Sometime it hurts … badly! I am not normally one to complain about aches and pains from my dystonia/epilepsy but tonight it really bloody hurts!!!.
My clonazepam has started to wear off in regards to dosage so now I am not getting through the night without any episodes or night terrors/epileptic attacks and today my whole body is just aching from head to toe.
I havent trained tonight which is quite frustrating as I really need to be keeping on top of my progress in regards to future events I want to partake in this year. My co-ordination has been horrific during my sports and its taking me longer to pick things up or to learn new techniques.
I am not one too give up when things get tough so I definitely it think it will wear off eventually. I hope it wont impact on any training or work related activities for much longer as I am finding it harder and harder to focus on anything.
SO glad most people are understanding when I call them by the wrong name, forget their face or think they are someone else LOL.
Fingers crossed for a better February!
As most of you are aware I started my new medication alongside my Keppra just before Christmas for my seizures during the night. I thought I would do a little update on how it feels to be on these tablets after 4 weeks of the initial onset.
To be honest I cant lie and say its been easy. Clonazepam is a horrible drug and how anyone can be dependent on it is beyond my recognition because I don’t like the side effects at all !.
To start with it made me feel sick and I lost my appetite and I felt generally awful. I wanted to sleep all the time and getting out of bed was physically impossible for me . Its also given me acne again and dry skin. I still struggle to get out of bed and this will be my 5th week because it puts me in such a deep sleep i swear I cant even remember going to bed or falling asleep on a night .
However it has fully stopped my seizures so far on a night. I have only had one episode in four weeks which is amazing and the ones I were having before were pretty horrific and made my body feel like it was on fire for days. So I feel like being so tired is a small price to pay for being seizure free(ish).
I know that it can also be used for anxiety which is something I have never suffered from so could not really comment on the “relaxing” effects of it but I know that if I take it too early before bed I am just sleepy and cant focus and then I am asleep 10 minutes later. This is also partly to do with the fact I take synthetic melatonin aswell.
All i would say is if your neurologist or consultant is considering prescribing you this then you need to really think about whether the benefit will outweigh the side effects. Its a strong medication which can seriously alter your day to day life. If taken, proceed with caution and never take more than your stated dose. I am on 1/2 of a 500microgram tablet and that to me knocks me for six, if you take a whole tablet by mistake, do not fail to ring your GP or urgent care center immediately.
So I thought now would be a good enough time as any to talk about my long term goals for 2017. First of all I can not believe how quick another year has gone and flown by. It only seemed like yesterday I was writing my goals for 2016!
So really what I would love for Christmas and I really thought the graphic up above was quite apt, is a cure for epilepsy – not just mine but for every other sufferer young and old!. However, this is definitely not going to happen anytime soon (I dont think!) so I thought I would write some of my long term realistic goals out.
So for 2017 my number one goal is to finish the last of my education ( que 6 years at university!). I have undertook my Professional graduate certificate in education to qualify as a teacher in further education with my subject specialism of law. Granted so far it has not been without its struggles and I have probably had more days off than on the course but by some miracle I have still managed to pass all my work so far!.
As some may know the one and only thing that really keeps me sane is sports and art. This year I took up bodybuilding (July 2016) karate (April 2016) and gymnastics (August 2016). Some may wonder why would I take up all of these sports? well when you have epilepsy and you feel like rubbish the last thing you want to do is mope around the house!.
These sports have given me a new lease of life after giving up running in 2015 due to being far too ill to carry on running. I came to a very sad decision that the more I ran the more it induced my seizures and after six year I gave it up after doing the Redcar half marathon as a final farewell!.
In regards to sports by the end of 2017 I would love to be between a Green and Blue belt for karate so I can start working towards my brown belts and eventually my black in 2018. I would love to compete in a toned bikini competition summer 2017 just for the experience and joy of doing what I do and I would love to reach my level 1 in gymnastics. I can not do gymnastics for competition because my epilepsy hindered my ability to have sufficient co-ordination, balance and focus but I love the flexibility of it and being able to work towards a grade.
In terms of art I have been too ill for the past few months to put pen to paper so que this blog I have just gone on Amazon UK and spent up on new art supplies.
After winning an award for my photography this year (Highly commended 2016 BrightWater) I felt re-inspired to get my paints back out and so this is what I will do !
Last but not least, I will raise more epilepsy awareness this year. I plan on doing lectures in college on epileptic first aid and my charity run should be up and running for the 3 year !!!. I have no doubt this will all happen and if anyone knows any colleges/schools that would like this free of charge please do not hesitate to contact!.
I really hope everyone elses 2017 will be as bright and beautiful as I believe mine will be and always remember to kick epilepsy’s butt – never let it kick yours!.
Tonight has probably got to be one of the most frustrating nights I have ever experienced. My epilepsy has not been getting better lately, in fact much worse. My last neurology appointment was spent discussing ways in which I could control the new seizure activity that I was experiencing on a night and sometimes during the day. Tonight I did my usual routine of going to the gym straight after my teacher placement. I felt absolutely fine and I was raring to go. However it seems my epilepsy had other plans for me .
Within 30 minutes of starting my session my left side had decided to give way on me, this meant every time I tried to lift a weight it just ended up being lopsided and I ended up dropping it. Not being one to give up I insisted on keeping going (big mistake!) and I ended up feeling spaced out which normally means a seizure is imminent!.
