Learning how to live with fibromyalgia can mean a lot of changes to the life we lived before. For some people it may only require small changes but for others it can mean a completely different lifestyle. I went through this process myself so I hope it helps you. Here we look at a few ways you can adapt your daily routine to make life easier.
Trying To Start Your Day
Trying to start your day is often your first challenge and a gentle routine is more beneficial for our fibrostars. Read on to see how one of the most valuable lessons I learned could make a real difference to your day. I was taught how to live with fibromyalgia when attending a fibromyalgia physiotherapy course. Hopefully if it’s helped me it can help others. Curing fibromyalgia isn’t possible yet but living a good life with it is.
How To Live With Fibromyalgia, Regaining Control
Knowing how to begin reclaiming your life after diagnosis will give you confidence. It will help you feel like you’re regaining some control after being at the mercy of this debilitating condition. Because fibrostars feel so tired for so much of the time it’s difficult to get anything done.
A lot of fibrostars feel like their previous lives have been taken away from them. I know I felt this way. It’s a valid feeling and grieving for the way you were is a natural reaction. When you’ve figured out how to live with fibromyalgia it becomes easier to cope with your new normal.
You may experience any or all of the emotions we associate with the grief cycle. Depression, anger, denial, bargaining and eventually acceptance. Understanding this process can help you cope with these feelings.
Energy
It’s often said that people living with fibromyalgia use five times as much energy as a healthy person. Now if you asked that healthy person to do everything in their routine five times over they would probably tire pretty fast.
Five stretches before they get out of bed, five times the distance to the bathroom. Cleaning their teeth and showering five times over and getting dressed and brushing their hair five times over. Are you getting the picture?
Continue this thought through the day ahead and you begin to understand the way you’re feeling. This is a good way to help friends and family understand a little of how life is for you. The support of friends and family play a key role. They can help you learn how to live with fibromyalgia.
So what did I learn on the fibromyalgia physiotherapy course that helped me to move forward and adapt my lifestyle? I learned pacing.
The Value of Pacing
Pacing is such a simple concept that you’ll soon find yourself working it into your daily routine. Whether your having a good day or a bad day it becomes part of your everyday life. I use pacing without thinking about it now.
However bad you feel when you wake, trying to do some very gentle stretching to ease painful muscles is a good start. But always remember to be kind to yourself by being gentle at all times. It sounds so simple and yet you all know how much of a challenge just that small action can be.
If you’re having one of those days when getting out of bed just isn’t going to happen that’s understandable. So forgive yourself! You’re not failing at anything, you have a legitimate illness that needs to be respected. Getting the rest you need is all part of learning how to live with fibromyalgia.
How To Live With Fibromyalgia, The Good Days
If you’re lucky enough to have days when you’re feeling pretty good don’t ‘attack’ the day. The temptation to steam your way through all those jobs that need doing will leave you burned out and exhausted. The damage this can do to your confidence can be a high price to pay. From here onwards everything needs to be done in stages.
It’s always going to be frustrating when you run out of energy. It still drives me crazy, but pacing helps me avoid that scenario. We’ve already given you the idea of pacing in your routine of starting the day. If you like to plan then write a list. I get tremendous satisfaction from crossing off each task or break. Don’t be too ambitious, be gentle. Short, easy tasks are the way forward to begin with.
living with fibromyalgia
When I’ve managed to complete one task I reward myself with resting time. However long I need. Trying to do everything at once “while I have the energy” can bring me crashing to a halt and full flare up. Being out of action for days is soul destroying. This is where I learned the value of pacing.
When I’ve done one job, say, load the dishwasher or wiped the kitchen surfaces, I’ll sit down for as long as I need to before attempting the next. On good days I’ll keep it to a minimum of 15 minutes and other days a maximum of an hour. This is what works for me personally so adjust the breaks to your own needs.
If you’re pre diagnosis or early in your diagnosis breaks can be as long or short as you want. If a two minute chore requires a two hour break or rest then so be it. It’s not easy in the beginning so be generous with your rest time and eventually you will achieve more. It’s all part of living with fibromyalgia.
How To Live With Fibromyalgia, Baby Steps
In the early days when you’re newly diagnosed it can all seem a bit daunting. When you’ve had to be helped just to get out of bed life feels very hard. This is when you need to remember that it’s baby steps that will bring the best results. Use pacing in every part of your life and you’ll achieve a better quality of life.
I remember feeling both helpless and hopeless at this stage. Luckily I have a supportive husband because life was incredibly hard. I found it hard to believe things would improve at times.
There’s no magic formula or cure. Work/life balance and pacing go hand in hand. We just have to keep experimenting with different routines, and of course medications and exercises. All of which we’ll look at in another post. As you try different things you’ll find what works for you. Everyone’s fibro is different and as individual as you are. All these steps will help you in finding your personal cure for fibromyalgia.
Food
Many fibrostars find that different foods have an effect on their well being. Some foods will aggravate or even cause a flare up and identifying which foods work best for you takes time and patience.
If part of your symptoms involve Irritable Bowel Syndrome then it’s important you find the right balance to keep you well. Carbohydrate heavy meals and food containing Gluten are often prime suspects for causing you problems. When you find yourself in a flare up, consider what you’ve been eating recently. You may start to notice a pattern which will enable you to either cut these foods out completely or limit your intake.
Taking a Holiday
Taking a holiday can feel like a fantastic idea until the departure date draws near. This is when you may realize you’re struggling to find the energy to get organized and pack. Keep in mind your baby steps to pacing. Read our post Travelling With Fibromyalgia on our sister site lookingforluxury.com to help with the journey. You may find our article on travel insurance helpful too.
Final Thought on Living With Fibromyalgia
There is so much to learn and to know about living with fibromyalgia. Don’t let it overwhelm you.
You will need to take your time as it’s a lot of adjustment in your daily life. It’s trial and error for all of us so concentrate on the wins. Yay I cleaned my teeth today! Or I got dressed in one go. Are you able to get in and out of the bath tub? You may find a lovely warm bath will go a long way to making you feel more comfortable. Particularly if you’re cold sensitive like me. In my case taking a hot bath can literally stop my pain for an hour or more.
I don’t know if this works in reverse for heat sensitive fibrostars. If so I’d be interested to hear from you in the comments section below. You can learn to live with fibromyalgia. If pacing means you get two things done in a day instead of one then that’s a huge step forward. And always, always, try to keep positive.
You can still have a life if you’re living with fibromyalgia.