Why should I build an online support network?

This post is part of the November 2020 Blog Relay. This is a thematic initiative set up by the organisation http://www.livingwellwithepilepsy.com designed to raise awareness and understanding of epilepsy by launching an article from a blogger or sponsor every day in the month of November dealing with different aspects of the condition.

My topic this time “Epilepsy Everyday” and so I’ve chosen to write about my experience with support communities to hopefully help people who are newly diagnosed, or who don’t use them already understand more about what they can offer, how they can be accessed and also, how to avoid pitfalls.

Firstly, I think that in these times of a non-contact society, using online (and telephonic) support while you negotiate your own (or someone that you care for) journey with epilepsy has taken on an extra dimension of necessity. Many of us have experienced cancellation of face to face hospital appointments or limited access to everyday medical support and so, if you have been thrust unwittingly into the digital world to manage the medical element of your epilepsy, now is a great time to see what else is out there in terms of support from the wider epilepsy community.

The first “tier” (because we know everyone loves a tier, yawn!) of these are the official charities and organisations. In Britain we have the Epilepsy Society and Epilepsy Action, both charities which provide excellent resources in terms of fundraising, research and offering contact with trained advisors who can talk to you about challenges you might be facing related to epilepsy. These include helping you understand how to access practical support (what accommodations the UK government makes to make life easier for people with epilepsy for example or how to make your home safer), offering a friendly ear if you are struggling with your mental health and, although they can’t offer medical advice, they can point you in the right direction of those who can.

Organisations like Living Well with Epilepsy can also share information, articles from medical professionals and bloggers. These platforms are regulated and reliable, so you can use them safe in the knowledge that what you find is factually correct. They are a great starting point for learning more about epilepsy and separating fact from fiction. Their only disadvantage is they aren’t “personal”, so you might not be able to find anything to help deal with your specific predicament.

The next element of the epilepsy support network I’d like to talk about is social media groups. There are a HUGE range of these across pretty much every platform and they cater for every element of epilepsy you can think of. In this sense they are great because you can reach out to people who know what you are going through because they are living it. They will understand in a way that the people living around you and even the most qualified neurologist out there will not. You can narrow your choices by field; type of epilepsy, gender (this isn’t as discriminatory as it might sound, lots of women suffer from epilepsy which is specific to their hormonal cycle so it make sense so have groups just for them…..there may also be groups just for men as well, I haven’t personally looked), specific activities and how epilepsy impacts them e.g. sport or employment. You can also join groups to share experiences with other parents of children with epilepsy if this is your specific need.

I am a regular user of epilepsy social media pages. I use some for advice and support and some just for fun; for example I follow a lady on Twitter called @EpilepticRuner (RunAngieRun) who blows my mind. I found her when I was looking for advice about building stamina whilst taking anti-epileptic medication because I wanted to start running again and was finding it hard going. It terms of what she does there wasn’t really much that was relatable to me (she regularly runs 100km+ ultra-marathons despite having uncontrolled seizures and being on a big cocktail of medication) whereas I still haven’t made it back past a very sedately paced 10km (I used to be a reasonably good distance runner) and so I don’t draw inspiration from her as such, but I still like to see what she’s up to and what challenge she has set herself to complete next. Her own personal dedication is next level!

When you’re feeling low (which is an inevitable part of dealing with epilepsy) social media groups are a great place for instant sympathy. I personally HATE the vast majority of motivational quotes but I know they help lots of people and occasionally one will pop up which will resonate with me, Instagram is awash with this kind of quick “pop in and get a virtual hug” type of support. The groups available via Facebook are more specific and as long as you can turn a polite blind eye to the “thoughts and prayers” which are always on offer if they aren’t your cup of tea, if you want to share your experiences in a closed forum these groups do act as free therapy, especially as there isn’t really much in the real world in terms of support for those suffering with long term medical conditions (same issue as previously mentioned, you can be the best psychotherapist in the world but until you’ve lived it, there are limits as to how well you can empathise with it). The people are usually nice, the groups are usually well moderated and perhaps most importantly they are easily accessible, so if you are bed/sofa bound and feeling sad and sore because you’re recovering from a tonic clonic or medication side effects you can still find someone to talk to.

I do however feel like I would be irresponsible to advertise these groups without explaining why they aren’t perfect, especially for people who are going through diagnosis or are new to epilepsy. It really and truly is almost like a whole set of cyber-safety rules should exist for medical support groups.

Firstly, they are often global, which is great for always having someone available but, medical services, medications, laws regarding issues like driving and benefits and alternative therapies vary massively from one country, state and continent to the next so it is very important to understand that whilst someone can give you advice, it doesn’t necessarily meant the same thing will be applicable where you live. Take heed.

Secondly, everyone’s experience with epilepsy is different, and whilst it can feel amazing to find someone who shares the same symptoms and has been prescribed the same medication as you (trust me, it really does feel unbelievable to find these people in your darkest hours when you feel totally lost and confused) you HAVE to keep this in perspective. It is a condition which can take random twists and turns at any point for no discernible reason and therefore you can easily set yourself up for a fall if you find a “kindred spirit” only to find out they are being weaned off medication in six months time or a candidate for the surgery you’ve begged for but been refused. I can also not stress strongly enough how important it is that you must NEVER take medical advice from any online social media platform. We might all share experiences and in some cases run professional epilepsy organisations but we are NOT trained neurologists and advice regarding medication and treatment should only come from YOUR doctor or nurse.

Lastly, by nature, some of the topics are scary, and if you are feeling vulnerable, epilepsy social media forums aren’t always the best place to be. It’s very important that the profile of SUDEP (Sudden Unexpected Death in Epilepsy) is raised and if you or your loved one has epilepsy you SHOULD talk about your own risk factors with your medical practitioner but I fully appreciate if you just popped on to talk about period pain having your own mortality discussed is truly terrifying.

People WILL also want to talk about their mental health and depression and anxiety, and sometimes by nature shared experiences can bring you down instead of up….all it takes is for you to be in the wrong mindset and a few people discussing their depression when you perceive their lot to be better than yours can send you on a downward spiral. In these instances I would advise, don’t leave the groups but do take a break, come away from social media and do something grounding and gentle. Learn to recognise when things are making you feel good and when they aren’t, know what you need to do to remove yourself from the situation. This is of course a huge advantage of online contact, I know it is addictive but it’s also not a physical room you are stuck in, you can just walk away at any time.

