“My turn shall also come; I sense the spreading of a wing”- Osip Mandelstam
Here I am on a rather windy Monday morning writing my blog thinking to myself that we all get our turn.
We should all be given the right to say what we want and do what we feel to help ourselves and the people around us. As long as we aren’t causing extreme offence then surely we are entitled to voice our opinion.
Growing up with Epilepsy was something none of us wanted nor asked for however it showed itself whether we liked it or not. Since starting counselling again this appears to be the first thing that enters my mind when I feel a headache starting or when an episode hits me unawares.
Unless you can make your life that little easier by looking after yourself, eliminating the worry and disregarding the people who aren’t prepared to support you then the rest is out of your control.
On Thursday I returned home from work feeling rather worse for wear.
My head was sore, body was weak and my chest had decided to play it’s own game. After attempting to force my body to do a little yoga I realised that resting was the best policy therefore pottered around lazing on the sofa, ordering my food shopping with repeats of Downton Abbey in the background. I felt bloody awful and was wishing this cold would just disappear and leave me alone.
Whilst dosed up to the nines on paracetemols and my good old honey and lemon syrup the postman arrived delivering a letter for me which upon arrival I immediately identified to be a hospital letter. I knew it was coming and knew that neurology would be in touch to discuss my shakes and the possibility of having a family.
Typical Saz style I didn’t open the letter correctly ripping open the corners that weren’t meant to be torn and hoping that there may be light at the end of the tunnel.
Low and behold the letter was exactly what I’d anticipated. A letter from neurology asking me to pop down for a visit. Initially I’d expected an even longer wait than planned predicting that I may see my specialist after Christmas however it appears that they wish to see me sooner. Next month to be precise.
I didn’t know whether to smile or cry. As silly as it may sound seeing a neurologist is like standing in line waiting to go into a school exam to predict your future. It’s the worry of not being heard, it’s the hoping that they’ll understand where you’re coming from and whether they will make the necessary changes to benefit you not just rushing you out of their surgery because they have other patients to see.
After staring at the letter for 20 minutes I made my rounds called my husband before calling my parents.
Whilst speaking to them it started to sink in that times were changing.
I wasn’t a teenager anymore looking at how my life would pan out. I wasn’t sitting there wondering whether in ten years time that I’d be able to cope with my condition, whether I’d be capable of working or whether I’d be settled with someone I loved. I have accomplished those things, now it’s about something new, this is on a completely different scale and is the general progression of life on the basis you can and want children.
This time it wasn’t about just me, or my husband or my parents. It was about creating a new life, it was about expanding a family I thought (seizures permitting) that I may not have the opportunity to have however ultimately it’s the decisions my husband and I now have to face before bringing any children into the world.
Now it’s accepting that should my neurologist alter my meds and my seizures return will this have an impact on what we now want? I know it won’t alter the bond I have with my partner however will I view myself as being a disappointment should the worst happen? I’d like to think not because I don’t hold the cards.
I keep reiterating like all aspects of your life there is the control and the lack of it. Among many other conditions out there Epilepsy can call the shots on how your day is going to iron out and how you’re going to feel as the day progresses.
With me the lack of control is something that quite honestly has freaked out particularly when the subject of being pregnant is concerned. It’s the worry of will my seizures/shake effect my baby? Will I be alone when this happens or am I going to be held accountable should something dreadful happens?
After speaking with many people about this issue I’ve drawn the conclusion that worrying isn’t going to achieve anything. I’m in the process of spreading the wings I thought I never had and by extension are feeling stronger for it. As far as being pregnant with Epilepsy yes the risks can be greater, you will be monitored extensively however there are many women out there who HAVE done this therefore why should I just refer to statistics or worst still be a statistic.
Surely after research, discussion and deliberation I should do what I feel and should my neurologist come out with the worse case scenario then let’s just say I’ll cross that bridge when I come to it, plod on and enjoy what I currently have.
Whilst writing this I have seen my attitude change quite quickly on how I perceive myself and where I stand when the subject of babies is mentioned. Life is something that tests us on a regular basis. I can appreciate that life isn’t all about moonlight and roses, romance and simplicity.
It’s about knowing what you want, achieving what you can within reason and knowing that your heart and mind are in sync with one another. It’s about knowing that Epilepsy is a condition that effects so many out there . Although Epilepsy is a condition that infuriates me at times it’s something that has kept me on the straight and narrow and has given me the strength to carry on.
As for the rest of my weekend.
Typical Saturday which can only mean one thing. Dad and Saz time, spending money, putting bets on and spending quality time with my husband on a Saturday night with hearty food and a bottle of wine slating the music of today which is quite literally.. shite.
For those of you potentially wondering how I did I can easily say that the football season of 2013 has not gone the way I’d planned. I haven’t had a win yet (it’s only been going about 6 weeks) and I’ve not come into any money yet. I predict this to be a long winter.
Food wise I’ve been doing rather well. Salads aren’t my cup of tea therefore I’ve decided that the only way is to create healthy alternatives like butternut squash soup, my own vegetable soup amongst other delicious substitutes.
Exercise I’m getting there. The cold has wiped me out therefore it’s all about taking my time, persevering and squatting on. Overall I’m getting healthier however need to crack on the best way I can. I have to admit I was rather gutted not being able to exercise. How sad am I?
To conclude today’s post. We all get our turn and we can all spread our wings.
In my eyes it’s about getting rid of the rubbish and seeing the wood from the trees. I sympathise with the difficulties your condition may bring however knowing that you are making the right decisions to benefit you and not everyone else should be your top priority. Those people have their own lives to lead as you have yours.
Ignore me if I’ve said this before however my neurologist told my mam upon diagnosis that “Saz may not grow out of her condition but into her life” and you know what. He was so true.