In light of Matt Dawson bravely coming out and sharing his story yesterday lots have things are coming to light for people.
The Lyme discussion group this morning was being flooded with new members - people panicking, arranging doctor's appointments, sharing images of their bites and asking us all what to do, what to expect or/and their struggles with the GP's dismissing them. Leaving them unsure where to turn.
A simple bite and prior to the Matt Daweson interview just seemed like us infected by Lyme were being bossy about being checked and tested is now all coming to light and people are realising it isn't something we can ignore.
I was back at the doctors this morning and were doing the weekly weigh in's, bloods, ECG's when Mama asked the nurse if she had seen Matt Dawson interview.
She replied saying she hadn't and questioned if it was on Lyme disease. We explained it was and the symptoms etc.
She kept quiet at first but then she began sharing how sick her son has been in the last few months. After a camping & fishing trip to the south of France he returned and from there on has been suffering for brain fog, walking difficulties, neurological troubles, light sensitivity and dreadful fatigue. He can no longer work and has been to see many doctors and consultants.
She said her friend had mentioned Lyme at the weekend and had questioned whether or not her son had been check out for Lyme . Of course he hasn't.
Mama and I were looking at each other knowing very well this was likely Lyme and unfortunately probably now chronic Lyme with the symptoms her son was presenting. Mama listed a few of my symptoms and we shared some of our Breakspear stories. The nurse really began listening and became concerned wanting and hoping to get her son in today for bloods. Of course normal bloods do not show the presence of Lyme. So Mama explained how to get in contact with Armin Labs based in Germany and the steps in which are required to get the bloods sent there. We then argued the case that the GP's don't acknowledge Lyme and don't believe tests done abroad are reliable.
The nurse was concerned and we urged her to get her son checked out and she could clearly and (has seen) the effects this disease has had on myself and how poorly I now am. We told her to watch some YouTube videos and educate herself. So our weekly appointment next week will be interesting. Interesting to see if she has taken action!
I definitely believe it will be Lyme - all the symptoms add up! The fact the holiday was fishing and camping too. Her son will have been outside, amongst nature the whole time. Increasing his risk!
What upset me most was that his symptoms do sound like chronic, late stage Lyme meaning at present there is no cure and her son may now have to face a life time of treatment, steps forward and steps back. Never regaining full health. I came away feeling a little heartbroken.
Another innocent soul taken and placed into the torture chamber.
To face punishment for crimes they never committed.
Yes we have spread awareness and it is so interesting what the power of talking creates but it's hard when you are to late, to late to save people when my aim is to help you all and prevent you facing this hell.
I pray for him and hope that treatment will reverse his symptoms and heal him.
Remember- nobody is safe!!!
Even someone working in the medical industry, surrounded by doctors still had to rely on friends, family and patients to get some answers as up to know ( as what is to be expected ) her son has been dismissed and let down.
Secondly the Mighty.com have punished my piece I wrote last week about how the GP'S let us down and I wanted to share it with you today.
“You are crazy! You are a 23-year-old girl who clearly is making symptoms up for attention. You lack knowledge and understanding about what it really means to struggle with a chronic disease and illness.”
The doctors who say this fail to see I don’t have the magic ability to change my test results. I can’t wave a magic wand to allow damaging bacteria to house themselves within my body, within my major organs simply because I wanted a hug. No. The doctors fail to realize that nobody who is chronically ill asked for this to happen to them. I know deep down they know that.
Many who are chronically sick were successful, high-flyers and dream-chasers. They aren’t people who like to sit on their bums all day, binge-watching series and making excuses not to go to work. They push themselves, wanting and expecting more from themselves and their bodies. Living in denial of their deteriorating health. People around them don’t realize how unwell they truly are because they are lying to themselves and those around them in an attempt to keep going, succeeding and keeping hold of the person they are/were and worked so hard to be.
We go to endless numbers of doctors, specialists and consultants to work out what the hell is going on in the body we rely on and expect to support us. Why now is it fighting against us? We eat healthily, we take our vitamins, we stay as active as we can, we rarely drink and we live a balanced life. So what’s going wrong?
