Do I Identify as Disabled?

Last night, I dreamt I was in heels. They say dreams are a clever way to deal with unresolved emotions. I haven't worn heels in a few years, though last year I invested in some boots with a tall heel.  I occasionally get them out and look at them longingly. Just to caveat this, I don't have a boot fetish, it's just that I do miss having the option of wearing heels. Due to my lack of balance, my penchant for falling, and for wandering into people and trees, this is no longer possible.

Feeling and being disabled are sometimes separate things. Four years ago, I gave a talk about MS to my department. I remember telling my colleagues that whilst I recognised MS as a disability, I didn't feel disabled. As you can imagine, this different perspective opened a few eyes. 

Fast forward a couple of years, when symptoms have crept up in a way they never have before, and I would most definitely identify as disabled. A week ago, I asked my Twitter family whether they followed the ident…

Managing Children & Anxiety Around Our Chronic Illness

One of the most simultaneously exciting and frightening things in life is being a parent. Nothing makes your heart soar more than seeing your child achieve; nothing drives your heart to your mouth quicker than when they are fearless.

For the most part, my parenting is like that of any other. Yet parents with chronic illness know that this creates an extra level of complexity. When do we tell our children about our condition? How do we handle questions? What do we do with the guilt of not always being able to do the things that other parents appear to do without limitations?

I've spoken about chronic illness parenting guilt before. It's a unique emotion. This particular kind of guilt makes you doubt yourself. The biggest concern I have as a parent is am I doing it right? I always say it would be good if nature allowed us to give birth to our child, followed by a manual! My second concern as a parent is one specific to having a chronic illness: is my child worrying about me?

The la…

Why People Don't Offer me Their Seat

In the late 1980s, a well known pop duo sang "She's got the look". This song came to mind as I stood at the bus stop waiting for my bus which is notoriously devious in not announcing itself via the destination board. Why was this song in my head? Because today, silly me, I don't look sick. 
Apparently, if you wear a stonking, great badge saying 'Please offer me a seat', this actually means you must be absolutely fine, as well as having a predilection for the colour blue or large badges, or playing an April Fool's joke on anyone you meet. This badge seemingly provides an excuse to raise the newspaper over your face or stare intently out of a dirty window at traffic. If you're not doing any of the above, you're suddenly finding the floor extremely interesting. In fact, I'm pretty sure that someone once even had a pretend conversation on their phone to avoid the overwhelming awkwardness.
Are we having a rant today? Yes, we bloody are! There, I'…

When Having Invisible Symptoms is Useful

How can having an invisible symptom be useful, I hear you ask. I'm going to start this off by being very clear that I'm not suggesting that being invisible in itself is useful or that those of us with chronic illness are deliberately hiding our symptoms. Nor am I encouraging people not to share their condition with anyone. 

On this World MS Day, social media will undoubtedly be flooded by posts about invisible symptoms. Rightly so, as it's important for non-MSers to understand these symptoms, and perhaps for others in chronic illness communities to see the relative similarities and differences in our conditions.  I'd like to do something different, however. I would like to look at when having symptoms that are invisible, may be advantageous.
When we're not readySometimes, we just aren't ready to show our hand. This is true of lots of situations. As a member of various online forums, I see people who have just started dating someone and are unsure about telling t…

Being in Transition

As a Coach, I sometimes use the Kubler-Ross curve when clients are facing some kind of transition. Having worked with the model for a number of years, I've more recently used it with those newly-diagnosed with a chronic condition. However, over the years, I've also come to  a few realisations that help deepen the understanding of the model, including around my own interactions with it.

The Curve is not always linear
I've always heard the Curve described by others as going from Point A to Point B. You experience shock and gradually work your way through the emotional stages toward acceptance, as if a simple and straightforward process: "Right, you've reached acceptance, congratulations!"
As with others hearing the news of a diagnosis for the first time, I went through each of the emotional stages one by one but I'm not sure that in nearly fourteen years, I have ever accepted MS in either body or in life. I acknowledge it, I know it's there, but I've n…

Season's Greetings!

I just wanted to pip in and say Merry Christmas and a happy, healthy 2019!

Over 8,700 visits in the last 6 months. Visitors from all over the world are welcome!

Happy holidays from my home to yours.


MSversary: The Bully is 10 Today

This week is the ten year anniversary of my MS diagnosis. Having a diagnosis anniversary is unlike any other. You don’t celebrate. There are no gifts.  It’s a reminder of how much you’ve lost and how far you’ve come. You remember it with both sadness and hope.

For me, it’s been an opportunity to reflect. Of course, I’d be lying if some of this didn’t involve thinking about where I was as a person ten years ago. No fatigue, lots of energy, virtually no pain (other than the relapse confirming diagnosis) and living day to day. I never felt the need to look back and had no concerns about my future.
I even wore heels.
I was diagnosed two months into my marriage and well into the mindset of having children; not so much a want as it was a need. Even then, I had other parallel health conditions, such as PCOS. Professionally, I was in demand and at the peak of my career; very much an expert in my field.  
When you reflect, it’s hard not to revisit the Kubler-Ross curve. All that anger, frustration…