When your
IMMUNE SYSTEM
is trying to KILL you
Hi, I'm Chantille (Tilly) and this is my story. I cannot begin to express how many times my life has been in danger and I have been completely unaware. With over 30 years of illness and diagnosis or possible misdiagnosis I am now starting over. Going back as far as I can remember if not further, I have suffered through various forms of illness. Sometimes minor and sometimes quite severe.
What had started off as small patchy skin rashes, bloating, abdominal cramps and irritable bowel syndrome over my younger years had slowly expanded into diarrhoea and rarely constipation, headaches, heavy chest, heart palpitations, sometimes chest pain, acid reflux, heart burn, nausea, dizzy spells, fainting, hives, rashes, infections, bubbly skin, flushed skin, dry throat, sneezing fits, dry itchy eyes, unfocused vision, fatigue, restless sleep, poly cystic ovarian syndrome, endometriosis, diverticulitis, rapid pulse, infertility, rare but extremely heavy and extended periods, persistent ringing and ear popping, insomnia, sleep apnoea, brain fog, memory loss, forgetfulness, bad focus, depression, panic attacks, anxiety, low iron, low vitamin B and D, trouble healing, burning skin, congestion, swollen lips, jerking like shocks during sleep, occasional mood swings, emotional disconnect and anaphylaxis. Sometimes being affected by one or two at a time and other times affected by several all at the same time.
So far I have managed to narrow my body's worst reacting allergies ranging from foods to environmental and man made.
Between 10 and 21, I was finding myself suffering through, bloating, stomach cramping, diarrhoea, constipation, irritable bowel, skin rashes, heart palpitations and rapid heart beat, burned like skin irritation, irregular periods that range from 1 to maybe 5 times a year at most. My first recollection of any sign of an issue is when I was roughly 10, we were visiting family in Tweed Heads (My birth town) when on our way back home to North Brisbane I remember begging my parents to find a bathroom as I was struggling to hold anything in. I was told to hold it as we were almost home but I kept begging to stop as I was desperate, by the time we found a bathroom it was too late. Luckily because it was a road trip we had spare clothes to change into but I was still left embarrassed and mortified by the experience. I found myself in situations where it also affected relationships with friends and even partners at times. A lot of times I found that I couldn't or was too embarrassed to explain what it was that I was thinking, feeling and how or what it was that I was being affected by and it would be perceived by others as tantrums, mood swings and other emotional and physical impositions. There were times where I would be on public transport and have to get suddenly get off a bus or train to find the closest bathroom only to have to wait for the next form of public transport to come along. Sometimes begging a friend, family member or even worse an ex partner to pick me up because of knowing public transport had no options of bathrooms if I urgently needed one. As a result this played on my nerves and also made me feel worse and more anxious making it impossible to know if it was a reaction to something or just nerves creating a nasty cycle. During a dinner date I recall being accused of being bulimic as during meals I would have to excuse myself to use the bathroom because I wasn't feeling 100 percent. There were times where I'd feel perfectly fine only to be suddenly woken up by someone nudging me to let me know they were home, not even knowing I had fallen asleep. Seeking medical assistance it was suggested I see an allergist. I had my first skin prick allergy test and was told I had positive allergies to cockroaches, dust mites, and grass.
For several years under the assumption that my allergies were as diagnosed, I had suffered through as best I could. Trying different brands of antihistamine and having vastly different reactions from dizzy spells and drowsiness to nausea or being extremely incoherent I found Telfast to be the best option for me. Still having to deal with the same symptoms as before there were signs of new allergies starting to form, like pollen and alcohol. I would have sneezing fits and nose bleeds during change of season. When I was 26 my heart was showing strange or unusual heart beat patterns. Going through many heart tests and having machines attached during my sleep, the doctors couldn't find what was wrong and having it dismissed due to having no accurate readings at the time. Soon after I had left my home town north of Brisbane to start a new life.
By the time I was 27 I had news of a positive Pap test that ended up leading to Lletz surgery and having precancerous cells removed. Thankfully the cells came back benign but during surgery it was discovered I had early traces of endometriosis.
Living now 10 and ½ hours north west of Brisbane in a little mining town called Clermont. Things changed drastically. Having dinner one night with a group of friends, suddenly a couple of hours later I was braking out in a rash that resulted in hospitalisation. My body felt like it was on fire, breaking out in little swollen red lumps all over. Being pumped full of steroids and phenergan, attached to drips and machines. The doctors had told me that I was having a hive outbreak, a very new experience for me. Over the next year or so there were so many break outs and hospital visits now mixing in with all other symptoms that I had suffered in the past. Due to regular introductions to prednisone this caused rapid weight gain.
