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Daily Life with Gastroparesis

Merel is 20 years old living in the Netherlands. She has hsd, gastroparesis and intestinal dysmotility (among other things) and is completely tube fed. She studies physics at the Open University.

1. What do you do first thing in the morning when you wake?

I am woken up around 8.30am for my morning meds. The first thing I do is put an octreotide injection in my upper legs to get my small intestine moving. Pushing in the medication really stings. To avoid the hypoglycemia that follows 30 minutes after the injection, I flush my feeding tube with two 20ml syringes filled with syrup and flush with water.


2. How do you feel when you first wake up?

Nauseous. Honestly, the nausea is the worst in the morning when my meds have worked off. This does get better half an hour after taking the injection. I also never feel refreshed and if I could I would go straight back to sleep, some days I do. Finally there’s the pain, every morning my joints feel sore and my legs feel heavy. I’ve gotten used to it somewhat, but I don’t think you ever really get used to being in pain all the time. It’s there from the moment I wake up to the moment I fall asleep, every minute of every day.


3. How are your days structured?

They’re not. Not really anyway. I wake up, take my meds, flush my feeding tube and get downstairs. I stay downstairs for the rest of the day because lately the stairs have been very challenging and I need help to get up and down them.


Anyway, there’s no structure whatsoever. My days are unpredictable due to the unpredictability of my symptoms. The only things I never miss are my meds and  feeding tube care. Other than that, it depends on the day. Most days I take a nap around midday, but it often gets skipped when I’m out meaning I’ll have to go to bed earlier at night.


Some of my days are filled with hospital appointments, or physical therapy where I go twice a week, others are spend with friends and family, working for PINK! (political youth organization for the Party for the Animals in the Netherlands), and others again are spend on the couch. I once said I liked my days to be unpredictable, I don’t think younger me meant like this.


4. How does feeling poorly get in the way of your day?

It affects every part of my life. I never actually feel well. The amount it affects me depends on the day, some days I can shut it out others I cannot. I can feel sort of fine in the morning but have my symptoms flare up in the afternoon. The fatigue is the worst for my day to day life though, I spend a lot of time, probably most of my time, on the couch or in bed.


5. Is there anyone in your life who supports you on a daily basis?

Without a doubt my parents and my sister. I’m super lucky and grateful to have them around me. I simply could not live without them. I couldn’t tell you all they do for me, it is so much and I could not be more grateful.


6. If you could change one thing about your daily life what would it be? 

To have more energy and just be able to live my life


7. Share a top tip for our readers on getting though through day

Try and live for the little things. That cup of coffee in the morning, spending time with your friends, or whatever makes you happy!



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