My MS Bully and Me

Copyright: C King Resolution is my new poem. The word means different things to different people: an outcome, a goal, determination. I would say all of these meanings have had relevance these last few months, and the important thing to take away is that I see light at the end of the tunnel; that what I am doing is taking effect.  I am not always able to share what's going on or how I'm feeling, but I am a very positive person and I find my joy in so many things, including simple pleasures. Just over a year ago, my last poem thanked those around me for their patience and support, and this hasn't changed. However, I have found myself increasingly grateful for the kindness they have shown me.  I hope you enjoy the poem. Resolution There aren't the words, at times, to express all that I'm feeling, There isn’t always strength to deal with what I'm dealing I know I'm not alone in this; I know that I’m not crazy. I know my efforts aren't...

© C King 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...

Oh God, I've forgotten to buy the brussel sprouts and the world is about to end! Alright, which one of you moved the French baguette? What do you mean, you’ve eaten it?! That was for the Christmas MEAL! Okay, okay - I think I still have the bread machine somewhere. Flour, check, salt, check, yeast… where did I put the..? I. Don’t. Have. YEAST! (As you hyperventilate, you momentarily consider packing a bag and buying a last-minute one-way ticket to Spain. No one will notice.) In principle, those with chronic conditions love Christmas as much as anyone else, but the reality is that it can be anxiety-inducing and energy-draining. This isn’t just about the panic that descends upon our houses over a twenty-four hour period. It’s also about the fatigue brought about through entertaining others, the overwhelming – and growing - number of tasks leading up to and on the day, the need to create the perfection that is kids’ Christmas, and the aftermath in the subsequent few days that kno...

I am sometimes asked why I called this blog 'My MS Bully & Me' (I know it should read 'My MS Bully & I' however the 'Me' sounded better!).  I have always considered my MS as part of me, but not who I am. I often hear others saying their chronic condition doesn't define them, and perhaps this is what they mean. I see the MS as something I didn't ask for or deserve. An unhappy accident. A convergence of many different factors, both physiological and environmental, that just happened to culminate in creating this particular condition.  Whilst MS is relatively common, particularly in certain geographical areas, it has not featured in my immediate world or in my upbringing. I am the only one in my family to have this condition. In many ways, I am supremely grateful for this. But I do see it as something to bear, rather than any kind of blessing. I often refer to my condition as "my MS," when actually I feel it easier to think of t...

Further to my post about fatigue. I was thinking about the things I've learned to do that help me save energy, which are helpful but of which none are rocket science. I'm sure there's a whole heap of things that you do much better than me, so if there is anything you'd like to share, please comment! Do you remember the 'boom and bust' theory (see earlier post re Fatigue)? As someone who experiences this fairly frequently, I need to keep an eye on my energy levels. However, getting the balance right is really difficult. Added to this, sometimes fatigue just nips you unexpectedly. I find the following helpful in countering this; I hope it helps you too. 1. Batch freeze/cook. In my boom periods (mostly weekends), I cook soups, chicken, pasta, just to put in the freezer or refrigerator. This especially helps when I've come home from work, but had a lighter meal at lunchtime and would like to eat something warm and substantial. 2. Slow cook. This re...

Having a child is by far the best thing that has ever happened to me. It's the most rewarding, exhilarating, heart-stopping, exhausting and amazing job there is. However, like most parents, I feel guilt from time to time: working and not spending enough time with them, having to put work first instead of going to Sports Day to or a special school assembly, not being on top of all of the school goings-on. All this stuff is normal; it's what every working parent goes through. However, if you have a chronic condition, parenting becomes a little bit stickier to get through. Here are a few things I've learned and hopefully they will be helpful for other parents with similar conditions. Energy We don't have any. So rather than beating ourselves up about not being able to take our children to the park after school, or remembering their snack every day, let's be realistic on low energy days. Get your child to help out with the cleaning or cooking - small ones especial...

I'm going to be up front - I'm not telling you this to glean sympathy. Indeed, if anything, I'm showing you how a person can adapt to something they didn't count on and make life look fairly seamless. I'd like to raise awareness that someone with a  chronic condition has to think this hard on a daily basis - using complex means - to look like everyone else. I must admit that I personally don't know a single person who does this, but due to the beauty of participating in online forums, I know that I am not alone. So, here's a glimpse into my week: 1. I spend some of the weekend dividing up medication and vitamin supplements into miniscule pill boxes for the week ahead. 2. I take ridiculous amounts of medication, at specific times of the day so they don't conflict with each other - avoiding alcohol for most of the day so it doesn't conflict with my stomach! (let's not go there) 3. As a heat-sensitive MSer, I sometimes lie down after a showe...