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Tips for Going Out With Fibromyalgia
When I was diagnosed with fibromyalgia nine years ago I looked forward and saw myself trapped in my home, too scared to venture out in case I was physically unable to get back.
On top of my physical struggles I had brain fog so dense I didn’t feel safe driving my car, and it soon became clear to me why so many people in fibro chat rooms were unemployed, housebound and often depressed.
As a mother with small children I was desperate to make their lives as normal as possible, and so on a “good day” I decided to work out exactly what was preventing me from going out and if there were any life hacks to help me overcome the issues.
The Spoon Theory
I love the spoon theory of fibromyalgia. Using spoons as a measure of energy, you allocate yourself a certain number of spoons for the day and work out how many spoons it uses up to complete certain tasks.
Let’s say I have 10 spoons. On a bad day getting out of bed and having a shower might take four spoons, getting dressed takes two spoons and preparing breakfast takes another spoon. That’s seven spoons gone already, so I know a trip to the supermarket is almost certainly going to take me over my spoon allocation for the day.
So I build in shortcuts. I ditch the shower and replace it with a wash, using face-wipes if necessary. Dry shampoo is my new best friend since modern brands are light and easy to use, unlike the powdery itchy blends of years gone by.
I have adapted my wardrobe to include flare-up outfits. This includes pull-on trousers and skirts, looser tops without fasteners (my fingers refuse to do fiddly fastenings on bad days) and my personal life-saver, easy-on shoes. I am a big fan of comfortable mules, clogs and flip-flops — any style of shoe that doesn’t require me to bend down or use my hands to fasten or fit.
I have found it’s worth paying a bit extra for one good pair of shoes, and have ditched most of my fashion heels, except one pair for special occasions. I still take a pair of flats as a back up though!
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Fashion does not have to suffer; there are so many styles of trousers — flowing, cigarette or harem style — in a range of patterns and soft fabrics available that I can feel as comfortable as I do in my pajamas but still look like I’ve made an effort.
As to actually going out with fibromyalgia, the biggest key to my freedom was the decision to swap our car with manual gears for an automatic, which means the actual driving mechanism is almost foolproof.
This, of course, does not help my poor recollection of directions — or even where I am meant to be going — during a flare-up, so I usually ask someone else to drive or take a friend or family member with me to keep me on the right road. Failing that, a GPS giving verbal directions is vital.
I prefer to take someone with me whenever possible as it can be a great help, even if I’m just popping to the supermarket. One great friend of mine instructed me to text her every time I realize something in my cupboards needs restocking or if I have a gift or something for the children to buy — now she has a list so she can help me shop. She acts as my memory.
I plan trips out much like I did when I had a baby. I build in regular rest stops and food and drink breaks so I don’t get too tired. I have a pull-along shopping trolley with a fold down seat so I don’t have to carry heavy bags and can rest while I’m queuing to pay. It might look a bit “elderly” but if it makes the difference between being able to go out or not, I don’t care.
Anyone who has been diagnosed with a chronic fatigue or pain condition of any type will know the phrase “pace yourself,” but I have found that to avoid a complete meltdown that leaves me bedridden for ages I have to do exactly that.
Allow Time to Rest
If I know I am going shopping for school uniforms or new curtains or whatever, I allow a day of rest before and afterwards. Big events like a wedding or a conference I actually write off the whole week afterwards. Then if it turns out the event doesn’t trigger a flare-up I can cautiously resume normal life — whatever that is!
This way if the fibro pixies get nasty and I find myself exhausted, fogged or in pain, I don’t have to let people down by cancelling. The words “fibro-dependent” are in my vocabulary as much as “weather-dependent” and “finances-dependent” are to non-sufferers.
Bear in mind the fibro pixies can be cunning and you might wake up the morning after a trip you were sure would knock you back but discover you feel fine. You bounce up praising your luck only to find the hammer falls a day or two later. This is why I write off a whole week!
Almost a decade after diagnosis, I find I can live an almost normal life using these life hacks. I have to be bold and occasionally at a party ask for a cushion, or to move about instead of sitting for hours in a chair I know will trigger pain and stiffness, but with some courage and a good plan I feel I am finally getting to grips with a life with fibromyalgia.