Make a difference Complete a 7 day sunshine challenge
No act of kindness, no matter how small, is ever wasted.
Happiness is like jam,
you can't spread even a little,
without getting some on yourself
NOEL FITZPATRICK - SUPERVET
Help spread a little sunshine
in someone else's life today
My name is Marisol but most of people call me Sol, it means ‘sun’ in Spanish.
Living on the coast in Argentina, sea and sun have played a big part in my life and, as a child I spent most of my spare time on the beach.
I’m an animal lover too, and used to rescue dogs from the streets, as abandoned dogs are a big problem here. In fact my dog Perla was a rescued dog that no-one wanted to adopt, so she has been part of our family for the last seven years.
I taught my children to love and respect all kinds of life, and besides living in a small apartment, it has been a shelter for injured pigeons, dogs, cats and even a duck – we live in the centre of the city so yes, we had a duck for a time swimming in our bathtub!
Writing these memories makes me smile, but these things I’m telling you are sadly the things I can no longer do since I became ill.
In August 2012 I took a trip to the UK. What should have been a trip full of happy memories has become one which changed my life – and not for the better.
One day while I was out enjoying the countryside in the UK and taking photos of beautiful places, I was bitten numerous times by insects. Not normally worrying about insects or insect bites, I thought nothing of it and carried on with my trip, returning at the end of the month to Argentina.
Everything seemed fine until November 2012, when I started having weird symptoms. The first symptoms I remember were severe neck pain which wouldn’t go away with normal painkillers. It got so bad that I had to go to hospital. They gave me strong prescription painkillers and eventually, the pain went.
Next, I had an episode of vertigo – something I’d never experienced before. With each passing week, I started to feel more and more tired and unwell, but I assumed it was just stress or a passing virus, and carried on as normal. But as I continued to feel unwell and got more and more symptoms, alarm bells went off in my head and I went to see a doctor.
The doctor ran some standard blood tests, but they came back fine and he declared that he thought it was just stress and I’d get over it soon.
Sadly he was wrong. I didn’t get better and the symptoms kept on coming. My health got worse and worse. I went from one doctor to another looking for answers, only to be told that the same basic blood tests came back fine and the symptoms I was experiencing were all in my head. As you can imagine, this was very hard to hear that he didn’t believe me when I was suffering so much.
In May 2013, I caught the flu from my sister. While she recovered in a few days, for me it took over two weeks and involved having to take antibiotics. I briefly felt better for one week, but then I relapsed and things worsened considerably.
I ended up in the hospital, where they monitored me closely. Having still not found the reason for all my symptoms, this time they performed an upper endoscopy, but still it was inconclusive. So they decided I must be anorexic and sent me home with a tube in my stomach to be force fed.
After that, I can honestly say that I never felt well again. My symptoms were crazy and relentless. One day I had bad knee pain, then the next it felt like my hands were on fire. The pain was moving around my body and I never knew which part of me was going to feel painful next. With such bizarre, unpredictable symptoms, it was hard for me to explain to the doctors I saw what I was experiencing.
In fact, I must have seen over 50 different doctors, specialising in rheumatology, neurology, haematology and even psychology – the latter to make sure I really wasn’t going crazy.
It was 2015 when my body physically failed me. I had a really bad fall at the beginning of the year and I’ve been bedridden ever since. I’m unable to stand for more than a few minutes at a time and I’m suffering from constant pain.
Finally a diagnosis… but a short-lived victory
Desperate for some answers, I was forced to take the situation into my own hands to try and get a diagnosis. I did a lot of research online, even when I felt so ill and struggled to use the computer.
In the end, I stumbled across a UK Facebook group about Lyme disease and felt that my symptoms matched so many issues talked about there. Could that be the answer to my mystery illness?
At the beginning of 2016, I was able to send my blood samples to Armin Labs in Germany, where Dr Armin kindly interpreted the results for me.
