Chronic Pain, Disability, Disability Awareness, Ehlers-Danlos Syndrome, Lifestyle

Putting the Able in Disabled

It’s 6am and my alarm clock goes off, I open my eyes and feel the pain flood my body. I lift my head off my pillow and feel my heart rate start to climb rapidly. I give up, hit snooze and put my head back on my pillow for 10 minutes. My alarm goes off again and this time I have no choice but to get up. I sit up in bed and begin my morning routine, starting off the day with my morning cocktail of medication, before I do my morning mindfulness exercise to try and reduce my body’s adrenaline levels (my ANS doesn’t work, which makes my adrenaline levels go through the roof every time I move, so I have specific exercises given to me by my Specialist to try and cope with it).

By 7am my morning routine is complete, I grab my car keys and head out the door to work.

By looking at me, you would never know that I am fighting against my body with every second that passes. You see, whilst I work full time, I am also legally registered as disabled.

So, why do I continue to work when it’s a struggle for me to just get out of bed?

The answer is simple; work is my escape from reality, it’s the place where I get to be as normal as I will ever be, where I get to make a difference. I know that one day my health is likely to get to the point where I have to stop working, so whilst I am able to make adaptations and push myself to work, I feel like I owe myself to do it.

I am not going to sit here and pretend that it is easy to work whilst being chronically ill, because it is quite honestly the hardest thing I have ever done. As I write this, I am in the very fortunate position of having the most incredibly supportive team at work who understand my conditions as best they can, but it hasn’t always been that way. For me, the key to balancing work with being chronically ill is honesty. Not just being honest with your employer and colleagues, but being honest with yourself about how you are feeling. It has taken me a very long time to get to the point where I can say that I am now completely honest with myself and others about how my conditions affect me (7 years to be exact), but I am so glad I have finally got here.

Last July an opportunity for an interim promotion came up, and a few days later I received a call to say that I was going to have major knee surgery in September. I knew that I would need a long-time off work due to all of my other conditions affecting my rate of recovery, and as much as it broke my heart, I knew that I wouldn’t be able to have surgery and rush back to start a new job. So, I sat down with my manager and explained my fears and why I didn’t want to apply at that time, and we both agreed that it was better for me to take a longer time off work and put myself and my health first for once. When my colleagues were interviewing for the position, I was preparing for surgery, arranging numerous medical appointments for my conditions and being started on yet more medication. I can honestly say it was one of the most heart-breaking times I’ve experienced over the last few years.

However, as awful as it was at the time, forgoing the chance of promotion and putting myself first meant that I was able to take 4 months off work, completely guilt free. I had the time to not only recover from surgery, but to really focus on my health and figure things out that I hadn’t had time to even think about before. For the first time in years, I really felt like I was beginning to know myself. By the time I returned to work in January, I knew myself and my body so well that I was able to be completely honest with work about what I needed in order to be able to do my job well.

Since January, I have been working from home full time due to the fact that I am on so much medication that is constantly being adjusted, I don’t feel ready to return to driving a 2-hour round trip to and from work. Thankfully, because I have always been so open and honest with my managers, this hasn’t been a problem and I haven’t been treated any differently. In fact, the chance for the interim promotion came up again, and after speaking to my manager I decided to apply for it this time, and despite the fact I haven’t been in the office since September, and I constantly have to take time off for medical appointments, I got the job.

So, how do I balance working full time with being chronically ill?

First of all, I need to state that I have made a conscious choice to work full time at the expense of a lot of other things, and by no means should you ever feel obligated to work if you cannot do it. You know your body better than anyone, and only you know if you are able to cope. Right, now we’ve got the disclaimer out of the way, let’s get into it…

  1. Working from home

As I mentioned earlier, I am currently working from home full-time. However, I will be returning to the office in the next couple of months (thank god, because I cannot even tell you how much I miss human interaction). When I go back, I will be working from home a couple of days a week, which will enable me to continue taking care of my health and giving my body time to rest when needed.

  • Having a job that I love

I can honestly say that I love my job, and that definitely helps me get through the really hard days. I have been in job I hated before, and it made balancing work and my health extremely difficult as the stress of the job exacerbated my health and vice versa. If you can find a job that you genuinely enjoy, it will make working whilst unwell a lot easier to cope with.

  • Honesty

I have always been up front and honest with my team about my health and how it affects me. My managers know that I have constant medical appointments and because of that, it has never been an issue. If I have an appointment far away, such as London then I usually take the day off as annual leave, however if it is a local appointment, I am able to just work around it, in whichever way is best for me.

  • Planning my daily routine carefully

As with anything, planning is key when it comes to working with a chronic illness.

Personally, showers and baths make me so unwell that I have to rest for at least an hour afterwards. For this reason, I have had to adapt my daily routine to include showering and washing my hair before I go to bed rather than first thing in the morning, as otherwise I wouldn’t be able to get to work until the afternoon.

  • Keeping medical supplies at work

It is not uncommon for me to walk around work with multiple TENS machines all over my body to help me relieve pain. I always have a plethora of medical supplies with me at work, which means that I can usually get through a full day no matter what happens. My colleagues joke that I have my own pharmacy as my drawers are filled with my daily medication, extra pain medication, physio tape, Biofreeze, Tiger Balm, heat pads, a hot water bottle, wireless TENS machines and CBD oil.

I am honestly so grateful that I am still able to cope with working full time, and that with the support of my team, I am able to continue giving my all to a job that I absolutely love.

I hope that with everything I have implemented, I will be able to continue working for a long time to come, but I’ll take it one day at a time for now.