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-fibro. I’ve written about this in another post here.
How does fibro affect your life on a daily basis? Do you have any different experiences to share?
Thanks for reading 🙂