Welcome to a free edition of Start Up To Grown Up: Your source for ideas, insights and tactics to take back control of your business and scale it sustainably and profitably by Heather Townsend, award-winning author of The Accountants’ Millionaires’ Club and Founder of The Accountants’ Growth Club
It appears that I am unwell.
But apparently, despite feeling well and no obvious injury, I am unwell.
Before any of my regular readers and friends worry, I don’t have anything like cancer or anything life-threatening.
But I did set out my stall with my first Substack article, writing is my form of therapy. And I am unashamedly processing stuff with this article.
But the truth is, I am unwell. And until I can manage my ‘condition’ better, I will carry on being unwell.
Those of you who’ve been following me for a while know that in December, my ankle flared up again, and I had to have minor surgery on it in March. Then, after a really good recovery from that surgery, my wrist sustained some cartilage damage. It appears that 6 months of high levels of pain have tipped my body over the edge.
The rheumatologist gave me 2 labels on Tuesday. The first was completely expected: ‘hypermobile Ehlers-Danlos Syndrome’. I’ve known I have had sensitive skin and hypermobile joints for nearly 30 years. It’s why in our house we have the most gentle washing detergent, otherwise I (and to be fair, the teenagers) will be itching and scratching.
That label wasn’t the problem.
It was the next label.
Fibromyalgia.
Yup. Where did that one come from? But it explains a hell of a lot.
The problem is I associate people with this condition as properly broken. And that’s not me. I’ve worked with people who deal with Fibromyalgia who can’t get out of bed, use crutches and at times can’t function. That’s definitely not me.
Despite dealing with nasty fatigue, comical brain fog and poor concentration, I don’t consider myself unwell. After all, I just thought that was the delights of perimenopause and needing to get my HRT more suited to my circumstances.
I’m not in denial about getting this label. But if I am honest, I am in partial denial about what it really means. In my head, I’ll work harder to get fit and strong again whilst stabilising my unstable joints. Then magically I’ll be better again and my Fibromyalgia will be in remission and stay in remission.
But that may not be the case. I’ve already said yes to talking therapy and probably will decline the low-dose antidepressant that is being offered to help manage the pain. And let’s talk about pain for a moment. I have a high pain threshold. So the stuff I deal with every day is water off a duck’s back. Not to be rude about my husband, but if he had to put up with half as much as I do, then he may be a little less wimpy when his calf seizes up again.
This is the problem, my body has got so used to chronic pain that it’s now gone into a fight or flight situation. Where it is so sensitised that it makes every little thing hurt. As I type, I have nerve pain in my toes, my lower back is aching, nerve pain in both elbows, and my left wrist has decided to tell me it’s still not fully fixed. And that’s fairly normal for me most days. As a result, my pain receptors have gone into overdrive and are now magnifying each little tweak, donk or slight problem.
The answer is simple: my central nervous system needs to come out of high alert and calm the f*** down. Only then will I have more energy, fewer bouts of extreme fatigue and recover my concentration. I’m not ADHD, but this fibro-induced brain fog means my concentration levels are such that I may as well be ADHD.
This is how I am feeling this morning. Yesterday, I had a long-overdue deep-tissue massage with my usual masseur. She’s rudely taken a holiday last week, just when I really needed her after my pilates retreat. As a result, it was an intense and fairly painful massage. But at least my shoulders are now in the right place. However, this morning I feel drained and nauseous. Like I have a hangover. But this is my central nervous system telling me it topped out yesterday from the massage.
As my consultant said, “you can’t carry on like this”.
And yes, I’ve accepted that some changes to my lifestyle are necessary.
For the rest of the article, I will discuss how I'm processing the news and taking ownership of my situation.
No one else is going to save me.
Reaching out to my support network:
I’ve a number of trusted professionals and friends around me that I do and will call on when needed. And yes, I’ve called on nearly all of them. That means I already have the right nutritional plan to maximise my energy. My Personal Trainer is ready for instruction from the physio on a ‘safe, supervised exercise plan’. And my physio has been told that I am required to have ‘physio’, and can we speak about it? (Not sure what this extra physio needs to be!)
My masseur knows she is part of the weekly non-negotiable plan to put this dratted thing into remission. This week, I worked with my Executive Assistant to put in a 4-day weekend every month between now and Christmas. Then there have been conversations with friends, who are dealing with lifelong conditions that need to be managed, on how they came to terms with it.
My question to you is, do you have this support team in place? Of people you can call on - whether as a friend or paid professional - to help you get through a tough patch.
Make it time-bound
I know I am being slightly naive here, but I think I can get this Fibro thing into remission. With the benefit of hindsight, I think it started back in the pandemic when I was dealing with the stress of the pandemic, being gaslit by a former employee, keeping the business afloat and 2 years of really bad nerve pain in my ankles and feet.
The cold hands that wouldn’t warm up? That’s a fibro thing.
The feeling like I am hungover after a late night? That’s a fibro thing.
The knowing that if I push past a point of fatigue, I will be wiped out the next day? That’s a fibro thing.
I’ve got it into remission before, so I can do it again.
However, I have acknowledged that this is a long journey. I’m not going to wake up tomorrow and be firing on all cylinders, oozing energy. There isn’t a magic pill that will work to calm my central nervous system down. So, I’ve said to my Exec Assistant that we need to treat me as being unwell between now and Christmas. Actually, she may have said that to me. But, I’m claiming it.
It was the same when I chose to shift to a long-term low-sugar diet. Not a faddy diet or a temporary change to lose weight. No, a long-term lifestyle change. With that change, I committed to the diet for 90 days. And you know what, I felt much better for it. So, it’s now become my normal. After all, who really enjoys sickly sweet desserts? Apparently, according to my husband, there is no such thing as “too sweet”.
