Working whilst living with Chronic Illnesses

For this weeks blog I have decided to talk about what it’s like working whilst living with longterm conditions for me and in my line of work.

I am diagnosed with Ehlers Danlos Syndrome, Bile Acid Malabsorption, chronic migraines, very early stages of arthritis in my feet, Autism and ADHD. Sometimes that list feels never ending!!

What it means for me is that I have varying levels of pain in all of my joints, sometimes just a niggle but sometimes a lot more severe, I can have flares that last months or I can have some days that I feel almost no pain. My heart rate likes to sky rocket which can cause me to feel nauseous, faint and sometimes causes me to vomit. This usually happens if I’m being ‘too active’ or it’s very warm outside.

My body struggles to absorb nutrients and vitamins so I usually feel somewhat rundown, with some days being worse than others. For example, at this current moment my mouth has constantly got ulcers popping up, I feel sick, headachey, extremely fatigued etc but hopefully a blood test will help reveal what I need to be doing to help with this.

I have usually got an underlying headache going on but that can develop into some nasty migraines usually triggered by light. I particularly struggle when it’s cloudy (lucky I live in Scotland!), fortunately at the moment I’m more headachey than migrainey which is a big win.

My autism and ADHD can leave me “burnt out” after a day at work and extremely tired, it is one of the big reasons that I aim to work 4 days a week rather than 5.

I have been extremely fortunate to be able to create a role for myself that allows me to take charge of my working schedule which massively helps when living with longterm conditions.

Before I was quite so busy, I used to start my working day at around midday which would allow me to sleep in the mornings to hopefully help with the fatigue that most of my conditions can cause. If you’ve seen my day in the life then you’ll know that this is no longer possible for me!

Something I currently have in place is 3 days off in a row. I have set up my days so that I do not work a Monday allowing me to recover. This doesn’t always happen, I have about 1 Sunday a month that I do work which takes away from that recovery time.

Unfortunately there are times when I do have to cancel sessions due to my conditions and this is something that I continue to struggle with. It’s hard to know when you should push through it and when it’s going to do you more harm than good. There’s also the most obvious thing of if I don’t work then I don’t get paid.

Although it’s hard and I don’t always get it right I absolutely love my job and I will continue to jump the hurdles that make it harder for me to continue. When I have days that I wake up not feeling great and want to just stay in bed I think of the clients I’m going to see that day and all of the cool things we will be able to do.