Hi everyone. My name is Avril and I’m 33 years old and live in Dublin. I never thought I would have to reach out and ask you all for help as I’ve always been an independent soul but the truth is I’m really struggling. Both physically, mentally and financially. It’s one of the hardest things I have had to do but I have to set my pride aside and be open to receiving help and support from others. My story is a little complex so apologies in advance.
I first experienced the signs of ill health at 17 years of age and thought nothing of it. I was told by Dr’s that I was suffering from anxiety and depression and was prescribed antidepressants and assured I would get over it. I battled on the best I could even going to college and studying science, meeting my hubby and trying as best I could to live my life and make memories. During this time I constantly battled tiredness and was even known to fall asleep in lectures. I told myself that this was just me and that I was probably a person who required more sleep than others to function. Roll on my twenties where I graduated from college and started working in the pharmaceutical industry. I worked night shifts every night for two years straight, determined to make a real go of my career. Then I started to feel a bit out of sorts so decided to switch to a job with more stable 9-5 hours. During this time I started to experience awful tummy problems and was told it was due to IBS. It got so bad that I had to leave my job. The fatigue increased and I was pretty much stuck in my apartment for a whole year. I finally had the strength to return to the working world and started working in a hospital laboratory. I really felt like my life was coming together again.
Within the next couple of years I decided to add on to my education by undertaking another degree on a part time basis whilst working full time. During this time things got a little chaotic. Work became incredibly busy, I worked overtime hours, studied at night, travelled up and down to Galway at weekend’s to attend labs, got married and supported my husband while he undertook his PhD. My health decided it didn’t want to play ball anymore and once I completed my studies, my body decided to crash. I became incredibly ill and since I worked in a hospital decided to be proactive and try establish what was making me ill and what I had to do to get better. Unfortunately there was no straight answer. I continued to get weaker and weaker and reduced my hours to part time until it got to the stage where I couldn’t function anymore. I went to see a whole host of specialist doctors to try get an answer. I was told I had chronic fatigue syndrome, ME and fibromyalgia and was sometimes met with such comments as ‘are you sure it’s not in your head’ and ‘maybe we should increase your antidepressants’. I tried physiotheraphy, CBT, graded exercise therapy to no avail. I had test upon test carried out all whilst getting weaker and weaker. I finally met an infectious disease doctor who diagnosed me (through blood test) with an infection called chlamydia pneumonia. He specialised in Lyme disease and said my symptoms pretty much matched his criteria for that diagnosis and that was further backed up by the positive CP infection (as they can go hand in hand).
I started treatment for Lyme disease in November 2015 even though my Lyme blood test from an Irish hospital tested negative. I later discovered at best this test is only 30% reliable. The intense antibiotic treatment for lyme was extremely hard. I cannot express the torment both physically and mentally of herx reactions due to toxicity in the body. I even ended up in hospital with drug induced hepatitis caused by one of the antibiotics. It took a while for my liver to return to normal and I started a regime of supplements and natural products to help build my immune system up. I commenced antibiotic, antiviral, herbal and complementary treatment’s over the following two and a half years. Unfortunately no treatment has worked for me and I remain mostly bed and housebound these days. It’s hard to admit but I have zero quality of life. One of the hardest things in life is having the desire to live but are unable to do so.
Myself, my hubby and my dog moved back in with my parents two years ago to try help ease the financial stress whilst I was under treatment. I never thought that I would be still be here today, be sicker than I ever thought imaginable and have no career or money. I lost my job because of this. We’ve spent every single scrap of money coming in on hospital fees, consultant fees, doctors fees, medical tests, medication, acupuncture - you name it! We’ve never once asked anyone for money. My parents will be retiring in the next year and Kev’s parents are retired so even if they wanted to help us financially they simply couldn’t afford to. Kev works incredibly hard in his job. Unfortunately he’s not on the best wages and has to pop home on his breaks to look after me. I really need a full time carer but this is not possible at the moment. I can’t thank my hubby enough for everything he does for me. I certainly didn’t think life would turn out this way for us. Not only is Kev working hard but he is also my carer. I depend on him to help bathe me, make me food, dress me and even wipe away the tears when things get a little too much. It’s really hard to have to depend on someone but that is how it is at the moment. Treatment wise they are running out of options for me. My body has taken one hell of a beating and the infections have kick started a range of autoimmune conditions. My immune system is so incredibly damaged. I’m feeling extremely frustrated, broken and upset. I am a fighter and try tell myself that I will get through this but the more knocks I get the harder it is to keep going. I am completely wiped out. The only options I have left are to travel to Germany or the states to undergo specialised treatment. Both countries have designated Lyme clinics that have successfully treated and cured even the most extreme cases of Lyme disease. Unfortunately the costs associated with these clinics are extremely high and something I cannot afford myself. To get treatment in the states is circa €100k and Germany €30k so Germany would be the most affordable option for me. There are two particular clinics doing two slightly different treatments but each come highly recommended. I’m not sure which exact treatment is right for me yet so I’m currently researching both of them. I am also in touch with fellow Lymie’s who have been treated by both clinics to help with my decision. The two clinics are Klinik St George and Infusio clinic both located in Germany.
So here is where I really start to struggle. I hate asking anyone for any sort of money as I know everyone is fighting their own battle in life and money is hard to come by but I really need as much help and support as I can get to try and reach my target. I genuinely need this treatment. I am barely surviving and feel like a prisoner in my own body. I started a blog whilst battling this disease called A Paler Shade Of Beauty (www.apalershadeofbeauty.com
) to not only give myself a sense of reason to keep going but to share my personal story with illness, talk all things beauty and most importantly to give people going through or who have gone through illness a voice (I receive absolutely no form of payment through my blog). I know how complex illness can be and how it effects people both physically and psychologically. I know how hard you have to shout in order to be heard, how crippling basic tasks can be and how demoralising being infirm is. I am passionate about supporting people who need it the most and it’s an area I really want to get involved in when I do get better. My main mantra is, even through illness beauty remains as I understand exactly how it feels to look in the mirror and see that shell of a person staring back at you. Illness may ravage the body and dull the exterior but beauty shines from the inside out. No matter how bad my days get the passion to support others who are ill grows inside. This can be challenging when I have limited energy but I try my best even if it’s just to be there to listen. I am sorry for the long winded story but I wanted to explain as much as I could. I would really appreciate your help and support. I know it’s a lot of money but any little bit would really help and it would be very much appreciated. I will keep you all updated as things progress but firstly I would like to thank you all for taking the time to read my story and for offering your support.
Avril www.facebook.com/apsob www.twitter.com/apsob www.instagram.com/apalershadeofbeauty