My experience with returning to work after diagnosis & 2 years off

After diagnosis I was told (by a doctor with a terrible bedside manner) to forget about my career in fashion.

He said that I should go back to working in administration after asking me why I even work in fashion to begin with. Yip - he kicked me while I was down and out.

This was about 8 weeks into my hospital stay and during my last phase of rehabilitation and about 2 weeks after my diagnosis. I sat there with a walk belt strapped around my waist and a handful of disability at 31 years old wondering how the hell I got into this crazy situation. I had never experienced anything so surreal. Only weeks prior I was hanging with friends at a music festival and now i'm learning to walk and talk again. All I could see was my old life slip away as a new life of discrimination and disability took over. I was absolutely devastated.

My family and I knew nothing about MS at that point and we had no idea what kind of recovery I was going to make. It was also hard getting concrete answers from doctors. They seemed to be quite baffled by my situation aswell.

I just kept thinking about all the years of hard work getting my degree (over 4 yrs), the unpaid internships I did (several) the stress I went through, money invested and late nights. All the sacrifice i'd made to my health, time away from Ben, my friends and family to get the skills and knowledge I needed to get a good job in the fashion industry. I had learnt so much and had so much to share. It felt like such a waste.

Initially it was really hard for me to process. I felt cheated and it felt incredibly unfair. For months I had so many new questions going through my mind - what career path was I going to do now? what if it's too stressful? will people understand about my illness? what if I hate it and it doesn't make me happy? how am I going to pay my student loan back?

After a lot of tears, counselling from Ben and long walks thinking about my new future. I realised that all of the experience i'd gained, all of the knowledge, all of the people i'd met through all my work experiences and study. They had not only helped me with my chosen career path but they had helped to shape me as a person. I wouldn't be the person I am right now without all of that experience which has enriched so much of me and my personality. Slowly I began to see the positives regardless of what job I did and it didn't seem that bad.

During that time a friend asked me if I'd look after her little boy 1 day a week which was an easy commitment to make. I knew I could manage at least 1 day. It was great as it gave me some confidence, some income and time doing something completely new and different without a boss or deadlines hanging over me. 

As time went on and more of my ability returned I began feeling ready to apply for work. An ad came up at an activewear company locally that I thought I could manage, it was also close-by. So I applied and I got an interview.

I've now been working for about 8 weeks and i'm loving it. But there is definitely a knack to managing work and MS. The first 2 weeks I worked I was overwhelmed with fatigue. Days off were spent feeling completely exhausted and flat, with bed rest being my only option. That initial deep fatigue "adjustment phase" was pretty overwhelming but now 8 weeks in i'm doing much better. I'm able to function on my days off and do the things I love. It's still a balancing act for sure. Some days are definitely better than others. But I decided that i'd do what I could to help my body with this process. 

This is how I've navigated my return to work with MS so far including disclosing my illness, what I feel is helping with the process and some of the benefits I've noticed.


THINK ABOUT WHAT YOU WANT  

Initially when I started looking for work I kept getting drawn back into full-time fashion roles on the other side of Sydney because they were familar to me, that was all I knew. But it wasn't ideal. I had to get really clear with myself. What was the use in going back to a management position with relentless work hours and stress given my health situation. And did I really want that for myself anyway? - maybe the money would be better but what price was I going to pay. I realised that it didn't align with my long term health goals so I let it go.

I decided that about 3 days per week was doable at a reduced capacity like an assistant role with scope to increase gradually. I also decided that money is great but health is better. I wanted days for rest, time to work on personal projects and continue to heal. I knew I didn't want to commute huge hours to and from the city each day. But being able to financially provide for myself is also important. And I'm so glad I pulled back and got realistic, because I wouldn't have lasted 2 weeks in a full-time full-on role right now.  

