Tag: Ankylosing Spondylitis

This article has been taken from Chapter 9 of my book – Taking Charge – Making your healthcare appointments work for you.

This is not a face of contentment. Nor the face of comfort. This is the face of someone who does what they have to, despite it being the last thing they wanted to do.

Looking back on my Kempo journey so far, I can proudly say that Kempo has changed my life. Truly. If you had told me before I started Kempo that a few years later I would be doing 204 burpees in 30 minutes for charity, and preparing to test for my black belt, I would have called you crazy.

I cried today. I cried because...

I spoke with Dan recently to discuss the first episode of “This AS Life Live”, living with AS, and his ambitions for the future of AS care.

If you have at least one chronic illness, you will have multiple symptoms and problems. That’s just a fact. You health will never be still. It will ebb and flow like a river. And you won’t always know what direction it will meander next.

In October 2014, my life changed significantly. Not only did I move 3,485 miles away from my family and friends, but I also gave up my career as a nurse so that I could take on my new role within the household — becoming a stay-at-home dad.

If you have been diagnosed with a chronic illness, there is one thing that will help you along your journey more than anything — your support network. Sometimes this is your family and friends. It could be a weekly meeting at a support group. But more often these days it is to be found online. No one can deny the power of social media, especially when it comes to closing physical barriers, such as distance.

It has been over 9 months since I last wrote here, but with good reason. If you can remember in my last post I announced that I was emigrating to the USA. I am pleased to report that it went to plan, and I have now been a permanent resident of Virginia for the last 5 months.

Change can be scary, provocative, and hysteria inducing. Change can also be exciting and positive!

Autoimmune diseases – such as Ankylosing Spondylitis (AS) – are often referred to as invisible illnesses. This is because we often look ‘fine’ on the outside, but on the inside we are in significant pain and discomfort. As a way of coping we often develop our own ‘poker face’.

Our view of the world can differ from day to day. We all know that Mondays are evil, and Fridays are our salvation. But they are both just days in the week, aren’t they?

There is nothing more uncomfortable than looking up to find a dozen people staring at you! This was the feeling I had recently on my commute to work.

I must admit, the word 'emotional' is not normally a word that is usually associated with me. Much like my father, I carry on my day with a stoic, expressionless face; which reflects calm and calculated thought, reflecting my practical and often clinical approach to life.

Living with a chronic condition like Ankylosing Spondylitis (AS) makes you very familiar with the ups and downs of a disease that can leave you debilitated, with the dreaded 'flare' descending on you when you least expect it.

One of the hardest things to deal with in life is grief. Losing a loved one or family member can cause more pain than any physical injury ever will. Grief doesn’t just strike us when a bereavement occurs, grief can also strike with tragedy, but more pertinently, grief also visits us when being diagnosed with a chronic illness.

One of the ways in which you can stay positive, despite your daily struggle is to look for the positives in a situation, and not focus on the negatives.

For someone suffering with a chronic illness this is only made worse by the restrictions in which it inflicts. Living with Ankylosing Spondylitis has taught me a lot about time management.

This might seem a bit of an erroneous title to some of you, but I have been reliably assured it is accurate. As hard as it is to believe they really are people too, just like me and you!

Having a chronic illness can have an obvious impact on your dreams and ambitions. If you struggle to walk then your hardly going to be aiming to climb Kilimanjaro are you? Well actually maybe that is your ambition.

Living with any chronic illness can be isolating at times. Not just because it can limit your work and social life, but mostly because you are likely to be the only one you know suffering with your daily problems.

Living with a chronic illness can be both mentally and physical debilitating. This we all know, and live daily. Hope is the one thing that keeps us going, especially through the tough and difficult times.

Healthcare today has advanced and evolved significantly to that of previous generations. No longer do we believe smoking is actually good for you, nor that mercury cures syphilis, or any other ailment that didn’t already have a cure for that matter. What we do know now is that the human body is complex, and healthcare should not just treat the physical form we have become. It should encompass mental and spirital health.

Everyone at some point experiences sleepless nights. Whether it be stress from work, crying babies at 3am, or that cough/cold that just won’t let up. This is all part and parcel of being a grown up, is it not? However; true insomnia is a different ‘kettle of fish’.

Everyone suffering from arthritis knows the pain and restriction it causes with mobility and exercise. Ankylosing Spondylitis (AS) is no exception, and is often exaggerated by ‘the flare up’ which blights us all.