My spoonie story — From the start
Spoonie life, from the start
How my spoonie life started.
I think my spoonie life first started when I was actually around 2 years old.
This is my Spoonie story from the beginning.
Even when I was a toddler, I was under a paediatrician consultant for suspected precocious puberty. I had to have MRI scans and tests as I was developing breast buds at an early age. Fortunately, for me, this turned out not to be an issue. However, looking back I think this is where my issues started.
At around 15 yrs old I started getting terrible pains in my tummy. This would mean I would miss going out with my friends and eventually I lost touch with most of them (See my other post).
I could spend ages on the toilet, or would need to be around a toilet. Long journeys would frighten me and my anxiety would set in. I would always be nervous in case I was away from a toilet for too long. The Doctors diagnosed me with IBS (The go-to diagnosis when they don’t really know what is wrong!).
When I was 17 years old, the doctors discovered I had a virus in my blood, and said it was similar to M.E. I was not given any other information, and told I would have to learn to live with it!
Knowing what I know now, this virus might possibly have been the Graves disease. My thyroid levels were still presenting as borderline, however, so it may not have shown clearly.
My hyperthyroidism was diagnosed completely by accident, despite it never being picked up at any of my previous hospital visits. I decided to make an appointment to move Doctors, due to be being completely disheartened by my current GP surgery. On my first appointment, I had to take a urine sample and have my blood pressure and pulse checked.
When the nurse checked my pulse, she turned and looked at me, and asked ‘had I ran to the surgery?’. I laughed and looked confused. ‘No’ I replied. She decided to let my pulse return to a resting rate and tried again, but my pulse had accelerated. It was due to this that she told me I needed to have my thyroid tested urgently because my pulse was irregular and too fast. I had the test done the following day in the morning.
Later that same day, I received a call from my doctor telling me I needed to attend urgently as there was something wrong with my blood. I immediately started to panic. It was then that they told me about Graves disease and diagnosed my hyperthyroid. I was put on to antithyroid medications, carbimazole. A few months later I was told to switch to PTU due to wanting to conceive, and apparently, carbimazole is not good if you happen to get pregnant.
My anti-thyroid medication never worked effectively, and after two years of constant battling to get my levels in normal range, I opted to have a thyroidectomy. This was not a decision I made lightly. I was working full time, and the radioactive iodine did not seem like the best option. My endocrinologist said that RAI does not always work, and sometimes people end up having surgery anyway. She also said I would effectively be ‘radioactive’ for two weeks and shouldn’t be around pregnant people. I was working in a call centre at the time, so this was out of the question. The operation was the only option.
Overall, my operation went fairly smoothly, and the scar was fantastic. It’s now two years down the line, and my scar is hardly visible. There was a small problem with my operation, however. When I woke up I went to smooth my hair at the back of my head. I noticed two very considerable bumps had formed.
The hospital was not very forthcoming about why they were there and just said ‘there was an incident when I was under’. I think from the sketchy information I received, it appeared I had some sort of a reaction or fit when I was under and banged my head on the table. Other than that, my operation and recovery were fairly easy.
I thought the operations were out of the way, and I could begin my recovery and get better. This was not the case.
Literally a month after my TT, I was back under general anaesthetic again after being told I had over 60 little gallstones and needed my gallbladder removed. Two days after this operation, I was in AGONY. I couldn’t move. My stomach had swollen like a football, and I felt so poorly.
I was taken back in again to the hospital as an emergency, and after a week of antibiotic, painkiller and morphine intravenous drips, I was told I had sepsis, and an abscess had formed in one of the incisions. The doctors wanted to excise the abscess there and then, on my bed in the ward. I couldn’t even bare to let the doctor touch my tummy. I had to request they drain the abscess under general anaesthetic.
It was my 3rd operation in 2.5 months! I was starting to feel like the game “Operation!”
Most recently, I have suffered from excruciating aches and pains in my muscles and joints and have been referred to a rheumatologist. Where I was diagnosed with Fibromyalgia! I have also been told I have something called Hindfoot valgus which is caused by flat feet. It means that my left ankle, in particular, becomes very painful to walk on.
This has been my life for as long as I can remember. It was only when I read the concept of The spoon theory that I really understood that there are others out there that suffer from invisible illnesses like me and also showed me the wonderful community of fellow Spoonies out there!
I wish I had known then what I know now. I also wished I had had had the support of the Spoonie community behind me because things might have been different. This is why I started The Thyroid Damsel, so I could share my experiences and hopefully, it will help other people.
We have to stick together
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Originally published at The Thyroid Damsel.