Working With Gastroparesis
I'm sitting at my desk staring at the long list of orders on the screen. The diary next to me is filling up with meetings, deadlines, and doodles of new design ideas, and a pile of parcels wrapped inbrown paper is awaiting this week's trip to the post office.
Two years ago I was bedridden, exhausted from malnutrition and struggling to even keep water down.
I now work full time as a freelance artist and run my own business “Art of a Thousand Words” making and selling word-art, digital art and paper-crafts. As I now sit at my work desk looking at my business page on FacebookI wonder how on earth I did it. How did I become able to live my dream? As I start replying to today's many emails my feeding pump starts beeping and the reality sets in.
I have Gastroparesis with panenteric dysmotility. In basic terms, it means none of my digestive system works properly. I have problems with swallowing, my stomach doesn't empty, my small intestine is unable to breakdown and absorbs many foods and my large bowel barely functions. I am fed into my small intestine via a feeding tube 24 hours a day. I also have Ehlers-Danlos Syndrome and POTS.
My carer has just left, having got me showered and dressed, while my partner carefully works out which of the dozens of medications I need that day.
After an hour or so of relying on other people to get me out of bed and meeting my basic needs, I am ready to work. As I get started today I know it's going to be a tough day and I have all my fingers and toes crossed that I will get everything done on my 'to do' list.
It hasn't been an easy journey. It's actually been one of the hardest things I've done and some days I think I can't possibly carry on. This is my second attempt at working since my Gastroparesis diagnosis. I tried three years ago to set up as an artist but had to give it up after six months due to the workload making me extremely ill.
In December 2013 I was told I needed a feeding tube as I was losing too much weight and became very ill. I had barely enough energy to sit up and was vomiting many times a day. My stomach could not cope with food. Anything I ate just sat in my stomach for hours and the pain was unbearable. I barely felt hungry at all and rarely felt the need to eat. I started with a Naso-Jejunal (NJ) tube which I had for 10 months. I then had surgery to place a PEG to form a tract in my stomach so a long tube could be fed through my stomach into my small intestine as a long-term treatment. I am connected to my feeding pump 24 hours a day - yes it is heavy, yes it gets annoying, yes I have found some very nice handbags that my pump fits into.
Feeding this way means I now get the calories I need. I am getting the nutrients my body needs and I have put on weight. I no longer look so ill and I have enough energy to function...most days. My formula is semi-elemental meaning it is partially digested so my small intestine can absorb it. I also run bags of fluid through my tube to manage my POTS and keep myself hydrated.
I haven't been 'fixed' or cured. I am managing. Day-to-day life is very hard and there are many days each month where I cannot get out of bed. I spend a lot of time at the hospital and attending my local hospice for support. There are days where I cannot manage to feed through my tube due to pain and severe nausea. During these flare-ups, I cannot work and I have to focus my limited energy on resting and waiting for my body to recover. There is no predictability with my condition. I don't get a memo or a diary reminder that I need to book a week off work as my stomach is about to have a huge hissy fit, or my tube is going to clog leaving me in the hospital for a week. Instead, I have to make the most of the good days and try my best to keep caught up with my work.
There are times when I have to contact customers and apologise as I have not been able to work on their order. I am very lucky as my customers are very understanding. I have only had a couple who have gotten cross with me and cancelled their order.
I have learnt many things over the past year that have now become part of my working life:
- I cannot work if I do not look after myself. I MUST pace/stick to my feed regime/avoid stress/accept help from other people.
- I must stay organised and not procrastinate. I cannot afford the luxury of putting off something until next week if I am well enough to do it today.
- I must listen to my body. It knows me better than I do and there is no point fighting it. If I need a week resting in bed then my work must wait. I cannot work if I am in the hospital for a month because I have pushed myself too far.
- Technology is my best friend. I now create all my work on iPad and computer. I rarely draw by hand now as it is too painful and time-consuming. I can draw and paint on my iPad while laying in bed without needing extra energy to clean up a dozen paint pots and brushes at the end.
- Honesty is the best policy. People are much more understanding than we think. I have had to cancel work meetings a number of times with the same business/client due to my health but they are usually accommodating if I am fully honest with them about the severity of my health. It is nothing to be ashamed of.
- I must build good relationships with my doctors, nurses and carers. I need them in order to be well enough to work. It has taken years of fighting to find a team who can support me and who I can work with. We both need honesty, transparency and trust.
- I have to be open with my doctors about my workload and work style. If they tell me I shouldn't work for 3 weeks while recovering from surgery and I tell them I am probably going to be back at my desk within a fortnight, we can come to a compromise. I can work from my bed or start back 2 days a week for the first month, as long as I stop and get in touch with them as soon as I have any issues.
- I must allow myself to fail. This is this hardest for me but has helped me the most. It is OK when I don't complete an order. It is OK if I have to say no to a client. It is OK if I have to admit that a project is too hard and I cannot do it. The fact I am simply working is the success.
I love my job. I know I am incredibly lucky and blessed to have a talent that I can earn an income from and a partner who supports me. The majority of people with Gastroparesis who are at the severity level I am at cannot work. I count my blessings every time I sit down at my desk. Working from home means I can work around my condition. I can rest on a bad day and catch up at 3am when pain is keeping me awake.
I know there may come a day where my condition deteriorates too much for me to work so I make every moment count and make sure I do one thing I am proud of each working day. The variety of my job keeps it exciting and encourages me during the tough weeks - today I am finishing book illustrations for Diverse Church and then having a meeting with a local tea room owner who would like some of my art work for her business.
Most importantly, I am grateful everyday for my medical team, my doctors and the medical breakthroughs that have led to tube-feeding. It is because of that, and my stubbornness, that I am alive and at my desk today.