Do you have Fibro and are concerned about working when you have Fibromyalgia? Are you doing your best to push through Fibro symptoms and nothing is getting any easier? Believe me, I have been there. Learning to live with Fibromyalgia is not easy, so in this post I thought I would share with you everything I wish I knew at the beginning of my journey.
- Fighting through
- Mild Fibromyalgia
- Who is likely to get Fibromyalgia
- The importance of Work
- What about Money?
- Financially Relying on others
- The Potential of Working when you have fibromyalgia?
- Working and Mental Health
- What do I count as work?
- Defining work to you in my terms:
- The Essence of my Work with Fibro
- Counting my Blessings
- Advice for those who doorway to work has been closed
- To conclude the Importance of Work when you have Fibromyalgia
One thing you may have noticed is that Fibro symptoms are not consistent. If only they could be predicted and worked around. It is sods law that you can have a really important event happening on one day of the week, and that is the day when you are at your worst, unfortunately that is the reality of working with Fibromyalgia. I talked about this in the post: Are Fibromyalgia symptoms consistent? It is also critical to let you know that stress makes symptoms worse, that is covered in the post too.
If you are very new to the concept of living with Fibro, I would like to reassure you that every one is different. Some people have milder symptoms and are able to stay in their current occupation for the long haul. Please don’t think I am trying to scare you. However, some people’s symptoms are far worse from the beginning and others like me, got gradually worse. So it is worth thinking about these things in case your current situation changes.
Who is likely to get Fibromyalgia
Whenever I join a new Facebook Group or Online Community I am often struck by the number of people who, like me, were highly productive people before Fibro entered their lives. I certainly don’t have any official statistics for you but reading so many people’s stories it seems that Fibromyalgia is not a condition that inflicts the lazy or unambitious but rather seeks out life’s overachievers. Of course, I would love to hear from anyone who can contradict me. Is there anyone out there with Fibro who before the condition rose its ugly head “Just went to work for the money” I’d be happy to be proved wrong. As an overachiever work is naturally important.
Ending my Career!
Having battled through for quite some time, ringing in sick when needed and letting people down. Dealing with the employer’s Attendance Management procedures. Without understanding the relationship to stress and relapsing as soon as I was due to return to work. I reached the point that it was not fair on me, my employer, or my clients and after dealing with a triple flare-up of my symptoms I very sadly asked to be dismissed.
The importance of Work
If you are a previous overachiever or workaholic I want to talk to you about the importance of Working when you have Fibromyalgia. Let’s be clear I’m talking about work you can actually do. If you used to do a demanding physical job before your Fibro diagnosis the likelihood is that, if not initially, as the condition progresses you will not be able to sustain this. But there is a good chance if you consider all of your skills there are other things you could do.
What about Money?
I actually began this blog before I left my employment, and hoped if I did everything possible I may earn something from it. However, I want to give you a reality check. Very few bloggers actually go on to make a living from it. The chances are further reduced due to living with a chronic illness.
Then I decided I would try and grow my card making from the odd commission to at least some sort of steady trickle. I wrote about my plans in the post, Exciting I’m becoming Self Employed. Although I continue to get the odd repeat customer greetings cards seem to be less popular these days (In the UK anyway) When remember the amount of Christmas cards I used to pin up in the living room twenty years ago…
Financially Relying on others
The reality is that I am financially dependent upon two sources, first and foremost my husband. Secondly I receive a small top up payment from the Government. If you are British you can check out my post Fibromyalgia in the UK: Comprehensive Advice for details of this.
The Potential of Working when you have fibromyalgia?
As I discussed at the beginning of the post, symptoms vary, and although they are not predictable or reliable there are good days. On those good days I often think. Wouldn’t it be great if there was a versatile online employment agency for the chronically ill. In the same way that traditionally agencies sent staff into work places in this digital era I am sure that it could all be done online with flexible hours available.
An Online Agency?
Imagine how good this could be? Not just for the chronically ill, who are often unable to leave their home with any level of frequency, but also for employers. Either large companies who have a little bit too much for their staff through to small companies or even entrepreneurs who need some minimal support. The Covid-19 lockdowns proved that far more work could be done remotely than many employers imagined. On top of this the currently inaccessible chronically ill overachievers could use their skills and help grow the economy.
Working and Mental Health
I have said this in many posts before, but one of my mantras I try to live by is that “Fibromyalgia has taken so much from my physically, that I refuse to give in to depression and let it take from me mentally.” Of course, this is a mantra I try to live by, but there are times when you can’t help be brought low. It is bad enough here in the UK where there is a pretty decent work-life balance. I can’t imagine how my American spoonie friends manage where so much of life seems to be built around your occupation, from what I have heard from American YouTubers anyway. Being able to work with Fibro when capable would go along way to help with self-esteem and mental health.