Despite all these things which you should be aware of, I am a firm advocate of the online epilepsy community and I think it is definitely the best place to go to help normalise what you are going through. I can’t promise it’s the right path for everyone but in these, often lonely times I would recommend you try it, and experiment for find what works for you. My own condition is currently not fully controlled but it is stable and I am still a regular visitor. It’s nice to be in the position to be able to “pay it forward” and help others who are beginning their journey, offer reassurance and to share in other people’s victories, no matter how small. It’s not a community any of us chose to be in, but since we are all stuck with it, there isn’t any need for it to be a storm you weather alone.

The future’s bright, the future’s……murky grey

Like many others, I haven’t written a  blog post for a long time. Blogging is by nature a self-indulgent activity. It serves a purpose by giving other people information and for lots of people who write about their challenges, it is incredibly cathartic. However, the here and now in the big, wide world isn’t about me for so many reasons. Things aren’t looking very rosy for lots of people, hence the title.

This blog is supposed to be about my epilepsy journey and although I’ve seen lots of others in the epilepsy community continuing to push epilepsy awareness to the forefront of people’s consciousness in a business as usual fashion, that doesn’t feel quite right for me at the moment. I haven’t written for a while for this reason and I can’t carry on writing this post without acknowledging two important things.

Firstly, I’m white and I’m privileged. I haven’t always been very good at feeling other people’s pain when my own suffering has been at the forefront of every day but at the moment I’m not suffering, so I am very aware that there are so many people who have been, and will continue to be repressed until changes are made. I know that #blacklivesmatter and I’m not writing about myself in blissful ignorance of this.

Secondly, I can’t talk very much about Covid-19, I don’t know much about it from a medical perspective, the information we are fed is so skewed I can’t speculate about what direction things will take next and I’m fine with my epilepsy not being at the forefront of anyone’s things to think or read about because we’ve all got bigger concerns.

However, I did have my first appointment with my neurologist for six months yesterday (by telephone) and so it felt like the right time to at least share something, however inconsequential it might be compared to everything else which is happening.

I finally got the results of my genetic testing back, which (again I feel some NHS guilt because it sounds like they were extremely in-depth and therefore expensive) have confirmed I don’t have PME (Progressive Myclonic Epilepsy). In other words, I don’t have a neurological condition which is going to get progressively worse until it kills me, like Huntington’s Disease. I hadn’t really allowed myself to dwell much on the possibility that I might have this because other case studies I’d read seemed much more severe, but my neurologist sounded pleased to give me the results, so I guess she did have some concerns. I also don’t have brain granulation which was another concern possibly raised in my last MRI back in November. Again, this doesn’t mean much to me but being told you don’t have something is usually positive. So those particular chapters of my book can be closed.

The flip side of this is that they’ve now exhausted the battery of tests which can be run to find out WHY my condition altered almost two years ago now. The best answer which she could give is something to do with my thyroid. The tiny little bastard gland which sits in your neck and supposedly regulates all your hormones (not just the female ones, hormone do all sorts of things all over your body). To put it bluntly and in non-medical terms, it’s a pretty crap bit of kit; it seems to “pack up” for a lot of people and the collateral damage presents itself in myriad ways. For me, although the extent to which it stopped functioning perfectly is actually very small, it sent some kind of shock-wave which messed with the already slightly scrambly electrical signals in my brain and made the whole situation much worse than it had been for the previous 20 years.

I hope everyone is enjoying the depth and breath of medical terminology I’m using here and that it reflects how much I know about the thyroid gland……….possibly not much less than the experts considering the “well it might, but it might not” approach which is taken to discussing it.

Anyway, I asked if, as my thyroid continues to self-destruct (this is the case for anyone with a malfunctioning thyroid, it might not necessarily continue to get worse, but it’s a chronic condition, you can’t mend an over or under-active thyroid, you can only treat it), I can expect my epilepsy to change again and was told no……but we will see. As always, I’m a realist so I’m not skipping away writing this possibility off.

In terms of my current control over my epilepsy, it’s good. I’m down to a few auras a month (these are mini-seizures, not really visible to the naked eye in my case, they present themselves more as just horrible feelings of impending doom or just feeling not quite right, pretty inexplicable) and a very occasional single jerk, all of which go away if I take an increased dose of my rescue medication. Some of this improvement is due to Covid-19 because, as, as mind-numblingly dull as lock-down is, the slow pace of life suits my excitable neurons. I’m conscious that when I do have to pick up the pace, it might take a while for my body to readjust and things might get a little worse again.

I have one big decision to make, which is whether I want complete seizure control or not. I need this so that I can think about working towards being able to drive again, but it’s not as straightforward as it sounds and I need some thinking time. To do this will involve tweaking my medication and increasing it to see what happens. I know my current medication works but the side effects may become intolerable and it means I’ll turn myself into a walking time-bomb. If I have auras only for two years I can apply to the DVLA, (even if they continue) but anything else seizure-related in that period will set me straight back to square one. It’s a lot of pressure. At the moment I feel quite sad about the inevitability of not driving again but I also don’t want to be stressed about trying to make it through two whole years of not doing something which ultimately I have no control over whatsoever.

During lock-down, I’ve taught my body to run again, which has felt like a huge achievement but has also been really hard, I don’t know what changed in my physiology over the last couple of years to make it so much more difficult but I’m doing it. I’ve also held on to my job since January. These are both really big epilepsy milestones that were a long way from my periphery a year ago, which is why I almost wish the driving issue didn’t even exist. I’m going to try my best to repress any thoughts of it for the foreseeable future in the same way that I did working and running. In the current climate, I do feel embarrassed by the ‘first world problem’ nature of my upset as I know so much is going on right now that it barely registers as something to be bothered by.

I think it’s just the next stage in the marginal gains process and is one that I need to forget about, rather than making it my next ambition. It also rated really low for me personally when I did a lot of soul-searching in terms of recovery as something I wanted back. It’s just a little raw right now as it was the only topic I really wanted to raise with the neurologist yesterday (which again, is a good thing, as I didn’t have anything more troubling to discuss).

To close, I am going to write a little about Covid-19, not from a medical perspective, as I know nada, but from the point of view of a mother struggling to make it through lock-down. It’s bloody tough! We’ve stuck to the guidelines pretty religiously and consequently our children have had almost no freedom since 20th March. The enthusiasm we all had for family quizzes and no school-runs and long days in the garden has progressively dwindled and I’d be lying if I said I wasn’t concerned. My children have degenerated from being motivated, gregarious and affable creatures into increasingly more insolent beasts.

