Today I would like to welcome Vicki to the blog, sharing her story as a wife to Michael who has Multiple Sclerosis. I’ve known Vicki for a little while online via the interiors community and am so honoured that she is guest posting this week. What strikes me with illness is just how different each condition is from person to person. You’ll read this and see above all else Vicki and Michael’s zest for life. As always, I’m so grateful for everyone’s commitment because it is such a personal subject to open up about. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.
We Are : Vicki, 48 & Michael, 50
Home Is: West Sussex
We Do: I’m a Business Analysis and Product Manager and Michael is an IT Development Manager
Michael and I met online in late 2006 and after some emails and phone calls we first met face to face in January 2007. I noticed his walking was a bit wobbly on the third date when he fell up the stairs in the coffee shop with a full mug of hot chocolate! We just put it down to the stairs being slippery due to the rain and carried on.
A few dates later, in spring, he slipped on a walk down by the river (remember the romantic stuff that you used to do before you were married!) – and he got covered in mud and I made him sit on carrier bags in my brand-new car!
I remember when I first introduced him to one of my closest friends and my friend commented ‘what’s wrong with his leg?’ – he noticed something was off when we were walking to the pub. Michael explained he fell and badly broke that leg some years before and we just assumed the issues were related to that. With hindsight, he believes that fall was the start of his medical concerns.
We got married in October 2009 and we still didn’t know anything was wrong at this time although his balance was getting worse and his legs were incredibly restless at night, keeping me awake. So, he went to the doctor, got a referral for a brain MRI and the week before Christmas 2009 we were given a preliminary diagnosis of Multiple Sclerosis.
After some heated discussion with my new mother in law about me receiving damaged goods (apparently as he was over 40 he was non-returnable!) we carried on with life with a smile. Three months and more invasive tests later (spinal taps being one of the tests) he was given the diagnosis of Primary Progressive MS, a form which is only 10-15% of those diagnosed. PPMS doesn’t get better, and there aren’t really any drugs to improve the condition. There’s no cure, and all he can do is get the medications that help to ease symptoms and slow progression.
The consultant told us he had a 90% chance of being in a wheelchair in 10years – we’ve just passed the 10-year anniversary of diagnosis and this has come true. In fact, he started to use a chair about 5 years in, for longer journeys outside of the house, but this has now become a permanent state. The last couple of years when he was walking on crutches he ended up with many falls, stitches, head injuries and a shoulder dislocation.
He went from walking, to using a stick, to using crutches, to the wheelchair and now he uses an electrical power pack for the chair for longer journeys outside the house.
Multiple Sclerosis has a wide range of symptoms, no two people will have the same experience or prognosis. Michael’s symptoms include foot drop (ie unable to lift the foot from the floor), clonus (uncontrollable shaking of the leg), restless legs at night (like he’s doing the Riverdance!), spasticity (extreme stiffness in the limbs meaning he can’t move or bend them). He also occasionally suffers bladder or bowel issues, people with MS can’t hold it until a toilet is found. He can’t stand unsupported and is now unable to walk more than a couple of steps.
We count ourselves lucky that he can still work, (he’s an IT Development Manager) and we still travel with the wheelchair in tow. We’ve been all over the world, and we will continue to travel as far as we can before it becomes too challenging. We do have to be careful when travelling though as the heat impacts his MS terribly and many countries won’t allow his medications in as they are controlled substances.
We married when I was 38 and he was 40. We never talked about children, but we did ask the consultant about whether MS can be carried to a child. We were told there’s a low chance that it can be carried, and I think at that point we had decided to not have children. My fate as eventual permanent carer was sealed and I didn’t think dealing with a child and a disabled husband and try to work and bring money in was something I wanted to deal with. So, we never had children and I with my age fast approaching 49 now, it’s past the point of no return!
Following the diagnosis, we noticed Michael’s friends of twenty years and more started to disappear. He texts them now and then, and suggests a meeting but we never hear back. Same with his long-term work colleagues, they are all homeworkers now after the office was closed, and despite sitting next to these people for 25 years he hasn’t heard from some of them for over a year. Out of sight, out of mind.
Some people don’t quite know how to deal with his condition, I remember his brother went into full meltdown as he witnessed Michael dislocate his shoulder. For the most part, our closest friends and family are very good, helpful when we need it.
They don’t always understand that Michael and I have a routine for picking him up and that can result in a few swear words being exchanged. I often have to pick Michael up off the floor if he’s slipped in between the chair and the toilet, or if he slipped after the shower – we have a way to do it, and he trusts me. I find it difficult to relinquish responsibility for picking him up or for someone else to take over those duties.
It’s difficult to visit friend’s houses – if there’s no downstairs toilet it means physically lifting him up the stairs, but without a grab rail he then can’t stand and use the loo. Some of our friend’s houses aren’t wheelchair accessible, they have steps in and out of the kitchen or there are too many steps to get into the house. This means we don’t always get out to their houses as much as we would like.
Things move very slowly with us and we’ve learned to live with that. It takes him 90minutes to 2hours to wake up, do morning stretches, shower, shave and get dressed. It’s also 10 minutes to get him out of the house in to the car on the drive, longer if he’s on his own.
I do find it difficult sometimes. People rarely ask how I am. People always ask how he is first. I understand that, but it can be terribly hard for me sometimes! I’m just as affected by his condition, albeit in a different way. I get worried when he goes somewhere in the car by himself, if I go away with my best mate for a girl’s weekend, he has to text me when he’s safely in bed, when he’s safely up and showered and to keep me updated through the day how he’s doing. I’m on permanent alert for him calling for help.
What does the future hold? For him, the condition will continue to deteriorate. No doubt we will need further adaptations to the house and at some point, he will have to give up work, we’re hoping he can work for another 10 years. I hope I’ll be able to find a job that allows me to work at home so I can care for him and continue to earn money, the mortgage has to be paid!
I’ve started a blog to document our home and to find and share inspiration on accessible and inclusive design. My blog is at www.wheelchichome.com and I also run an Instagram account called @InclusiveChic where we share home and design ideas for people with disabilities.
This year we have a cruise trip to Norway planned and most likely a trip to Houston so he can visit one of his top bucket list items, NASA Mission Control! We will keep travelling as far and wide as we can and we will keep on rolling. It’s all we can do!
Thank you so so much to Vicki for sharing her honest story as a guest poster and sharing her thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Vicki’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.