Monthly Archives: April 2013

A Back-Handed Compliment

But You Look So Well‘But you look so well.’ A loaded sentence most of us with MS hear at some point.

I hear it a lot, along with ‘but I heard you were ill’. The complex nature of my, so far, mostly hidden illness.

What they don’t see is the work that goes on behind the scenes. Yes, I look fine for that hour or so. No, they don’t see me taking ages to get ready or lying on the sofa afterwards. Or the long evenings spent alone at home, too tired to go out with friends.

I’m proud that I still want to look my best, but not fitting the physical perception of the ‘sick role’ can distort the view people have of me. I’m used to it, or so I thought until Saturday.

I was at an MS meeting. At the end of it, we gathered around in groups for a coffee. I was talking to a friend when suddenly a woman I had never seen before pushed in and without any greeting, asked if I had MS.

‘Um, yes?’

She looked me up and down before saying, ‘but you look so well.’

It was the ‘but’ that threw me. She didn’t say, ‘great to see you looking so well’ or ask how long I had been diagnosed. I felt immediately guilty, as if I had to justify myself. I had always thought that I was ‘safe’ with other people with MS – no need to explain nerve pain, fatigue or the general fed-upness that goes with MS.

I told her that I had been having relapse after relapse and had been offered Campath (Alemtuzumab) treatment and touch wood, no relapses since last May.

‘Relapses? Hah. I never had any’ she said.

‘Oh. Is that good?’

‘No! I’ve just gone downhill. I have primary progressive MS. We don’t have any miracle cures. Nothing can be done for us, all the research, all the meds go on the ones with relapsing remitting MS.’

Awkward. What do you say to that? I made my excuses and wandered away. I wasn’t in the mood to be challenged. I went home deflated and upset. I did see it from her viewpoint, but it was the abruptness of the exchange that threw me. I don’t want to justify myself to other people with MS. I have to do it enough to everyone else.

I went home, dragged my duvet onto the sofa and fell asleep. 4pm and the day was over.

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Wheelchair-Unfriendly

wheelchairHow can a large object, weighing around 35 pounds, become magically invisible without asking Harry Potter? Easy – when it’s a wheelchair.

I met a friend for lunch and shopping on Friday. He just so happens to use a wheelchair. Cardiff has a fairly wheelchair-friendly city centre, with wide streets, accessible shops and restaurants and large, open spaces. That wasn’t the problem, it was the people.

To be fair, the shop assistants and waiters were lovely. We went to the Apple store (heaven for him, boring for me) and it was a breeze. Then Paperchase (heaven for me, incomprehensible to him- why would anyone need drawing pins shaped like ladybirds?) and it was great. We had a slight mishap in a cafe when my friend reversed into a table and knocked over a tray full of coffee cups, but those wheelchairs have a surprisingly wide turning circle.

What really annoyed me though, as we were stumbling/wheeling through town were the other pedestrians. It was soon apparent we were inconveniencing them by having the cheek to bring a wheelchair into town. There were tuts and sighs, doors left to slam in our faces, people shoving past us as if we weren’t there. It was impossible to walk/wheel side by side, so I took to pointing wildly at the general direction we were heading in, trying to keep track of where my friend was.

He was nonplussed. He’d seen it all before. He especially enjoyed watching people walk straight towards him engrossed in their mobile phones. He told me he’d taken to scanning metres ahead and had learned to weave in and out of the crowd, but it’s a lot harder to do when you’ve got someone else with you.

He just smiled wryly when I muttered ‘so RUDE’  and huffed and puffed at someone for the umpteenth time. It shocked me. I wish I had been braver and asked some of the people what their problem was. I like a good argument.

Accessibility for wheelchairs may have changed for the better, but attitudes still have a very, very long way to go.

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Regrets? I’ve Had A Few…

stonesI have a 90 year old friend, Tom, who’s in poor health. Yesterday, over a cup of tea, he took my hand and said, ‘Don’t end up like this. Don’t get to my age and have regrets. I know you’ve got MS, but get yourself out there.’

I asked him what he regretted, what did he wish he had done differently? He thought for a moment before saying he would have worked less, been happier and kept nothing  for ‘best’.

I went home deep in thought. On the internet, I found an excellent blog, Inspiration and Chai, written by a palliative nurse, Bronnie Ware, who cared for patients in the last 12 weeks of their lives. Her observations have been collated in a book, ‘The Top Five Regrets of the Dying.’

I expected to be depressed after reading them, but instead I felt motivated to keep on improving my life and learn from the wisdom of others who have gone before. The five most common regrets are:

  1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  2. I wish I hadn’t worked so hard.
  3. I wish I’d had the courage to express my feelings.
  4. I wish I ‘d stayed in touch with my friends.
  5. I wish that I had let myself be happier.

