Nov 05 2013
22 Comments
Emotions

Good Grief

Cardiff-20131102-00293I think I’ve finally come to terms with having MS in my life.

It’s been a long grieving process, a period of mourning what I have lost and what will never be.

But through this grief, I’m now more aware of what is good in my life, and I’ve discovered previously-untapped inner strength. So how well did I manage the classic five stages of grief?

Denial – This. Cannot. Be. Happening. I spent a long time with this thought, lying awake night after night, gripped by an unfathomable darkness, terrified of stepping into the unknown. It was an unreal situation and I blundered through it, denial far easier than facing up to very real fears.

Anger – I had this in bucketloads, plus an unhealthy dollop of self-pity. I was angry beyond belief. Just when my life was opening up again and long-awaited opportunities were within my reach, they were going to be snatched away? Seriously?

Bargaining – I didn’t really spend any time at this stage. I knew deep down that there would be no bargaining. Rather than try to exercise more or incorporate a healthier diet in an attempt to avoid the inevitable, I veered off in the opposite direction, thinking, ‘what does it matter, the damage is already done’. I self-medicated with chocolate, wine and comfort food.

Depression – This was the longest, most soul-destroying stage. I withdrew from the world, helped along by my symptoms speeding up the process. Home became my sanctuary and my prison in equal measure. Life was interminably bleak, the days long and dark, the nights longer. And darker.

Acceptance – After the awful depression, I had a choice. Either to go under or create a new way of living. I was fed up waking up every day under a cloud of misery. Rather than focus on what was lost, I looked at what I could do. What had this whole process taught me? After facing a vortex of fear and terror, the only way to look was up. The alternative was unthinkable.

Grieving allowed me to survive this change in my life and come out more positive and stronger within myself. Change comes in many guises, mine just happened to be MS. It shook my life to its foundations, but the resulting re-building is more secure and solid than before.

And the best thing? I had overwhelming support support from you, through this blog. Thank you.

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Nov 03 2013
14 Comments
Blogging

I Choose To Laugh

Cathy ChesterCathy Chester has written a guest post on behalf of Healthline.  She’s a writer and health advocate, and writes about living with a disability during midlife at An Empowered Spirit.

The first time “it” happened I was walking as fast as I could through the Port Authority Bus Terminal in New York City.  Everyone walks very fast in Manhattan, and when you’re trying to catch a bus, they walk even faster.

They do this without looking anyone squarely in the eye. There must be an unwritten law that you aren’t allowed to look anyone in the eye if you live in the Northeastern United States.

Trying to catch my bus, I noticed my body felt very “uneven.” I would take one step and my foot would touch the ground; the next step it would not.

What was up with that?

I looked down to see I had one shoe on.  What?  Yes, one shoe off, one shoe on…(I won’t continue with that.)

I looked in back of me, and the fast walkers of Manhattan were kicking my shoe out of their way to catch their bus.

My foot was so numb I never noticed my shoe had come off.

The second time “it” happened was the following year.  I was going out to dinner with some friends to a bar/restaurant.  After waiting for our table at the bar (and one glass of wine later) we were called to our table.  Following the waiter up two short steps, I fell down. Plop.  My legs had given out.

“How many drinks did you have?” the waiter asked, smiling like I was a cheap drunk.

I could have said a lot of things, but I blurted out, “Only one.”

Not exactly clever.

The “it” I am talking about are those things that happen to us while living with Multiple Sclerosis.  Those humiliating and embarrassing day-to-day activities that happen if we fall, trip or collapse during the treadmill of our lives.  They can happen in an instant or over time, but when they happen, how will we handle it?

After 26 years of living with MS, my response to that question is to handle it with grace and humor.  After all, what are our choices?  We can either cry or laugh.

I choose to laugh.

Those of us diagnosed with an autoimmune disease end up listening to family, friends, doctors, therapists, social media and countless other well-meaning people trying to help us manage our disease.  People, in general, are more educated about MS today than they were 26 years ago.

But we still have a long way to go.

I hope we handle their education with grace and humor, while letting them know that MS is not something to laugh at, but we can still laugh at ourselves.

Today I would have told those people kicking my shoe around Port Authority that I have MS, so if it happens again they will think twice and be kind enough to tell someone they lost their shoe.

Today I would have told the waiter at the restaurant about MS, so if it happens again he would use more tact, and show more compassion.

And both times, I will continue to laugh inwardly and, outwardly, helping to spread MS awareness.

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Nov 01 2013
8 Comments
The Teenager

Proud? Oh, Yes.

The Teenager was on his way back from London in the aftermath of the storm on Monday.

It was touch and go whether he would get back on time and during the journey he sent me a long string of texts, keeping me updated minute by minute. Bless him;

Train not moving. Train moved for a minute. Train stopped. No idea where I am. Got off train. Got on another. What’s for tea?

His last text was more enigmatic – Brilliant news!!! Something amazing just happened!!

