Managing Work While Healing, Functioning Exhaustion & Doing What you Love

Me on Boomerang Beach, NSW

Me on Boomerang Beach, NSW

It's been a little over 18 months back in the work force for me now and it's definitely been an interesting, challenging and exciting experience all wrapped into one. On those days of pure exhaustion I have wondered if it was all worth it and what kind of effect is it really having my healing. But at the same times it’s also been a lot of fun and really rewarding. So I thought I’d give you guys an update and let you know how it’s all been going for me and how I manage my work/life/healing MS balance plus how I’m feeling health wise. I love to hear how others manage this so I thought it may be helpful to share my experience.

Shortly after I started my job I wrote this post My experience with returning to work after diagnosis & 2 years off. In that post I talk about the initial emotions I went through in returning to work after my diagnosis, disclosing my illness, what I was finding helpful to work better and the benefits I noticed back then.

work & healing - how it’s going

When I first started my job I felt really energised and excited to get back into work. I’d spent months prior to starting this job coming to terms with the fact I may have to kiss my career goodbye for good and not knowing what on earth I was going to do with my life. So it felt amazing to be back in a familiar space after everything I’d been through with my diagnosis.

But because I felt so good and thought it would sustain me I committed to more and more shifts and after 6 months I was naturally, exhausted. Do not do this by the way, pace yourselves!. I soon learnt the true nature of eb and flow on ones healing journey. I felt like I’d chipped away at all the vitality I’d built up in my body over those 2 years I’d had off and my days off were spent doing nothing more than laying on the couch staring out the window with the deepest fatigue. I then went through a spell of low Iron and B vitamins at the beginning of this year which really scared me and it took a good 6-8 months to get myself back on track from that. I take my supplementation really seriously now. My Dr recently gave me a script for Iron tablets as opposed to the Floradix I was taking, she said taking one every 2nd day would get my levels up much quicker and prescription Iron is also much cheaper.

I was also promoted this year which was a big change as my initial role was low stress. My new role had me multi tasking again and sprung into high pressure situations and my poor little healing body didn't know what hit it. During that time I started taking adaptogenic herbs to help my body adjust and they have been a massive help. I spoke with a naturopath and she gave me a great Rhodiola supplement. I also started taking medicinal mushroom powders which I love. Reishi in the evening in a warm drink which is great for stress relief and relaxation. Lions Maine in the morning boosts the mood and helps to repair neurons, and Chaga which is energising - you can throw all of these in a smoothie or a warm drink. Also Celery Juice, it has a calming effect on the nerves so I always do a large pure organic celery juice first thing in the morning on the days I work to help me get through the day. I find it energising and clarifying as well.

Then in terms of recharging my first day off after 3 full days at work is always the toughest and I really just listen to my body and get as much rest as possible. Sometimes I find a gentle walk really helpful as it gets me out of the house and makes me feel like I’ve accomplished something. As the days progress and my battery recharges I’m naturally able to accomplish more.

am i still healing?

After spending months wondering if working while healing and dealing with MS was all worth it and if I was still healing at all, I’ve realised that yes, I’m definitely still healing albiet a little slower with more management required. My MRI’s and disease activity have all been clear the whole way through which is great.

I think I'm doing really well considering the amount I'm actually achieving these days. Health and vitality wise if I was to compare myself to before I started work, I don’t feel as healthy or vital as back then but that’s understandable given the extra pressure work has placed on my body.

Healing MS naturally ebs and flows anyway and my integration back into work was always going to happen sooner or later and although it affects my health at times, I’ve realised that it hasn’t stopped me from healing altogether, it just calls for more management, honesty and self love. There are also some massive upsides to working while healing and dealing with MS too which I will save for another post. But I think these need attention because working is definitely beneficial as well.

In terms of health improvements over the last 6 months I’ve found I can go longer periods (even days) without resting. This is my new phase of healing I call “functioning exhaustion” (explained below). I’m able to talk, engage and joke with people more which I use to find really fatiguing. My eyes (nystagmus) have also improved along with my ability to handle stress. I havn’t experienced any new symptoms except muscle tension in my neck and the back of my head at times which I use magnesium oil, magnesium supplements, reishi powder and massage to help alleviate.

