It’s not easy
I don’t understand
How can I help?
Is it even real?
What is Lyme anyway?
It’s not fair
Why me?
Why them?
I feel trapped
Should I do more?
Are they making it up?
Who can help?
I am sure that if you are reading this article, at least one of the statements above will resonate within you. I’m not here to make you feel worse. I’m here to tell you itsOK to have these thoughts and feelings. Every one of us living with someone with Lyme Disease will be able to identify with you.
Let me share my story…
I trained as a general Nurse and then went on to train as a Midwife. I worked for many years in the NHS and was confident that Doctors had the answer to almost every question and treatments for almost every disease, so when Sarah was bitten by a tick in 2014 she would be OK… right? I was not ready for the fight to get the treatment, any treatment, that would cure her. I was certainly not ready for the disappointments along the way, and also the struggle with my own feelings of inadequacy, anger, despair and utterhelplessness.
Sarah was bitten in her back garden in central London. By the time the bullseye rash appeared she was at our home in Hertfordshire. A quick google search (don’t you just love Dr Google) showed what the cause was; the treatment was antibiotics for 2 weeks and all would be fine.
That was our first hurdle. It was a weekend so Sarah went to the out of hours service where she was told it was not a bullseye rash, and it was definitely not Lyme as there is no Lyme disease in London! So no treatment at this point – just a blasé attitude from the medical profession. Surely the Doctors were right? The belief I held dear that the medical profession was always right was shaken to the core that day. Sarah came home very upset. What followed was a weeks’ long battle to get a doctor to prescribe her antibiotics. During this time, all her symptoms got worse. I eventually had to threaten legal action to get her GP in London to prescribe some doxycycline. She began taking them and the next day had come up in more rashes and her symptoms all got much worse. We took ourselves off to the A&E at the nearby hospital. This time the Doctor we saw only agreed that it could be Lyme disease and referred Sarah to the London Hospital of Tropical Medicine. To cut a long story short, and I’m sure you’ve all had similar challenges and can identify, antibiotics came too late. To top it all, Sarah was told it was all psychological and ‘in her head’ with referrals to the Mental Health team. Really?! How dare they say that? I could see what was happening to my beautiful, bubbly, funny girl. She was slowly becoming ashadow of who she was and it was all down to this little insect that bit her! In her garden in London no less!
I knew absolutely nothing about Lyme disease at this point and a quick learning curve was required.
Anger
To say that I was angry with the medical profession is an understatement. How could they just leave treatment so long that when it finally comes it is ineffective? My daughter was suffering and I did not know how to help her. I felt helpless and ill-informed. To make matters worse I felt anger at Sarah for being bitten – how unreasonable is that? I know she didn’t plan it, or even want it, but it happened. I had to dig deep to find out the reasons for this anger I was feeling. I was feeling pressured and my ‘personal’ time was slipping away fast. I became angry at myself for feeling angry at Sarah. I found myself in this ever-decreasing circle and I thought the only way to cope with that was to go into denial. What sort of mother did that make me? How could I feel like this toward my beautiful, precious daughter? By being in denial, I was in effect turning my back on my precious daughter. This had to stop, and stop it did!
Helpless
I would go to appointments with Sarah and would come away feeling helpless. The medical profession named all these diseases and conditions that could be causing her symptoms but would never attribute any of it to Lyme. I now realise that often Lyme sufferers and their families know more than most in the medical profession about this horrendous disease. We have lived with it daily and know its not ‘all in the mind’. We see our loved one unable to get out of bed, days filled with pain, the times where the darkness seems to invade everything, and hopelessness becomes part of the story too.
I would find it hard to accept that Sarah wasn’t able to come for a cup of coffee with me as she was exhausted. I wondered how much she was embellishing the situation and whether these were just excuses for not doing the things we asked of her. Stupid thoughts, right? How many of us have had those thoughts I wonder? Those thoughts were totally irrational and without cause or reason and it was only as I began to understand more about Lyme and how debilitating it was that I started to get a little understanding of how Sarah was feeling. Sarah has written a great article about Spoons. The ‘spoons’ were a eureka moment for me as I could finally understand with clarity how Sarah was affected.It helped me to become more understanding of Sarah’s energy levels and abilities to manage upcoming events and opportunities.
Frustration
We have been on this walk with Sarah now for over 4 years and in that time, we have learnt so much about Lyme and its effects on someone’s whole life;emotional, family, relationships, career. I am so frustrated that the medical profession still doesn’t know how to diagnose and treat it. We know that the blood tests often come back negative and that’s all the medical profession sees, but it isn’t the whole picture. I have also had to re-adjust my view of the medical profession and how they were failing my daughter and all of you with this disease.
Time to take it all back!
Enough was enough! There had to be some positive hopes for the future. Surely suffering like this wasn’t to be Sarah’s ‘lot’ in life.
Sarah had been looking into alternative therapies for Lyme disease. She researched herbal treatments for Lyme and then came across the study by Doug MacLean and his Rife machine. When Sarah shared her findings with her dad and myself, we finally felt a glimmer of hope for our precious daughter. We started looking at purchasing a Rife machine. Easier said than done. Firstly, trying to find a supplier in the UK or Europe was a dead end. If we found a second hand one the price was too prohibitive. We found some in the USA, but the prices were even more prohibitive that this wasn’t an option. As a family, we have always worked on the premise that if something needs doing, its probably better to do it yourself if there are no other options. Glenn, Sarah’s dad, is an aerospace engineer and he had the necessary skills to build a Rife machine and as Sarah needed one now, that is exactly what he did. That was at the beginning of 2018, and Sarah has been following her protocol for treatment. We have seen huge improvements in Sarah and can see she is on the road to recovery. We anticipate it will take 2 years to be fully Lyme free but the journey is going to be amazing!
Do you have a loved one with Lyme? Or are you struggling to get your loved ones to understand? Let us know in the comments below, or feel free to send us a message.
