Seizures & More Waiting.

It’s been a month since I last blogged. Do hate when real life gets in the way of my blogging time! I guess it’s been a combination of not really having anything new to write about, waiting for gynaecology appointment to come through, feeling a bit numb and family stuff that has stopped me writing. I started this blog so I could write about my experiences trying to conceive whilst also living with epilepsy. I realised lately that I have been lacking in writing about my Epilepsy and have been focussing more on the trying to conceive side of my life. With that I’m going to start writing more about my Epilepsy and seizures…in theory. Let us face it I can ramble quite a bit.

I am currently two weeks seizure free. My seizure free is not the same as many others though. This is just in reference to my Tonic Clonic seizures. I still have Micro Absence seizures daily but as they are so small I often don’t even notice I’ve had them, unless they happen mid conversation. I’m lucky as my Pro-Longed Absence seizures have seemed to stop which is a huge relief as often they were more difficult to handle than a Tonic Clonic seizure. Anyway, I am two weeks seizure free as of yesterday. My tongue is fully healed after being badly bitten and the lump of scar tissue on it has increased yet again, but other than that, no permanent damage….aside from the usual brain damage each seizure causes but that’s a story for another day. I don’t know if this happens to anyone else but for a few days after a Tonic Clonic seizure I become quite scared and jumpy about the area in which my seizure happened. My last one happened in the bathroom just after brushing my teeth and for a few days after I became quite unsettled every time I was in the bathroom. I kept thinking I could see things moving out the corner of my eye and the whole room just felt like it had a black bad energy cloud surrounding it. This has since lifted thank goodness but has certainly not helped my stress levels lately.

Back to the waiting game surrounding my gynaecology referral. I got my appointment through the day after my last seizure. This tickled me as they think I have PCOS due to previous Epilepsy medication (Sodium Valporate/Epilim) I had taken at a high dose for a relatively large amount of time and there I was getting an appointment a day after a seizure! My mind just found it amusing that the two were seemingly linked yet again. As I was saying I got my appointment through two weeks ago and had my appointment on Monday. Now from what my Neurologist had said to me and from the letter I received I was led to believe this was it, this was the day I would be tested. Not necessarily get results/answers but at least I’d be nearly there. I cannot tell you how wrong I was!

After a short wait in the hospital I was called in but not by the consultant I was there to see. Apparently his caseload was very big that day and so I was to be seen by a female Dr in the same department. I wouldn’t have minded if this Dr had, had any clue as to why I was there. I sat there for 10 minutes explaining my Epilepsy history, medication, irregular periods, back spots, hair growth, weight, smear tests and that yes, my partner and I are trying for a baby. This makes me sound quite an irate person but I did find it frustrating when I could see amongst my notes a letter from my Epilepsy Consultant providing the exact same details I was spouting out. After repeating the same info that if she had read my notes she would have known, I was given blood test forms, a referral form for an ultrasound and told to go back to reception.

Once back in reception the harassed looking woman behind the desk told us they would be in touch regarding a follow up appointment and that I’d need to take the ultrasound referral to the X-ray department. Once there a rude lady told us they weren’t signed by a consultant so I had to go back to the department to get them signed, why she couldn’t just ring and ask who had sent it I have no idea. This is where yo-yoing between the Gynaecology and X-ray department started. Eventually the rude woman took the forms and we were dismissed with a leaflet telling us to ring a number after 3 days to get an ultrasound appointment. The saga doesn’t even end there! We then got sent to the general outpatients department, where reception told us to go to the blood section and take a ticket. After waiting a while we managed to corner a blood nurse to ask if we were indeed the right place. After looking at my forms she asked if I was on day three of my period. Confused I told her I wasn’t and I’d had it last week. We were then told that the tests my forms were for could only be done from blood taken when I was on day three of my period and so I’d have to come back to a drop in clinic whenever this was.

As you can imagine this wasn’t the most of successful, helpful or straightforward of hospital visits and I did shed a few angry tears at the whole thing! I don’t even know how I should feel about it all. One of the main reasons I was being tested was due to irregular periods, what if I don’t have another period before I get my follow up appointment?! What if it’s a ridiculously long wait before my period? Irregular periods are annoying anyway but wanting one to come and just waiting endlessly so you can have tests regarding fertility, that is just torture! My dad tried to comfort me by saying at least I was in the system now, closer to answers than I was before and it will be ok to which I entered full on hard-done-by teenage mode and shouted at him that “he doesn’t understand coz he has kids”. It was so stupid we both started laughing.

My OH is still wavering between actively trying for a baby and just going with the flow, so to speak. Apparently this basically means, if it happens it happens if it doesn’t then we can’t be upset. He has said this is for a variety of reasons. In particular, waiting to see what the results of all these tests are and waiting until next year as we have such a big year ahead of us already. When I say big year I mean: various big family birthdays, wedding planning, potential job changes, doing our house up, epilepsy check ups, holiday, friend’s wedding and our wedding all alongside the yearly trauma/joy of Christmas with family to endure, which will be our first as a married couple! I love him to bits and I know he is just trying to decrease the stress in my life as it is one of my Epilepsy triggers but I’m just not very good at not knowing what us happening. I like planning. Organisation is my friend.

So there we have it. Still no answers regarding PCOS, seizures still very much apart of our daily lives and still a bit numb to how I feel about it all!

Blog/Tweet soon x

Please do feel free to comment on here, tweet me ( @HopeEpiMum ) or even direct message me.

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