Update: Yesterday I visited an Osteopath I’d been recommended and she was ah-mazing! She cracked me in all the right places and released pain and tension I had stored between my shoulder blades and the base of my head for months. She also massaged my diaphragm and said it was tight (from shallow chest breathing), then asked me what I did for work and said all my tension was stress related. I walked in feeling anxious and in pain, I walked out feeling pain free, happy and super relaxed. I can’t recommend an Osteopath highly enough, I’m kicking myself I never went sooner!.

functioning exhaustion

What I've noticed about healing this year is you begin to look and function so normally that you almost forget to pull back and put your health first at times. These days the fatigue doesn't stop me in my tracks like it use to so it's a lot easier for me to push my limits. Back when I started work and before then my body would get so exhausted it would demand rest. I would hit the wall with fatigue and there was no pushing through it. I would have to crawl in to bed and sleep it off. This, although frustrating, was almost a blessing because it was visible so people understood it more.

But now, I tend to feel more of a permanent exhaustion yet still functioning and able to push through it type feeling (if that makes sense). This is somewhat frustrating because it tricks me into thinking I can go, go, go and do ALL of the things in one day - work, prepare dinner, clean the house, do 3 loads of washing, write a blog post and simply not rest. This inevitably leads to a more severe case of functioning exhaustion and then I start to do stupid things around the house, make mistakes and get frustrated. For ages I didn't know how to handle this, on one hand I could do all the things which felt amazing and I wanted to do more and more. But, on the other I knew I needed to rest but I wasn't allowing space for it. This, I’m sure is confusing for the people around me thinking I look perfectly fine however on the inside it can be a completely different story.

Approaching things with more slowness, moderation, pace and balance is what I’m reminding myself during this phase and also telling myself to lay down in the afternoons to force myself to do nothing. I’m praying the next phase is functioning without exhaustion!.

Doing what you love & being positive

I’ve also come to the realisation that doing a job you love and working in a happy positive environment as well as remaining grateful and positive yourself is so much more physically energising and healthier for your body and mind than doing something stressful, something you dislike or being negative.

If your not enjoying your work, the people are negative or it’s too high stress then this will have a negative impact on your health and make you feel miserable both at work and on your days off.

I genuinely love working in the fashion industry, I work with great people and we have a lot of laughs. But it has it’s moments and like any job when I’ve felt frustrated or stressed at times this has always lead to deeper fatigue, less vitality and manifested sooner or later in a symptom flare somewhere in my body, which then affects what I can do on my days off. The ripple effect is that my social life may suffer or my exercise routine, creativity, even at times my ability to hold a conversation or make food for myself.  I choose only to work 2-3 days per week absolute max, as it helps me to pull back and get the rest I need to recharge.

what helps me to function better at work & stay employed

Dealing with the up and down nature of healing MS and working can be really challenging at times but when I think hard about what is keeping me in work and helping me work better it’s definitely the following…

  • Having flexibility with the days I work as I’m able to shuffle days if I need to

  • Being adaptable in my role

  • Being open & honest about my diagnosis with my colleagues and bosses

  • Looking at the positives at all times & being grateful

  • Positive, fun & supportive work colleagues & bosses

  • Drinking plenty of water & having lots of healthy food & snacks with me to keep me going

  • Morning pure organic celery juice - about 800mls on an empty stomach

  • Essential oils - peppermint for concentration, frankincense for de-stressing, do terra Ongaurd to fend off office bugs, wild orange & citrus blends for unwinding in the evenings

  • Deep diaphragmatic breathing through the nose regularly throughout the day - at least 6 long deep slow breathes in a row

  • Mindfulness - pulling my mind back into the present moment & enjoying the moment for what it is

  • Maintaining daily meditations

  • Knowing my limits & sticking to my boundaries - no excessive overtime & sticking to 2-3 days max per week

  • Good sleep health & routines, 8-10 hours of restful sleep every night

  • My USB desk fan - such a lifesaver!

  • My Swanwick bluelight blocking glasses to block hormone disrupting blue light

  • Allowing lots of space to rest & recharge on my days off

I feel the key with work and healing MS is finding a happy work/life/healing balance that includes doing something you enjoy with positive supportive people, knowing what your capable of handling in terms of work hours and stress and learning to manage that as best as you can.

It's also so important to respect and listen to your healing body because our bodies work so hard for us all day long. Working requires a lot more energy so you need to take extra special loving care of yourself, get enough sleep, eat lots of healthy nourishing food, meditate and allow space to rest and recharge your depleted battery. It can be challenging at times but don't let that put you off because it can also be so rewarding. I will share the benefits of working while healing in an upcoming post.

Healing MS just forces us to take extra special care of ourselves which is a beautiful thing. I'm sure most people would love something to remind them to pull back and take care of themselves like we do.

If you guys have anything that helps you function better at work - tips, tricks, foods, therapies, I’d love to hear them!

Much love!

Simonne x

6 Benefits to working with MS