We will continue to uphold our part of the bargain and I won’t be letting them into shops or enclosed spaces until we feel it is safe, regardless of what the government advises but I know now that man is definitely NOT an island. Social media and modern technology has been a blessing and a curse for them and I can only hope that, when they are allowed to mix properly again, they still possess that wonderful adaptability which is innate in children and it hasn’t been sapped forever by these unprecedented times. They continue to work hard academically and I’m very proud of the way they’ve adapted to this but although they aren’t medically unwell, Covid-19 has taken away a lot of their spirit and I dearly want it back.

Stay safe and well and, as much as it pains me to say it “stay alert”.



How can I help?

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……….

One giant leap……….

Sorry for the delay in writing something about what is undoubtedly one of the biggest points of progress since I started this blog AND since my epilepsy “took a turn for the worse” (bit of Nan speak there for you) but due to it’s nature and also due to me trying my damned hardest to make sure my spare down-time is spent being as calm and down as possible I just haven’t had the chance to write an update.

In case you hadn’t guessed, after roughly eighteen months of being for the most part, unemployed, I’m back at work. It has come about quite suddenly and also coincidentally at a time when I’ve been doing some advocacy work for the UK charity Epilepsy Action, promoting awareness regarding the employability of people with epilepsy in the UK.

There appears to be an inherent lack of understanding of epilepsy in the workplace and consequently the numbers of people with epilepsy in the UK who do not work (currently two-thirds, which is a much higher percentage than for other chronic conditions) and I’m honoured to have been asked to contribute to this campaign to hopefully help break down these barriers and get people talking. I’ve taken part in three radio interviews and will hopefully be used as part of a written journalism campaign shortly.

Since the advocacy campaign has revolved around what employers can do to make working more accessible to those with epilepsy, the slightly unusual nature of my new job couldn’t be more fitting; it was a lucky coincidence but I hope it encourages employees and employers to think that little bit harder about how gaps can be filled in the workplace in unconventional ways by people who are quite possibly looking for unconventional jobs. I will explain more below, but the irony of my new role is that it was proving difficult to fill as most teachers didn’t want to only be working for three hours right in the middle of the day!

I’m working through an education agency for a Local Authority tutoring children who aren’t taught in mainstream school. I enquired about a different job in the education sector with my local authority in the middle of January and after a chat with the employer found it was more hours than I felt I could cope with, but after I explained my predicament she put me in touch with the agency rep they use for supply teachers. I met him the following day and was at work five days later doing a job I had never done before with no prior training or planning ( a scenario which would normally completely freak me out).

Strangely enough, the actual starting of the job didn’t feel as stressful as I had imagined it would. The set-up is ideal for my current requirements; because it’s through an agency, if I’m ill (seizure or otherwise) I just don’t turn up and don’t get paid and in terms of the children I tutor, as they’ve missed so much school anyway, I don’t have a feeling of massively letting anyone down. The amount of education I AM able to provide to them is better than nothing at all.

For a long time, I wasn’t actually anywhere near well enough (my seizures were too erratic) to do any job which wasn’t working from home and was finding it really difficult to find anything (an area for improvement cited in my advocacy work) but as they are generally more controlled at the moment, the main barrier between me and employment was twofold.

Firstly, my own fear of being an unreliable employee, because I can’t predict whether my health will continue to remain stable and secondly finding a job which doesn’t aggravate my triggers or leave me so worn out and stressed that my seizures become worse again. In this respect my current role is perfect. I’m only contracted for three hours a day (between 10 and 1) and I work one to one with the students so I don’t feel the pressure of performing when I’m with them. I love teaching with all my heart but I know I’m nowhere near ready to be put back into that arena again at the moment.

It’s also rapidly broadened my skill-set, as not only are tutoring skills different to working with a whole class, it has also required me to learn to assess them in every key subject and “build a curriculum” (I do use this term loosely as I’m ten days into the job with no guidance) based on their strengths and weaknesses. In this respect, it lends itself well to my condition because things like fine motor skills (cutting for example) which are sometimes a trigger I can just avoid, as it’s me who decides what they do.

It isn’t perfect, I’m working five days a week with a commute each way which means I do have to be mindful of resting when I’m home. I also miss the element of working as part of a team of educators and having responsibility for the pastoral well-being of children rather being than a lone educator paid purely for learning BUT it’s a start, I’m coping okay and it’s a new string to my bow.

I’m also just so pleased to be working again; at my lowest, I used to think about whether, if I could just have one part of old me back would it be teaching or running and I could never decide which I would opt for. As you may have seen in my last post, I tried running but it isn’t actually working out that well (I will keep trying when I’ve settled at work), it actually makes me feel more anxious and isn’t liberating so hopefully teaching will help me rekindle some of my spark.

This particular role won’t last forever by it’s nature (the students are 15 and 16) but at least I’m now aware that such positions do exist and know what is involved. It hasn’t been completely “blip” free and I do feel it’s important to make people without epilepsy aware that because I’m working it doesn’t mean my epilepsy is cured, I’ve had the odd little seizure at home after work and a few little anxiety attacks but it is giving me the opportunity to see if I can deal with them, which considering the epilepsy isn’t going to magically disappear, is probably a good thing.

Continuing the theme launched by Epilepsy Action, I would love to hear about your positive employment stories if you have epilepsy (or know someone who does) and read my blog. Please feel free to contact me and retweet my post!

groundhog (but in a good kind of way) day

This is a largely medical update as I had a scheduled appointment with my consultant yesterday so apologies if it is a bit heavy on the medical jargon and thin on the anecdotes. The whole point of this blog was to share updates about my condition and not just self-depreciating humour so there might be something of interest in here to the epilepsy community or any family and friends who are still following my journey.

The first stage of the appointment was updating Dr S with my own progress, which as you will mostly know from my last post has been better due to the introduction of clonazepam two months ago. She was pleased to hear it has virtually stopped my jerks (only very few isolated ones in the last couple of months and no clusters), which is undoubtedly good news. I did discuss my fears about my body building resistance to the drug and addiction (which are unfortunately both very real disadvantages of taking benzodiazepines) but she assured my dose is currently still very low and that due to something about gamma receptors, with my type of epilepsy long-term tolerance issues aren’t largely problematic . I’m a little hazy about the gamma part as she does have a tendency to talk “up” to me a lot of the time (which I take as a compliment) but unfortunately no matter how much I read around the subject I’m not medically trained so some of it does go over my head.

