I asked my husband, Michael, to write an article about what it is like to be the spouse of a Fibromyalgia sufferer. This is his story. I am forever grateful to him for doing this. I truly hope that this story will be able to help other spouses/partners support their loved ones better.
Should you wish to connect with Michael, you can follow him on his Instagram account.
Hello, I’m Angelique’s husband, Michael. We first met at college around 1992 but were both seeing other people. When we finished college, we didn’t bump into each other for 10 years. In December 2002 I was about to become newly divorced and was working hard to keep myself busy. A colleague and I decided to meetup for a few drinks at a pub. At the pub we were seated on a balcony where there were only 2 other patrons – both beautiful women – one of whom seemed familiar…
After glancing at one another every so often, wondering where we knew each other from, my colleague and I struck up a conversation with them. Angelique and I figured out quickly where we had met before. Needless to say we fell rapidly in love and started dating. Fast forward a few years, we’d had a baby, a failed business, and had dealt with tons of stress. Angelique developed an issue with her gall bladder and needed emergency surgery to remove it.
Post-surgery, she recovered well apart from some terrible pains in her back and shoulders which took a few days to dissipate. The pain and spasms in her neck, shoulders and back kept re-occurring periodically, her sleep patterns were also disrupted, and her doctors were baffled as to the cause of the pain. She went from being a healthy, strong, energetic and constantly busy partner, mother, and having a successful career, to someone who was forgetful, losing her bearings while travelling, often being in terrible pain and struggling to cope with the normal stresses of everyday life.
Her work required her to drive to clients and meet with company directors, government officials and other senior employees of many companies. However, this became difficult as she’d lose her way to the clients, forget where she was going or lose her bearings – even though she had been to their premises many times before. She’d also be explaining contracts, terms and conditions or financial jargon to a board room full of people and lose concentration, words or her train of thought.
I watched the progression of this debilitating disease, powerless to help ease the symptoms or give any relief besides being there for her, loving her, and supporting her. Eventually her symptoms became unbearable and after lengthy discussions and lots of planning we decided she would be better off on disability. Luckily, she did have an insurance policy whereby she could receive an income while unable to work. This wasn’t a decision we took lightly but thought it was for the best.
I often wake up in the early hours and watch as Angelique lies on the floor, writhing in agony. I’m powerless to help – except to get more painkillers, rub analgesic cream on her legs, back, shoulders and neck. I watch her get out of bed sometimes, which is a process: she sits on the edge of the bed, pauses, laboriously stands, grabs her medicine, swallows them and slowly walks off to the loo or kitchen and begins her day. Her memory is also spotty, and she forgets things. Other things like when I’m in the wrong or haven’t completed a task, those memories stay with her forever.
She constantly battles fatigue, pain, brain fog, depression and spasms – I wish I could steal them from her, even for a day or a few hours, just to give her some respite. I do admire her willpower and strength. She even went with our son and I to the trampoline arena and bounced around for a bit, however, she had back pain and spasms for days afterwards. When we went white river rafting, she came along – not much paddling was done by her whilst in my raft and we kept getting stuck. She started getting tired and couldn’t help much but was then lucky to be transferred to the guides raft. In the days before her Fibromyalgia symptoms, she would have paddled and kept going even if tired. The drive to the drop off and pickup points along the river were very bumpy and caused her to have a flare up. Our kids and I didn’t know how to handle her pained expressions and we couldn’t even imagine what she was going through at the time.
Going on holiday is a challenge too. If we must drive or fly a long distance, her body aches, her mood worsens, and tiredness sets in. Game Reserves and game drives in a big game viewing vehicle causes her some discomfort – pretty much like the rafting incident did.
Her days are mostly lonely times where she sits and does some hobby, points our helpers in the right direction, watches Netflix, reads or writes articles and responses to comments on her blog and others. This blog is like a super-hobby, it keeps her inspired, motivated and gives her a purpose – for which I’m very grateful.
When I leave for work or arrive home from work, I can sense the discomfort Angelique is experiencing and would like nothing more than to give her a big bear hug. That’s a definite no-no for FM sufferers. Even the lightest touch on some days can be misinterpreted by their nervous system as painful. The reciprocal is likely true as well: I’m sure Angelique knows when I’ve had a tough day and need and would like to squeeze me. Soft, gentle hugs and a kiss are the order of the day.
Now I count myself lucky as I am healthy and take relatively few tablets and the occasional vitamin, but Angelique has had some serious cocktails of multiple tablets over the years, sometimes I thought the doctors were using her as a guinea pig. To this day she still takes a myriad of medications for pain, inflammation, to help her sleep, restless legs, spasms, mood, fatigue and depression. I often wonder how she stomachs all those tablets. She must have the constitution of an elephant even though she weighs in around the late 50 kgs and is slender. How does her body manage to metabolise all those meds I wonder?
It is a known fact about husbands and wives of Fibromyalgia sufferers: that many of them run away when the going gets tough. I can only say that, as a FM spouse you need broad shoulders, a big heart, thick skin and you need to provide an endless stream of love, compassion, support and empathy for your loved one. Be there for them and listen to their aches and pains knowing that you can’t solve anything for them. You can only be strong for them and a shoulder to lean on.
I’m hanging in there, ever hopeful that someone in a white lab coat will discover some mechanism that will return the Fibromyalgia sufferers to their former selves, or at the very least, reduce the symptoms they endure. The symptoms which they often bear in silence, without complaint.
I have many more views to share but feel that this long article (in blog terms) is just that, long enough. I do look forward to sharing more on this subject in the coming days.
Are there any spouses out there that would like to share their story and offer advice to fellow spouses/partners?