He evaluated them for me and finally I had a definite diagnosis – Lyme disease and Coxsackievirus. I was elated to finally find out what was wrong with me, especially after such a long time – and I was thrilled that it was definitely not all in my mind!
But sadly, it was a brief victory.
The reality struck that here in Argentina, the medical profession has no knowledge about Lyme disease. Doctors here, both public and private, didn’t know how to treat me and nor did they want to treat me. As there’s no official protocol, the government here won’t even acknowledge that the disease exists and doctors risk being struck off if they prescribe a treatment that isn’t recognised by their own governing body.
Where I am now
I’m now at the stage where I’ve lived with Lyme disease for four years. My health continues to deteriorate with each passing day. I spend 23 hours a day lying in bed, flat on my back unable to do anything.
I have no life, and the cost of treatment that could give me my life back is impossible for me or my family to find.
My main symptoms are:
POTS dysautonomia – POTS is a form of dysautonomia that affects the flow of blood through the body, thereby causing dizziness when standing. In POTS, there is an increase in heart rate and light-headedness on standing, as well as exercise intolerance, fatigue and a multitude of other symptoms.
Erythromelalgia – Erythromelalgia is a devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, with intense heat and relentless burning pain.
Unable to walk without falling
Unable to be in a chair for more than 30 minutes because of my autonomic nervous system playing up.
Excruciating pain appearing in every joint throughout the body, the kind of pain that makes you want to die rather than endure it. The only painkillers strong enough to alleviate the symptoms have to be administered at the ER via an IV.
I have a long list of secondary symptoms too.
POTS and Erythromelalgia have no cure unless you find the cause and treat it – I found my cause but not the treatment.
What treatments are there?
When you are ill for such a long time you end up feeling completely isolated and without hope, only through meeting people and making friends with those suffering the same way via Facebook groups do you hold out some hope of finding a treatment.
I am always happy when I see somebody recovering, but it is a bittersweet feeling too. I know there’s a cure, but if you don’t live in the right country or you don’t have the money for the treatment, your suffering continues with little hope of recovering yourself.
I heard that people, like Kelly Osbourne, got better after going to the Infusio clinic in Germany for a stem cell transplant.
I also heard of lots of people getting better in a clinic in Nevada USA, where Sierra Integrative use a natural approach and a secret formula administered by IV. I’ve even heard of people walking again after being treated there and can’t help but think how amazing that would be.
Sadly the treatments are too expensive and out of reach for myself or my family to afford.
The exact cost varies according to where you go, your individual needs and the duration of treatment. Then there’s the cost of flights and accommodation. Plus, as I’m unable to get anyway without a carer, their costs have to be met too. So as you can see, it’s very prohibitive and way out of my reach.
My life and aims for the future
This illness is very cruel – it has destroyed not only me, it’s destroyed my family, and so far, my future.
I am trapped in a body, wracked in pain, confined to a bed. I don’t feel like a person anymore. I just want to be free again, my body is a torture chamber now and I cannot escape.
I’d love to be able to rebuild my life. No matter how much is lost, I want to start again, because I love life. I would love to be able to take photos again, be a proper mother and be well enough to support my kids.
I also have a dream to help other people who are suffering from the same disease. Since I made a public page on Facebook, I discovered there are lots of people who live here in Argentina who have contracted Lyme disease, yet the doctors are doing nothing. They’re being given the wrong diagnoses or left with a life of pain.
I do my best to try and help the people who write to me via my Facebook page. Even though I haven’t yet been able to get treatment for my illness, I try and give them hope.
Thanks for reading my story. I only hope you will never have to face this devastating and life-changing illness.
It’s hard to sit and read about someone else’s life like that isn’t it? This is real, day in day out for her, that’s no life. I didn’t ask Sol to write about the campaign, her thought and feeling about maybe getting the money. Right now my words are only words and promises I’ve made to her that I’m going to help. Sol will not start to feel any sense of hope, she probably daren’t, until the money starts to come in, and who could blame her? Please please help me fulfil this promise I’ve made to this beautiful soul and give her a chance again at life. Xx