Category Archives: 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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Life And Other Messy Things

It’s been a dreadful five months, but we need to begin to look forward.

Grief has overwhelmed me, MS has hitched a ride on the back of it and shaken me to the core and as a small family, we have to gather ourselves together and celebrate life in all it’s glory.

No one is ever forgotten, they are carried with us throughout life – my dad, who died in 1978, my brother more recently and many others in between.

The best way to honour their memory and legacy is to aspire to be the very best within our capabilities and more importantly, to do no harm.

All shocks have repercussions, good and bad; MS forced me and The Teenager to create a whole new life – new job, new mum, new identity. We got through it, wobbles along the way, but we did it. I’m happy to say that he is thriving at University and I am beyond proud of all he has achieved.

Grief, seismic shifts and time passing creates a re-evaluation – someone came back in to my life after a long absence. There is never a good time to meet anyone and people always told me it would be at the worst possible time. They were right, but it worked.

It’s not serious – they would be the first to say that – but it works, just now, for us.

I have nothing to ‘admit to’, or ‘come clean about’. It just is. I just love this person.

When you attend your sibling’s funeral, decades before you really should, life shifts and reorganises itself. What seemed important is less so, and vice versa.

Life is a continual series of lessons, the most important of which is, you never know what someone else is going through. Be kind to each other, be aware that someone so happy and vibrant is just as likely to be as depressed as the person who ‘looks depressed’.

I’ve confirmed on Twitter these last few weeks and months that I have never found it to be anything less than supportive. Perhaps I’m lucky, but having seen me through MS, The Teenager, Grief and beyond, I do think it can be a force for good.

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Writing The Wrongs

One of the best things about having a blog is encouraging others who also want to start one.

Over the years, since 2012 when I first signed up to WordPress, I’ve spoken with people all over the world about how to get started, how to keep up the momentum and just how to have a real idea about what it is they want to say – what they have to say.

Back then, in the dark old days, I wanted to express what was happening after my MS diagnosis, what I was feeling. I was disoriented, lost and experiencing an entire whirlwind of emotions. Plus, I was also being slowly bullied out of my job.

I reached out to a writer who had written a very personal account of her MS in a national newspaper, about her struggle to come to terms with a life with MS. It was raw and brutal, exactly how I felt. We communicated back and forward through emails and she encouraged me to start a blog. The rest is history. Thanks to her, I’ve gone from blog to PhD.

I always wanted to be a writer, so perhaps that is why I feel privileged to be following this path now. MS shunted me from the career I was building to a building career – I work as a project manager for a building company. The irony doesn’t escape me.

But I wanted something more. I love my job – it allows me the flexibility and creative talent to excel at what I do, but it’s not everything. It also has an end-point. My energy is limited, I fall asleep at awkward times, I trip over stray wires, I repeat stuff. Luckily, I work with my best friend who knows more about MS than anyone else.

Writing has allowed me to discuss, dissect and analyse every single niggle I’ve ever had with MS, and bringing up a Teenager throughout a life with MS. Abject loneliness has been replaced with a worldwide hug of immense proportions. You guys just … get me.

You’ve been through the ups and downs, you’ve seen The Teenager through the best and worst of times. You even took the time to send him messages of support when he was in a grim place and he read every single one with a smile on his face.

Writing is incredibly powerful and I didn’t realise that until I started. I poured out all the pent-up angst and you were with me through my epic Pity-Party-For-One.

It’s hard, baring your soul. But, you guys have shown me that it is so, so worth it.

If when I attain my PhD, you’re all invited. Without you, it wouldn’t happen.

Reach out and lift up …

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I Promised …

When I first started this blog, I promised two things:

That my blog would be honest, raw and at times, uncomfortable about life with MS. And that I wouldn’t write when there was nothing to write about.

I worry I’m reaching that point?

I am ok. The Teenager (bar recent events) is doing well.

I worry I’ll begin boring you guys with the same problems:

  • I’m still single
  • I’m still fat
  • I still trip over anything and everything
  • I am as tired as ever
  • I still worry about the future
  • And I still don’t play a musical instrument

I don’t want to repeat myself and weirdly, in writing that list above, I think, hmm, is there anything I could/should have done to change it?

Six years on, why is the list the same? And is that it?

Of course, that’s the negative list, and I’ve written about my upsides, the gratitude, my self-awareness that I’m beyond lucky to still be out and about with MS, albeit limited.

I wonder if I’m more cautious as I could be judged on what I write – I know people I would rather not read my blog read it, and maybe that makes me more hesitant to bare my soul?

I’d love to hear what you think?

Should I take my ‘Still …’ list and turn it into an action plan?

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Research Request – Can You Help?

I’ve been approached by Jowinn Chew, a first year PhD student at King’s College London, based at Guy’s Hospital, supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.

Their research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS.

They need you guys to help them out, so it would be great if you could take a little time out to get involved.

Jowinn explains what will be involved in the task:

You will be responding to statements concerning general thinking patterns and mood.

Following this, you will then move onto the main task, where you will read through a series of twelve short descriptions. Afterwards, you will then be presented with several sentences. You will be asked to rate how similar the sentences are to the original scenario.

We expect that the task will take approximately up to 40 minutes to complete.

If you’re interested, click here! And, thank you.

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