I thought maybe it was environmental because as these new occurrences happened after moving to Clermont and decided it was best to leave and move closer to family in a little town called Dalby 4 hours from Brisbane. Living closer to Brisbane also meant that I could try get the help required to figure out what was actually going on with my body. I tried a clinic in Brisbane expecting tests only to be given a vial of snake venom to hold in my hand. The “specialist” gave me a beaker to hold to which they added more small vials whilst tapping down my back with some weird hand held contraption. There was no real result other than being told I was allergic to was sugar. Unfortunately this little information didn't make a difference and there were still regular allergy outbreaks over the next few years.
With work I transferred back to Emerald, 9 ½ hrs North West of Brisbane. I lived roughly 30 minutes out of town and had a break out that was alot harsher then normal and called an ambulance to try meet me half way. I made it to hospital and remember being told by the doctor that I was wasting her time leaving me perplexed as to how I was supposed to manage what I had no idea what was causing the reactions or have no control over. There were several more hive breakouts but by now antihistamine became a regular safe haven for the most part. Although I had antihistamine as a security blanket, it is only a band aid to cover a still unknown and underlying problem. I flew to Sydney to see another allergist to be given a new diagnosis. I learned during a skin prick test my sneezing fits were a symptom of my allergies. There were several skin pricks done for many different ailments, this time I learned that I was allergic to Grass, Pollens, Dustmites, Cockroaches, Mould, Insects and Salicylates. What the hell are Salicylates?? I walked out of the clinic with very little information and was left more confused than when I walked in. After doing some research I discovered a Salicylate is a salt or ester of salicylic acid. Salicylates are found in many foods including fruits, vegetables, coffee, teas, nuts, spices, honey to name a few. Not only were they in food they are also in cosmetics, medications, cleaners and much, much more. Trying to make changes became extremely challenging especially after 30 plus years of habits.
It was decided best to move back to Brisbane stopping through Dalby for a short time during transition. On a night out I was going to a car and plane show, and whilst walking around felt hive like lumps developing for the first time in my mouth. Something told me i needed to get a hospital quickly. I had turned around and tried to make my way back to the entrance. Knowing that I wasn't going to make it to the hospital in time, I called an ambulance begging them to hurry, by the time I was at the entrance not even 100 meters away I was now on the ground. My first collapse- I was blacked out and cold but was aware of all that was going on around me, I could hear all the voices talking and car noices in the background but could not keep my body concious no matter how hard it tried. My mind racing with thoughts that this was how I was going to die. Trying to make their way through the crowd the ambulance had finally found me and feeling I was once again safe, they asked me to get myself up from off the ground and although I could communicate with them I couldn't find the strength to lift myself up as I was only partially concious and felt like I was numb from head to toe. The ambulance officer pulled my up by my jumper so I was sitting up but I still couldn't find the strength to lift myself to standing position, so he pulled me up from under my arms and made me try walk my way to the ambulance trolley so they could transport me to hospital, Doing this all the while still being only half concious trying to hold myself up from collapsing again. Being at hospital meant that I was hopefully now safe. This was one of the worst reactions I have had and I still remember clearly to this day.
I was now finally living back in Brisbane and started to have quite a few heavier outbreaks that lead to hospitalisation once again. Seeing my regular family physician, I had a referral to an allergist close to home. Before doing any testing I had a consultation explaining my situation to which the allergist had scoffed at me saying that it was quite rare for me to have one of the allergies I told him I believed I had, but after some further questioning he advised me that he pretty much knew what was going on but wanted to confirm by doing tests. The test results came back showing that I was now diagnosed with a lot more allergies including- Wheat (Omega 5 Gliadin), Exercise (linked to omega 5 Gliadin), Crustacea, Shellfish, Pineapple, Watermelon, Dew Melon, Rockmelon, Mushroom, Soy, Egg White, Grass, Pollen, Mould, Insects. Once again I had results but was provided with no information on how to manage my new allergies other than now being told I must carry 2 epipens at all times. But it was okay to consume small amounts of allergen to try build a tolerance.
I also saw a Gynocologist to try figure out what was going on with PCOS , endometriosis and infertility only to be put back on the hormone pill to try regulate my menstrual cycle. As it turns out I am allergic to something in that medication also as it seems to burn me from the inside out. I end up with red raw rashes on my thighs and stomach almost like severe psoriasis, it makes my period dangerously heavy and gets to a point where I need medication to stop it, contradicting its purpose in the first place.
In 2018 was a sleep apnea test resulting in mild sleep apnea but also because i was holding in so much anxiety throughout the days I started having panic attacks in my sleep which turned into inconsistent sleep patterns.
