12 Things I learned from living with Fibromyalgia

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Halloo,

I have always wanted to make my impact in this world and I had so many grand plans of how I was going to achieve this. Then, fibromyalgia came calling and all that burning desire seems gone for good. I became lost and couldn’t find my purpose. It is like a death sentence to someone like me, an ambitious person.

Well, through many twisted journeys I started to find myself again. I realized I was never lost in the first place, I just lost touch with myself because of a bump in the road in form of chronic illness.

I came to the conclusion that may be this Fibromyalgia was God’s plan all along to lead me to my purpose. I discarded all my old ideas and start looking at my current situation, my abilities, capabilities, energy level, and other things associated with living with chronic pain and fibromyalgia and a new plan started to form.

This new plan is based on these few things I have learned from years of living with fibromyalgia, have a look at them:

1. Empathy

Have you noticed that most empaths have gone through traumatic experiences in their lives? I think it comes from wanting to give someone the kind of support they wished they got in their own hour of need or give give back the kind of support that helped them climbed out of a dark abyss.

I want to believe that before fibromyalgia I was a very caring person. Whether this is true or not I am not sure. One thing is certain now- I am more empathetic than before fibromyalgia. I don’t wish anybody to be subjected to any anguish unnecessarily, so I always stand up to help.

I give my support even to those who have wronged me in the past and I don’t really relate with anymore. If they reach out to me I will help and support them no questions asked. I will do my best for them and release them once I see that the storm is over.

I do this not because I want to be seen as a good person. I do this because I have been in some dark places in my journey with fibromyalgia, with no one to help me. I know what that is like. I will feel responsible if I can prevent that happening to another person but didn’t do anything.

2. To trust myself more

Living with an invisible illness means you are faced with different kinds of people constantly. You have people who wants to advise you. You have people who wants to sell you things. You have people who wants to pray for you . You have those who wants to judge you. The list is endless honestly.

Fibromyalgia taught me not to mess around indulging people just so i don’t upset them. I didn’t know this at the beginning. This created a lot of diversions and waste a lot of time. Some people mean well and really want to help, but I should have listen to my own body and trust myself more. I know what they don’t know about my health and I should have stayed with my plan.

Once I started to trust myself and my journey things started becoming clearer and easier. Yes, there are still bumps on the road and many a time I had to retraced my steps but it wasn’t the muddled way it was at the beginning where everyone had an opinion on how I am supposed to do things. I am more confident in my own choices now, after all I am the one wearing the shoes, only me knows where it pinches.

3. Leave bitterness behind

I lost my smile for a while. This is huge because my smile is one of the things many people remember me for. I am the child that is always smiling, even when things are not going my way.

When life became too difficult I forgot to smile without even realising it. I became bitter unknowingly. I know that fibromyalgia and it’s many friends are responsible for this, but it’s through the acceptance of this debilitating condition that I came to get my smile back.

I learn to accept fibromyalgia for what it is. I make conscious efforts not to be bitter, in fact I do everything in my power to bring sunshine to my life despite the constant pain. It is important for my mental health and my happiness.

4. Redefine what my success should look like

I was a perfectionist and I had to let go of that. Well, I think I am still partly a perfectionist but I am more relaxed and forgiving of myself and don’t go beating myself up if things didn’t go exactly as planned.

Fibromyalgia taught me that all those grand ideas of mine as a young girl of doing great things and making impact are still do-able, just need to be redefined. I can still make impacts just not where and how I thought it was going to happen.

I am capable in my own way. I just have to look for activities that are within my abilities and current situation. I have no point to prove to anyone but to make myself comfortable, happy, and live a peaceful life. That is success on its own!

5. How to manage my time and energy

Once I realised that I don’t have the same level of energy like others and I get tired very easily, I started to preserve my energy and time for things that are very important.

Prioritising important activities become very crucial. I know not to push myself to breaking point on pain-free days, this will only create more problems in the long run.

As I learned to listen to my body I started seeing positive changes. It is better to do little happily than keep pushing to do a lot till you have complete break down.

6. Resting is not laziness

Pain is draining! Both physically and mentally. Now, chronic pain is on another level of its own. With fibromyalgia a lot of time is spent in bed, contrary to many people’s believes, in bed not resting. Most of the times it’s in agony.

I speak for myself here because no two sufferers have the same symptoms. Even on some pain-free days I am too exhausted from dealing with Chronic pain for days that I just stay in bed.

At first I used to feel guilty about this. I tell myself to get my acts together and get some work done since I am not in pain anymore. But I have come a long way from that negative thinking. I now take as long as I needed to get up, I do a lot of work in bed. It is paying off.

