I have had a massive past few years. The following things were going on around me-My dad had stomach and esophageal cancer, he had an operation to remove it which has been successful but has left him very uncomfortable. My mum was diagnosed with Leukaemia and has undergone chemotherapy leaving her currently in remission and my dad’s twin passed away from cancer.
I want to write down this journey as I guess it is part of my recovery process. Some people may think it is over sharing and to them I say “when I’m quiet, then worry”. So this is my autoimmune disease journey starting from the beginning.
When I was 15 or so I was diagnosed with chronic fatigue syndrome. I couldn’t do much (I took advantage, being a teenager). I was definitely lethargic sleeping most of the time. I went on to suffer migraines and with these I could not stand any noise or light. I felt tingling in my hands and feet. My lips would go numb and I often vomited. To resolve this I attempted acupuncture and this was effective.
When I was 18 I had a major life adjustment. I moved out of home soon after and began a process to place a Band-Aid over my issues.
I was not ill for several years and did not need to go to the doctors for a long time. My weight fluctuated. I always had a vast appetite. I never left a plate of food alone if it was in front of me. I was an average size 12 for a long time. I was strong and independent. I had a very busy life and worked hard.
Six years ago I was married and I was a size ten to twelve then. I was happy and a little too relaxed. It was several months before then that I was on a no gluten or dairy diet. This was a hard diet and I found that weight dropped of me. I lost 12 kilos. It was a natropath that had tested me for these things and advised me off what I should not be eating due to allergies. I was also drinking soy milk then.
After we were married we fell pregnant and lost that baby. I was advised that I had Hashimotos Thyroiditis. The blood tests were the indicator and it was only a few days after the test results that we had lost the baby (results were 88. and should have been 0.04ish) I was devastated and could not imagine how I would recover from the loss let alone live with this disease forever. At that time I could not focus on anything other than how to get pregnant and have a baby. I did no real research on the disease as all I could do was mourn my baby. All I really did was take the medication and get the levels correct to fall pregnant again.
I was scared to death when we did fall pregnant. I did not want to move in case it fell out. I put on 30 kilos with my eldest sons pregnancy. The pregnancy went well and he was born by emergency Cesarean in July 2008. The gap between him and my youngest son was 15 months; it was a lovely time and a happy time. I wanted them close as I am a twin. I exercised much more with this pregnancy, even completing boot camp until I was no longer able. I wanted to keep the weight off as I felt so uncomfortable after my eldest. All I could think was that if I just kept moving I would bounce back after the birth.
Well another Caesar (this made me a tiny bit upset as I feel that I have missed out on natural birth) and another healthy boy. Both boys weighing over 4 kilo’s might I add! I will not lie to anyone; the first six months were HARD! I was tired all the time. I wanted everyone to think I was the perfect mum. I wanted to prove them all wrong. I could do it and I could manage two babies. I still helped everybody I could. I re-designed my house and did all of it myself. I started work two days a week. It was like being in a pressure cooker.
I went and saw my endocrinologist whom advised me that I know had Graves’ disease. She blocked my thyroid with a drug called PTU and replaced it with thyroxin. Things began to spiral, my weight was increasing and the endocrinologist added a weight control drug called Reductil. So count the drugs, there are 4 tablets a day so far. The Reductil managed my appetite and took a few days to get used to. I was on the go severely until I became normal. It worked though and my appetite was normal.
After eight months or so the drug was no longer available after a study concluded that it was causing people with heart problems to have severe reactions. I was upset by this as it was keeping me from eating to excess. I mean the very first day was a clear example of exactly how well it worked for me. I ate a quarter of my favourite gourmet sandwich and could not fit in another bite. I could not believe it! I felt FULL!
To go off Reductil everything changed for me. I tried another drug called Duramine
I could not stay on that drug and this meant that I was bound to put the weight on again. I fell into a depression. The depression led to anxiety and panic attacks. I reached a point where I was ready to seek help. I lost my best friends as they could no longer handle me. They would not even talk to me. They still no longer talk to me. My best friend got married and I was not invited. She had asked me to be her sons godmother and that never took place. I was in a spin of depression and anxiety. I didn’t take any medication some days and took to many other days. I would run out of the drugs and not go to get them from the chemist. I would reason with myself that it was fine I was normal so it didn’t matter. I was eating terribly and not doing any exercise.
To add to the rest, just before Christmas I underwent a nasal passage reconstruction. One of my nasal passages was completely blocked. This was a day patient operation but what I did not realize was the recovery was over a month and this recovery of your face/head is severe. With my boys knocking me occasionally and not being able to do anything was traumatic. Having this surgery was a bad decision for me at the time. The reason I went ahead with it was because I was on the waiting list for twelve months. I really never put enough thought into the timing and the state my body was in. Christmas was a nightmare and stressful.
I began becoming increasingly aware of heavy periods, headaches and period pain. I spoke with the endocrinologist about going on the contraceptive pill and it took me several times to find one that worked. This was three months of frustration. Finally this pill seems to be working with my body. No more headaches, much less pain and a lighter period. Plus no babies!
My work suffered until I eventually sent my boss a text telling him that I was suffering from depression and anxiety. He was supportive and so were the girls at work. I took days off work to try and re-coup. I felt guilty all the time for not being happy with what I was given. My boys kept me going, many days all I managed was to feed them/ change them and put them to bed.
I went to the GP and had 3 prescriptions given to me and a referral to a psychologist I went once a week for several weeks. That got me through the best friend’s wedding and the medication adjustment. It was wonderful to have that time to myself and it took a long time to stop the guilt. I was more than happy to have a tea in the waiting room, let alone talk to someone about me for an hour.
I have tried several antidepressants and am currently on Apaxil 20mg a day. I have realized that I am so much less anxious. I did not realize how much anxiety I had suffered prior to starting the medication. The previous anti-depressants that I was on did not agree with me at all. On Citalopram I was suicidal. I was having severe harming thoughts. I had devised a time and place and even worked out how to complete my own death. I fantasised about hanging myself, even to the point where I would place my hands around my neck to see how it felt. My insomnia kept my depression at a peak. I felt so alone and was reaching out to people as often as I could.
So today I am currently on six tablets a day 3 x PTU, 1 x thyroxin, 1 x pill, 1 x anti-depressant.
Currently my teeth have begun to chip, my memory is terrible but I feel more myself than I have in over a year. I have lost a best friend and 3 close friends. I am over weight but I am enjoying exercising. My feet are a size and a half bigger than when all this started. My nails are not peeling anymore. My legs are often restless. I am particularly sensitive to noise and light, so much so that I sleep with earplugs in. If I wake at night it is so long before I get back to sleep and sometimes I don’t. I sleep when the boys do most days and I need at least 8 hours at night. I am in soft focus some days and find it hard to communicate with others. I feel swollen some days and then others I feel as though I am a size smaller. Occasionally my eyes hurt. I feel the temperature more than other people.
The positives are that I have gained an understanding of suicide and anxiety. I am a better mother and partner. I have much more sympathy for the ill.
I am looking into the autoimmune disease further to understand what I can do to help myself. My endocrinologist’s goal is to get me of drugs completely. She is warm and understanding. She understands that I have young children and emails me if our schedules don’t meet. She takes the time for me.
I am listening to my body, this means when my metabolism slows down my levels are incorrect. This is one of my red flags. If my metabolism is too fast then I am out of whack. In both instances I need to react. I need to get my bloods done. I need to keep exercising and eating correctly. I need to get an appointment with the endocrinologist.
I’m not sure that I am finished expressing this journey as it feels unfinished. I am glad that I wrote it down though.