We have a symptom list longer than your weekly shopping list. Yet many common symptoms overlap with other illnesses, often leading to misdiagnosis, mistreatment and years of being dismissed.
You are sent to psychiatrists because it must be “all in your head.” Your symptoms change daily and you are only getting worse, not better, with anything they suggest (or don’t suggest). It is far easier to call us “crazy” than spend the money, time and out-of-area referrals to actually try to get to the bottom of the problem.
You are never examined properly, almost like the doctors are avoiding finding something they could treat because then they can’t call you “crazy.” With Lyme especially, we may have to go abroad to get the significant test. I think Public Health England knows this and discards results as being “money-making,” not offering any help or advice. I feel like this ignorance is then passed down throughout the public health industry and we are shut out. Left in the dark.
Now we must fight back. We know our conditions are complex. With Lyme comes co-infections and a cocktail of other dangerous viruses. This means treating patients has to be tailored individually and treatment is most likely lifelong and ongoing. This is alarming to the health industry that runs on budgets and relies on their medical books to give them all the answers they need. They aren’t used to dealing with patients on an individual basis; they don’t have the money and they are already overrun, which I truly do appreciate. So why won’t they allow us to seek treatment where we can get it? Why do they have to become awkward and fight us over the care we are receiving and is helping us?
We all deserve health. It is a basic right. They should be pleased when we finally, after years, receive a diagnosis and are being treated – which is being funded by ourselves. We aren’t being a strain on them and their resources. They should be happy for us and relieved for themselves.
Yes, it is a huge, huge strain on the patient financially to receive the treatment they need. Frankly, if we were just “attention-seeking,” would we really put ourselves under this amount of strain, go through so much and pick a disease (frankly) even I didn’t know existed or to what extent of how dangerous it was before being diagnosed? I don’t think so!
So why should our characters be judged? None of us are bad people. We have tried to live the best life we can and make something from our abilities and talents.
Now our bodies seem to be on a mission to destroy themselves, but when we ask for help from the people who are trained and have committed to a career in public health care, we are given the cold shoulder and left out in the cold. This is upsetting, and for many struggling, this is the end of the road. They can’t afford treatment and they begin to believe it’s “all in their head,” causing them to accept this label or hide away, continuing to struggle.
The people we go to to save us are causing us to struggle even more.
How has this happened?
How can we prevent this? This is our time to start raising our voices so they can no longer silence us and put us in the corner.
We need more research, better testing and better treatments. We have to be our own heroes now and save our own lives. Our hard work and fight to be heard and listened to will help future generations. That has to be our number one motivation. To improve the future, and help future generations not struggle in the ways we have.
We can all appreciate the immense strain the health industry as a whole is under, and through fighting for our own health and causes, I hope we can help the health industry to get a hold, gain knowledge and learn more about these rare, chronic diseases so they can nip them in the bud or research effective treatment options to avoid future devastation!
We are far from “crazy.” We are warriors who will continue to fight. The public health industry can try to stop us from receiving the treatment we need, but we are our own people. We have a voice and a right. Nobody can take those rights away from us.
Keep fighting, keep raising awareness and come back fighting fit.
We must continue to fight and be strong.
We will see in the next few days if my liver is well enough to continue my treatments.
With my 34 injections in my head for my migraines on Friday and re-starting the treatment ASAP I have to prepare myself for heightened pain levels and symptoms. A daunting thought when at present I am already struggling though I shouldn't doubt my strength. Somehow!! Somehow, God knows how sometimes I always power and pull through.
Luckily my friends are coming once again especially to see me and take me out to the pub quiz later this evening ( I am unsure how long I will cope ) but their support and effort just simply means the world. They adapt and include me in events I can still hack when they could go out clubbing, out for a meal, a weekend break etc so for that I a truly thankful!!
Thank you for reading my blog today.
I hope you have enjoyed it and I am hoping my next piece about self-worth the Mighty also feel is worthy of posting.
We keep fighting on and spreading the word.
Love and peace