Once I actually started working I realised that it required so much energy, concentration and focus so I definitely need my rest days.

disclosing my diagnosis

The first question that came up was should I tell them about my diagnosis or shouldn't I? I felt that I wanted to share but I was scared. I didn't want to be discriminated against if I did. Yet on the other hand I didn't want to feel unsupported at work if I didn't. I decided to ring the MS society and see if anyone could help and they were fantastic. They said that some people do and some people don't, and that ultimately it was my choice and I should do what feels right for me.

So given my history I decided that transparency was my way forward. I knew I needed support in the work place and the type of relationship with my employers that was supportive and understanding. And that decision for me has really paid off. They've been great and I feel really lucky. 

What helped with this discussion was my commitment to the OMS program. I told them about all of the elements of the program and that I take it really seriously and I'm achieving a slow remission. They were great about it, genuinely interested and asked me questions about what I do to stay well. It showed them that I'm serious about getting better and motivated to work again. It turns out that my new boss is a certified yoga instructor with a background in buying in the U.K., so we have great chats about health and wellness and share similar views on healing.

communicating what will work for you

Because I told them about my diagnosis and the fact I wanted something part-time to begin with, they were able to understand my situation and offer me the right role for my needs. They also liked to employ people and let them grow with the business, working with their strengths which I really value. I'm also encouraged to be open about how i'm feeling so we can adjust days.

ease into it - rest & work

I initially did a few days per week on staggered hours, then gradually increased my hours. I also took a step back from my blog so that I could focus on looking after myself on my days off. I'm currently doing about 3-4 full days per week. The role is flexible and varies week to week which gives me much valued rest days. 

get Good sleep

Sleep is everything for me. A bad nights sleep for me worsens my nystagmus, balance, mood and energy which can make work days harder than they need to be. I now prioritise my sleep to be able to function well the next day. I try and limit screen time in the evenings by not looking at my phone or the computer after about 6-7pm. I don't drink alcohol on work nights either so I can get proper deep sleep. Sometimes I'll take a magnesium supplement if I really feel that I need a good nights sleep. I light my oil burner with lavender oil and do all the things in My 16 ways to encourage CALM part 1 and 2.

learning to switch-off in my time & BEING "ON" IN WORK TIME

Currently a work in progress. But worrying solves nothing, it doesn't change the next work day unless it's productive thinking and quite often things can completely change the next day anyway. I remind myself to trust in the flow of life and live in the moment. This has gotten easier as i've settled more. 

Also when I'm working for someone else I feel they're paying me to be the best version of myself within their company and to perform. But when I'm at home I'm on my time. I like to think of it as me paying myself to be well in my time. So I remind myself that when I'm there it's work, and once I leave it's leisure time.

maintaining meditation

Meditation is an easy one to let slip. I find myself all fired up after a work day and it's hard to then lay down and literally switch off. Knowing I need to cook dinner plays on my mind to. So instead of meditating at around 4-5pm like I use to. I've been doing it just before sleep, which then takes me off into a calm, relaxed nights sleep. That way I don't miss out on time with Ben or worry about making dinner too late.

mindfulness

Always a work in progress at work and at home. I'm always bringing myself back to the present moment, enjoying it and not getting too far ahead of myself.

eat right - beginning with breakfast

Good healthy food always gives me energy. If I'm hungry I get completely flat, tired, loose concentrate and I sometimes get nauseous. So to avoid this at work I have a go-to breakfast for work days that includes a quick healthy smoothie (recipe below) that I take with me to work and sip throughout the morning and vegan nutella & flaxseed oil on sourdough toast - yip i'm still addicted to it!.

I find by getting in all the right foods that help with blood flow and concentration like cacao and acai and some greens, it's been fantastic at keeping me going all day. I can then have a light lunch that doesn't slow me down.


Pre-work smoothie in my take-away glass smoothie cup.

Pre-work smoothie in my take-away glass smoothie cup.

MY WORK SMOOTHIE

Even though it may not look appetising it still tastes great, and more importantly it does it's job. One day I didn't have a smoothie and I was starving and unable to focus by mid morning. I've included greens and raw almonds for calcium, iron and protein, kefir for probiotics, chia for fibre, blueberries for antioxidants, acai to help with memory and concentration, coconut water for hydration and flaxseed oil for good fats.

