My MS Bully and Me

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...

I wrote this poem the other day whilst watching a television programme. I've not been feeling very well these last few months, so I really need others to understand why I'm flying under the radar at the moment. I'm not sure which muse I channelled, but I think it very much sums up how I feel about my communities, both personal, social, medical and online. Thank You to my Support Network People say I look well, And they say it with heart, I say “I’m fine!” (I've got it down to an art!). The invisible pain, Being careful with stress, The fatigue, cog fog And other nonsense. Would you really want to know? Would you be able to cope? Uphill on a MeSsy slippery slope. Yes, sometimes I cry When the future’s unclear, Every memory is precious, Every moment is dear, But there’s no death or disaster, Insurmountable blow, Just unpredictable hope - Time to recover and grow. Thank you for empathy, Patience - too kind - ...

I make no apologies for the initial reason for writing which was purely for some creative therapy! And this works. I get to absorb myself in the writing, sometimes going 'there,' so you can see the true side of MS. However, by proxy,  something else quickly developed when I first began writing. When I look back at my career, indeed all the roles I have undertaken since the age of fifteen, I've always helped people. As cliched as this sounds, I have! This very easily translated into this blog.  It is so important to me that I help others better understand MS, be it their own or that of others I wrote this blog for me and now I write this for both you and I. 6,500 of you have dropped by to read my wonderings, and I really appreciate it. I hope you get something from them too. Remember that of you'd like to be notified of more of my crazy, sorry,  insightful writing, please feel free to like my page which provides info over and being my blog: https://www.facebook.c...

With Shift MS, I've made a number of videos around disclosing MS and where to get support. This is my next instalment - I hope you find these useful! If someone decides to disclose there MS at work, how can they prepare for that conversation? https://www.youtube.com/watch?v=qkIRupT2JVU&t=3s If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme

When I think of health disclosure in an employment situation, I think of it in two parts (three if you consider the prep beforehand): the conversation and what happens next.  Before you begin your prep, consider the following: Are you ready? If you're newly-diagnosed, do you need more time to absorb the information? If you're ready to discuss your condition, do you feel confident and if not, what will help you feel ready? The person you are disclosing to is human and may have a human reaction to your news, even if it's not quite what you were expecting. You've lived with this knowledge for a while, they for the last few minutes. What, if any, support do you need to do your job as effectively as you can? What will give you the same fighting chance as others without your condition? Provide reassurance on how you're managing your condition at work. For example, if they are able to make reasonable adjustments, what are you also doing? Are there questions they...

We all have days when we don't feel up to being with the world.  I don't mean a duvet day; that to me is a completely different thing. I'm talking about t hose kinds of days when you don't want to speak to anyone, interact with anyone and just be with yourself. For reasons I'll explain at a later date, I've sent my family on holiday without me, so I'm feeling like I need one of these days today: let's call this a 'Hiding from the World' day. Having a chronic condition, coupled with a Hiding from the World day, is usually linked with a need to be alone and/or a need to slow down, if just for a day. So, what do we do on these sorts of days? 1. Get some wrap around care for the children. If they're at school, all the better; if not, then call in the cavalry. Don't feel guilty; your body is telling you need to be restful today. 2.  Choose one activity you would like to do today. It doesn't have to be from the list below. The ru...

If you're wondering where I've been these last few weeks, I've been watching my energies and being very careful about what I've been devoting these to. Ive been working with Shift.MS and their brilliant MS & Work series. I hope this helps someone out there or at least kicks off some thought-provoking discussion. The Pros & Cons of Disclosure https://youtu.be/8HxIFCk2W20 If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme

It's thirty-four degrees today. Flies are on their backs, curtains and windows are closed, and those who are braving this insanely hot world are doing so using umbrellas for shade. I literally don't think I've ever been in such a hot climate. We MSers have a really tough time in the heat. We are taking to online forums in our droves, complaining about how unbearable this is and begging others for ideas of how to combat the heat. I currently have more than one tower fan pointed at me while I write this post. I'm also using dictation software as I can barely open my eyes. For many of us, we talk about heat in the same way as we describe fatigue. Both are insidious and there is little to control them. It seems apt, then, that one is a source of the other. If I didn't do the tips I mention below, I wouldn't be able to function and goodness knows, we mums cannot stop. In the past few weeks, I've also been getting increased blurred vision. At first, I though...

Dear MS Bully, Congrats on grounding me, especially these last few months. You've been working really hard; it's been a humbling experience. However, I just wanted to remind you that you don't know me quite as well as I know you.  You may well try to pull the wool over my eyes with your 'cog fog' and stall me with your fatigue, but I know something you don't. I know me. Which means I will always make an extra effort to be as much of a thorn in your side as you are in mine. I will not yield to your demands unless I really, really have to. And even then, I'll find a way to be wilful - perhaps soak up that Vitamin D that much longer or take my boy to sports camp; perhaps limit your control over me by speaking at events, or may be I'll just keep writing this blog (I have dictation software. so whatevs!). Because of you, I have found a strength and a voice  I didn't know I had. I am pretty confident that I can stay strong through adversity. I am f...