Fibromyalgia (FMS) is not just about chronic pain and fatigue, although if you spoke to the majority of general practitioners, you would think those were the only symptoms people get. FMS is a complex, mutifactoral condition and is a condition of exclusion. In other words, many, many conditions have to be excluded before a diagnosis can be made. It can, and in my case it has, affected almost every system of my body from my skin and gastrointestinal tract to joints and muscles and not forgetting my brain. It has had a catastrophic effect on my career, which I loved. It has devastated my social life and family life will never be the same again.
This may all sound defeatist but the best thing I have done is to accept and adapt to the changes in my life. With this in mind, I have come up with a list of rules for myself. I haven’t just made them up from thin air, they have really just evolved organically over the years.
1. Understand your family and friends’ perspective.
Living with FMS is tricky because it is such a complex condition. As well as living with this condition, I have researched it a lot! It’s difficult to understand, it’s difficult to explain and it’s difficult to describe.
There’s a famous saying, “If you can’t explain it to a 6-year-old, you don’t understand it yourself.”
If I can’t explain it, describe it and much less understand it, how can I expect other people to? Be patient with people — they will say things that hurt, they will expect more from you than you can achieve. They may think you are lazy and you will have to keep explaining yourself, but most of all, chances are they just want you to get better. They don’t understand it, because you don’t fully understand it yourself. I find the best way is to just be honest. Tell them if you can’t do something but also what you can do. Tell them when you are having a bad day or a flare-up, but also when your day is “good.” Tell them your symptoms, even on a good day, but don’t expect them to understand until you do!
2. Make it your new normal.
You have a chronic illness, it is not going to get better or go away. You may be lucky enough to have a recession, but the majority of us don’t. Learn to live with it, learn to manage it. Become self-aware and understand your symptoms. You may not fully understand the condition, but get to know the symptoms you have before a flare-up, for instance. I know if I get swollen glands, a fever and loss of appetite, there will be a flare up in the next 48 hours. Most importantly, plan your day around your symptoms. I tend to have more energy after a shower in the morning. I generally need a nap in the middle of the day and my pain is at its worst in the evenings. This is my pattern generally, but I have to accept changes as they come and new symptoms as they arise. This is normal for me now. It’s all part of living with a chronic illness.
3. Treat yourself holistically.
Not only do I have fibromyalgia, I also have migraines, cluster headaches and vertigo. I try not to keep them separate from each other. Treat yourself as a whole and not as a list of conditions. Your symptoms are part of you whether they come from one condition or another.
4. Create a new standard for yourself and be proud of your achievements.
Adjust your measuring stick. If you can’t do something like you used to, make what you can do your new standard and be proud of it. I know, if I tried to do a five-mile hike with the dog, not only would I be wiped out, the dog probably would, too. But, if we go for our 20-minute stroll in the park and we both feel good, even on a bad day. It may sound trivial to some, but every day, I am proud of myself for getting up and doing that walk. Don’t beat yourself up if you can no longer do the things you once used to.
Think about the boom and bust theory. We all do this, without realizing or without intention. On a good day, you do everything you can because you don’t know when your next good day will be. Then, the next day you are in pain and severely fatigued, so you do nothing in order to recover and hope for another good day soon. The theory is, do less on good days and more on bad days. The idea is to become time-focused instead of task focused. In other words, set a time for activity instead of just your normal full task.
5. Plan for the crap to happen and accept that you will have horrible symptoms.
Life is not perfect. Sometimes you can plan and pace yourself meticulously but there will always be something that disrupts your life. Don’t let it faze you. Crap happens to everyone. We just have to accept what happens and expect that there will be bad days and flare-ups, it’s just part of having the condition. Make sure you have a well-equipped flare-up box. This should always be part of the plan.
6. Ask for help and accept help.
You can’t do it alone, you have to ask for help. This is one of the hardest lessons I’ve learned. You may think it’s a sign of weakness in asking for help, and that it has always been quicker and easier to just do it yourself. Unfortunately this may no longer be the case. Asking is now obligatory. Accepting help can be equally difficult but it’s time for someone else to take the strain. Life with FMS is not easy. It isn’t often that people will ask you if you need help, so when they do, be gracious. Your loved ones will not want to see you struggling, they will want to help, so let them and show gratitude with a smile and a thank you. That’s all they want in return.
7. Don’t be afraid to let it define you.
I don’t mean go to bed and let it take over your life. I just think we shouldn’t be afraid to let people know we have a condition that impacts our life. Life is difficult enough without making it harder by ignoring issues that can bite. You should be able to tell others that there are things you can and cannot do because of the symptoms you have.