  • 1/2 Banana frozen or unfrozen
  • 1 cup frozen blueberries
  • 1 cup kale leaves, stems removed
  • 1 tablespoon organic acai powder
  • 1/2 frozen acai pack (optional)
  • 1 teaspoon organic maca powder
  • A handful of raw almonds - about 20
  • 1.5 cups coconut water - more if you want it thinner
  • 1 scoop marine collagen powder (optional)
  • 1 tablespoon chia seeds
  • 1 tablespoon of coconut water kefir
  • 1 tablespoon of organic cold flaxseed oil

Put all the ingredients in a blender and blend till really smooth. Pour into a takeaway cup with a lid and a re-usable straw to sip on at work. I got this glass smoothie jar from target for $1 - so handy! I love it. Especially when your smoothie is too cold to hold : )


hydration

Quite often we wake dehydrated and don't even know it. Then we guzzle caffeine which is a diuretic draining more water from the body. When what we really need is WATER. I decided that every morning first thing before work I would drink a couple of big glasses of filtered water to rehydrate. A habit formed from infusion day prep that is actually a great hack, I highly recommend everyone do this everyday. Staying hydrated gives me more energy, clarity and relief from symptoms. It's also great to flush out the kidneys and bladder from hours of sleep. 

Be weary of heaters in winter as well, i've found if the heatings on all day at work its super drying, by the end of the day I feel flushed and can't focus. 

listen to your body

I've had one day during the first few weeks when I woke up, and had just hit the wall, so I had to take a rest day. Other days i'm tired but once I get up and have breakfast and water I'm good to go. My boss will usually flag up when she knows it'll be a quiet week or a busy week so I can then plan rest days. It's a fine balance and only you will know your body. Usually if I've pushed it in the week I make priority for flat-out rest in the weekend, and not feeling guilty about it. I feel like i'm constantly adjusting to a new normal at the moment as my body adjusts and I get better.

DONT COMPARE YOURSELF TO YOUR COLLEAGUES

I fell into this straight away. Trying to keep up with them, watching them work huge hours and still function. Feeling guilty about leaving early or because your not feeling great. Its a weird thing taking a step back in the work force. It's definitely gotten easier over the weeks and being open with my colleagues helps them understand what I'm going through. I had to remind myself that I don't have the same body or immune system as them and mine needs a little more tlc.

Benefits

There are so many benefits in getting back into work again. The best is now I get paid! which is a great feeling. Secondly i've overcome another challenge which was a goal I set for myself for this year - so that feels great. 

I'm also really enjoying working again and i'm learning new things everyday. My new bosses have been so supportive and understanding as have my colleagues. I've talked openly about MS with some of them and they are so helpful and understanding. And the reduced level of responsibility and flexible work hours have been fantastic.

Another is that my nystagmus has improved again. I'm forced to look down a lot at work whereas I could quite easily avoid it at home. I remember my eye specialist saying that eyes can get lazy so forcing them to work together even when it's uncomfortable is really important.

My fatigue has also improved again. I very rarely have those days of literally struggling to get out of bed (unless i've completely overdone it). My body is finally getting use to waking early and jumping up for a work day.


All in all it's been a really positive, enjoyable experience and I feel very grateful and lucky. If someone had said to me while I was at my worst in hospital that i'd be fine, my disability would disappear and i'd work in fashion again I would have cried, possibly for days with happiness. 

I think that balance is always key, if you know you've been over doing it then allowing time to rest and be on your own. Talking and social interaction although fun and healthy can be incredibly draining so I always find alone time where I don't have to talk, the best remedy. The balance is real!

I would love to hear how other people are managing MS at work or how you've managed your return to work as well. Do you have any things you do to help you with symptoms? are they similar to mine? i'd love to know!

Have a lovely weekend!

Much love!!

Simonne x