Next I explained that I had started running again and asked whether, while my seizures are more under control, I’m supposed to be doing things which, in effect rebuild my neural pathways (so try to unscramble the junctions which have been going wrong now the medication is wrapping them in metaphorical cotton wool). She agreed that yes I could but that because we still don’t have a cause or a diagnosis (of the specific type of epilepsy) this needs to be done with caution as it is hit and miss. It’s different from rebuilding after a traumatic brain injury (TBI) for example as you can then clearly see which bit needs working on (speech, motor skills etc).

I am still experiencing (and have been more so over the last week or so) auras, probably best described as pre-seizure feelings. It is impossible to explain them as anything more specific than a feeling. They don’t usually come at random times but have happened a few times in the gym. Unfortunately auras (mini-seizures, simple partials, you choose the terminology you prefer) are very good at masquerading as anxiety and so it is very difficult to tell them apart. For this reason Dr S wants me to carry on running but has given me a few “experiments” to try using my clonazepam an hour before a run one day (as it’s a sedative) and then not the next to see if there is a difference. I’m a little bit hazy about what this will achieve but the overall outcome is I need to monitor the situation over the next week or so and I have the potential to increase the dosage if I need to. Her instinct is that if I think it feels like a mini- seizure then it probably is. I’m not too sure what this hypothesis is based on other than her discovery a year ago that everything which I had been told was anxiety by other doctors was proven to been epilepsy by the video telemetry.

Next port of call was my recent MRI results which were quite frankly, a little terrifying. Delivered in a fairly jovial tone was the news that the radiographer had found something near the back left side of my brain which could best be described as “a tiny little floaty piece of brain” in layman’s terms, which for some reason either didn’t exist or wasn’t spotted on previous MRIs.

Luckily for me it’s a bit complex to self-diagnose (although I have spent all morning poring over my ten year old MRI film pictures from a private hospital…..can’t find the floaty bit). The radiographer had written it up as granulation tissue (which I think is not good and is usually the result of a TBI) but my neurologist disagreed and took the images to a specialist epilepsy radiologist who also disagreed and decided they are probably brain debris instead. Apparently brain debris isn’t bad and as it’s not in the part of my brain where my seizures come from it’s not the cause of my epilepsy anyway, so I think we’re just pretending we didn’t see it (I again got a bit lost at this point ). I’m trying (and failing) to remove that part of the consultation from my mind as once again although it’s nice to have a doctor who speaks to me as if I have a fairly high degree of intelligence, knowing there is a little floaty bit of brain to go with the little peepy bit of brain which goes into my spine and a little fusey bit of brain which shouldn’t be fused in my head isn’t exactly reassuring; especially when none of these anomalies are apparently related to my epilepsy. MRI scanners are wonderful diagnostic tools but they aren’t always as reassuring as you might expect, even if they don’t reveal things which are majorly sinister. I feel complex enough as it is, without floaty, fusey and peepy thrown into the mix!

Next point up for discussion yesterday was the results of my genetic testing for rare, progressive forms of epilepsy (I had some biopsies and blood tests done a few months ago). The samples aren’t back yet; they’re in Liverpool, which feels sinister to me, as if the further they’ve been sent, the scarier it is, but in reality I haven’t got a clue. Dr S says the likelihood is low but I honestly don’t know what her suspicions are, so that is definitely the part of the consultation which I am trying to forget the most. I don’t really want to write it down and I don’t know what the odds are (depends on the condition I suppose) but the crux of it is that the tests are checking for types of epilepsy which will get progressively worse until they cause enough brain damage etc. etc to kill me. There we go, I’ve said it.

As I did explain at the beginning there is a lot of information here, but I do feel these things need to be written down as shared experience is part of working through living with chronic conditions. If you’d like a bullet point summary of other bits I haven’t talked about here we go:

  • no medication changes for me this time. This is great news; literally my first neurology visit without the feeling of dread of having to pump some new chemical into my bloodstream. For the time being we are on a wait and see protocol (hence the groundhog).
  • no work for me at this current time. Not necessarily a bad thing but feeling a bit despondent as I personally had set my sights on some kind of paid employment sometime soon. Having said that I do feel better about it today and in all honesty I think the stress of thinking about organising employment may have contributed to my recent auras. Not working is one of my own personal demons which has eaten away at me for 18 months, but it’ll have to carry on doing that for a bit longer.
  • Lastly, I read in an epilepsy memoir recently (yes I know I’m not supposed to read these but it was fascinating) that people with chronic conditions are often the bane of consultant’s lives once they become frequent flyers, because they invariably behave as if they know more about the condition than the medical professionals. It’s a tough call because, as this author explained, the medics undoubtedly have the edge in physiological knowledge (although with the brain that’s sometimes debatable because so much of it is uncharted territory) and the areas connected to the scientific discipline, but the patients win hands down from a psychological perspective as they live with it day in day out. My reason for mentioning this here is that at my last appointment four months ago I happened to mention niggling pain radiating down my right arm which had existed since my epilepsy had been problematic in August 2018. My neurologist gave a rough diagnosis of rotator-cuff tendinitis completely unrelated to epilepsy and told me to ask my GP for an ultrasound referral. I was entirely unconvinced as I don’t do anything which would put undue pressure on my right rotator-cuff like play tennis and the timing was also completely concurrent with my seizures beginning. It’s not an agonising pain, more a dull ache but it hasn’t gone away for 18 months. Anyway, in the last two months my jerk clusters have stopped and …….hey presto, the pain in my right arm has completely gone (my ultrasound appointment hasn’t come through yet anyway) and I can move it freely. I was already secure in the knowledge that I was right but I thought I’d mention it to my neurologist to see her reaction and unflinchingly she confirmed that yes, the seizures were causing the pain…..no tendinitis in town. Perhaps a little juvenile of me to feel like I’ve got one over on someone with at least 15 years of medical training and a certifiable reputation but I’ll take my small victories where I can find them. I’ve no doubt some international readers without universal free healthcare would say “wow, you need to find a new doctor” in relation to the above…….just to clarify, no I don’t need a new doctor, my doctor is the best in the business and thanks to the NHS I am very lucky to have her, I was just making a point that sometimes we should trust our own instincts.

This girl can……..

Today was an exciting day for me. As you can probably guess from the picture I ran 5 km.

