About me, M.E.,Lyme and invisible illnesses

It's not a beauty post from me today, I thought I would tell you a little about M.E. and Lyme Disease and the effect these have taken on my health. In 2000, I was having the time of my life, on my first holiday with my then boyfriend, now husband and on our second night there, I was bitten. I woke up to find that one of my legs and one bum cheek had been eaten alive, practically! I had been on lots of sun holiday before this and had never been bitten, so this was a shock to the system. I really didn't know what to do with the bites, apart from apply sudocreme and assume that they would heal/disappear. They weren't itchy, which I thought was strange because I had been on holiday with my friends only a few weeks before and my best friend got lots of insect bites was tormented from the itch. The bite on my bum was huge and had a very angry red circle around it. I could see people look at it around the pool because it spread so far that my bikini bottom wouldn't cover it. I forgot about it and just got on with enjoying the rest of my holiday. 

In the following few months, I felt very run down and then got a chest infection. I hadn't been at my GP's for so long that she didn't actually know who I was when I went to her, so that will tell you that I was in pretty good health prior to this. The infection lasted about 2 weeks and then I went back to work. I felt really exhausted all of the time, but tiredness can always be excused - busy in work, late nights, not eating well enough, not sleeping well etc etc so I wasn't too alarmed by it. Six months later, on a night out, I collapsed. I couldn't hear anything, my vision blurred and I fainted. I knew in that instant that this was bad - my gut instinct told me that I had something very wrong with me. I went to my GP who sent me off for blood tests and said she thought it was glandular fever. This diagnosis stayed for about 6 months, until she conceded that I should be feeling better by now. During these months, I saw her weekly for various other infections that I kept getting - tonsillitis, sinusitis, gastric bugs, an enlarged spleen, enlarged lymph nodes etc etc and I fainted a few times most day - that was during the hours I was awake because I spent most of my time asleep. The fatigue associated with M.E. is crippling. I was tested for sarcoidosis, addison's disease, thyroid deficiency etc etc.   My life had been turned upside down & inside out and nobody could tell me why. I didn't relate any of this to my bites, because I had never heard of anybody having a reaction like this to them and at this point, they had disappeared anyway.

After seeing a specialist and having numerous tests, I was eventually diagnosed with M.E. (Myalgic Encephalomyelitis). I was told that there was no cure and I had to go home & rest. I was pretty devastated, but determined to beat it. I never felt that this was it and that I should just accept it. I couldn't understand how I went from an active, sociable person who was able to work and play hard into a bedridden person. Over the next few years, my health only got worse, despite me trying many conventional & alternative medicines and therapies. After 5 years, I went to a clinic in Germany. It was there that I got a better understanding of what was actually wrong with me. I was diagnosed with Chronic Lyme Disease and told it had all started with the bites. I also had a list of 14 other illnesses/diseases/conditions, but it was felt that this was the main culprit in bringing down my immune system and energy system. I was told that until my immune system was restored, I would not see any improvement in my energy. Lyme Disease is a bacterial infection and if caught early (in the first few weeks) can be treated with antibiotics quite effectively. Because this was 5 years after my bites, it had spread throughout my body and run riot. Again, this is incurable so remission is the goal.

I was prescribed oral antibiotics and these caused the most awful herxheimer reaction, but I was told that this was a good sign. It was hellish but my eyes were on the prize so I ploughed through. When I was re-tested and shown to have no improvements, it was decided that I should go back to Germany for the 5th time to have IV antibiotics (the other trips focused on my immune system and I'll write about those treatments some other time). Again, this was unsuccessful. I tried to get treatment here in Ireland, but there are no experts here. I was fobbed off & told I should be better by now, that I should go home & rest and hopefully I would be better within 10 years. I was told that the reason I was so exhausted in the months after my holiday was because I had been having too much sex on holiday (WTF?!), I was told I should have my tonsils out & sinuses drained, I was told there was nothing they could do to help me. I have seen gastroenterologists, haematologists, ENT specialists, immunologists, neurologists, rheumatologists and more. I have seen specialists from America, Germany and the UK. Alternative treatments I have tried include acupuncture, reiki, reflexology, massage, homeopathy, yoga, chinese medicine, ozone treatment, hyperbaric oxygen treatment, hyperthermia & more. I have had MRIs, x-rays, ultrasounds, ECGs, EEGs, stem cell treatment and more. Not one of these appointments, tests or scans were free . We have spent almost €100k on the quest to regain my health and I have been unable to work since February 8th 2001. I have had pneumonia on several occasions, mini-strokes, have sinus disease, my glands are permanently enlarged, migraines, pain from head to toe, ovarian cysts, pernicious anaemia, insomia, fatigue that is so bad that I could just vomit from it and many, many more health problems. 

My husband has been by my side every step of the way. He didn't know me for very long before I became ill, but still remembers "me" and is as determined as I am to get me back to full health. Having an invisible illness is a very difficult thing - people mis-judge you, are ignorant of it because they haven't heard of it or because they can't see the problem and can be dismissive. They don't know what it is actually like to live with a debilitating condition so make stupid remarks or give ridiculous, without substance, "advice". They can be flippant, impatient and unkind. It takes huge strength of character to live with an invisible illness and it can be a lonely road to travel and I would say to anybody who suffers with one that you do not have to justify yourself to ANYBODY! I am an extremely positive person and I have not let the illness(es) define me, despite the fact that I am often bedridden and housebound. My husband has often had to feed me, brush my teeth, bath and dress me but I know and believe that those days will be a distant memory some day. Our sense of humour has always kept us going throughout the last 15 years, How lucky am I to have somebody like him to go on this journey with? (One doctor even said "He married you after all this?!). I am extremely lucky that I have always been an inherently determined and optimistic person and this is probably what has kept me alive. I am very lucky in many ways.

I would urge you all to be very vigilant about tick bites and bites in general. If you see a rash like the one shown above, go to your doctor and insist on antibiotics. Do not leave the room without a prescription. I would also urge you all to try to understand that just because you cannot "see" an injury, it doesn't mean that it doesn't exist. Have compassion for those who greatly need it. A little compassion will go a very long way.

So why do I write a blog about beauty? Well, my interest in beauty never waned and to be honest, it is a distraction from my reality. I love how applying my make-up can make me look (superficially, at least) better. I love painting my nails and trying to help my skin and hair to look better because they have taken one hell of a battering throughout the last 15 years. This is my happy place. I don't have the energy to write every day so tend to write posts in spurts and mostly from bed, because at the moment I am pretty much housebound - hence why my hauls are generally from online sites. I am not currently on treatment, but will be trying a new protocol soon and will NEVER give up on my aim of remission. I will include some more health posts in the future on treatments that I find help me along the way. 

I will do more posts in the future on what exactly Lyme is, the symptoms, treatments, how it affects the sufferer etc, but today, I wanted to briefly tell my story.

If you have made it this far, well done and THANK YOU! 

If any of you suffer from Chronic Fatigue Syndrome, M.E., Lyme Disease, Lupus, Fibromyalgia or any other invisible illness, I would love to hear from you and remember, you are not alone.

Thanks for reading!

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