Within 5 minutes of sitting down I got back up to re-start and I just blacked out for maybe 5 seconds. I dont really remember much but my boyfriend catching me as I fell. I definitely was not with it and it took me a good few minutes to come round. I eventually had to admit defeat and go home early!.
This is probably only the second time I have had an episode which never normally happens during daytime. This evening was the only time in a long time I have ever felt like crying my eyes out and I am not ashamed to admit that. It took alot for me to reign my emotions in and I definitely felt angry and frustrated at what i now call “one of my bad days”.
I have just started clonazepam on top of my keppra which will hopefully kick in soon and I may be controlled for a little while longer.
I have always said giving up is not an option and I still refuse to back down. Everyone has advised me not to go to the gym by myself, to be careful , dont do too much etc but I refuse to give up without a fight. There may come a day when I do have to stop and I do have to give in and admit defeat but today will not be that day.
What tonight has taught me is that the support network I have is amazing and I could not cope without it. I am lucky to have amazing neurologists (I have two!) and amazing family, friends and partner.
Heres to hoping 2017 will be a seizure free year!
I am so excited to tell you I completed another step in my journey- graduation as a master of law. I can not begin to tell you how proud I feel of myself and my journey to get to this point.
I can not lie and say it has been easy. Infact its been extremely difficult and at one point I remember sitting and crying on my bed, telling my mother I did not see the point in it anymore and I was going to fail and I wanted to give up and give in. Probably not one of my finer moments but I wont pretend we dont all feel like giving up sometimes.
Often I will sit and reflect on my life and even the missed opportunities that epilepsy took away from me – I do sit and think sometimes what my life would of been like if i had been a healthy person and could I of achieved better? higher? reached further?.
As an epileptic I probably speak for most when I say we all have self doubt and deep reflections. But graduating with my masters made me realise that I have come so so far then I ever thought possible.
At my worst point of my illness I could not even work, I could not study, I did not even see myself holding down a job in the near future. Now I have a masters degree in law, my own business, a job as a maths teacher and an amazing placement teaching law on a public services course at a college which has supported me through everything.
I guess what I am trying to blog and get across is that when I/ you feel like everything is crumbling and epilepsy has stolen something from you life, take a minute to reflect on what has actually gone right in your life , what has made your more determined to succeed, how have you managed to defy your illness?.
Dont let anything hold you back, as I said to one of my peers today ” you have to take a great fall before you can get back up fighting”.
I can believe its been 5 months since my last post. So last time I wrote I was undergoing sleep tests, lumbar punctures and neurology reviews. I had a lot of undiagnosed symptoms which were a huge concern for myself and everyone around me at the time.
One of the most scary things to happen to me lately is a new batch of epileptic attacks on a night. I recently started noticing them a few months ago and passed them off as part of my sleep disorder but after an initial sleep study, the scary reality has been confirmed that I am actually having seizures again!.
This has made me sad as I have been relatively okay after my dose of Keppra was moved up to 1500g but now after a review it seems I will need to start on Clonazepam as well as Keppra and Circadin (synthetic melatonin).
I am not entirely sure what kind of seizures I am having but I think they may be tonic seizures. Basically I wake up paralysed in a black darkness and I can feel my body thrashing around in bed and if some-one is there I can hear them try to talk to me, then I black out and eventually wake up dazed and confused.
These have been happening a lot probably a couple of times a week, so much now I have to keep a seizure diary to see what is occurring and to ensure I do not injure myself. (cue the baby proofing of my bedroom).
I believe it is easy to get down about these things and think that you are the person who is worse off than anyone else but I had a little though that if a person with cancer was given the chance to live a full and complete life but had to suffer the side effects of cancer for the rest of their life they would agree no hesitation, so really I am been given a chance to live a full and complete life with a few adaptions either way.
One thing that has made me realise is that I would like to educate people more on Epilepsy in schools, colleges and universities. Therefore I am going to try and make a pledge to go around as many educational establishments as possible and raise awareness as much as I can in 2017.
I hope then it will give me a fresher outlook on my diagnosis.
Love J x
After having a particular bad day with my recently diagnosed functional dystonia and thunderclap headaches (all to do with my epilepsy apparently) it definitely made me realise that being sad is actually okay.
Why is it okay? well for the past 3 -4 months I have been doing great. No pain, sleeping well, no tremors or spasms. And today ? I have had the headache from hell , could not stop shaking, my leg gave way on me (painful spasm) and now I can not walk on it, I have been dizzy and almost collapsed. Today made me realise, that being sad is the epitome of being happy. You must have a bad day , you must experience pain , you must be sad, to realise how happy you were to begin with.
Its quite an odd concept, but after watching a podcast on facebook from someone who said that being depressed is like comparing yourself to the sky and the clouds; you are the sky and depression is the clouds , the clouds will come and go but you will always remain. You arent the depression/ the sadness, you arent defined by it, you will never be taken along with it.
I cant ever really say that I am happy that I currently cant walk and I feel like I have been hit by a tonne of bricks, but they are the clouds and I am the sky, and I am going to be okay.
I hope you all learn this now, so you can learn to love your bad days too.