Excuse the wonky red-face (I don’t think you’re doing it right if you don’t look like you’ve worked up a sweat) and the weird 2006 glasses (they’re the only ones I’ve got which stay put to run in), also excuse the distance on my watch. I actually ran on a treadmill and can confirm I ran 5.17 km in 32.48 minutes but I forgot to take my phone in so this is the only evidence I have and it clearly needs re-calibrating. I started running again 17 days ago and I really didn’t want to set milestones or challenges as this was supposed to be a baby-steps approach but I’m pleased, so although you won’t be seeing those tedious Garmin updates I used to do every day, I wanted to share this one.

For those who don’t know me, I used to be a hobbyist long distance runner, not an amazing one in terms of speed but I was pretty dedicated in terms of endurance. I ran 16 half marathons, was supposed to run the 2018 London Marathon and used to keep myself fit enough to run long distances most of the time. It was my go-to for happiness.

Epilepsy stopped me running, not for safety reasons but because, like pretty much everything else, it made me have seizures. I don’t know why; like most things I’m guessing my neurons just went a bit crazy one time whilst running and that was enough to send my unconscious muscle memory haywire every time I tried again. Upshot of this is I haven’t been running since 28th August 2018 (yes that’s how much I love it, I can remember every step).

I’ve been on a new drug since the beginning of October and it’s (kind of) working, it’s not perfect but I have much more seizure control than I have for the last 15 months.

Strangely enough I finally put all my running clothes in the loft about six weeks ago and then three weeks ago after some discussions with Marc (including me trying to put it off for just one more month) he pretty much (with the kindest intentions) forced me to join a local gym. Just to clarify, he wanted to to try so I would have a measure of my health improvement, not because I’d got fat.

The manager at the health centre I was dragged to is lovely. She’s wholeheartedly passionate about activity for all rather than elitist fitness and she did so much to put me at ease, including talking through my seizures and other concerns which weren’t barriers for her but things she needed to consider; like how I wanted to be cared for if I did have a seizure and how I’d get home safely post-seizure. Despite this I sobbed during registration and when she suggested I return the very next day with Marc on a guest pass again I cried and my anxiety peaked. I managed 8 minutes on a treadmill, crying, shaking and gripping the bloody handles (despite being at a jogging pace) the whole time but……. I didn’t have a seizure!

Part of my problem is that it’s impossible to separate out anxiety from seizures AND anxiety itself can turn into seizures so there isn’t really much of a way to differentiate but I have kept persevering and the anxiety itself about actually going to the gym has now gone which makes things less murky to work out. There are still other smaller battles to fight daily with regards to motor skills (another of my seizure triggers but which are MOSTLY being controlled quite well at the moment) but again although I’m anxious about them (fitting the padlock onto my locker is a great example as it’s part of the whole gym process) the actually epilepsy part has been okay (not perfect but okay).

I’ve actually regained an acceptable level of fitness again quite quickly (again it’s not amazing but it’s not laughable) and despite absolutely loathing the gym and treadmills it’s making me feel great. It’s the safest place for me to run right now so I’m good with that. I have a bit of an inner psychological battle with being surrounded by equipment which triggers my epilepsy but I also know I’m in a room where I can stop running instantly and be safe and with a first aider whereas on the road I can’t necessarily do that.

The whole process is a strange conundrum. Most people won’t get this (sadly including the best neurologists in the country) but I have to work really hard while I’m on the treadmill to get just the right amount of concentration to control my seizures (if you don’t get this it might as least open your eyes to some of the complexities). I can’t look at the other equipment because thinking about the different types of co-ordination required to use them sets me off, I haven’t experimented with watching music videos or listening to music as dance routines has always been a bit of an issue (I’ve been watching lots of made for TV movies instead) and I also haven’t progressed to taking my cap off yet as I don’t like the feeling of my hair moving, so I’m the only person in a warm gym doing cardio intensive exercise wearing a hat. This is all odd stuff I know but I just wanted to explain it, it’s strange to be physically capable of doing something but then having to put so much (and at the same time not too much) mental thought into it.

Anyway, ramble over. I AM RUNNING AGAIN! It feels so bloody good to say that. I’m not setting any more goals right now (perhaps I might work on getting the anxiety crutch hat off!), 5 km is pretty tiring at the moment, things get a little wobbly around the 28 minute mark) and I’m going as many times a week as I can so I do need to keep myself in check in terms of pushing myself too hard.

My message for those with chronic conditions from today’s post is; if you find yourself physically or mentally able to try something which you used to enjoy from your “old” life (yes yes, I know therapy teaches us we aren’t supposed to use those terms but whatever!) then please give it a go. Even if it scares the absolute shit out of you try and find a way to enable yourself. Research how to make a safe environment, get your friends and family to push you and it doesn’t work you haven’t lost anything. I know how it feels when your body lets you down, I really do, and I know the fear of that is crushing, but if you have even an inkling that the time is right, set your expectations really low and give it a go.

I really had resigned myself to never running again and whilst it’s not the way I wanted it to be, it IS still running and at the moment it’s making me very happy. That £35 a month membership is worth it’s weight in mental health gold, especially when I compare it to the £70 an hour I was paying for therapy!

Welcome to the Borg- Epilepsy and Families

This is my second post for the organisation Living Well with Epilepsy (www.livingwellwithepilepsy.com) for their November Epilepsy Blog Relay. Every day in November a guest blogger will write a post for their site to help raise awareness, give support and try to eliminate stigma. You can read all the other entries on their site.

My subject this time is epilepsy and families.  I found this quite a challenge because it hurts to acknowledge that having uncontrolled epilepsy has had an impact on my family. I hate that changes have had to be made to accommodate me and that I’ve dragged my Collective along for the ride (random Star Trek references are in homage to my Dad by the way, as he used to refer to the family unit as the Borg).

Sometimes when a ship gets wrecked the treasure is buried so deep it’s impossible to believe there can be any, but with enough patience and perseverance something good can come of everything.

I’m keeping it simple today and going for the “two stars and a wish” format. This is a primary school concept for marking children’s work whereby everything you mark gets two stars (positive comments) and a wish (something to work on). If you’re struggling with a long term health condition I’d really encourage you to do the same. The stars might not sparkle very often but once you’ve acknowledged what they are you can look out for them. During the next week or month try and be aware of what is happening around you. If you don’t have an immediate family use your extended family or network of friends. Try and find two things which are positive that are a direct result of your condition and notice how they affect that network. Write them down if you need to (yes I know the memory thing is very real).

