During Lyme Awareness Month, we’re sharing blogs that tell the different stories and experiences of Lyme disease sufferers.
This is a piece from Sherry Palmer.
She contacted Caudwell LymeCo earlier this year. She had been diagnosed with Lyme disease on the NHS, but despite a course of treatment she was still suffering symptoms. She was told by her GP and specialists that there was nothing more that could be done.
We were able to provide Sherry with the information and confidence she needed to approach her GP and get further treatment as per the NICE Guideline.
Sherry is still working on getting back to full health, and she has shared this powerful piece with us.
“This is something I wrote four years ago as a carer for someone with mental health. But re-reading it now, it could so easily apply to the journey of Lyme too.“
Here it is, adapted to chronic illness.
Crossing the Ravine
People who don’t have a loved one with chronic illness often ask me what it is like.
We all have a path to follow. Some of us have choices on which path to take. Some of us need to help our loved ones on their path, and take the risks along the way.
I used to say that chronic ill health was like a roller-coaster ride, but too many understood that to be fun. (It’s not if you are afraid of heights and can never get off!).
I now look at it as a large rickety wooden bridge that we have no choice but to cross. And whenever you think you have mastered it, another rotten plank snaps.
Professionals wonder why you are so protective of your loved ones.
When you have experienced a mix of those professionals that come jumping on the same plank as your loved one until it breaks. Or those that add heavy loads to carry and lead boots to wear. Or those professionals who seem to think it would be fun to blindfold them too and play catch me if you can.
It gets harder and harder to trust those genuine wonderful professionals that tread very carefully with their arms outstretched to help guide you past the rickety dangerous planks and take the extra weight off of your loved ones.
Sadly, every genuine professional we have met have said the same promise to us, “I am here for a long time and will not leave you, I will be the one to help you“. But then they always disappear without warning. This seems to make the rotten planks ahead even more unstable and it is easier to understand why with time you get so protective.
People who are not on the bridge ask if we can make arrangements and do things on set days “you won’t let us down now, will you?”. We never mean to let anyone down but sometimes we could be hanging off the bridge after a plank gave way and trying to struggle back up gripping on by our fingers!
Sadly, every genuine professional we have met have said the same promise to us, “I am here for a long time and will not leave you, I will be the one to help you”. But then they always disappear without warning. This seems to make the rotten planks ahead even more unstable and it is easier to understand why with time you get so protective.
We also have those great advice givers, “just keep going“. We really are trying to, but those advice givers always seem to be on solid ground!
Sometimes we need to stop and assess which way forward is best, and which planks to avoid.
Oh, and then we get those great comments like “you seemed more happy before you started to cross the bridge“. Yes, solid ground was lovely but we had no choice, we were suddenly on the bridge before we knew it, and we can only try to get to solid ground again by working really, really hard to cross it.
People say to me, “but you can get off of it at any time you like!”. But could you really leave those that you love and live for struggling on the bridge without any help?
So yes, our life has changed and yes, I am protective and yes. I struggle with my loved ones. But would I change a single thing? Yes, I would only invite those true loving professionals on the bridge and leave the others off!
Sadly, that is not in my control. And those that are our family and friends, please remember if you ever visit us on the bridge every single action or word you say can change how our loved ones step forward. We try our best every single day but some-days the only way to go forward is by stepping backwards off of a rotten plank and struggling to get around it.
Help us to help people like Sherry
We want every Lyme patient in the UK to be diagnosed, treated and cured on the NHS.
We want to increase knowledge and understanding of Lyme, to remove the stigma of the disease among the medical profession and members of the public.
We can do both of these things through our innovative research programme.
If you can, please support this vital work by making a donation of any size.