Greetings and Salutations.
I haven’t posted in a while for a number of reasons; firstly, I got a job and I’m still working at said job (albeit from home via Skype) and it’s doing a reasonably good job of keeping my epilepsy in check. My next planned update was going to be after my next neurology appointment in June (which I doubt will go ahead).
Secondly, Covid-19 (which from this point forwards I will refer to as CV to save me typing it) has kind of taken away quite a few of the purposes of my blogging, as the world and it’s oyster has suddenly had to become experts at lifestyle restrictions, removal of freedoms and in the worst case scenarios dealing with horrible symptoms of an illness (all previous blog subjects for me).
Things are definitely not about me, me, me any more so it would be inappropriate for me to write about CV from an egocentric point of view. All I will say is that strangely enough, it hasn’t actually impacted my mental health at all, which is something that I know lots of the global population are dealing with right now. People are scared and this is causing widespread stress, anxiety and insecurity. I can only assume either I’ve become so acclimatised to those things through my own circumstances that it hasn’t hit me as hard OR the benzodiazapines which I take for my epilepsy have made me so apathetic I’m a bit numb to it all………
Anyway, I was inclined to stay silent for the time being because I know social media is overwhelming everyone; I don’t need to use this platform to share public safety information, I HATE motivational quotes and I think every Joe Blogg has some political view on who is going where when they shouldn’t be or how much yoga and mindfulness we should be doing.
However, I was asked yesterday to take part in an Instagram live chat with Jessica Keenan-Smith, the founder of Living Well with Epilepsy (an American Foundation which I have contributed blog articles to before) and I was really surprised by how many people joined the chat who I didn’t know; presumably all followers and/or people whose lives are impacted by epilepsy. They were asking questions about life experiences and how to deal with situations and it made me realise that, CV crisis aside, maybe people living with long term health conditions DO still need a separate voice and don’t want to be swallowed up or forgotten about in the general spirit of uncertainty. Therefore I’m putting fingers to keyboard to try and help.
I think for me being busy (but just the right side of busy, not overworked) is key to successful epilepsy management and I’m pretty sure I’m not alone. Therefore the situation which CV has created should in some ways be helpful. We are all indoors, there is no time pressure to run a household and a job (if you are able to work). Of course, many of us are still working from home, but hours spent commuting are obsolete so the pace of life has been forced to be more leisurely. If, in healthier climes you found you were doing too much, try and either lean in to these times when you can’t do too much and realise the world does still keep turning if you don’t run a tight ship all the time or alternatively take advantage of the extra time and teach/encourage/force other members of your household to take on chores, with the clause that when we are out of the dark side, if they can do it now, there is no reason why they can’t continue doing those chores in normal life. It’s a really good time to try and introduce shared working practices into your home.
Hobbies are another great way of keeping busy and I know for many people with epilepsy, their therapeutic value is enormous. The stress, seizure, stress cycle is very real and although I know we DO have additional worries to occupy our minds, we can also use this time to indulge in whatever makes us feel calm knowing we will not inevitably need to rush off somewhere else.
With caution and accompaniment (where this is possible) test different types of activity to see where your strength lies in terms of epilepsy triggers. In the UK we are still allowed to do one piece of outdoor physical activity a day as long as we are alone or with a family member (observing social distancing). If you struggle with social anxiety try a walk during this period; the streets are quiet, you aren’t going to bump into people and the fresh air helps with well-being. There are a multitude of free online tutorials for various types of indoor exercise all available for free due to CV so again, maybe try one of those if you aren’t comfortable with going out….no time pressure to fit it in around everything else, no anxiety about class participation and no issues with not being able to afford online classes due to not being able to work because of your epilepsy.
It won’t work for everyone, and please be mindful of your seizure management as our health services are at breaking point and also not safe places to be at the moment (so don’t try 20 minutes flat out on your indoor treadmill as your first attempt if you never had time to use it before) but it IS a good time to see if factoring these things helps to improve your seizure management and your mental health (which could then consequently improve seizure management).
Or keep it simple, read a book, do some drawing or painting or even some writing (maybe a journal about 2020?)
And finally, keep in contact with people; man is not an island. Make phone-calls, send emails, Skype or write letters. If you are that person who is sick of being the “one with epilepsy” and dread talking to family or friends because you know it’s going to factor into every conversation and you’d rather just be treated normally…..this is your time to shine, no-one wants to talk about anything other than CV so it might just be the case that they don’t do that well meaning but sometimes not always appreciated “How ARE you?”
Disclaimer: the above paragraph doesn’t apply for me, I’m talking about a wider community, I don’t mind being defined by my epilepsy or asked about it so please don’t be offended by the above if you know me.
You can also use your contact with people or skills for good, killing two birds with one stone. Can you offer help to anyone remotely using your skill-set? You might be part of the population with epilepsy who can’t work and feel frustrated but know they ARE capable of doing a job…..now is a great time to get yourself remotely out there. Yes, you might not get paid for the website which you help design for someone during this period or for the bit of marketing you do for someone BUT it might just be a stepping stone. Everyone is in the same position, and if you can find something which suits you and prove you can do it remotely and successfully while CV rages, we may be in a position to push employers to consider such arrangements on a more permanent basis in the future. This would open doors for people with disabilities in so many ways. If you seek out acts of altruism which you can perform you have literally nothing to lose and potentially you’re in an ideal place to make gains in the future.
I’m sorry I haven’t talked about the medical implications of CV and epilepsy here. This is for a good reason, I’m not qualified to. I don’t even know about my own situation as I haven’t had a temperature since my epilepsy mutated two years ago. I know temperature control is a big trigger for some people so make sure you have paracetamol to control it (but don’t stockpile irresponsibly) but other than that keep up to date with the specific guidance via the Epilepsy Society or Epilepsy Action in the UK or the Epilepsy Foundation in the US and if you feel you need to, speak to your doctor or neurologist.
And of course……….