Hi, it’s taken me ages to write this post and come up with a title that accurately describes where I’m at : Adapting My Life To A New Normal. What I am going to share with you, is my journey, over the last few weeks. Honestly. But maybe a bit back to front!!!
About 3 weeks ago I came home from a 2 week stay in hospital. My stay was unplanned, difficult and was preceded by one of the most frightening periods of my life.
At the end of March my husband called the Paramedics, as I was having, what we now know are Seizures. Failing a series of, quite brutal tests, designed to get a response out of me (trust me – if I could have responded I would have – having various pressure points pinched, poked and twisted was painful. Very painful!!), it was decided I needed to be take to our local A & E via Ambulance.
Whilst there, the eye twitching/mouth contorting, developed into full body jerking. Arms shaking, legs moving, my whole body rocking and rolling and I was completely unable to stop or control any of the movements. I was very scared. Nothing like this had ever happened to me before.
Ok so I live with Chronic Pain and Frequent Migraines, so I’m used to my body not behaving as I’d like. But this, this was a whole different thing,
During each Seizure I remain completely conscious and aware of my surroundings and what people are saying – although during the longer Seizures (15 minutes plus) all I can focus on is trying to keep my breathing as steady as possible and getting through it!
After various tests I was admitted to a ward, where I spent the next 2 1/2 weeks. Easter was spent in hospital, not at home planning egg hunts with my hubby for our children – that was hard. I missed them so badly. Even though they visited on some days, we spoke or text everyday. Whilst I was still stuck in hospital, having upto 15 Seizures a day – our eldest daughter, Star was revising for her GCSE’s at home. Not that anytime would be ideal for what was happening to me, but to say the timing sucked would be a massive understatement.
It became clear, as more tests were carried out on me, that my future would mean Adapting My Life To A New Normal. Daunting to say the least!
Gradually, over the 2 weeks the Seizures reduced to 5-10 a day, with a couple of rare days where they were absent altogether. I kept a record of the Seizures, time, length, previous activity etc. There was a lovely lady diagonally opposite me, she would note the time a Seizure started and then I would raise my hand, once it was over, she’d say “OK Sam, I’ve seen your hand” and then let me know how long it had lasted once I’d recovered.
Having a Seizure, for me, feels like I am strapped to a Bucking Bronco, unable to get off. My body is bucking and doing a full workout, whilst inside everything is spinning and dropping and it’s a very exhausting, frightening experience. During a Seizure I lose ALL control of my muscles. I can no more make a muscle move, at will, than stop it. I get through each episode by singing, in my head – this helps to give me something to regulate my breathing and to hold onto the one person that is immovable and constant, Jesus.
Without my Faith and the amazing love and support of my husband, I do not know how I would have got through the last month. Jesus is ALWAYS there, in the middle of a Seizure, during the long lonely days and nights. He truely never left me or gave up on me.
The good news is that I don’t have Epilepsy, or a brain tumour (that was a bit of a shock when it was mentioned as I hadn’t eveen considered it!!). I am now home awaiting an appointment at a London Neurology Hospital. I get to see my hubby and children EVERY DAY. Oh and I haven’t had a Seizure since last Sunday – 5 days clear!!!! The flip side is, as I start to feel better, stronger and less ‘spacey’ I’ve realised I can’t drive and won’t be allowed to for at least a year. That’s going to be hard, very hard. All the time I was having regular Seizures I didn’t even want to drive, but as I get further away from my last Seizure I know I can’t. I’m Adapting My Life To A New Normal.
I will make it, we are adjusting as a family. True the timing is horrid given that Star has started her GCSE’s. Would the timing ever be right though? We have a strong Faith in Jesus, who has brought us through adversity before and we will get through this together, with Christ at the helm, steering our ship through choppy waters.
So I’d like to pass on a word of encouragement to all those of you who are going through difficult times and sailing in troubled waters, place your trust in Him who loves you with such a powerful, unyielding Love. Jesus loves you with a Passion and He will hold your hand, if you reach out to Him and guide you through the unchartered waters ahead.
Please feel free to share your experiences in the comments section.
Have your circumstances changed? Are you saying I’m Adapting My Life To A New Normal?
Who do you place your hope in?
Sammie x
