July has been a busy month. I work in a small team supporting schools and working with children with challenging behaviour, trying to reduce exclusions. I drive some 100 miles each day on small rural roads full of tractors and increasing amounts of road rage. I know that I have been more than usually stressed this month. I manage the demands of the job by taking regular exercise – I love the gym, walking and playing the piano. I’m 24 (HAHA, not really but there’s a story around that in a minute!).
At 3am my sleep is interrupted by a cracking headache and I’m feeling sick. I blame the glass of wine I had before bed. Throughout the night I am either sick or retching at regular intervals. I shower, feeling supremely and unusually tired, dress and come downstairs. I tell my family about my headache and feeling sick…..or rather I try and tell them. They start to ask me questions and I cannot find the words to answer. I know that the words are there but I cannot reach them! My family are getting concerned, but I tell them I am just tired and foggy. Fortunately for me, they know that my behaviour is untypical and something is wrong and dial 111.
The paramedics are quite simply amazing. They are gentle, thorough and kind and somehow bring some humour into a traumatic situation. More questions -‘How old are you?’ They smile at my daughter when I say ’24’. I cannot find the 50 years that should be in front of the 4. I cannot find my date of birth or the month of my birthday and I struggle to find the name of our summer holiday destination – “I’m going to Kevin” I tell them.
I’m taken to hospital and a CT scan and ECG are done and my blood pressure monitored. All the checks are fine but a consultant sees something on the CT scan. By the afternoon I can find all the words that eluded me, but a TIA/mini-stroke is diagnosed and I am admitted to hospital. “Shock” really does not cover how I feel at this point. The staff tell me that the consultant was shocked – where did this come from? I am very fit, regularly exercise, my blood pressure and heart rate are healthily low, I have never smoked and drink moderately. I have no contributory health issues, nor have my family…I am frequently teased for my boringly healthy diet! No-one saw this coming.
On the stroke ward there are four other women. One lady has a tube snaking out of her mouth and she is unconscious. The lady next to her has been there 5 weeks and her face has slipped into permanent sadness. Another lady has been sectioned and has a constant companion seated at the end of her bed recording everything. The staff are lovely, kind and caring but so busy. They do not know what to feed me as I am a gluten free vegetarian and consequently I don’t eat until 8pm. It has been a long day and I’m really not processing what has happened and why I am here!
The next day I meet the Speech Therapist. “Wow this is really happening!” I tell myself. She is lovely and reassuring. We go through words, completing phrases, “glass of ..” etc., and move onto more complicated tasks involving reading and completing instructions. She discharges me and I realise how lucky I am. Today has brought me back what yesterday took away. I am still clinging onto the hope that this is not what they say it was.
In the afternoon they are desperate for the bed and I am sent for tests before they discharge me. There is an ultrasound on my neck, as apparently this is a typical place for problems to occur, and I have a MRI. These are both clear. A consultant tells me that they have to deduce a TIA and I must not drive for 4 weeks and be put on clopidogrel. I will have a follow up heart monitor for a week and an appointment in the clinic. He cannot tell me where this came from and that we may never know. He tells me, like everyone else, that this is a warning. I ask “What is my warning? What should I change?”. There isn’t anything apart from taking the medication.
The first week was desperate. I initially felt totally myself, capable of business as usual but by day three I was struggling with fatigue and really low mood and absolute and utter fear. I wanted to read everything and anything and understand but everything online seemed contradictory. The gym has always been a huge source of pleasure/relaxation but the Doctor told me I should not go for the first month. Rest, rest rest! On the Friday my head was hurting and tired and I was very dizzy. My husband dialled 111 and the same paramedics came again. I attended the ‘out of hours’ clinic and was told that I was probably reacting to the medication and I needed to rest more.
In the second week visitors arrived and so did a better mood, but I would slump by late afternoon. I focused on making sure I regularly ate, reduced how much I was reading about my condition and found things I enjoyed doing. My daughter’s company in this period was a lifeline. We had colouring-in books, read together, and gradually I started to walk further and further away from the house and into a better mood.
My TIA happened on 15th July it is currently August as I write this. I tick off every day. Everyone told me how high the risk was in the first weeks or month and every day passed is nearer to those statistics reducing further. I am hoping when I get beyond the month I will be able to drive again, I will be able to go back to the gym and I will gradually recover my confidence in living.
- Contact helplines! There were so many simple questions that the doctors never answer, like “why is the risk higher in the first month?”
These helplines are a lifeline.
- Be patient! I recovered much more quickly when I allowed myself to rest. In my case by the second week there was a significant improvement.
- Reach out to friends and family. The biggest battle could be with your emotions. This is probably one of the biggest shocks you have had (hopefully not repeated) and you do go, for want of a better expression, ‘to hell and back’. I felt dreadful, bleak fear; fear that I would die, fear that I had lost the life I loved, fear about my job. Those fears don’t all disappear but you do start to feel that you can deal with them. Every time I wake up I list all the words that disappeared on 15th July to reassure myself that it hasn’t happened again.
- Reach out to others who have been through a TIA and stroke. Your experience is unique but you will find strength in shared feelings, tips and advice and there is so much courage out there. The Different Strokes Facebook page is wonderful for this.
- Do not expect every day to be the same. One day you might feel full of energy and positivity, but the next day can dawn bleakly with every ache or pain being interpreted as a sign you are going back there.
- Do not expect that when you leave hospital that things will happen with any speed. I am still waiting for my follow-up appointment. My doctor tells me this is a good sign that I am not high up on the waiting list. I try to think this, but at the same time I feel that the appointment might answer my questions, might move me further along to recovery.
- Change…… inevitably after this experience something will change. There isn’t a choice in this and something has changed and we have to respond. We have to embrace that change – life has to be lived hopefully.