What do I count as work?
Given the importance I place upon working when you have fibromyalgia. I have had to do the self-preserving act of redefining what I consider to be work. Let’s start off by defining it.
Defining work to you in my terms:
- Work gives you a sense of purpose
- work allows you to have a sense of satisfaction when you have done it well
- Work absorbs you enough to distract you from the pain
- Work provides a community and brings you together with like-minded people
- Work provides an opportunity for creativity to spark
- Work encourages us to be the best version of ourselves.
The Essence of my Work with Fibro
This blog alongside my short form content blog/newsletter is one of my main jobs. There are times I am doing well and throw myself into them, then other times when the Fibromyalgia and associated symptoms are winning, and I go a bit quiet. I won’t lie it would be great if I was one of those lucky bloggers who have a viral post and everything changes, but I can’t physically afford to stress about it. I enjoy the process.
I enjoy my Genealogy and at times spend a lot of time on it. My interest lies far outside my personal family tree, I have a general interest in history and spend quite a lot of time working on WikiTree. If you are unfamiliar with this shared family tree you can read my review of the website. Genealogy is a possible future area of income given my twenty plus years of experience and so many people wanting to know “Who do you think you are” but not having the time to find out.
Personal Productivity and knowledge management is something I take quite seriously, I often find myself embarrassed by how little I read in this era of video and social media. I am trying to do something about that and increase my consuming of many areas of knowledge. Our late Queen stated:
“I have sometimes thought that humanity seemed to have turned on itself: With wars, civil disturbances and acts of brutal terrorism… This world is not always an easy or a safe place to live in, but it is the only place we have.”HM Queen Elizabeth II
Although my morals are concrete there is nothing wrong with gaining a broader understanding or why others choose to travel a path that is miles away from that travelled by anyone I know. There are some practical benefits to Personal Knowledge management for spoonies that I previously wrote about.
As I mentioned previously crafting is one of my passions that does bring in a small income. Underneath my computer monitor I have a £5 note sitting there to remind myself that my creative talents are of worth.
This may be harder to explain, but I play World of Warcraft and the ability to gain achievements and emerse myself in a community that isn’t based around having a chronic illness is a welcome escape, did I mention I could ride along the beach in a horse or fly through the sky. On that screen, in the virtual reality I can almost feel well again.
Counting my Blessings
In general, I do have to count my blessings. Yes my health is completely unpredictable, and my pain threshold has been stretched. But I have a husband who took the time to understand the condition and completely supported me leaving my employment. I couldn’t imagine, like some people with Fibromyalgia having another half who literally doesn’t believe they are sick.
Add to this that there are young children living in hospitals with rare conditions who have never experienced a pain free normal day in their lives. It hels so much to keep a perspective.
Advice for those who doorway to work has been closed
So what happens now if you have been diagnosed with Fibromyalgia or another Chronic Health Condition and you can no longer do your work. Perhaps it was too physically demanding or maybe the stress levels are unsustainable and you simply have to give up your work. Or the decision has been made for you and is now out of your hands.
Review your skill Set
We all have a much larger skill set than we are aware of. Quite often people find themselves in a position of defining themselves in terms of what they do for a living but it is very rare that this is all we are able to do. For readers in this country, we have the National Careers Service. Their skills health check is really useful for considering what skills you do have and encouraging you to look at things in a new way.
What if I feel too ill to work?
We are all different, and our Fibromyalgia symptoms are all different. I quite agree there will be things that some of us can do whilst others can’t. I am certainly not here to judge anyone’s ability to contribute but to talk about making the most out of what we have been given. Learning to live with a Chronic Health Condition goes through several stages and there is a good chance that at some point on the journey you will question your abilities and maybe feel unable to work any more. I had to make that painful decision. If you are at an early stage in your journey I would begin to consider what you will do if things get worse.
Cut the commute
I’ll be honest at the later stages when still in employment the hardest part of my working day was the commute to the office. This was only about 15 minutes each way which may seem nothing to someone without health complications but if I’m honest the journey each way is harder than the job at times. If there is a way you could work remotely this may keep you in employment for a longer stretch.
To conclude the Importance of Work when you have Fibromyalgia
I have come to the conclusion that when I am productive, occupied and focussed I am living life to the fullest and I am winning. I think it is fair to say that all of us are trying to retain as much of our former selves as we can and not letting chronic health grind us to a halt. Why should I let Fibromyalgia define me completely? If I stop and give in to it not only will the condition have won but also the pain will be far less bearable.
Have you ever been in pain then totally lost yourself watching a program on TV or reading a book until you can’t even feel the pain any more until the program ends, or you put the book down? That is what sometimes happens for me when I do manageable work. If the work is something that you love it is even more satisfying.
Until next time,