May 18 2021
4 Comments
Blogging

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?

Apr 20 2021
16 Comments
Emotions

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.

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Apr 03 2021
2 Comments
Blogging

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
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Aug 18 2020
10 Comments
The Teenager

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.

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Jun 21 2020
6 Comments
Daily Life

What I’ve Learned in Lockdown

As we are slowly coming out of this strange time, have I learned anything?

My initial reaction would be no, I’ve been too fearful, too worried and too anxious.

However, I really want to stay positive, so here are the things I have enjoyed:

You find out who your friends are

This is so similar to MS – you really do. Those you thought would stick by haven’t and vice versa. I called a friend weeks ago for a catch up and am still waiting the return call. In the same way, I have had the joy of catching up with people I haven’t heard from for ages.

Your Boss takes you shopping

He sourced and told me about the quietest shops and took me to them when I couldn’t get shopping slots. Along with my younger sister, who has been leaving food for me every week since this started, I am so grateful.

You have a garden

It’s random, filled with skip-dive plants and those rescued from home renovations, but I love it. I have never appreciated it more, now that we spend so much time at home.

Your son can cook

Yup, after he was told by his Uni to go home, he has been cooking a family meal once a week, a good chance for us to catch up and chat through everything that’s happening in the world.

Your son steps up

As well as finishing his Uni year, he’s also almost completed a 12 week contract with the biggest hospital in Wales, in housekeeping. I’m truly proud of him.

You keep writing

Despite the lack of coffee shops and places to write, I have had great support, especially from Russ Gascgoine, who has been sending messages to keep my writing on track. Not only that, we have had invaluable catch ups on the phone.

You teach Creative Writing online

We have run courses through MS Society Scotland and it’s been fantastic; we have uncovered hidden talents. Plus, we are starting a book club.

You shop local

Just that, shop local, if you can. For me, they are far easier to access than supermarkets and you know you’re supporting local businesses. As more shops open on Monday, I’m looking forward to staying local.

Telephone Bookcases

These have sprung up all over Cardiff and I take a bag of books every week (I’m reading a lot right now). Brilliant innovation and long may it continue after this is over.

For all of us, Covid has been problematic. If we can keep the togetherness that has bound us together over the last three months, perhaps we can look to a brighter, more local future.

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