My first star is the gift of time. The work-life balance is very real and having been forced into unemployment I am fortunate that I am now able to devote much more time to my children. My light-bulb moment for this star occurred this week. They have both returned to school and are exhausted, overwhelmed, and emotional due to the change of pace (and a tad hormonal). Yesterday evening I was able to mop tears, pack school bags, soothe frayed tempers and placate with sugary treats in a way I wouldn’t have done if I was at work. This was all mid-seizure (we’re a dab hand at dealing with those as a team now).

Don’t get me wrong, this isn’t me guilt-tripping those who go to work (I would be there if I could) or me mollycoddling my children. They aren’t small, they can pack their own bags and do without a fuss if they aren’t feeling a bit fraught, but I’m available so I am grateful that I can help them. I can’t ferry them around like a regular mum can but I can give extra help in other ways. They deserve extra hugs for supporting me.

My youngest daughter is leaving primary school this year, she is capable of walking herself to school but she has asked me to carry on walking her half of the way because she enjoys holding my hand and chatting to me. I couldn’t do this when I was working. She is independent enough that she doesn’t desperately need the practise and I’m free, I don’t have other morning commitments so I’m pleased to be able to do it.  I’m rarely “too busy” to do things for them these days and as much as this feels like a horrendous curse it is also a blessing.

My second star goes to our superpowers; my epilepsy has made each of us as a family unit have to step-up. It’s not nice being forced to change but again some changes can be positive. I think this is a great way of helping other families cope, especially if they have young children as it gives them a special task to perform so it doesn’t sound as scary e.g. “Mummy/Daddy are going to give you the superpower of bravery. Sometimes you might need to use it but it’ll be okay, because you’ve already got that power and so you just need to remember that that is your special job”.

My own children are too old for bestowing invisible powers upon but they have developed them unconsciously nonetheless. My elder daughter has become braver; she’s the one who will sit with me during seizures without freaking out which is testament to her bravery but it’s also become evident in other aspects of her life; she doubts her own abilities less, steps out of her comfort zone more and has even (this is the benchmark) slept with spiders in her room!

My younger daughter has become more practical, she’s eleven and cooks like an absolute whizz. It’s how she deals with crisis, boredom or stress (all of which we’ve had our fair share of)….as superpowers go it’ll stand her in good stead for the future and at least we’ll never go hungry if things get really tough. She can also sew pretty well and is chief present wrapper and card and letter writer…she’s like epilepsy’s answer to a Land Girl.

My husband has (although he’ll be reluctant to concede) become more relaxed. We were both pretty high octane people in terms of getting things done and when I lost my own choice in the matter he took up the mantle for us both. It wasn’t sustainable, he was heading for burn out by doing two parents’ jobs at full throttle and I’m so pleased that gradually things have slipped and he has sussed out not everything is urgent or essential. Because life is driven by my new pace he is actually sometimes pretty chilled (which isn’t something I ever expected to say) and is seeming to enjoy it more and more.

And lastly,  it’s not much of a superpower but I guess in cat world he thinks he’s winning at life; our cat has become even more rotund. I’m at home a lot of the time which equates to regular snacking for him. Verdict is out as to whether that counts as character development?

I don’t want to dwell on the wish element because it was always going to be a bit crap but in terms of my family I wish that we could be carefree again. I sincerely hope that the rest of Team J don’t carry round all the baggage I do in my head but I think I’d be naive to think that every time we go out the children don’t think “I hope today is a good day”. We do have good days, but they aren’t guaranteed anymore so we have to celebrate them afterwards instead of expecting them before.

Triumphing over adversity is the kind of cliche I loathe but I suppose expressions do become ingrained for a reason. Don’t dwell on your own wishes but do take the time to find your stars and let me know what they are.


An epileptic abroad….

Small disclaimer first; I’m sorry if the title of this post upsets anyone. For those outside epilepsy circles some people don’t like being referred to as ‘an epileptic’ instead preferring a person who happens to have epilepsy. I’m not being intentionally insensitive but the truth is this phrasing doesn’t personally bother me, it flows better in a literary sense here and as this is my personal blog not something I’m paid to do I’m not too inclined to change it.

Now onto the good stuff….

I’ve just been away with my family for eleven days and in the run-up this holiday has been a big concern for me. I’ve been stressed about logistics and so worried about ruining what is essentially our main familial event for a really long time.

I’m so happy to report that the results were holiday 1, epilepsy 0 (well about 9 good days out of 11 so I’d class that as victorious).

I started making notes during the holiday, ready for this post (on the really bad few days actually) and I was gutted that I was having to record some really unpleasant things which were happening but, on reflection, we had an amazing time and made so many memories together so I’m pretty over the moon. I wish I could say it was through perseverance and mind over matter but I’m afraid epilepsy doesn’t work like that, no matter how it might seem. It was actually achieved through hormonal fluctuations and kick-ass drugs but regardless, we got to have a great time and for once epilepsy didn’t win!

The Good

I swam every day with my family (not strictly recommended by neurologists but I was mindful of my limits), including all the water-slides, I used pursed lip breathing to help me cope with the queuing for these as it makes me anxious which can then make me seize and it worked most of the time.

I also went in an escape room. This is something which epilepsy me would definitely not normally have done but Marc and I added ourselves to the booking at the last minute (which was a good thing anyway as it was really hard and quite scary so I don’t think my daughters would be been able to do it on their own).

I don’t make impulsive decisions anymore and I often don’t do planned things if they involve any degree of complexity because I fear they’ll cause a seizure so this was a really big deal. Although I was exhausted at the time (so did quite a bit of propping up the wall) I really enjoyed it, it was great to use my brain and be forced into negotiating (read purposeful arguing) with my family in a confined space for an hour!

I also walked miles around Disneyland Paris with no pain, anxiety or jerks. I went on all the big thrill rides with no issues at all (I have literally no idea how my brain can happily be subjected to insanely high speed, gravity defying feats but it can’t make a sandwich!) and came away feeling so happy because I enjoyed myself but, more importantly for me, my family got to have their wife and mum back for a bit. I didn’t even have to rest more than the others because we were all knackered anyway. The energiser bunny mode which epitomized my life pre Sept 2019 kicked back in for four days.

The Bad

This bit is mainly for fellow epilepsy sufferers (or in the vain hope some superstar neurologist will read it and have a lightbulb moment about how to fix me) as I don’t want it to make it sound like our holiday was a disaster, but it is always helpful to share experiences so we know we aren’t alone. It also helps me contextualise the highs so I can remind myself that sometimes I can bounce back from dark days.

