Interview with Kirsten (My Friend with MS)

Hi Kirsten,

First off thank you for taking the time to get involved in this interview for my readers.

We have known each other for over 20 years now as you married my good friend Chris from secondary school.

Although the last 10 years or so we have rarely met up when we do it’s truly like old times and it’s a lot of fun with many jokes normally at our own expense.

Your lifestyle has dramatically changed from the last time we met up 3 years ago.

Meeting up this week in Bournemouth and hearing your story first hand was truly shocking, and yet incredibly inspiring. Your story is one that I would really like my readers to know, so I thought I would interview you on my blog.

I know you’re one tough woman and so hope these questions are not too emotive for you. So, thanks again Kirsten – let’s jump straight into this with my first question.

One normal Friday afternoon around 3 years ago (when exactly?), your life was about to change literally overnight. Can you briefly describe what happened?

The morning started with me doing the wifey duties lol …and not that kind of wifey duty!!! …I'm not a morning girl 😉 !!!…

The walk to the loo felt a little odd and the walk into the kitchen was stranger still.

I cooked our slimming world style breakfast fry up …it was the way we started every day because we had managed to lose about 2 stones each and were (and I think Chris would agree) the best we had felt since our teens.

We were healthy active and (I will add) sexy…no love handles insight, firm arse and a constant, healthy happy glow !!!) [Who had the firm arse, Chris? – Adam]

On calling the family to the table to eat I decided I felt odd enough to share the strange sensations with Chris.

The rolling of the eyes and the flippant short response left me shrugging off the questioning thoughts it was Friday and we all had busy days ahead, but the drive to school didn’t really register, driving on autopilot, but with a slower reaction to brake. I was a little concerned, to be honest.

On my return, I called our doctor’s surgery and after a chat with the receptionist, I was to expect a call back from a doctor. Sure enough at 11 am the call came. I was perming at the time and wouldn’t let the doctor talk me into a blue light ride to our local hospital (apparently the pins and needles in my legs and arms and the dropping of all sorts of things and afoot that wouldn’t cooperate meant he suspected a stroke …

Well, I had no time for a stroke!!!

4 pm was the agreed time for me to attend a check-up with another doctor and that’s when my world began to crumble. By 5 pm I was walking through the doors to the acute admissions ward and I left in a wheelchair 10 days later with a semi paralysis down my entire right side.

My saving grace was that initially it was a suspected brain tumor and that would have left me fighting for my life.

I must admit I didn’t know much about Multiple Sclerosis (MS) before we recently met, I had to do a little bit of online searching. Can you briefly describe what it’s like living with MS each day?

Well, that’s a tough question to answer because every day can be different … for me MS is challenging and frightening. It's consuming and painful and very confusing. It is also upsetting, degrading, embarrassing, and damn right ugly.

I guess without listing my personal ailments MS is undoubtedly the life-changer I didn’t see coming. I live in fear as MS bites at me heals bringing with it when it strikes, destruction, pain, and a bucket full of sadness.

You used to be a popular hairstylist in Bournemouth, with a loyal customer base. I know it was hard, but unfortunately, you had to stop the business. So, how do you spend your time now?

I remember those days so fondly and I really miss my clients and the friendships I had made. The hugs, crazy laughter, and wise words we continuously shared made my working days incredibly rewarding and very enjoyable.

I spent many happy hours in my cabin ….but now …well I flit from craft to craft because I think what I attempt looks easy but what I achieve is a pile of utter c**p and I am trying my hand at blogging, something that I started after writing a book about my life’s journey so far….( not published btw if you think you might be interested in supporting me !!)

I swim with my auntie at our local pool and often in warmer months out in the sea we have even been seen in the rivers a few times, something my auntie tells me is very good for us, and she’s very right!! It’s good for the soul as well as my body.

But the best thing I do is cuddle with a cutie pie by the name of Cody. For every cloud, there is a silver lining and Cody sure is that silver lining.

On my daughter's 22nd birthday I was honored to witness the birth to our first grandchild. I am known as Nanna K and Cody along with his mummy fills my days with purpose, smiles, and oodles of giggles. I love that I can give my time freely to them both, MS was a blessing in disguise because the constraints of our mortgage payments and the living costs rising I would never have been able to have afforded to cut back my working hours to spend time with them both.

Do you follow a recommended diet or health routine; does it help?

Goodness …well what haven’t I tried!!

My friends and FB followers will have witnessed me wild foraging recently (my latest trend !!) But joking aside researching what is good and bad for us MS warriors (note that I said warriors, not sufferers) is by no means an easy feat.

So many do’s and don’ts and a wonderfully hefty price tag on eating healthy (which isn’t helpful when you have lost one entire wage packet due to ill health), but I do eat a lot of liver because of Iron is good for me. I also eat a lot of salmon and a huge portion of fruit and veg.