The number of hours spent working is not a guarantee for success nor is it the yardstick to measure success. I learned that physical activities are not the only work worth doing and you can work from anywhere.

7. To Remove myself from toxic situations

There are too many problems that come with living with an invisible illness. I have to learn not to add to these problems on purpose. Some situations are just not good for me and my mental health, walking away is the best thing I can do if I want to give myself a chance at living anything close to a normal life. I learned this the hard way!

Once I started seeing the positive results from leaving toxic situations and toxic people, I never look back. I learned to say NO without feeling guilty. I remove myself away from judgemental people without fights or dramas, I simply walk away.

8. Stop looking for validation

I realised that the tiny effort I am able to put into my work may not be grand enough for some people to consider worth commending me for. But I know the sheer determination that got me where I am, they don’t.

Invisible illnesses are like that, you never know that the person standing in front of you, who look absolutely fine, is broken. So it is understandable that you overlook their efforts as nothing. Unfortunately this affects the person’s mental health. How do we solve this?

Stop looking for validation. It is not easy but trust me it is do able. I started by teaching myself to appreciate myself. I try to do things because I genuinely believe they are worthy of doing and not because I want to gain popularity or to be appreciated.

If I put up a post on social media and nobody engaged with it, I never get upset. The post was to help or entertain, if it doesn’t do any of that, why get upset?

9. Make peace with my limitations

The easiest thing is to list all the many things I can’t do because of fibromyalgia. I have done that on so many occasions and replayed the list in my head on numerous times. What did that solve? NOTHING!

Even those without any limiting conditions do have their own personal limitations. If we all wait or wallow nothing will be achieved with our lives. I made peace with my limitations and accept them for what they are.

There are things I can still do, even the mere fact that I live with fibromyalgia is a skill on its own. I learn to start doing what is still within my abilities and still make something of myself and my life.

No 2 persons are the same. Even if you are bed bound, if you can still think and manage yourself somehow, do something. It is helpful for your mental health too.

10. Getting help is a sign of strength

I openly admit that I am not very good at asking for help. I am still a little bit like that. Fibromyalgia showed me that speaking up is beneficial and there are so many resources out there to help.

There are people in the same situation as myself, some have been living with this longer than I have and they have a wealth of experiences and information to help make life easier for me. These people are willing to share, why not tap into that?

I never considered getting help as weakness, I think I am just used to solving my own problems by myself or that is what comes naturally to me. I am not sure which is which. I do know though that the day I found other people living with chronic pain and fibromyalgia was the day my life took a turn for the better. A lot of things started to make sense.

11. Enjoy every moment I can

Most of the fun things many people do with their young children are things I can’t do on regular basis. It is disheartening and I sometimes feel bad for my children.

I learned to seize any opportunity I get to do these activities with them. I may be pain- free today and spend the next 2 weeks in agony. So whenever I can we just go for it. I try to engage with my children as much as I can even on trying days. The day may not be perfect but we try to make the best out of it.

Fibromyalgia taught me that tomorrow is not promised, so make the best of today. I take nothing for granted. Every minute is very precious.

12. Not everybody hanging around you really care

One of the first things I realised early in my fibromyalgia journey is that not a lot of people really care. You may have a lot of people around you and they might want to help, get you cured and move on.

The story will quickly change when they realise you are not getting cured. They start getting impatient with you, ignoring you, avoiding you, doubting you, some go as far as to mock you to your face. Family members and friends are included here.

It was a shock at first and very distressing, but I adjusted. Now, I know people come and go and I have to accept that. I learned not to trust what comes out of people’s mouth. And I do things on my own terms.

I am writing this to tell you that no matter what your situation is please get up, re-evaluate your life and see how you can still make your dreams come to reality. Some of the things mentioned above may sound cliched to you but you will be amazed at how many people know these things, say these things, but never practise them in their daily lives.

Nobody said it is going to be easy, but then nothing good in this life comes easy. Don’t make the mistake of thinking that what you do have to be something huge and grand to make a difference, that is not the point. It could be as small as volunteering in a local charity organisation.

Do it if you have always dreamt of helping others but due to some life changing situations you can’t do it as you wish. Bottom line is don’t just sit back feeling sorry for yourself, fight back within your current abilities.

Stay with me,

Ruka

About Post Author

Ruka

My name is Ruka. Born and bred in Nigeria. Now living in Ireland. I am a Woman, Feminist, Wife, Mother, Muslim, Black, and African. I am an Entrepreneur who also works in Finance Administration. I am a Fibromyalgia & Chronic Pain Warrior. I love writing and hope to make a name for myself doing it.

rukaganiyu5@gmail.com

https://www.rukasplace.com

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