I was first diagnosed with Gastroparesis in 2005 – 8 years after I was married and about 12 months after the birth of my second daughter. It took the doctors about a year to work out what was wrong and my world was turned upside down BUT I was so grateful to finally have a diagnosis.
Since then, my life has been severely impacted as has that of my husband and two daughters. I am not the same person he asked to marry and my two girls were babies/toddlers when their mum was diagnosed and so their whole life “mum” has not been able to do what other mums had done. I missed attending sports events, school events, dance events, parties and general outings. I was actually in hospital when my husband had to take my eldest daughter to get fitted for her prep school uniform. That really hurt. I even spent one of her birthdays in hospital and cried my eyes out with the nurses while my hubby still held the party for her at home with our family and friends trying to keep her life as normal as possible. At times I was basically unable to function as a normal mother and wife and I slipped into severe depression and anxiety.
I was stared at, talked about behind my back and “pushed to eat” by some family/friends who just couldn’t understand what could be so hard about eating some veggies or a salad if nothing else. I lost 14kgs in a short period of time and that led to me being severely underweight. People admired my body being thin but if only they knew how my life was affected and what my body looks like under my clothing with tubes, scars, pacemaker etc. I would give anything to have more weight on my body and feel confident wearing any item of clothing I wanted and being able to eat and drink and enjoy all aspects of my life.
There were times that I just wanted to curl up into a ball and give up thinking that my husband and daughters might be better off and be able to live a more normal life without me ruining things, asking them to keep the noise down due to exhaustion and migraines, and not wanting people and friends over at our place. It was all just too hard and I really felt that I was holding them back.
Gastroparesis wasn’t the only problem, as it led to further medical conditions. I developed severe Migraines that were relentless, Malnutrition, Depression, Anxiety, Scleroderma, Raynauds, Peripheral Neuropathy, Osteopenia/Osteoporosis, Intestinal Pseudo Obstruction….. the list went on.
I felt like a prisoner in my own body and leaving the house brought on so much discomfort and anxiety.
It took many years of counselling and other therapies to realise that I needed to fight this thing if I wanted to survive and be there for my hubby and daughters. I decided the last thing I wanted was for my girls to grow up without their mum and for my husband to become a widow. It certainly wasn’t easy but I am proud of my strength and resilience and how far I have come since those dark days. I realised who my true friends and family were and just focused on them. I continued running my accounting practice as it gave me a sense of worth and working from my home office made this easier. I also think that getting a puppy 5.5yrs ago has been super helpful as he is home with me when I am home alone which is quite a bit of the time. Focusing on him helps keep me calm and he has certainly helped my depression but I do need to constantly work on my mental health.
I think one of the hardest things is “not looking sick” and people not understanding how this condition works. Not every day is the same and it is not always the same symptoms. People think that just because you dress nice or put some make up on that that means you must be feeling fabulous and are “better” but they don’t understand there is no “cure” – it is just VARYING DEGREES of being unwell. I am lucky that I have a wonderful team of health practitioners however lately I have been concentrating on raising awareness and funds for Gastroparesis research in the hope that one day we won’t have to explain our condition to medical practitioners, hospital workers and members of the general public.
I feel like I miss out on so much socially and when I push myself to attend functions or hold a party/Christmas Day at my place I end up suffering for days afterwards as it has taken such a toll on my body. I often feel guilty because I am not the woman my husband asked to marry. I lost the old me – the one who loved to eat, drink, dance, sing and be at social functions. I developed this illness when I was 32 years old -a time when I should have been loving life and experiencing all the new things marriage and motherhood bring. Unfortunately the phrase “IN SICKNESS and in health” really became tested but I was so lucky that he meant those words forever.
I have had pretty much every intervention available. From Nasojejeunal tubes, Botox, permanent G/J tube, Gastric Pacemaker, osephegus dilations, surgical Pej, and all the possible medications and whilst I am mainly stable this is only because I know now what and how much I can tolerate orally. I can no longer tolerate tube feeds and haven’t been able to for many years because my intestinal motility is now also affected. Funnily enough, to some people they thought this was an improvement that I was no longer tube fed as they don’t understand that it’s because I can’t not because I don’t need to be. I don’t know if I will ever be CURED and to be honest I would prefer not to hope for something that may never happen. All I can hope is that I can manage this illness with the least amount of complications moving forward and minimal hospital trips, that it becomes more well known and understood and that I continue catching up with family and friends who understand my limitations and are happy to work within those limits to make things easier for me. I am so grateful for a loving husband and two beautiful adult daughters who are always there to support me and I know that they are proud to have a strong wife and mum who refuses to give up.