A Day In The Life...Behind Closed Doors

There has been a lot of discussion on Twitter and in the news recently about the concept of being “fit for work” and managing a job when you have a disability. A few years ago I wrote a “Day in the life” type post about how my typical day went then. I’ve decided to revisit it with a different slant - I’ve decided to talk about what goes on backstage - what people don’t or rarely see - what lengths I’m going to to ensure I am “fit for work” and how I manage my working day. I have Ehlers-Danlos syndrome which means that my collagen is too stretchy and my skin, blood vessels, joints, intestines, heart - everything - is too stretchy and too weak. My joints dislocate frequently, my circulation fails in my hands and feet, my skin looks pale and blotchy and both tears and scars easily, when joints dislocate, they trap nerves which results in neurological pain in all of my limbs and my face, my spine is unstable and the resultant stress on muscles in my back to keep me upright results in myofascial pain syndrome in which tiny muscle spasms persist even when the muscle is otherwise relaxed. That’s my disability put in simple terms - there’s a lot more to it than that but that’ll do for now.

I’ve written here about how people perceive me (kind of in the workplace but in general too) and the things they cannot see. This is really aimed at people who don’t know me - just people who’ve found this post from Twitter etc. Do you work with anyone who is disabled? You might not think that you do, but probably do. Do you think you understand their disability and their abilities? You might even make judgements on them because you don’t understand what they’re going through. The reason I’ve written this is purely to dig a little bit further than the tip of the iceberg that people see day-to-day and to try and explain just how much backstage work is involved in holding it together and working when you have any kind of disability to handle at the same time.

What they see…I arrive at work as normal work a full day, just like everyone else.

What they don’t see - I wake up usually unrested and in pain because I when I move in my sleep, my joints dislocate (fully or partially) and subsequently muscles go into spasm. In order to get out of bed, I first asess which joints are not in place and try to reduce them myself (if I can). To get through this painful process, I take a dose of immediate-release oxycodone syrup. This is a strong opioid painkiller usually used in end-life cancer pain. I then take time to stretch all of my muscles gently using yoga-based exercises that my physiotherapist designed for me. I take oxycodone and pregabalin tablets to moderate my pain through the day. The oxycodone is in a slow-release format so that it lasts about 12h but sometimes I need to top-up the drug with small doses of the immediate-release syrup throughout the working day. I keep it under lock and key as it is a Class A Controlled Drug but I return to my office at intervals to take it when I need it. The amount I take in one day is more than a typical cancer patient would need but it allows me to do my job. When unmedicated, I can’t even stand up as it would be too painful. I am never not in pain - even high doses of oxycodone aren’t able to give me complete pain control but I don’t expect it. I’m happy being about 80% in control 90% of the time. The rest of the time, I get breakthrough pain which I have to deal with using either more drugs or heat or caffeine or physiotherapy or exercise or TENS or jamming needles into muscle spasms - I use a range of methods but none of them erase the pain 100% - I have learnt to live with it and to work with it but it’s not easy. There are days when I just plain can’t do anything and I feel useful and I have still not learnt to handle those really.

What they see…I walk with a stick - must be something wrong with my leg, surely?

What they don’t see - there’s actually nothing wrong with my left leg , per se, but the joints where my pelvis and spine meet are damaged and also too stretchy so every step I take partially dislocates that joint. This sends electric-shock-like neurological pain down my leg (even with pregabalin) and the bones moving about is painful in itself. I use a walking stick to take the weight off of that side a little so that I can reduce the pain somewhat. Since I started using a stick, the stability of my knees and ankles has declined, so the stick now also helps me to stay upright without collapsing to the floor. I variably wear very tight full-length compression underwear or knee/ankle braces to support my joints when I have days that standing up is impossible. I use a folding stool when I give lectures so that I can ensure I don’t collapse to the floor in front of a room full of students.

What they see…I have a fancy chair in my office and for some reason have a blanket too.

What they don’t see - the chair was provided (along with one for working at home) by Access To Work - the government scheme that helps disabled people to stay in work. A workplace assessor has visited me and spent about 4h going through every aspect of my job, my disability and visiting every room in which I work. As I use virtually any lecture room on campus, it’s not possible to visit them all so I had to show her a selection of them. Office chairs were made specifically to fit my deformed spine and to allow me to sit at my PC (which also has modifications) for longer periods than I would be able to otherwise. The chair is also heated in two specific places which match with areas of my spine around which the muscles spasm the most - the heat helps to control the pain. It’s also designed to follow my movements so that I’m supported at all times and less prone to dislocations in my back and shoulders. The blanket? Like I said, my circulation is awful and Ehlers-Danlos patients tend to get very, very cold when we’re sat still or lying down (two duvets all year round!) because our blood doesn’t move as fast or as easily as it should, particularly in our hands and feet - so I use it to keep warm when sat at my desk. I also use it when lying on the floor doing my yoga-based exercise routine which I do three times a day to try and keep the muscles around my joints strong as they’re my only means of support.

What they see…other than the stick, I look all right most of the time - it’s only a bit of pain, after all - it can’t interfere with my life that much really.

What they don’t see - “a bit of pain” - when the drugs used for cancer pain still aren’t strong enough, it’s not “a bit of pain” and it’s unrelenting - yes, I do have good days when I’m just a bit sore here and there but I also have awful ones where I can hardly move. I’ve ended up in A&E with a dislocated jaw that wouldn’t reduce. I’ve had to crawl to the bathroom in the night dozens of times when my knees have subluxed and won’t go back into place. I’ve recently fallen to the floor in my living room and ended up with a nasty cut on my arm - what caused it? Nothing. Knees and ankles just gave way and down I went. What petrifies me is that if I was in the lab carrying a bottle of something nasty, I could’ve ended up seriously injured or injuring or even killing someone else in the process. I’ve had to adjust what I do in the lab and I’m very fortunate that I have wonderful, helpful people around me who will help me move things like bottles of acid that I can no longer take the risk of carrying. This is very difficult for a scientist - to not be able to work independently on my research and I’m still not that happy with it, but I’m having to accept it just as I’ve had to accept all the other changes in my life as the condition is causing me to degenerate. 

I can not guarantee what I will be like from one day to the next but I need to work - I can’t imagine not being able to do my job - that’s what scares me the most. Relatively small changes have been made to my contract - flexible working hours, the allowance to come in a bit late so that I can go to physio appointments on a regular basis. Relatively small changes have been made to how I do my job - equipment to help me do things (trolleys, amazing chairs, folding stool). I have had to adapt myself to the job - I am having to re-learn my limitations on a regular basis as my body is changing. This is a lot of hassle and a lot of work - not just for me but for colleagues who have to pick up the pieces of the work that I cannot do and who have to help me with things that I can’t physically do. Is it all worth it? To me, yes it is. It allows me to do the job I love. But I do often wonder what the others involved think deep down - and I wonder how much of it they understand.