From a family’s perspective..

The first part of my life has now been written. Now it’s time to take a breather and focus on the people that have kept me together for so long. Those people are my family.

A good parent is a parent who wants to understand and who is prepared to ride out the storm when the going gets tough. I’m not a mother myself however feel that if I choose to have children if I turn out to be half the mother mine is to me then I will be a happy person. My mam and I haven’t always seen eye to eye however she is without doubt the person I admire the most.

My mam has seen it all and I am indebted to her for all the worry I have put her through.

My mam knows everything about my condition from rattling off dates, medication types, and neurologist appointments. She knows what makes me angry and how when I was younger in particular the condition was a touchy subject.

I’ve decided to dedicate a particular post to my family as they are without doubt the people who I can turn to in hours of need. Whether it is my immediate family, the in laws or my best friends who I would happily put in the same category as my family they all have had a massive contribution towards my recovery and my will to continue identifying the cause.

I cannot count how many times my parents and I have had the conversation in which I would question whether I was normal before repeatedly telling me that I was special and because I was a fighter I could cope with this. They have always given me the explanation I needed and if they didn’t know the answer they would make it their priority to find out by the end of the day.

I was very fortunate that my family encouraged me by pushing me in the right direction. They would encourage me to socialise as normal however had the trepidation when I was out incase a seizure would occur. They would always advise me that they were available at the end of the phone and always told me to take care.

I have always thanked them for allowing me to have a life and consistently tried to build my confidence. On occasions they never knew whether I was in a mood or whether it was my anxiety starting. Let’s just say it’s been hard however we are now all on middle ground.

Whilst fitting/shaking/having a panic or anxiety attack you are totally oblivious as to what is actually happening to you as you are what many would call it “Not in the zone” you are in someone else’s dream not your own and it is an experience that cannot be forgotten.

Every time you jump back into that dream you relive it repeatedly until you can accept what you have. To this day I still have my moments in which my family sit me down and make me realise that there’s never a problem that cannot be solved. It may take a while to get there however you can succeed eventually.
Since I was diagnosed with epilepsy I have watched my family adjust their lives to accommodate a condition that no one ever predicted I would have. Let’s just say their endless support and their passion to keep me going make me their biggest fans.

I write this post because I don’t want their support to go un-noticed and I want all relatives coping with the uphill struggle of their loved one to read this and realise that you are not alone and that their love keeps us going on a daily basis.

After gathering data from my relatives I thought it would be beneficial to write what they witness when they see me either having a seizure, a panic or anxiety attack or whether I be gazing into space with those massive cogs turning in my mind.

Epilepsy is very complex and I believe everyone should be aware of the condition and how it can leave a lasting effect on everyone involved whether that is the individual it’s happening to or the people who help others. My seizures are sporadic, they come when they want and I get no warning signs. My family have met people who like me have this condition. They have also met others who don’t have epilepsy however has anxiety.

With a shaky bout I am usually aware (apart from the severe ones) of my actions however for that brief moment when a seizure does occur; my life is in their hands. They are my eyes and ears and without them I would truly be alone.

What I have clearly understood is that in my particular case I don’t know what’s happening to me however when asked my family keep I updated with what they have recently seen.

When a seizure arises the following tends to happen:

I fall to the floor before turning blue with purple lips. My hands come up to my face and my body is incredibly tense. I foam at the mouth whilst also making a groaning sound. My body has a tendency to twist and contort and my eyes roll into the back of my head.

Following these symptoms I am rolled into the recovery position where the seizure continues for up to 5 minutes. Vomiting can occasionally occur before my family tell me what has actually happened. Usually thirty minutes later the same information is given as I have totally forgot what I’ve just been told.

I have been informed by my family that the psychological impact can be long lasting in those who have witnessed i.e. my husband who feels somewhat alone as my life rests in his hands. The adrenaline kicks in and the uneasiness is apparent. I have been informed by him that the pressure at times can sometimes be unbearable as every slight movement can trigger the fear of another seizure reoccurring and the same feelings coming to fruition. It’s an emotional process for all.

There have been many occasion where I have watched my family vomit, shake or have an interrupted sleep pattern following my attacks. This the body’s natural way of coping as the shock has officially sunk in. They are what I would call “over the moon” once I start talking again and start to regain consiousness.

For me realising that my family have to experience this makes me wonder what actually causes the mind to do what it does. The mind like other parts of your body is a vital tool to your actual wellbeing. Sources say that seizures usually occur due to an in balance in the brain that forces the brain to shut down and your body to react the only way it knows how to.

My biggest fear is that I cannot see what I am doing and particularly when I was younger I found it to be all too embarrassing for my liking. What child/teenager/young adult ever want to say I have just wet myself etc? It’s not a child’s fault as they want so badly to understand. Part of me feels like that when you don’t fully embrace what is actually happening to you until you see for yourself.

Let’s just say I owe my family the world and I cannot thank them enough for being there. Before I start getting myself emotional I best move on to
the next chapter.

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2 thoughts on “From a family’s perspective..

  1. Them words r so lovely my worst fear was fitting in front ov my children I didn’t want them to see it and after doing a stupid thing by going on the sunbed I came home and had quite a bad fit my children seen it and even now they r very weary ov being alone with me my husband has takin my anger and my emotions me telling him am fine wen am not he has helped me so much making sure I have takin my medication he is a god send no matter wot I throw at him he takes an really helps me 🙂

    • Hi,

      Your partner sounds like a life saver! He sounds very much like mine. I can totally sympathise with the fear.

      I don’t have children myself however have discussed with my husband what would happen should our child ever see me. I think acceptance is a big thing and your family are showing you that you have to try and remain worry free (for your well being) as they love you and will always be there for you.

      I remember chatting to someone once who had a seizure in front of her son. After consideration she explained to him that “mammy was dancing” and that her seizures was her body’s way of getting back to normal again. Although some may frown on that comment I think it’s admirable to be open and explain that at times mammy has times where she is unwell.

      Nowadays if he is there when she has a seizure his dad will tell their son that mammy’s dancing and the little boy knows mammy needs time to rest.

      Don’t worry love. By the sounds of it you are doing well and have a solid family network around you. Keep going you are doing great. Take care. Xx

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