For 4 years I had been managing a photography lab and absolutely loved my job and co workers but towards the end of the year (2018) I was made redundant, the stress took a massive toll on my health leading to the decision of having surgery and trying to take back control of my health. During pre surgery test it was discovered that my body doesn’t seem to retain much Vitamin B and D or Iron leading to regular injections and tablets to try keep them level. My surgeon had informed me that having low levels of vitamin B and D can also contribute greatly towards a chemical imbalance in my brain that can lead to Anxiety and Depression, so regular check ups are advised for maintenance. I generally have 2000mg Vitamin D daily and Vitamin b injections once a month with daily capsules to try keep balance also. Starting at the gym and eating healthier meal plans and doing 6 week challenges was amazing. I absolutely loved the various programs that were designed and tried to stick with it as best as I could and even for the first time in a long time I had abs, I was struggling with body dismorphia due to such a dramatic change. Although I found I felt physically awesome especially after losing almost 30 kilograms, there was something still not quite right. At the end of some work outs I found myself feeling really heavy in the chest for hours after or needing to go home and sleep.
I love, love, love hiking and could just walk all day every day if my body will let me. My dream/bucket list was and still is to hike around Australia and New Zealand one day, it would be amazing to do the world (lol) but I could only dream.
At 39 In 2020 I started a new job and then 1 and half months later, as we all know Covid took the world by storm. Working in retail meant close contact with people every day and having possible compromised immune system meant that vaccinations were highly recommended. Things were changing quickly and also harder to obtain. Certain brands of products that were a regular or essential purchase were now unobtainable or have become obsolete over time. I now discovered a new form of dermatitis that had broken out in a very awkward part of my body. The doctor even tried to suggesting that it was Herpes. Now I have only had one partner for the last 12 years or so at this point and It didn't matter what type of ointment, cream or tablet I told to take to try heal the issue it wouldn't go away leaving me in sometimes excruciating pain. There were times where I'd be in the bathroom bellowing out with tears in my eyes, in the shower or on the toilet. I came to the realisation the only real changes that occurred in this instance was the brand of toilet paper and detergents that I was now using, was no longer the brand I used to purchase. So after some experimenting and adjusting of products I figured out it was toilet paper. Who would have thought something as simple as toilet paper, an every day necessity could cause so much pain. It makes you realise there are so many little things that can be taken for granted. Good news is now I am all healed, the bad news is that (after extensive research) I now have a new developed allergy to bleaches, dyes and formaldehyde.
Also in 2020 when things calmed down a little, It was decided that due to the nature of my allergies and that anaphylaxis was now involved it was best to remove my tonsils as I only had roughly 1 cm between each tonsil causing my throat to close much quicker than average. Having them removed not only would hopefully help with anaphylaxis, it also assisted in helping my sleep apnea and was possibly "part of " the cause for having apnea.
Over the last 3 or so years I have noticed some increased changes in overall allergies and health. From fainting like dizzy spells, the inability to take deep breathes due to the feeling of a heavy chest occurs mostly of a morning or especially when doing extreme exercise, regular headaches, heart palpitations, sneezing fits, leg cramps, always physically drained or fatigued, much more than normal even after a great nights sleep, mysterious hive breakouts, anxiety and depression that comes and goes dramatically even though I am on the highest dose of antidepressant and take my regular vitamins, varied moods swings (mostly influenced by outside contributing factors), extreme reaction to alcohol including reflux, heart burn and flushed/burning skin, stress related hives and on the last few instances allergic reactions to my period that include inflammation, hardness and painful swelling of my breasts , burning of skin and hives, the inability to find a balanced body temperature between hot and cold. I have also come to the realisation that an anxiety/panic attack and anaphylaxis show very similar symptoms and my brain struggles to tell the difference between the two at times putting me higher at risk of dizzy spells and fainting. Most of my energy is drained through out the day at work that by the time I get home I pretty much have dinner some days and go straight to bed and other days I just go straight to bed. I am finding myself at a point now where things are taking a toll on my overall mental health and some days it just feels like there is little fight left in me. The hardest struggle has come with emotional disconnect not just from life but including from loved ones or the inability to feel and enjoy so many things that usually make me happy. Due to many experiences over the years there is a great lack of trust and I have a tendency of avoiding letting people get close or push people away out fear of hurt for others and myself, which can make life quite lonely at times. Most recently has been a sense of loss of identity along the way and the inability to recognise myself even when I look in the mirror. I have recently been doing some extensive research following these changes and have found a specialist in Brisbane who I am hoping maybe able to assist in finding the core problem and aiming for a proper diagnosis to turn things around. The specialist offers a great team of assistance including an immunologist, psychiatist and dietitian.
I have created this blog in the hopes to find anyone out there who may be able to assist with answers or even relate with what I am going through. I hope to use this blog to not only help and learn for myself but to also aim at helping others along the way. I am setting a 365 day challenge (blog) that will be kept in diary form and hoping to create a video blog on this page to follow progress along the way. Please follow and share my journey to hopefully good health and a happier new beginnings. To be continued in blog
