I’ve just had a chat with a lovely lady who is relatively new to her multiple sclerosis and was grappling with whether to call it quits and go home from work, or stick it out and ‘man-up’ to the tiredness she’s feeling at the tail-end of a cold. The cold symptoms had ended, she ‘just’ had tiredness and lethargy.

When to keep going, when to stop?

It’s a decision I still drive myself potty trying to make.

In the worst throes, it caused me terrible anxiety and stress the minute I came-to in the morning, tell-tale tight chest wishing me ‘good morning!’ to another day of uncertainty, responsibilities and uncomfortable feelings of tiredness, aching, and inability to concentrate.

These feelings make it incredibly hard to make a logical call on the state of things, so it became an endless cycle of waking up, panicking to get to the computer in the study ASAP so I could get some work done before the inevitable fatigue and aching kicked in, mind racing and not concentrating properly, trying to take ‘breaks’ but never relaxing due to the cloud of further commitments over my head that I needed to achieve before the end of the day, napping for 2 hours but waking up feeling sleepy and awful until that feeling would wear off around 7pm when I’d be back on the computer trying to make my hours up.

I knew academically-speaking what I should be doing – starting the day by meditating to keep my stress levels in check, writing in my Dailygreatness journal to stay centered, using my pomodoros to pace myself, taking relaxation breaks to re-prioritise and be as efficient as possible with my set energy, doing some form of exercise to get rid of any excess adrenaline that I inevitably run up over the hours,  and basically ‘letting go’ of the anxiety of what might happen. Would my fatigue mean I couldn’t make that meeting call after all? Or might I make the call, but end up selling myself short with my lack of concentration, focus and enthusiasm, all brought about by my MS.

But that’s a lot of stuff. And it’s hard. 

It takes a lot of practice and a bloody amazing strength of character to keep eyes on the prize and not have everything bubble over; to be able to let go of the uncertainty that comes with chronic fatigue, those ‘what if’ thoughts. Fatigue can and does impact on plans all the time, and the impact has the potential to lower your work quality and output when it decides to rear it’s head. And for me, all these lifestyle changes didn’t seem to work well enough or fast enough to make enough difference. I’d inevitably finish most days absolutely done-in, feeling that I’d only achieved what I must, and only just. I’d have no energy for my partner, friends or family, and a sickening feeling that I’d have to do it again tomorrow. Yes, I might do better tomorrow, and it’s all just practice. Focus on what I’d done well, and try again, it’s a learning process. But I just could not relax.

I was exhausted and felt my life was running away. I was still comparing myself to my colleagues who are well and full-time with all the responsibilities that fire-fighting office work brought.

Having been in academia until I was 27, with its hardcore culture, it was not acceptable to me to do anything but my best. If I didn’t understand something or hit the incredibly high bar of quality of my fellow researchers, then it was expected that I’d just keep trying until I did. And if I still didn’t, well then the general culture led to a feeling of failure and embarrassment. Don’t get me wrong; I loved my time as an academic, and it has strengthened my skills in perseverance and confidence. I can absorb and understand most things if I put the time in. But I was still hauling this ridiculous measure of achievement and worth around with me when I became employed at a software company.

Employment as a software tester (which I had to learn from scratch) brought changes in culture, but with it a different measure of achievement; this time, quantity and deadlines. Turns out, those two words are anti-me. I’m a deep thinker and quality-over-quantity kinda gal, so this type of working didn’t fit my personality type and skills at all. But I believed it represented a shortcoming in, well, me. Add on more pressure to fit-in while dealing with the constraints brought about by my MS, my mistaken belief I had to, had to, keep full time hours, and you have a cocktail for a breakdown.

So what’s changed? 

Well, I hit a breaking point…or four.

