Michael's story #thisisme

08/08/2024

Sharing to raise awareness during HAN Week 2024

Hello, my name is Michael, I’m 39 years of age. It’s been somewhat of a journey over the last 20 years and more. My background is in professional cookery; I’ve loved cooking from a young age and the older I became the more I began to see it as a career.

I did an apprenticeship in Professional Cookery, A’la carte and Gourmet, completed my level 2 and 3, and then went on to do confectionary and patisserie. After some time in the industry I decided to go into teaching professional cookery. I became a college lecturer, which I enjoyed very much. I moved to Cornwall in 2012, where I had my own catering business.

When I was 16, I suffered with asthma and hay fever. Out of the blue, when I was 21, I suffered a stroke. It was a complete shock, but thankfully I had youth on my side and I was able to recover. After this happened, I noticed that my eating patterns were unusual. I felt full after eating small meals and I would go a whole day without eating, even after a full day at work. I carried on making excuses for it, but fast forward to 2015 and I was diagnosed with type 2 diabetes. I knew something else wasn’t right though. I had my C-peptide test repeated, which confirmed I was only producing a small amount of insulin. I was then diagnosed with type 1 diabetes. I had multiple daily injections, then used a pump, and to cap it all off I was told I had adrenal insufficiency. The adrenal glands weren’t producing sufficient hormones, which was both difficult and scary. Any kind of stress or any kind of infection was dangerous, my steroids needed increasing to prevent adrenal crisis. I always carry an emergency kit with me.

A few years later I diagnosed with a movement disorder called dystonia. It’s a nervous system disorder that causes uncontrollable muscle contractions, meaning a person’s muscles tense up without trying to make the muscles do so. I was in a wheelchair to begin with, but since 2017 I’ve been on medication to help with the extreme spasms. At this stage I thought things couldn’t get any worse. As I mentioned, my eating was very haphazard, but it started to affect my diabetes and adrenal insufficiency. For years I’d been vomiting undigested food and had unusual bowel movements. In December 2020 I was admitted into hospital after not being able to keep food and fluids down for 29 days.

I saw my endocrine team and then reviewed by the gastro team. It wasn’t a pleasant experience having an endoscopy, gastric emptying study and a barium meal. I was told I had dumping syndrome and severe acid reflux. I was started on naso-gastric feeding, but still vomiting. Six weeks later I was discharged and told there was nothing wrong. I felt deflated and completely lost, but carried on as best I could. I saw the dietitian every three months; she soon realised I had malabsorption issues. I was deficient in a number of things and my unexplained gastro problems grew worse.

Almost four years later, following another barium meal and gastric emptying study, it was confirmed I had delayed gastric emptying. I finally had a diagnosis of gastroparesis secondary to my diabetes. I started on a naso-jejunal (NJ) feeding tube for two months, and now I have a PEGJ feeding tube where I’m fed 24 hours a day. It’s been just over a month with my PEGJ. I’m still sore from the procedure and it’s taking some time to adjust to this new journey. I love swimming and can’t wait to get back to being more active.

I’m very grateful for the endless support and love of my dear wife Jo, who has been there for the past 12 years. She works in pharmacy and her excellent knowledge has been great in fighting my corner for treatments that have saved my life. Over the years I’ve watched my Jo worry and be stressed with my constant hospital admissions and the unpleasant procedures I’ve had, yet she remains so positive and upbeat. I always thank my wife for her support. Sometimes we think about the person who is ill, how they are and how they are feeling etc., but it’s so important to think about our loved ones who care for us. We are on this journey together. While I’m the one who has many co-morbidities, my wife is the one who has to watch me suffer and it’s distressing when you can’t do anything. It can take its toll.

It’s important that she has her own time. She loves her sports, going for runs and playing netball. In May we celebrated our 12th wedding anniversary. We like to travel and have holidays. Although we haven’t been abroad for a long time, we have taken holidays in this country because it’s an easy option for now, as you can pack the car we everything you need. We had a lovely time in Scotland this year, visiting Inveraray, the Isle of Mull and Nairn.

I’m grateful that I’m a positive person and I tend not to think about what I can’t do, but concentrate on what I can do. I try my best to keep as active and mobile as I possibly can. Even with all my health problems there is still so much I can do.