Thursday May 30th, 2019, marks World MS Day, an opportunity for the global community to come together, share stories, and increase awareness about what living with multiple sclerosis (MS) is really like.
The sun is shining, and I can see blue sky outside, so let’s start with the positives.
I might have retired early but now have time to write more fiction – and at my own speed. Fewer deadlines mean less stress.
I get to spend more time with my wife, our dogs and cats, and with my stepfamily. Some family even help us around the house and garden.
My MS symptoms are sporadic and, in some ways, less severe than for others with MS or other chronic diseases. Much of the time, I can ignore them and attempt to get a few things done – like writing and chilling.
I can stay up late – playing computer games – and stay in bed without having to go to work. My schedule and not some magazine’s or newspaper’s.
However, I can’t ignore the invisible nature of MS – even if many do. I’m in a wheelchair so no longer invisible – just an obstacle blocking the aisle or sidewalk. But I wish people would realise my brain still works – well, most of the time but in weird ways.
MS creates a brain fog. I struggle with thoughts, finding my words – lost or jumbled. Thinking can be as hit or miss as writing or speaking. I stumble through this confusion and fall often.
Falling is a fear extending to the physical. When I walked, I stumbled and fell. Now, when I transfer to and from my wheelchair, the danger has changed – somewhat. I still hit the floor hard though. And my wife can’t pick me up so has to call for help.
Is the MS my fault? The truth is none of us sufferers have MS because of some bad habit or poor lifestyle choice. Some things might trigger symptoms – like stress or noise – but there is no known cause. This strikes many different people with varying lifestyles.
I ate organic vegetarian food mostly, didn’t smoke, or drink often. My work wasn’t more stressful than some. But my health dice came up with MS – and leukaemia.
Meeting others with MS, or reading about them, made me realise our symptoms can differ – hence the ‘multiple’. The course of the disease, the speed and the intensity vary. So, our treatments are as diverse as our symptoms.
Symptoms are chronic, debilitating, and so much more intense than others understand. Fatigue strikes fast and not always when I plan to nap. This is not tired in the normal sense.
My emotions flare as well. I get angry over stupid things, from emails to computer games. And the tears flow with regular ease – from pleasure, frustration, from sadness. Intense noise grates, like dogs barking or kids screaming. Sensory overload is a daily hazard.
My internal thermostat is faulty. Most of the time I’m cold but I can overheat, especially in warm, muggy weather. Damp or humid weather don’t suit – even if I miss wet Wales. The sea breeze there dispelled the dampness.
The medical approach to MS, especially here in the US, leans heavily towards keeping the pharmaceutical companies in business, rather than a cure. Disease modifiers – not that I got those with the NHS postcode lottery – are the norm. But there isn’t an acceptable one for my secondary progressive MS. Under neither system was medical marijuana an option for me – well, not legally in Idaho.
But the medical research has brought benefits and relief to many. Those newly diagnosed have choices I didn’t. There is hope out there.
However, people still believe MS is a death sentence – it is not. We are perhaps vulnerable to other conditions as our immune system is compromised. That doesn’t mean MS will kill me. So, don’t count on inheriting yet, brother.
But it is a life sentence. Emphasis on LIFE! The inspirational people with MS tell me “there’s a lot of it to be lived after diagnosis”. I have plans and things to do – like publish the Snowdon Shadows series; and that’s four books and ideas churning.
Whatever condition gets rolled for us, we are warriors and life is precious so worth fighting for.
The Multiple Sclerosis International Federation (MSIF) is encouraging family members, caregivers, and patients affected by multiple sclerosis to participate in World MS Day today. Each year, MSIF, which now includes dozens of MS organizations worldwide, launches a campaign focused on a different theme to mark the day. This year’s theme is Visibility. Called “My Invisible MS” (#MyInvisibleMS), the 2019 campaign is geared toward raising awareness of the invisible symptoms of MS, and their hidden impact on the quality of life of MS patients, their family members, and caregivers.
Other Multiple Sclerosis links for today:
MS On My Mind https://www.msisonmymind.com/what-is-ms-on-my-mind