Number 1

I realised how much stress we all put on ourselves in the current jobs market to do our very best, 24/7, to not take any sick leave because it’s ‘weak’, to keep pushing through until we break. Many of us are given more and more work and pressure to keep up with global demand and it’s not the done thing to put in boundaries and say ‘no’. But this way of working is not sustainable. Stress and mental health disorders are one of the biggest causes of long-term absence and, according to a number of business surveys, are on the increase as a reason for absence. It is estimated that each year one in six workers in England and Wales is affected by anxiety, depression and unmanageable stress. Chronic, excessive pressure is not the way to run a company. And it’s not the way to run yourself.

Number 2

The idea of self-care in this country is pretty alien to most. “You’re not going out tonight/you haven’t replied to all your emails but instead are taking a long soak in a hot bath with tinkly music?/you’re colouring in? (yes, Adult Colouring in in my Adult Colouring Book!)/ you’re doing a jigsaw, and then taking it all apart and putting it back in the box? But what do you achieve from these activities? And there’s so much work to still be done!!!” This is a very old-fashioned idea. Countless studies have shown that self-care is critical not just to stress levels, not just to mental health, but also physical health.

Number 3

I delved into my biggest fears, wrote them down, played with them, put them into neat boxes (as I love to do), broke them down, and realised that there’s always a way through. The way through may well involve changing your life in ways that are contrary to how you thought you would live. For example, for me, the way through was about not doing a 9-5 Monday-Friday job anymore, not leaving the house to join my colleagues every day, and not earning anything near what my peers were. It was not preferable from first-sight, but I came to realise that it would be a damn sight more preferable than living my life in fear, feeling ill a lot of the time, and trying to attain levels that I couldn’t anymore. And as I got to play with these ideas, I realised I was in the wrong work environment and living a lifestyle that didn’t optimise how I could be. I started understanding me, my strengths, and my drivers. And understanding that employment is not the only thing that can define someone, contrary to how society leans towards defining people in this way.

Number 4

I realised how much I apologise and often don’t even believe myself how my MS is affecting me. But then I started to note that, after a few hours, or a day, or a couple of days of feeling floored,  I felt more ‘normal me’ . ‘More-normal-me’ would look back and think “ah, yes, there was definitely a problem there, because compared to how I feel now, where I have the drive to do activities or write, that drive had gone”. I have started to know myself and trust my instincts for what my body needs. 

What’s my point?

When your fatigue or other MS symptoms hit, being able to judge, without guilt, whether you need to take a break or change your tack with your life is much more than a simple finger-in-the-wind technique. It actually goes much much deeper than that. Ask yourself what you’re currently worrying about or why you’re hesitating. Then go a step further – what are you afraid of? Who’s opinion are you concerned about? Then go a step further again – what actually defines me? And has what defines me been tarnished by what I think society expects of me or my own insecurities? Have I accepted where I am now, rather than pining for the past or a different idea of what life should have been, and do I hold guilt? What drives me?

Don’t get me wrong – this is by no means an easy thing to do! I navigated this minefield with the help of a couple of counsellors to guide me through and provide a framework. And I cannot stress how important this has been – way more than any other intervention that I’ve tried. It’s not a sticking plaster, it’s a door into a much more balanced and in-control you. It’s a journey, and it’s work, but if I gave anyone a single piece of advice as they wrestle with all that MS affects, it would be to define the prison you feel trapped inside and take the journey to escape.

I believe we all deserve a counsellor, to be able to be as mentally healthy as we can be, to not have to fit into perceived boxes but to live life to our fullest. It’s not a weakness – it’s using the most up-to-date understanding and training to optimise yourself.

Your ability to control your stress and anxieties is one of the most important things you can do to keep your MS in check, to slow down that progression. That’s for another blog post….but in the meantime I’d love to hear how you deal with the to-rest-or-not-to-rest question, whether you’ve started your journey to redefine your life and what you have found helpful.

If you’d like to see if counselling is for you, I’d recommend visiting http://www.itsgoodtotalk.org.uk for a certified list of counsellors in your area and arranging a chat. Choosing a counsellor is very personal so find someone you click with and trust.

As always, if you’d like to be notified when a new blog post becomes available on manylemons.com, pop your email address into the box at the bottom of this page and click ‘Notify Me’.