don’t think that’s going to change any time soon. But instead of viewing my condition as one big problem that needs solving, I like to break it down. Sometimes my problem is walking without my feet stinging, sometimes it’s carrying my stuff in a bag without my upper body throbbing, sometimes it’s losing the feeling in my hands as soon as the weather turns colder, sometimes it’s… you get the idea. These are problems that have potential solutions, they’re things that I can talk to my friends about and they can feel totally useful as they make recommendations that improve my pain levels and, quite seriously, improve my life. So today, here are some recommendations that I’ve implemented or am in the process of implementing that are really working. Who knows, maybe they’ll work for you too.
Problem: Needing a distraction for the high pain days.
There are many days when pain and exhaustion are too much and the only thing I feel capable of doing is lying down in bed. I am the worst patient though so when my mind is buzzing and I want to ‘do’ something, lying in bed feels like torture. I’m also guilty of getting a bit (okay, a lot) irritable at times like this and so I usually turn my mind to planning activities for when I’m feeling better. I spend hours with the diary out working out which friends to see when and what and where. One of my friends has been encouraging me to try to relax a bit at those times, and instead of madly planning she suggests I lie and listen to podcasts. She’s been telling me this ever since I’ve known her, and I’ve finally followed her recommendation. And you know what? It’s a good one! This American Life is providing me with totally entertaining days; I lie in bed with heatpacks and my laptop and become sucked in to whatever topic of discussion is going. And the best thing about starting so late in the game is that I’ve got hundreds of old podcasts in the archive to catch up with. It’s awesome! There are hundreds of podcasts going these days, and another one that was recommended by the same friend is The Mental Illness Happy Hour. The podcast’s tagline is YOU ARE NOT ALONE and it describes itself as providing “weekly online podcast interviews with comedians, artists, friends, and the occasional doctor. All exploring mental illness, trauma, addiction and negative thinking.” It sounds like a good one and I’d be surprised if more fibro sufferers aren’t intrigued to give it a try.
Problem: Sharp bursts of intense pain when at work or out and about.
Solution: Pernaton gel.
My mum was reading a women’s magazine a few months ago and an article on arthritis recommended patients use Pernaton gel and rub it into areas of intense pain for quick relief. My mum rang me in excitement to tell me about the article, saying it referred to fibromyalgia as well and I should give it a try. “People are swearing by it!” I received the information with irritation and frustration; I told her I was constantly being told of one product or another that was being promoted to help fibro sufferers and it never worked, and I was exhausted and thanks but no thanks. My mum’s pretty stubborn though and she sent a tube of gel to my house. I tried it, and it worked! I’m not promising anything, and I know everyone’s pain is different and what works for some doesn’t work for others, but I now have travel sized tubes of this in my bag, in my desk drawer and on my bedside table. It’s not expensive and this is one recommendation I’m glad my mum bought into.
Problem: Unable to carry much more than a wallet and phone.
One of the things I really struggle with is going out for a prolonged period of time with much more than a wallet and a phone. My shoulder bag soon gets heavy once I add my camera, my kindle, my tablets and gels, my gloves, scarf and hat etc etc etc. I try more and more to take less and less out and about, and I even bought a small shoulder bag to force me to limit the amount of crap I lug around the city, but sometimes it’s simply unavoidable. And what then? Well, my friend recommended I bought a backpack. Yes, a backpack. Now to me I instantly think of a school geek being bullied on a lonely walk home, and whilst I know that health is far more important than appearance I can’t help remembering a conversation I had with my dad numerous times during secondary school. I would leave the house in the drizzling rain and my dad would shout after me, “Have you got your raincoat?” I would reply “Yes!” as I continued to walk away from the house. “Show me!” he would call after me. Damnit. I didn’t have it, and he knew I didn’t have it. I had glasses and braces and I never had cool trainers so I really didn’t think I needed a geeky raincoat to add to my daily school trauma. Dad would inevitably bring my raincoat out of the house and I would inevitably shove it in the bottom of my bag and get wet. All of this is my long-winded way of saying, if I’m going to wear a backpack it’s got to be one that doesn’t make me feel like a loser. All of the below are Asos and under £40 so, who knows, maybe I’ll give it a try.
Problem: Anxiety taking over everything.
People have been recommending meditation to me for quite some time. I tried it about a year ago; dragged myself along to a meditation centre in an old warehouse building in the middle of Newcastle city centre with thirty other people all shoved in the same room searching for their own space and calm. I don’t know if any of them achieved it, but I know I didn’t. I spent most of the time thinking of all the things I needed to do when I got home. Then one of my friends recommended Headspace. This app saved me. My anxiety was getting pretty bad a couple of months ago, and one particular low-light saw me crying at 1.30am and having a panic attack. I searched Google for ways to calm down the attack and was told to clean and/or listen to music, so I turned on the hoover (I never hoover) and cleaned whilst straining to hear the sound of pop music on the radio over the hoover and my tears. I knew then that I needed to find something that could take me out of my anxious headspace and help me calm down. Now admittedly I was seeing a clinical psychologist at the time of trying the Headspace app, but it’s ‘take 10’ feature forces you – as best as an app can – to take 10 minutes every day to meditate and I can happily say it had the desired effect. I know I’m meant to do it every day and become a pro so that soon I don’t need the step-by-step voiceover that calmly tells me to breathe, but I also know I’m never going to be that girl. For now I just like knowing it’s on phone so that when I get stuck there’s a little something to help me out.
Problem: Feeling restless and needing to ‘do’ something, at the same time as feeling sore and needing to rest.
A friend of mine recommended I started painting, and she suggested it for a number of reasons. The first is that by using bright colours on a large canvas and painting it a light room, the sunlight and brightness is supposed to release endorphins which have a positive effect on the brain. Or something like that. The second is that painting requires enough concentration to distract you from your thoughts, but it doesn’t require so much effort that you’re pained and feeling like you’re working. I haven’t tried this yet; I’m moving house in a month so my plan for the spare room is to get an easel and a large canvas and some bright paints and see if it does what it’s supposed to. I’ll report back.
The point of this post, as I hope you will have realised by now, is to show you that there are many many things people are recommending to us day in day out, fibro or not. Some of those recommendations will have no impact at all, but others may just change your life.