Lifestyle Modifications……What Does That Mean?

Yolanda, a pharmacist who has been diagnosed with MS and blogs at The Patient RPh(Pharmacist) has written this brilliant guest post:

As pharmacists, we learn about medication and non-medication (non-pharm) treatment. Non-pharm treatments include the important but elusive category of “lifestyle modifications”. While I am in favor of non-pharm treatments, I cringe every time I hear one of my students say that are going to tell a patient to do “lifestyle modifications”. Why? I find that students think that lifestyle modifications are the same for every person, are easy to do, and that a patient will automatically know what you are talking about. So, when students would recommend “lifestyle modifications”, I ask “which lifestyle modifications would you like the patient to make?” Usually, they weren’t sure.

When I was diagnosed with MS, my doctor told me that I needed to make what lifestyle modifications. My pharmacy brain went into high gear thinking about ways I could change my lifestyle so that I could keep symptoms at bay and preserve my energy. My patient brain…not so much. I could hear my patient brain saying “wait, I have to change my life even more? I don’t need to make any more changes. What lifestyle modifications do you make with MS anyway?” At the moment, neither brain was listening to the other.

Then I remembered what I asked my pharmacy students. “Which lifestyle modification would you like the patient to make?” To truly answer this, the student would have to talk to the patient to learn about their lifestyle. After this, they could work with the patient to tailor lifestyle modifications to the patient’s life. I realized had to do this to myself.

Now, I didn’t have a verbal conversation with myself (but if you did, no judgement here!), but I did think about my current lifestyle practices and asked if they helped to keep my MS symptoms at bay or if it preserved my energy. I learned that my current lifestyle practices were pretty good, but I could benefit from some small adjustments. For example, I know that getting enough sleep is important for me. My sleep habits were ok, but could be better. Therefore, my first lifestyle modification was to set a 9pm bedtime and to get 8 hours of sleep every night, including weekends. Another lifestyle modification I made was with my diet. I realized that while it was already pretty healthy, it could benefit from more vegetables. So, lifestyle modification #2, add more vegetables in my diet.

As you can see, “lifestyle modifications” is not a term that means the same for everyone. My pharmacy brain knew that, and my patient brain realized that “lifestyle modifications” can be manageable. Have you been told to make “lifestyle modifications”? If so, which ones have you made?

Endings and Beginnings

The last 20 months have been the hardest and most painful in my life.

Losing first my brother then my mum within 18 months, and with a global pandemic rearing its ugly head in between has been challenging on every single level. At times it felt as if my entire world had brutally shifted on its axis.

Life changed beyond all recognition. I made the decision to come off all my MS symptom medication (I took advice from my wonderful neurologist, but decided to go cold turkey – I was in such an enormous amount of pain, what was a little more?)

Just as I was thinking about reconnecting with the world last March, it started to shut down. It seemed cruel and ironically similar to the first years of living with MS; an inaccessible world, yet this time everyone was going through the same emotions and fears, shut at home with no idea of when we could all be together again and live life as it was meant to be lived.

We all felt disconnected and yet in ways more connected than ever. My son moved back home for six months, continuing his university studies and starting work for the NHS. We bonded in a whole new way, living as two adults in a small cottage, keeping each other buoyed up as the pandemic played out. We adapted, shared our frustrations, found new ways to get through each day.

And that’s what life came down to in the end, putting one foot in front of the other, and if we made it to the end of the day having done nothing else than get through it, that was an accomplishment in itself. We grew and learned together and looking back on it, we have come through it stronger as our little team of two.

There is no easy way to deal with grief, but taking joy in small moments helps – snowdrops blossoming, an unexpected gift dropping through the letterbox, sitting outside with a coffee watching the clouds pass.

There are tendrils of new beginnings; picking up work and studies again, reconnecting with family and friends on a deeper level, the start of a new relationship.

Right now, I am still in the each day at a time stage, but as each day passes, it gets a little easier.

Tagged , ,

My MS Story: Finding a Way Back to Me

This is guest blog post by Jen DeTracey. She runs the wonderful blog, Women Thriving with MS  – well worth checking out!

It’s been over 10 years since I was diagnosed with MS.

Ironically, on the anniversary, I didn’t think about it. I realized a few days later it had passed unnoticed. This was a huge celebration for me.

I realized MS is just a part of me, not who I am. I learned this many years ago while in therapy to deal head-on with my anger and grief. What showed up most for me was FEAR.

At age 44, I was at the peak of my career as a business consultant when MS showed up for a curtain call. After four days in the hospital, three days of steroid drip, I was sent home. Left hand, leg, and mouth were now in working order but I was slammed with fatigue.