My diet isn’t so carb-heavy either these days because I have problems with my swallowing and my bowels and I try hard to stay clear of all things comfortable.

Oh, how I miss sharing bags of sweeties all to myself!!

I have to think carefully … eating the wrong foods whether we are well or poorly is not what we should be doing to ourselves. It’s a bit like putting the wrong fuel into your car … guaranteed we will find you spluttering along quickly becoming sluggish and eventually stopping completely … healthy is the way forward.

I just wish I had realized how precious life actually is and how complex our bodies are. Heaven knows I had witnessed illness and loss at a very young age so I should have known better. You see It wouldn’t ever happen to me.

Hmmmmm I wish I hadn’t abused myself in the way I did. But hindsight is a wonderful thing…

When personal circumstances change so much, sometimes not everyone is around for the ride. Have you noticed changes in family and friends?

This has been interesting … on the whole I have been hugely supported and loved by many with numerous avenues of communication used … face to face visits … trips out for cake phone calls, emails, and good old Facebook.

Facebook was my window out into the world and a place where I could share my story with those who wanted to follow my progress.

Some people did what they thought they should, but the attention towards me dwindled away very quickly, and that is fine.

Some people fought for my attention but soon got bored because I wasn’t the girl I used to be and couldn’t offer them what I used to give back to them.

I mean no malice or hurt with these words it is just what it is .. Circumstances and passing time change many things.

There have been people who I would have put up there at the top of the list of very much needed supporters especially at the beginning as my needs were complex, yet they never showed. We had to create a tag team of people that could see to my needs for every passing hour for the first 2 weeks followed by a further 8 weeks where I was unsafe to leave unattended.

I was blessed to have people prepping meals, running Tom (our son) backward and forwards to school, covering housework, washing, shopping, and on top of that tending to my personal care needs and chaperoning me to numerous hospitals appointments.

Those people who for their own reasons steered well clear of the unfolding drama that my family and I entailed have taught me over time not to take things personally … I didn’t have the energy (and still do not) to pick apart or hold onto the feelings of being responsible for whatever drove their chosen behaviors.

Since I have known you and Chris you have been fans of traveling. I often see posts on Facebook of you traveling around the UK. What are your next travel plans? Where do you want to go next?

It is my job (A distraction technique last year I believe) to plan our annual holiday and this year it will be the NC 500.

We are both very excited. Last year we had our first taste of Scotland and we fell in love with the scenery and freedom the Highlands have to offer we ended up in Scotland instead of a safari in Africa. We were celebrating our 25th wedding anniversary and a safari had been on our ‘when the kids are older and we can leave them behind’ list.

I am afraid to travel abroad now due to my symptoms and complications and to be honest, it is too expensive.

[This a shame as I was hoping you guys would visit us in Malaysia!]

We have many beautiful places to visit here in the UK and I am lucky that owning a camper van with all the comforts I need to manage my MS is a positive game changer while we can we will and when I can’t we will have many wonderful memories to draw upon.

You have set up a blog and regularly update with very frank and brutally honest posts about your life. Can you explain why you decided to write so openly and how this has affected your life?

Writing has been what has kept me sane, to be honest. We all keep a stiff upper lip us British folk. On the outside, we have everything in order, a happy family, stable finances, a great job, nice house but on the inside, many of us have tortured souls. But goodness knows why we keep a stiff upper lip it doesn’t bode well for our own peace.

Prior to my diagnosis, I had spent a lot of time and energy trying to work out, or perhaps heal is a better word to use because I was desperate to remove deep-rooted trauma from the death of my mother aged 10 years old. I had experienced grief in a way no child should and had never been given the chance to grieve properly. This caused me years of anguish, heartache, and confusion.

Writing has helped me sort out the mess in my head I guess …and I had nearly put a full stop at the end of my story when MS happened to me … I wasn’t able to close my book!!!

Typical hey… Guess we can never stop learning whilst we are living, and I guess that is what life is all about right???

You’re an incredibly upbeat person, a real inspiration to anyone with MS, actually to anyone. With your change in lifestyle, what are your goals for the next few years?

Well, I put on that 2 stone I spoke about earlier in this interview so I’m currently working on shifting that. I am now holding a monthly group called Mindful Souls (do you like the play on MS) where coffee and cake around my kitchen table, a mindful moment, and a simple craft is bringing people together to raise money for our local MS center so hopefully, that will continue to grow and for as long as I find inspiration to share with others.

I will keep going and I will be watching the seasons change…I am blessed to have been given the chance to slow down and watch the world turn.

I will keep my weird kinda all rolled into one faith and that knowledge with confidence that my path has already been made for me and that all I am meant to learn pleasant or cruel is for me to absorb.

I choose to now keep my eyes and ears open to everything for life is not meant to be torture but more time to learn about yourself others and our beautiful universe it's a time to grow.

I choose to see light in the darkness and I choose to keep going until the time for me to part arrives ……