During a recent health appointment, the practitioner asked “So how does your fibro affect your day to day life?”. It was probably the first time that anyone in a professional capacity had asked me that during almost a decade since being diagnosed. I gave an answer which, hopefully, painted a picture of what my everyday life is like but later on, when I thought more about it, I realised that there was so much more that I could have said. With Fibromyalgia Awareness day being 12th May, I thought I would expand on this a little by way of a blog post. As many of us living with fibro and other chronic illnesses can be quite isolated, it can be easy for our voices and our stories to be overlooked and so I feel that there is value in sharing our daily experience.
Before I begin, let me stress that this post concerns my lived experience with fibro. I’ve met fibro warriors who are mainly bedridden and also those who hold down a full time, stressful job role and are able to live a “normal” life. Fibro affects people differently and, as such, my experience may look very different to that of anyone else.
I could summarise how fibro has affected me by saying that my life now is unrecognisable from how it was pre-fibro – where I go, what I do, who I spend time with, my financial situation, everything has changed for me. But to go into a little more detail, here goes…
1 – I’m able to do much less than before
Gone are the days when I could transition seamlessly from one activity to another and another in a day. Nowadays, my days and activities have to be planned with military precision. Although I do have days when I am bed-bound by pain/fatigue/migraine/dizziness, where I’m mostly at with fibro right now is that, at best, I can manage to do one “big thing” a day. The “big thing” could be attending a medical appointment, going for a swim or meeting a friend for lunch. Likewise, domestic tasks such as doing a batch cook of meals or some housework might be the day’s “big thing” (and will take me many times longer than it used to do). But there can never be more than one “big thing” in a single day as I just don’t have the energy resources. Activities need to be planned and spaced out accordingly with a rest gap in between and as a result, I’m not able to do as much as I used to do.
The chasm between what I want to be able to do and what I can actually do can ignite feelings of frustration, inadequacy and even jealousy when others can do so much without even stopping to think about it.
2 – My world has shrunk considerably
I used to have an office based job with some domestic travel. I loved going off travelling home and abroad as often as I could. Weekends would rarely be spent at home as I wanted to be out and about as much as possible.
These days, I don’t leave the house that often. I do enjoy pottering in the garden and walking around my immediate vicinity when I can, but I can go for days without straying more than a couple of hundred metres from my home. Don’t get me wrong, I feel lucky that I can do this as I know that for some people even that isn’t possible, but looking back, it’s all so different from my old life.
Driving is problematic for me which further limits where I go. Most of the time, a combination of pain, fatigue and medication means that I don’t drive very much as I simply don’t feel safe on the road.
3 – My career path has changed
It’s impossible for me now to imagine how I could ever have woken up just before 6am, got ready for work, driven to the office and been at my desk bright eyed and bushy tailed by 7am, ready for a hectic meeting filled day where I would maintain a level of focus and concentration throughout.
These days, a good day is being able to prise myself from bed and have breakfast by 9am. Needless to say, the career path has reached a dead end.
4 – Relationships are different now
I’m very fortunate to have a supportive husband who “gets” fibro, understands my mostly limited capabilities and does whatever is needed to help. He’s the one person who sees me and fibro how it really is, and helps me when I can’t get out of bed, don’t have the strength to shower for days on end and pain makes it impossible for me to dress myself.
Outside of this though, my relationships with the majority of other people, even family, are troubled. I’m mostly wary of others now because of the years of snide comments, not being believed about my illness and failure of others to comprehend how I can possibly be ill when I look “fine”. These days, I just don’t interact with non-believers and choose to spend time only with those who do understand what I’m living through. The obvious result of this is growing isolation and I have much less social interaction than was ever the case before.
5 – I have changed as a person too…
…in ways that I would never have thought about pre-fibromyalgia. I’ve written about this in another post here, which describes how I am a different person to the one I was before my diagnosis.
And so that is, for me, how fibromyalgia affects my day to day life and my quality of life.
How does fibro affect your life on a daily basis? Do you have any different experiences to share?
Thanks for reading 🙂
6 thoughts on “Fibromyalgia Awareness Month – How Does Fibromyalgia Affect Day to Day Life?”
For me it’s difficult to say how fibro affects my life. In hindsight, I’ve adapted my life around my (im)possibilities long before I knew what I had. I knew that I was tired a lot, I knew I was in pain more than other people, but I wrapped my life around it.
Luckily, I’m one of the patients, who is able to work, but not as much as I want to and not the job I would like to. I also have a husband who helps me and is there for me and my hobbies are the ones I’m still able to do.
I don’t make to many plans and when I’m going to meet people I always say I’ll try to be there, but it’s possible I’m not able to. The friends I still have, they understand.
Hi Ria – thanks for reading and for your comment. I can totally relate to what you say about adapting your life and wrapping your life around it is a great way of putting it as that’s just what we have to do. It’s great that you can still work and that you have support at home too – supportive family can make a huge difference.
Very best wishes
LikeLiked by 1 person
I love that you’ve shared this. It’s not easy, but you’ve done it brilliantly to get an insight into your lived experience of Fibro. I’m really glad you pointed out how different the experience can be between people too, from those holding down a full time job to those bedridden.
I feel like I could have written a lot of this myself (just not as well as you!) It’s hard to get across exactly how insidious it is. I have other issues that impinge on my day to day like stoma problems, migraines, nerve damage pain, autoimmune problems etc, but to me it all mixes together as one whole load of ‘meh’.
I’m so glad you have a supportive hubby (thank you hubby!!) but I’m sorry your illness has affected your relationships, including with family. It’s more loss, one on top of the next. It’s hard to deal with the feeling of being judged even when we’re not. Like it’s inside our heads now that we owe explanations for why we are like we are, or we feel like we’re fraudsters around other people, and it’s more pressure none of us need.
Well done on this post, Sarah. Fantastic! xxxxx
LikeLiked by 1 person
Thanks for the comment Caz 🙂 I think you’re right about having other health issues too, everything combines so you don’t know where one issue ends and another starts. All you know is that you feel rubbish. And yes, totally with you on feeling like others are always judging us and what we do or don’t do. Sometimes it’s just easier to stay at home with the dogs!!
Have a lovely weekend xx
LikeLiked by 1 person
It is great that people are sharing more about Fibromyalgia and what it can really mean. So much of my life has changed including daily pain and now I can’t go into the career that I wanted before my accident and diagnosis. Thank you for being so open and honest.
LikeLiked by 2 people
Thanks Lauren. Sorry to hear that fibro has had such a big impact on your daily life and dreams, it can be really hard to figure out a new path to follow when fibro blocks the way and I hope you will find a way of getting to where you want to be 🙂
LikeLiked by 1 person