I started asking myself painful questions. Who am I now? What is important to me now? Will I ever be able to work again? Truthfully, I felt like I was dying. Logically, I knew I wasn’t but the grief was all-consuming. Part of me wanted to die.

I knew I needed to shift my focus to something I’d always wanted to do but hadn’t. My heart-centered goal was to self-publish a book for small business owners.

This goal became my anchor. It took twice as long as I had projected due to a massive vertigo relapse, but I did it. It was a very special day when I hosted my book opening at a local café. Friends and colleagues joined me to celebrate. Doing this project saved me.

So many people with MS have to give up their careers. I thought that would be me, too. I decided to continue working just part-time. I also did a lot of soul-searching and attended silent retreats. This gave me clarity on how I could serve others.

Two years ago, I started a private Facebook group, Twitter account, and YouTube Channel — Women Thriving with MS. I had a vision at one of my silent retreats to create an online community for women with MS who no longer work. Since then, I’ve hosted virtual gatherings and met so many amazing women.

Figuring out what is most important, then making it happen while living with MS and fatigue has been healing.

Twitter
@WomenThrivingMS
Tagged , , ,

A Year of Eternity

Grief is retracing the steps of this time last year.

That year is almost over and then it will be another year, as that particular day ticks over.

Utterly unfathomable in its ridiculousness.

A whole year without them? It’s preposterous.

That a person so vibrant, so full of life and so mindful and caring of others is no longer here is beyond reason. In amongst this year’s illnesses, birthday celebrations, small daily triumphs, even a pandemic, there is always grief.

I would like to say it gets easier, and yes, the raw, visceral grief of losing a sibling lessens its grip, but it is pushed deeper within and takes up residence.

I know the paintings he liked in my house, the coffee pot we had our last cup from, the table we sat at this time last year. I remember the plans we shared and were excited about and our last hug and farewell, although I didn’t know it then. The jokes, the laughing.

I miss him and I don’t think that will ever end.

How could it when we shared so many experiences no child or partner will ever share.

It has been a long and painful year since that day, and there will be many more to come. But we will smile when we talk about him, and laugh when we share stories and anecdotes. And that is how we will get through the next year.

Tagged

The Teenager

MS crashed into our lives in 2011, just as The Teenager was starting High School.

Unusually for MS, it came without warning – just a huge, life-altering Big Bang over the course of a weekend when my entire body collapsed inside, my mind scattered in all directions and my very being imploded; I couldn’t walk, talk or function.

For better or worse, my son was with me, all through the endless search for answers, the waiting, the eventual diagnosis, an employment tribunal, three courses of Alemtuzumab and their brutal after-effects, ongoing treatment and figuring his own way through life.

It was a learning curve for both of us, navigating entirely new scenarios, but we hadn’t envisaged this.

I went downhill, both in health and my mental state. One evening, I took him to a neighbour as I couldn’t cope. That was the day I decided to pick myself up and do something different and fight my corner after over a year of work-place bullying – to deal with a potential court case on top of Alemtuzumab was daunting.

We did it and I took him to Manhattan with the tiny pay-out, eager to show him where I had lived for a couple of years to make up for, well, everything; to show him that I had experienced a life he too could have – the possibility of travel and adventure.

He had missed out on having his mum on the rugby sidelines, the parents evenings when a friend would go in my place, the trips to the seaside I couldn’t take him to, but I was always there to hear his trials and tribulations, even when I was struggling to cut vegetables or clean the house. We managed. I slept as much as I could when he wasn’t there, attuned to his key in the lock, sitting up quickly and hiding the blanket.

He’s been a huge part of my blog, with his consent, and even now as he approaches 21 this week, he’s proud. Proud of all we have achieved together, our little family of 2 – sure, we’ve had our low points and arguments, slamming the fridge, the front door, the usual teenager nightmares. Yet, without him, there would be no blog, no book and I certainly wouldn’t be taking a PhD.

After that low point, I had two choices.

Give in and accept whatever came my way or stand up and fight back. As with so many health scenarios, we fought back. He came to protest marches, meetings, film-making, speaking on camera about his life as a child of someone with MS and many, many other things.

This week, The Teenager turns 21, a real milestone for parents.

I’m incredibly proud of him and how he has grown into a confidant, articulate and compassionate adult. He stepped up to the pandemic, moving back from University in March and taking a job at the biggest hospital in Wales for three months, before moving on to our building sites.

Now he is back in his University town, ready to celebrate his birthday, and I will take time out to think about how lucky I am to have a son like him.

Tagged ,