I’ve been on a progesterone only pill for about five months now to supposedly address the catamenial side of my epilepsy (related to monthly cycle) but it’s debatable whether it’s doing anything.

On days 26-28 approx of my cycle while we were at CenterParcs in France I was in a pretty bad way. The whole reason we booked here was so Marc and the girls could go off if I was struggling without it limiting their holiday, but as it happened we were all back in the cottage anyway during the worst moments. I had two afternoons in a row of bad jerks, absolute exhaustion (like to the core of my bones with no discernible reason and muscle pain) which I tried to sleep off only to have a very fitful (not in the epileptic sense) sleep and wake up feeling like electrical current was running through my whole body for a really long time.

These episodes make me extremely emotional and convinced I’m going to die and I swear they get worse every month (although Marc assures me I tell him I feel like I’m dying at this point every month). It’s not something which can be logically be put into words.

After I’d made a partial recovery we went bowling at CenterParcs on the first bad evening which also ended up making me really distressed. My coordination was playing up and a girl next to us had dungarees on…..which got me started on the “woe is me”s because I struggle with doing up complicated items of clothing and it reminded me I can’t wear dungarees. They were also playing music and I couldn’t dance which made me more miserable and the final nail was being surrounded by people drinking alcohol, another no-no for me!

It was also upsetting as we went to Disney village on the second bad evening (after I’d taken a sedative so I could leave the house) and I was acutely aware of people in wheelchairs everywhere. At that point I was convinced I had MS (my own personal verdict is out on that one, will update if and when I know more) and that this might well be my last holiday where I was mobile. Pity party was in full flow by this point.

As I’ve already described I pre-emptively took my rescue medication every day while we were at Disneyland. It was actually the time of the month when I’m supposed to take it anyway but it also meant (barring a short 15 minute seizure every morning while it kicked in) that I could function normally.

The interesting part is I also became very aware that I barely used my hands and arms at all for anything during the Disney part of our trip and I’m becoming more and more convinced that this is the root cause of my issues. The benzo dulls the signals but the most effective solution is not to use my hands for motor skills. I’m fact whilst swimming I noticed that if I tried to coordinate into a swimming stroke I felt off-kilter but plodding around using just my legs I was fine.

Unfortunately, as I’ve discussed in the past, not carrying out motor skills isn’t a real life, long term solution as I don’t live in a theme park……I just really wish there was some way of proving and treating whatever crazy nerve damage or malfunction has taken place……or someone even explaining to me properly what is going on.

And The Ugly

I had no intention of ending this post on a downer so I’ll keep it short and sweet, enough murky water has passed under the bridge now for it not to bother me as much as it once would have but I have noticeable hair loss now….medication side effect; the front of my parting is receding and I can see (possibly more than others would notice) that my hair is thinning all over.

I’m due to see the neurologist in a few weeks so I might (or probably not) have some tedious medication tweak to report back on.

Au revoir!

Managing relationships with epilepsy

Apologies for the lack of recent posts. The reason was because I wanted to be able to give some kind of update and sadly because nothing has really happened (yawn) there hasn’t been an update to give. I had a lumbar puncture a few weeks ago (which is a medical procedure I would NOT give a five star rating. I have a pretty high pain threshold but I found it quite unpleasant, akin to a 30 minute smear test in the spinal column was the most fitting description I could find). I found out two weeks later that there is a fairly high degree of certainty I don’t have multiple sclerosis. Considering I had no idea that was what they were testing me for, the result came as a relief but also made me feel rather unsettled.

Aside from that, more drugs, more side effects, same amount of seizures. Plus ça change, plus c’est la même chose, and so on.

It’s the school holidays at the moment, so I have my girls at home. This means less pressure to complete the school run (so less seizure-inducing morning rush) but more pressure to make sure they don’t miss out on having a good holiday….although if I’m honest their current idea of a “good holiday” seems to be sleeping for 13 hours straight!

In terms of this latest post, I’ve been lucky enough to be asked to collaborate as a volunteer with the media department for the UK based charity Epilepsy Action. I’m really excited about this, but realised it does mean I need to up my social media game again and hopefully produce some engaging posts.

I’ve chosen this topic because living with epilepsy (interchangeable with any chronic condition) really skews the nature of any relationship which you form, be it romantic, familial, friendship, employment or short term social. As the sufferer, even extending a simple conversation beyond pleasantries can leave you questioning at which point you might need to mention the elephant in the room. It’s not an elephant which the other party can see (unless you have visible side effects like tremors) but you can feel it, and try as you might it’s hard not to feel compelled to bring it into conversation.

Negotiating how much of your health condition to bring into a relationship is a minefield. I’m not in a position to tell anyone how to do this, as every relationship is different so this is based on my feelings only. I’d love to hear if any of them strike a chord though.

When you are with partners, family and friends epilepsy makes you a burden. I don’t mean this in a “woe is me” sense but, in terms of practicalities it does; you might need help with transport or physical tasks, help remembering things or with providing information about your seizures at hospital appointments, you might also need financial support. Even if all you ever need from another person is a weekly lift somewhere because you can’t drive and there is no bus service, this alters your relationship. They aren’t in any capacity your ‘carer’ but you are reliant on them in a way which you might not be if you didn’t have epilepsy. The more things you have to rely on someone for, the more the balance of power shifts.

This all sounds very cynical I know, and I don’t necessarily mean to imply that every relationship with someone with epilepsy is doomed because of this, it’s more that I seem to always find phrases like “would you mind…?” or “can I just ask….?” on the tip of my tongue followed by profuse apologies, whereas healthy me wouldn’t have questioned asking for a lift (or lots of other favours) at all. It’s possibly knowing that I can’t return the favour which makes me feel inadequate and even if it doesn’t matter to the other person it does to me. Having people run around for me makes me uncomfortable.

I’m not in employment but I know from reading posts in epilepsy forums that discussing your condition with employers, either future or current, is hugely problematic. I don’t know about the intricacies of employment law and discrimination outside of the UK but I’ve read hundreds of posts from people who have either been denied positions or lost jobs because of their seizures. As a result of this people become scared about disclosing so end up in dishonest relationships with their employers, which is far from ideal. I would personally rather reveal that I have epilepsy, but even when being honest the overwhelming emotion is embarrassment (mostly through lack of awareness about epilepsy) because there is always a sense that the other person is then fixating on you foaming at the mouth and wetting yourself. This once again creates a strange balance of power which will probably never be discussed, the elephant rears it’s head once again!

