My MS Bully and Me

Copyright: C King You may remember that at the start of lockdown, I wrote an article for the MS Trust and talked to them  regarding how MSers are good at dealing with change, reminding us that for some, we are dab hands at self-isolation, having already dealt with aspects of lockdown, including inaccessibility, not seeing family and friends, unable to access public toilets, having our lives turned upside down suddenly with relapses, and so on. When relating our MS experiences to lockdow n, I was very careful to talk about this in the context of change, something that, due to the unpredictable nature of MS, we are used to.  My language was deliberate: I didn't say that we would come out unscathed. It was a 'welcome to my world', balanced with a 'change is hard, but we'll get through it.' And we are. O ur resourceful mindset and our varied skillset have been hugely beneficial at this very strange time, but  we have now had to balance the extra challenges o...

We're nearly in May, and you may be wondering where on earth I have been. Well, you can probably guess that, like most of us, I have been at home, and I have been rather busy. I was also quite ill for about 12 days, so needed time out to focus on getting about without getting breathless! Guest blogs and podcasts Following my article on mental health for their Open Door magazine, the amazing MS Trust invited me to talk about MS and mental health in a fantastic podcast series called 'It's All in Your Head'. Hear my dulcet tones in Part 1 of the series at 19:30! I also wrote an article about how MSers are in prime position to deal with the COVID19 crisis, due to our unusually relevant experience. This was very well received by our community, and I was invited to a one-off special podcast, called ' Coronavirus and MS: Your questions answered' (hear me at 22:20). I would highly recommend listening to the MS Trust podcasts , which feature healthcare profe...

Copyright: C King What can we learn from the Virus situation? Apart from the obvious, I really think there are lessons for humanity here and, given that we are likely to suffer some kind of global crisis again, I think these are worth noting. Good Things to Come from the Situation 1. People are reaching out, reconnecting and supporting each other. I genuinely have been moved by the kindness of neighbours. Within a week of the first government press conference on the Virus, several threads appeared on a local neighbourhood app offering to help those locked away, with shopping drop offs, telephone chats, even the latest tips on where to buy that elusive toilet roll (I kid you not!). 2 . Yes, o rganisations seem to have forgotten their disaster recovery plans, made after relatively recent terrorist attacks, only to be seized and enacted by new handlers. Yet b usinesses are finding creative ways to keep people working and connected, whilst still promoting remote working. Agile ...

Copyright: C King 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 ...

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 - ...

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...