He refused to elaborate until he was safely back home, an hour late, but beaming from ear to ear. Finally, he said, ‘It was great, I was speaking to a medical student on the train and I was telling him all about MS and all about that funny treatment you had and how much better it had made you, and we had such a great conversation and I actually know an awful lot about MS, don’t I?’

Just like me, The Teenager has had a long way to go from shock to acceptance throughout the whole MS drama. He was 11 when it all started and I worried about the long-lasting impact witnessing a parent in rapidly declining health would have on him. I stood by helplessly as he cried in the bathroom or slammed his bedroom door in anger. He did not want to be consoled, he just wanted it all to stop.

At the recent MS Society awards ceremony in The Dorchester, he moved with ease through the crowd, chatting to anyone and everyone. He experienced a positive side to MS and realised that he was not alone in his new environment.

Thanks largely to Alemtuzumab treatment and a great support network, MS has not been as devastating for us as it could have been. If anything, having MS enter his life at a relatively young age has made The Teenager far more compassionate and acutely aware of the multifaceted issues surrounding disability.

However, he is still a teenager. I don’t confide my fears in him (why would I?), his life continues as normal as possible and although MS may have weakened me, I still retain my strength as a parent. And I am still more than able to nag him about the state of his bedroom, not doing his homework on time and not closing the fridge properly. Some things will never change…

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Oct 30 2013
26 Comments
Emotions

Surviving Limboland

LimbolandAccording to Dante’s Inferno, Limbo is the first circle of Hell. With good reason.

Someone emailed me last week, asking how to survive MS Limboland, that awful, terrifying period of waiting to be diagnosed.

Some of us are ‘lucky’ enough to be diagnosed relatively quickly, others wait months or years. Emailing back and forth, we came up with ways to get through MS Limboland:

  • Learn about the process of diagnosis, the McDonald criteria. This is vital to understand just why Limboland exists and how long you might spend there. Your neurologist will probably want you to meet all the criteria before giving a firm diagnosis.
  • If a suspicion of MS is raised, find out if you can have access to your local MS team, the MS nurses in particular. They are a fantastic source of support and information.
  • If you want to learn more about MS, stick to the trusted websites only, such as the MS Society, MS Trust or Shift MS. But bear in mind the forums, although monitored, are other people’s opinions and experiences.
  • Seek out support from close family and friends, but choose who you tell carefully. The last thing you want is to be more worried about how they are feeling than looking after yourself.
  • Think carefully about whether you want to disclose your possible MS diagnosis at work.
  • Be prepared for people to tell you horror stories about friends/people they know who had MS. Don’t listen! MS is unique to every single person.
  • You might have to be proactive in speeding up the diagnostic process – don’t assume you’ll sail through the system. When you have your first appointment with a neurologist, take someone with you so you don’t miss any important information.

Helping others through Limboland is important to me. I followed very few of the above points, and as a result I had a pretty miserable, lonely time.

I assumed I would be diagnosed the first time I saw my neurologist (hah!), I googled everything about MS (and frightened myself silly) and I made the mistake of confiding in (up until that point, friendly) colleagues. In reality, my diagnosis took 10 months, I since found out that no, Diet Coke did not cause my MS and my colleagues are now my ex-colleagues.

Wouldn’t it be great if there was a booklet given to everyone in Limboland outlining these points? If you think there’s anything missing from the list, please let me know.

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Oct 28 2013
6 Comments
Emotions

Every Moment Counts

blue sky thinkingCancer Research UK has launched Every Moment Counts, ‘a platform where people who have been touched by cancer can upload and share precious moments, both everyday and extraordinary’.

The idea behind it is that when you’ve experienced cancer, these moments make you suddenly hyper-aware of the here and now and of how wonderful it is to be alive. It’s sad but so often true that sometimes it takes a serious illness to remind us of this.

People like me who live with MS may not face a life-threatening diagnosis that cancer can bring, but we do have to adjust to a lifelong, degenerative and incurable illness. Life as we know it will never be the same again.

I’ve spoken to a lot of people with MS over the last two years, and we all feel that MS has made life more precious. The mundane can seem magical, we value our friends and family much more and we just seem to appreciate life in a new, more vivid way.

MS makes us stop in our tracks and take stock. What once seemed important no longer is and vice versa. The old rule book is torn up and thrown away. Although MS can appear to condemn us to a life of misery and uncertainty, it can also liberate us from old routines and destructive habits, both mentally and physically. After the obliteration of diagnosis, we can rebuild our lives in a way we choose, where we can savour precious moments so much more.

Someone told me recently that one day they just sat and watched the clouds, something she hadn’t done since she was a child. As for me, MS has made me see my life through new eyes. I’ve weathered the storm and come out the other side.

I sometimes feel like a child again, taking pleasure in the most simple things. Meeting an old friend for coffee and having enough energy to hold a conversation. A hand-written letter arriving with the post. Baking a tray of chocolate brownies with The Teenager.

Every Moment Counts is a brilliant idea, for all of us.

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