Who would have thought completing a Personal Independence Payment (PIP) application form could be so emotive? Currently reeling from the depth of feeling I am stirring up I feel compelled to scribble down my ramblings in an attempt to find some clarity.
Up until now I thought I was handling life okay, taking control of the horrible situation we have found ourselves in but plodding along with the extra challenges. Yet I appear to have opened a can of worms, my usual strong and resilient self has been truly shaken, revealing an unexpectedly crushed and bereft self beneath. Putting pen to paper has forced me to look back, to reflect on where we once were, highlighting the cruel realisation of where we are now.
I have produced a brutal insight in to how this disease has destroyed my once happy, fit, gregarious, hard working, loving, ambitious and beautiful husband. In turn, it has also brought home the impact this roller-coaster ride has had on me, our 4 year old daughter and families and friends.
When I met my care-free husband he was known as the joker, the funny guy, the life and soul of any gathering with a huge heart and lust for life. He adored being the centre of attention and found any excuse to meet up with friends and family. Always a loyal family man with a focus to work hard and enjoy all he did, his passion had stamina and was infectious.
We married in Perthshire in Scotland in 2008 where we re-visited every year until recently. In October 2014 he was bitten by a tick. As there was no sign of a bull’s-eye rash we didn’t think any more of it. Although it has taken us years to make the connection, my husband’s health started to deteriorate from around that day on. He diligently requested medical help from the start. However, it quickly became clear he wasn’t getting anywhere despite his
worsening symptoms and persistent pleas for help.
I am still struggling to comprehend how no one in the medical profession took either of us seriously despite our many desperate attempts, his drastic weight loss and his inability to stand and string 2 words together during many of his appointments. Among numerous nuggets of wisdom he was advised to take up regular exercise (despite having a physical job where he often ‘exercised’ for over 12 hours a day). He was also told to take Rescue Remedy and drink herbal tea to help his heart palpitations and overall health.
He was sent down the mental health route numerous times, despite raising concerns that his flare-ups were never prompted by stress, anxiety or any other identifiable factors. His escalating symptoms always struck without rhyme or reason but no one listened. He explained he suspected a neurological (physical) trigger but the same mental health options continued to be his only route. He agreed time and time again to follow the given advice in the vain hope a different line of investigation would eventually be offered.
During a particularly bad flare-up I was petrified and was astonished when my husband agreed to visit A&E. I delivered him to the entrance, watching as he staggered and stumbled, swamped by a huge winter coat to keep warm and to hide behind, despite it being mid summer. I prayed someone would finally take him seriously but alas, a few hours later he re-appeared, clasping a piece of paper telling him when a trip to A&E was appropriate and when to call his GP. He was beyond broken. I was completely devastated.
This has been a long, painful and frustrating journey. My husband was seen by a private neurologist after reading on his medical records Multiple Sclerosis had been suspected but never discussed. Thankfully the Neurologist ruled this out, along with Chronic Migraine, then Lyme Disease after prescribed antibiotics had no effect. He was then referred to a rheumatologist who ruled out Fibromyalgia. Thereafter, he was seen by a Physiotherapist but because his pain was migratory (it moves around his body indiscriminately), no relief or solution could be offered. We finally paid for a private MRI scan which showed nothing of concern.
As a clear last resort a referral to a Pain Clinic was suggested (with a 2 year waiting list). However, without a diagnosis we both felt uncomfortable attempting to manage pain without knowing the cause. Because his GP had shown an unacceptable lack of interest, concern or empathy and had made my husband feel like a time-waster, he gave up trying to seek further help. He has since battled on, trying to work when he can but these windows of opportunity are getting smaller. Even his good days are now becoming affected by his condition.
From a personal point of view I am terrified. I can set off in the morning, leaving my husband looking ‘normal’ and happy. On my return, the visual change can be stark and distressing. His whole persona and appearance can be horrifying. He looks ‘possessed’, ‘haunted’, like an entirely different person. His eyes are ‘dead’, he just isn’t there. His skin is grey, his face is haggard and his posture is that of a very elderly and infirm pensioner. He is angry, paranoid and short tempered (if he can even speak at all). He struggles to stand and will regularly lose his balance. He has lost all his confidence and has become uncharacteristically introverted. Being disbelieved and shunned by the NHS for 9 years alone has had a massive impact on him and his self belief.
By trade my husband is a Heritage Builder so has always been fit and healthy and has looked after himself. However, his rapid weight loss and muscle wastage is clear for anyone to see. Recently he noticed the glands behind his ears were swollen, another Lyme indicator. We both had an epiphany, his many (disconnected) symptoms were an exact replica of the list of Lyme Disease symptoms (despite it previously being ruled
After much research and a private appointment with a Lyme Literate Practitioner it was confirmed my husband has Post-Treatment Lyme Disease Syndrome.
We are currently awaiting blood results from Germany to clarify what infections and co-infections he may have. Because the disease has been left untreated for so long we have been advised he will never fully recover.
I frequently sob as I drive to work, overwhelmed by the whole situation and petrified of leaving my husband alone. He talks openly about ending his life as he can no longer live with the excruciating pain. He has been made to feel a fraud and a failure. My gorgeous husband cannot handle the assumed burden he has become and genuinely believes our daughter and I would somehow be better off without him. Of course this couldn’t be further from the truth but this reflects the toxic distortions Lyme is capable of inflicting. I have walked this path with him, been through the highs and lows with him, sharing his incredible pain. I have endured his torment, the frustrations and the sheer helplessness.
Our financial situation is now desperate as I try to support us all on my meagre part time wage. I am unsure how the blood results will help as we simply can not afford to live, never mind pay for private medication. What on earth are families like ours meant to do?
Our worlds, once full of light and laughter, are now stifled by darkness and insecurities. In time we will find new dreams, goals and ambitions but, until then we will take stock, reevaluate and search for freshly opened gates, ready for new life-paths to be explored.
My heart goes out to everyone who is suffering from this silent condition. I challenge anyone to walk in my shoes and then say they don’t believe Lyme exists, that the NHS should not support Lyme sufferers and to discredit my husband. I wish I could wrap my arms around all those drowning beneath the same huge ripples created by such a tiny, innocuous looking arachnid. The repercussions from this disease are immeasurably colossal.
We all need to keep fighting for treatment, investigation, compassion, knowledge and support.