Having read the last paragraph back I suspect the same rhetoric also applies to looking for new romantic relationships when you have epilepsy, in terms of deciding when to disclose and assess how much of an impact it’ll have on the relationship. I can never quite decide whether The Undateables on Channel Four is a useful programme because it helps raise awareness or whether it’s just another form of cruel car-crash TV. I wonder how the same format would work with hidden disabilities?

The weird flip-side of all this is that despite feeling burdensome etc. epilepsy unfortunately also makes you incredibly egocentric. I’ve spoken to plenty of people who claim it doesn’t define them (I’m sceptical, so shoot me!) but I am honest enough to admit that in all my relationships my inner voice is constantly screaming “DON’T YOU DARE FORGET I’VE GOT EPILEPSY”. You develop an unquenchable urge to make everything all about you. No-one is allowed to feel as tired as epilepsy-tired, no one can have possibly had a bad a day as you, and even if you don’t voice it, other peoples achievements aren’t quite as lofty as yours because they haven’t struggled as much. You are the ‘queuer’ in every conversation, waiting to gently steer it back to you.

So yeah, in a nutshell, relationships with long term health conditions are prickly at best. Sometimes you don’t want to talk about your condition because you are so sick of it defining you but simultaneously feel neglected if it isn’t brought up. Tolerance is key, as are keeping communication channels open and being prepared to be shouted down on a regular basis. As much as it might hurt, it is probably helpful for the other half of the relationship to tell you to get over yourself once in a while as well…….this is why employment is such a necessity in my opinion, as it doesn’t give you time to wallow. I had six weeks of seasonal work (from home) in June and July and although I have no concrete proof, it’s the healthiest I’ve felt since September.

This conundrum is another I don’t have the answers to I’m afraid, feel free to venture any suggestions in the comments section or via Twitter (part of my project to raise my social media profile in a more meaningful way….if I’ve done it wrong please put me in my place).


Epilepsy Blog Relay: Patience is a virtue

This is a special post written for an epilepsy organisation called ‘Living Well with Epilepsy’ (www.livingwellwithepilepsy.com)

A few times a year they organise an epilepsy blog relay which means they invite epilepsy bloggers from around the world to write an article on a specific day of the month to raise awareness, promote their site and pass the proverbial torch to the next blogger for the following day.

The theme I chose is ‘epilepsy and everyday life’ and I wanted to share some thoughts about the virtue of patience and how you have to learn to develop it by the bucket-load to be able to cope with living with uncontrolled epilepsy.

The photo is of a wooden box which my sister bought me. It’s full of little metal talismen (is that the plural of talisman?). It comes with a key-ring pouch and you pick the one which you need most every day to carry around with you to remind you to think about that virtue (strength, hope, courage, patience etc) as a coping strategy.

One major element of epilepsy which requires patience is when changing medications and waiting for appointments. Nobody warns you it’s going to be loooooooooong! Even as the neurologists or nurses blithely write out your drug charts with dosage instructions when transitioning from one drug to another it never fully registers that they’ve organised the change over a period of 16 weeks! That’s a third of a year. A third of a year for potentially feeling awful (and often progressively worse as the dose increases) while you grit your teeth and try to remember that the therapeutic dose you are working towards might be the magic bullet. It’s really tough. It’s by no means unique to epilepsy but these things can’t be done any faster, so all you can do is learn to be patient.

The gaps between appointments drag horrendously as well, it doesn’t matter how much you rationalise that there isn’t any point in anyone seeing you if a medication change isn’t complete, it still feels like you are being ignored and you find yourself wanting to be pointlessly poked and prodded to see if there is something that has been missed.

The second reason which patience is relevant to my everyday life with epilepsy is that my neurons, in a literal sense, go haywire if I do anything too quickly. My personality is naturally pretty intense; I’m not content unless I’m insanely productive; so being reduced to a state where knowing the safest and most sensible way to get anything done is by moving at a snail’s pace has taken a lot of patience while I adapt.

I am getting there, time has passed and slow has become the new fast. Getting up in the morning takes about two and a half hours; this works for me. Most of the time I can minimise my seizures this way and if they do come, I wait them out by patiently willing my brain to calm itself down. The other alternative (because patience isn’t always a practical option if I have to hurry somewhere) is to take a tranquilliser. This speeds up the calming down process for me but I’m sure you can agree it’s not really ideal.

Cooking dinner is a slow process, gone are the days of the Jamie Oliver meals in minutes for the stressed nine-to-fiver in our house, everything is put in the slow cooker or oven roasted. It’s safer and it minimises the risk of burnt dinner and burnt me if I need to take time out for whatever reason. Again, with a bit of patience we still get to eat balanced meals every day.

I can’t drive so I have to walk (or use public transport) which usually takes longer, so it requires patience.  It’s not the nicest in inclement weather but it’s good for me and the environment so it has it’s benefits. Being calm is one of the key elements of managing my epilepsy so I just have to remind myself what happens if I do try to (metaphorically and literally) speed up.

I wish I could honestly say the world would be better if we all slowed down but I’m not quite there in terms of believing that yet. It’s okay though, sometimes going at a slower pace can be rewarding. I didn’t chose my circumstances and I liked doing everything at pace but slowly, slowly isn’t as bad as I thought it would be.

The last element I’d like to touch on in terms of raising awareness is the patience which those around you need if you’re living with epilepsy.

The patience to look on while we tantrum and rant about how badly things are going and how horrible we feel, while you can’t do anything to fix it. The patience to take on an extra load because we’ve started something and then realised epilepsy isn’t going to let us finish it and the patience to wait for us while we sit around looking lazy because our bodies and brains are exhausted or if we need to take a break half way through an everyday activity. My memory isn’t too badly affected yet but you might also need to learn to be patient while we struggle to get our words out or remember what we wanted to say. Unless you happen to be a nurse who specialises in chronic conditions we know you weren’t any more equipped to deal with this than we were. It’s just one of those things we’ve got to learn to work with together.

I hope this helps someone who is new to the journey, developing virtues doesn’t have to be as deep and meaningful as it sounds but reality of the situation is, unless you get really lucky, some things may take a really long time and the sooner you can learn to listen to your body the better you will feel, even if you can’t fix the seizures.