Jane’s Story, the reasons behind the awareness campaign
For a very long time I lived with huge amounts of stress in my life, from relationships to employment and finances it was a never-ending treadmill of worry and anxiety.
As a result, I developed severe lower back pain and tried everything I could to let go of the stress and issues in my life, to believe and trust, to find security and support; but all of this failed and in July 2014 I was virtually bedridden with sciatica – the result of a herniated disc. In a last ditch attempt to completely relax I went holiday at the beginning of August and it was a disaster. This was, I believe when the Graves Disease started; with hindsight I can identify a multitude of symptoms but I had no idea it even existed, to me the pain, vomiting and fatigue was caused by the extreme amount of pain I was in.
August saw me in hospital having a micro discectomy, I couldn’t see any other way out of the situation. The operation went well but by the time I got home the vomiting had started again and my weight fell with dangerous speed. My physiotherapy was a no go, I didn’t have the energy – I assumed the way I felt was to do with the operation and it was just my body’s way of recovering.
I went back to the hospital and they were baffled. I had about a million tests done; I was poked, prodded, had blood taken time and time again not to mention all sorts of other fluids they measured and tested. I had MRIs, CT scans, endoscopies and after all of it they found a GIST (gastrointestinal stoma tumour) attached to the anterior wall of my stomach and so, by the end of September I was back under the knife. It was a sizeable tumour but fortunately it was benign and calcified – meaning it had been there for a long time, most likely the physical manifestation of my worry and negative emotions. I had hoped that this was the end of my troubles.
I was sent home to recuperate but alas, I continued my downward spiral into illness – I was vomiting six or seven times a day, I was unable to sleep or eat and my anxiety levels were sky rocketing. I was more than a regular at the hospital with at least three or four more visits and a couple of A&E trips. Each time they told me the same thing, it was a result of the tumour and they would put me on a drip to rehydrate me then send me home with pills to stop the vomiting – by the end of my time there I had around 7 boxes of the same pills that did absolutely nothing to help me. After what felt like a lifetime the doctors came to the conclusion that it was all in my head and brushed off my 35kg weight-loss as an eating disorder. By the end of October the fear of dying started setting in, I couldn’t see a light at the end of the tunnel any more, this was it, my family and friends were scared too, there didn’t seem to be anything more to do. At this point I called my brother in the UK to come and get me.
At the beginning of November, two days after my last overnight stay in hospital, I was flown back to the UK. I don’t remember much of it; I was delirious, floating in and out of consciousness throughout the flight and the drive to my parents’ house is a complete blur. When we arrived my mum had already called the local doctor and booked a home visit and it didn’t take long before he ordered blood tests and told my mum that he suspected it was my thyroid – after just a basic examination.
A few days later I was in an ambulance and off to hospital where I was put on a ward before being placed in ICU because of my Thyroid Storm. I spent five days there but I have no idea what happened; I had the most vivid and real hallucinations but as far as reality goes I was checked out. I can still feel the feelings, smell the smells and experience the emotions I did then but as for what happened in the real world I have no recollection.
It took a while but I had survived the Thyroid Storm – even if at times it was touch and go. I was soon moved to a ward where I stayed for almost two weeks until they regulated all of my body functions. I was drinking a solution of iodine and water – a Victorian “cure” discovered by Dr. Trousseau – and I was on numerous drips to feed me minerals. Once I was able to eat my appetite was insatiable, I had been starved of food and I had slowly reintroduced it to my body (so I didn’t send it into shock) I just couldn’t get enough.
I went home, my muscles so weak I was unable to walk unaided and my emotions were up, down and sideways. My parents, looked after me as if I was a baby all over again – I was helpless to protest. Slowly I managed to do things for myself again but the pain in my body was intense, there were all sorts of things were happening to me – all part of my body coming back to life. I was on a whole host of medication for my thyroid as well as beta-blockers for my heart palpitations.
I was placed on what they call a “block and replace” regime of thyroid medication where one drug to stops your thyroid from working and another supplements the hormones in the correct quantity. I was adamant from day one that I was not going to remain on the medication – I don’t even take headache tablets and they were telling me I had to ingest chemicals every day, three times a day, possible for ever. Not happening.
Fast forward to today and in January I decided that I was stopping my medication as the side effects were seemingly worse than the benefits and with my doctor’s support I did just that. He put me onto a range of supplements and we went from there. When I was diagnosed none of the professionals were able to give me much – if any – information about Graves Disease or auto-immunity, I received no guidance on how to manage my life and was offered no advice about handling the changes that had taken place or those that I needed to make in order to be well. Everything I know I searched for and found out for myself.
From January 2016 I haven’t taken anything – no medication or supplements – and the blood tests I had before I doing so looked good. After almost three months of no medication or supplements and I wasn’t feeling any worse; I changed doctors and went to a naturopathic doctor took a full set of blood tests as well as a saliva test to get a base line and start on a proper regime of healing. The tests results were great in terms of my thyroid – it is working properly – and they showed the supplements I still needed but even though my thyroid results look good I still felt physically awful, the aches and pains had not subsided, my sleep was very poor and my cravings for sweet food were insatiable, I had little to no energy and so the list just seemed to go on. These are the things they don’t tell you when they hand you an autoimmune diagnosis. But they can be managed and that was my plan.
My aim with this campaign is to start from where I am now – unwell, unfit and overweight thanks to my condition – and embark on a three-month journey to wellness. With the support of all of you lovely people I hope to be able to address my dietary needs (Paleo), my fitness needs and also my spiritual needs, as these are so important in the healing process. By the end of the three months I will have exposed autoimmunity for what it is – a silent, chronic condition that takes many forms and shown fellow sufferers that there is a way to put their condition into remission – a light at the end of the tunnel – and to help the families and friends of sufferers to better understand what it is like to live with all of this going on. People with autoimmune diseases do not look sick, and it is hard for other people to imagine what it is like to be us but I hope to change this, or at least start the process of change.