The last point for me was the most interesting. Bronnie Ware writes that many people did not realise until the end that happiness is a choice. They had stayed in old patterns and habits and the fear of change had them pretending to others, and themselves, that they were happy.

I want to live a fulfilled life. I have enough regrets already, so maybe I should just choose to be happier. Chase the dreams, make mistakes and pick myself back up again. At least I can say I tried. Having MS  has brought clarity and a sharp focus to my life. So, thank you, Tom, for giving me a much-needed push in the right direction.

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Beat The Heat…

ID-10019970My guest blogger today is Katie Brind’Amour. She is a Certified Health Education Specialist and freelance health and wellness writer based in America, and loves learning about natural ways to live well. She enjoys writing for Healthline.com and WomensHealthcareTopics.com:

Perhaps it’s wishful Spring thinking, or perhaps it’s the knowledge that year after year it does eventually get warmer, that makes me turn to thoughts of sun and heat. When fighting MS, however, warm weather is not all good news.

Most people with MS have something in common: myelin sheath that has taken a permanent vacation. This means your nerves are extra sensitive to temperature changes, and flare-ups can happen.

Dealing with MS When It’s HOT (or if you’re in the UK….’a tad warm’)

  1. Make the air conditioner your best friend. Hang out together all the time—whether it’s at your house or the local grocery store, mall, or movie theater. Becoming best mates means lots of quality time in a cool, comfortable climate (and less quality time feeling the burn!).
  2. Invest in ice packs. These frozen heroes can be frozen overnight and taken with you for a day trip, picnic, or even a hot car ride (if your car can’t handle your air conditioner best friend). They are super cheap and stay cold for many hours—wrap them in a towel for long-lasting cold presses. Otherwise, be old-fashioned and just run a washcloth under water to use to cool your skin during walks or outdoor time.
  3. Be cool: use water. This means drink it (cold!), swim in it, and bathe in it wisely. Add ice to beverages to keep your core a bit cooler, enjoy a cool pool for exercise, and take a cool bath. Hot water only tends to aggravate MS symptoms. Although you can sub out other cold liquids for the drinking bit, substituting other liquids for swimming and bathing may not be quite as feasible…
  4. Protect that body! Be smart about your exposure to sun and heat. This goes for clothing (dress lightly and protect your skin from sunburn) as well as for finding shade. Short of investing in one of those giant retractable awnings they show on TV, you might try finding a shady park for morning walks or wearing a super fashionable baseball cap.

Just remember: to beat the heat troubles of MS, it doesn’t take pure genius, just common sense. Enjoy the coming warm breezes with a totally chillaxed mind (and body—MS or no!).

p.s. the totally gratuitous image of a lovely young man cooling down was taken by Graur Razvan Ionut and is available free (the image, not the man) at http://www.freedigitalphotos.net/images/agree-terms.php?id=10019970

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You’re Having a Laugh…

Krispy Kreme CybermanIf you had met me just before I started this blog, you would probably never pick up the phone to me again or at the very least, you would raise an eyebrow at me pouring yet another glass of wine, sniveling and whining, ‘S’not fair, s’not fair, my life is over. Over, I tell you.’

I read an article recently about the difference between self-pity and self-care with grim recognition. When the whole MS saga began, I sought endless validation for all my negative, soul-destroying emotions, handing over responsibility for my pain to anyone who was willing to take it on. I was having a continuous pity party and everyone was invited.

Sympathy confirmed just how awful my situation was and I was free to carry on regardless. I spent long evenings trapped in dark thoughts, envisioning a bleak future, if I had a future at all.

What changed? I was hurtling downwards to the point of no return. I was alienating those closest to me. My situation might never change, but I could. I was utterly fed up and frightened of being a helpless victim of fate and decided to take back the reins of my life.

The friends who stuck by me through that period are the ones who poked fun at me – it was what I needed. The intention was never to undermine the seriousness of MS, just putting it into perspective. The symptoms weren’t going anywhere, so let’s have a bit of a laugh about it. The dodgy hands, the wonky feet, the complete inability to remember simple words.

I wanted to turn the whole thing on its head. Yes, MS is awful. Yes, it’s serious. And if you want to, you can live your life that way. Sure, I still have moments (days) of utter terror but I wanted to be in control of them so I started this blog to work out my feelings, to show there has to be a lighter side to MS, bizarre though that may seem.

So just like the Cyberman in my picture, the most terrifying things can be funny and no matter how dark the shadows, the light that shines nearby is even stronger.

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