What of my identity is NOT changing?
I’ve been chatting with my friend who is dealing with the impact of living with rheumatoid arthritis. Part of me is highly relieved to have avoided this diagnosis. (It was one of the reasons for a conversation with the rheumatologist.) I wanted to know how she came to terms with what is a nasty diagnosis with huge impacts for her current and future quality of life. But more importantly, how she viewed herself.
What’s been causing me the most angst over the last 24 hours is the perception of erosion in my identity. I’ve always thought of myself as the strong one. The resilient one. The one who always bounces back. Well, it appears that I now need to learn to ask for help and take on the mantle of ‘unwell’.
My friend asked me, Who am I now to become? And it’s a useful question to play around with. Funnily enough, not much is changing. Yes, I need to shift some of my more unhelpful stories, such as “I’m bulletproof”. It appears that my body has told me that it isn’t the case. But there is a huge amount that isn’t changing. I am resilient. After all 24 hours after the conversation with the rheumatologist, I’m not some wibbling wreck curled up in the corner. I’ve already started to put in place the pillars of ‘how I am going to get better and this flare into remission’. And I am still mentally strong. Yes, the brain fog is frustrating.
But this isn’t going to keep me down for long.
I’m the sort of person who is energised by a challenge.
I think the universe has just given me another challenge. Who knew?
Getting granular with what ‘pacing’ actually means
As I have discovered after a brilliant pilates retreat, doing too much is counterintuitive. It may feel good at the time. But there is the inevitable setback as my body is wiped out for an indeterminate amount of time. I’ve never been very patient. And this doesn’t help when I am supposed to pace myself. Oh, and run a growing business at the same time.
Pacing yourself is for people who are unwell. Oh. That’s me, isn’t it?
So, I’m currently working out what pacing actually means for me. What is too much? And at what point do I put up a white flag and say, “I can’t do this”.
No insight yet on what pacing means for me. But it is something that I am working on. For example, the 4-day weekends once a month have already been booked into my diary between now and Christmas. But I’m learning each day about what stresses out my central nervous system. I now know that after a physio session, I need to go easy on myself. It’s the same the day after a deep-tissue massage.
Realistic goals
I have realised that my life now is different. Not bad. Just different. But deciding to get back to who I was and what I could do before the ankle injury kicked off again in December is unhelpful. However, I do have a list of realistic and achievable goals in my head. These are:
Be back at walking netball weekly. (That starts on Monday)
Be able to walk for 5km and not be wiped out for the rest of the day
Get back on my water rower and get my 2km time back to sub 9 minutes.
Hold a forearm plank for 90 seconds. (Currently at 45 seconds)
Do the Center Parcs circuit on my mountain bike and not be wiped out for the rest of the day
Stabilise my shoulders so they stop winging and trapping my nerves.
If I can get this stuff done then there is a good chance I will have kicked Fibro’s butt into remission.
What have I got in my kitbag to help me?
When I first got the news, I felt like my world had collapsed in on me. Would I ever regain my energy levels and become the person I know I really am? But with some processing of the news, I am tapping into my kitbag to help me move forward. Firstly, I’ve looked at my identity.
I love a challenge and proving people wrong. Hello? If this isn’t where I am now, I blame the *** brain fog.
Even writing this, I am feeling the energy in my fingers start to fizzle. There is a small smile creeping onto my face.
Years of living with hypermobile joints (or should I now say hEDS?) and coeliac disease mean I am pretty disciplined when I put my mind to things. What I’ve realised is that discipline now has a new focus. Of course, I’ll still be eating healthy, low-sugar, minimally processed food that is strictly gluten-free. However, this discipline will now be aligned with my new non-negotiables of self-care.
No-one is coming to save me
It’s tempting to think that there is a magic pill that can take the problem away. But there is no pill that will do that in this situation. Actually, I am being slightly economical with the truth. There is the option of a low-dose antidepressant that will calm the central nervous system down and reduce the pain. However, that comes with side effects that could exacerbate my fatigue. The very thing I am trying to get to FoxTrot Oscar. And for the moment, my levels of pain are manageable. So, for now, I wouldn’t take the pill.
However, I have realised I have to own my situation. My problems are both mental and physical. By the way, it doesn’t feel good to admit to a mental health problem! That means I have to take my medicine each day. And that means exercise and mindfulness. Today, even though I didn’t feel like it, I walked for 20 minutes before breakfast. I’ve popped my Sensate on for 30 minutes which has left me feeling calm and relaxed.
When I had to deal with this 4 years ago, I wrote a journal every day for 3 years. Each journal page was split into 3, with each section corresponding to a year. What this did was allow me to see in years 2 and 3 exactly how far I had come in my journey to overcome debilitating nerve pain.
Reminder to self: time to start this exercise up again.
Be careful with my language
My first reaction when I got the new label from the Rheumatologist was to think that I was broken and would become a drain on society. Let’s be honest, I’m currently unwell, but not broken. And if I manage my condition well, just as I was doing with my hypermobile dodgy joints (sorry, my hEDS!) and being a coeliac, I wouldn’t be unwell.
But when you get this kind of news, the words you use about yourself really do matter. Yes, I am unwell, and this is something that will take time to fix. But this isn’t a death sentence. Neither am I guaranteed to spiral down into a long-term disability. Well, not if I can help it! With the benefit of hindsight, I’ve been managing fatigue for years. And this is just the next episode in the soap opera called “my dodgy body”.
How you talk about yourself really does matter. I’ve now realised that my identity isn’t changing, and neither am I broken. Yes, I am unwell until I get this flare-up into remission..
Final thoughts
Your health is your wealth. And your body really does keep score. This means that self care should be a non-negotiable in your weekly schedule.
Your actions this week
What do you need to do or tell yourself to make your self-care a non-negotiable?
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