I am hoping that by doing this blog other people with epilepsy will contact me and share their experiences. In particular my husband and I have found that having a baby and coping on a daily basis somewhat stressful. Our little girl, Rhiannon, is a beautiful and happy baby.
Whilst we knew before having her that my having epilepsy would make how we cope with being parents different to the average parent it is sometimes difficult. For example we are conscious that were I to have a fit and be holding Rhiannon that I may hurt her. To try and reduce this my husband carries her up and down the stairs at home. He takes her down in the morning and I look after her in the living room throughout the day. When Matthew comes home he baths her and takes her upstairs to bed. Only being able to look after her downstairs can be quite restricting. I can't put her down for naps in her cot for example. My neurologist has suggested carrying her up and downstairs in the car seat. Whilst I can see the logic this is not very practical, as by the time I have strapped her in, carried her upstairs and taken her out she would be totally beside herself as she doesn't like the car seat. If I go upstairs I therefore have to leave her downstairs and take the baby intercom system upstairs so I can hear her.
Having had several fits last month on the same day it has brought home the potential dangers of being an epileptic parent. Whilst we knew before having our baby that I could have break through seizures, especially whilst my hormones are settling after the birth the reality of having those seizures has really hit home. In particular my husband has found it difficult to go to work. For peace of mind, if nothing else, we have therefore arranged for family members to drop by each day. We have given them keys in case i don't answer the door. Whilst it would be impossible to have someone with us 24 hours a day it has certainly helped to allay our fears to a certain extent.
If anyone reading this has been in a similar position my husband and I would be interested to hear from you.
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5 comments:
Hi Lisa,
I just wondered if your epilepsy has prevented you from doing the 'fun stuff' that us mum's do- such as taking your baby to baby massage classes, going to mother and baby classes.
Thanks
This will probably sound silly but I'm 24 and having randomn seizures and my sisters and my parents have now become terrified of leaving me in the house alone. I have no warning before a seizure and I am finding it hard holding on to a job since late August because my hormones keep making me so moody you would think I was 14 not 24, lol.
I worry about being alone in the house but I do what you do, stay downstairs, go out sometimes so as I am around people who know me and know what to do. I take Epilim so I get tired, so I've found naps help.
I woke up last week in the toilet though with my legs in the air, I hadn't hurt myself too much apart from my bum, lol. I just keep hoping things will level out.
Dear Anonymous,
I have not gone to massage classes myself, but can't see why you shouldn't.
Rhiannon and I play on the floor at home, we sing, play with toys and I take her out in the pushchair for fresh air and to visit friends and relatives.
If you are nervous about going to classes on your own take a friend or relative with you for the first couple.
Speak to your health visitor - they can tell you where the nearest classes are and if your epilepsy poses any risks at these classes.
The only stuff I don't do is carry my daughter up and down stairs or bath her. I guess there is always the risk I may have a fit but people without epilepsy could suddenly turn ill or accidentally fall. I try to be realistic and reduce the risk of accidents where possible but I would think that if you were at a class there are other people around you anyway and baby massage is usually done on the floor so your risks should be low.
Hope this helps.
Kathryn,
Sorry to hear that your epilepsy is causing you some problems. Have you been diagnosed long? I used to take epilim when I was first diagnosed and then took it successfully for over a decade with just the odd break through fits once the dose was sorted. I did find that it made me tired (and then moody because I was tired). My Neurologist changed my epilim to epilim chrono. This was apparently a slow releasing tablet which meant that it released into your system more slowly and therefore did not make you as tired ( I did still have occasional naps but did not need them every day). I was finding before that I was nodding off in college classes mid afternoon. Whilst I am not qualified to comment on your tablets if you are super tired or you feel the side effects are not helping you to live a normal life, or the medication is not controlling it as well as it should do then speak to your Doctor. If you are with a GP rather than a consultant ask them to refer you to a specialist to review your medication. Take a relative with you to the appointment for moral support. It might take a while to be seen but it certainly doesn't hurt to have a review.
As for your family, they sound a bit like my husband. I sometimes think it is worse for families as they have to watch and look after us after the fits. WE have to take a more practical approach and try to get on with it. At least you have a loving family who are looking out for you and want to help you. I know it can feel claustrophobic as well but it is definitely better that they care.
I text my husband at agreed times when he is at work so he knows I am ok. We have relatives with keys to the house and if they visit and I don't answer the door they can let themselves in.
You need to chat to your parents and sisters to agree how they can look after you without crowding you whilst you get your epilepsy under control.
Sorry to hear you hurt yourself last week. An occasional hazard unfortunately. I have had a very similar incident myself years ago, only my mother in law had to come in and save me from the bathroom!
My epilepsy is a little chaotic at the moment and like you I am hoping my hormones (post pregnancy ones for me) will level out and my break through fits will stop.
I don't know what to suggest about your job. What job were you doing? Was there a reason why they could not make accommodation for your epilepsy?
Hope this helps. Try looking on the Epliepsy Action website as well. They have loads of information and there is a helpline service too. I used the Email helpline to ask some work related questions and they were really quick to respond with lots of infomraiton about my rights as an employee. Connection below.
www.epilepsy.org.uk/services/freephone.html
I hope this helps. If I have created more questions than I have answered let me know.
Lisa
Hi
My husband has epilepsy and I worry about him constantly. He was diagnosed only last year he is 36 yrs old. He had a grand mal which lasted 20 minutes. It was very frightening for me not knowing what to do etc. So I can imagine what your husband is going through.
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