Pennie's story

I initially had a TIA – or mini stroke – when I was 29 and was 38 weeks pregnant with my daughter Molly. My quick-thinking son Joshua, then aged nine, called the ambulance, something for which he later won a bravery award from the local Lions Club.

Josh realised I wasn’t okay. I had slurred speech, couldn’t see properly, and couldn’t stand up. His actions saved me and his unborn sister.

After recovering, I quickly tried to rebuild my life and pursued my clinical teaching career whilst being a mother and enjoying my busy social life with my friends. Several years later, my husband Paul and I went on to have another daughter, Bluebelle, who is now six.

Then, in March of last year (2022), I was hit by a second, more serious neurological event/stroke which left me with a wide range of physical, communicative, and emotional difficulties, which stopped me from the life and all activities I currently knew so far. I was unable to work, be a mother or a wife, socialise, or work. I was unable to eat solid food due to severe swallowing difficulties and still remain on a liquid only diet.

I collapsed on the floor at home and was unable to speak to my daughter Bluebelle who tried to lift me up. I thought I had a virus and tried to sleep it off, which is the worst thing to do. I spoke to the doctor first thing in the morning. He said he thought I’d had a stroke and would need to get to hospital immediately. I didn’t think I would recover this time.

I got to A&E at Eastbourne General, had numerous tests and was admitted 12 hours later. I kept saying I’m sure it’s something else but was categorically told by the consultant that it was either a TIA or stroke and that I would need to stay in hospital. I cried.

I was in hospital for a week and treated with antiplatelet therapy before being allowed home, but this time recovery has been much harder. Worryingly, I was then sent back to hospital by the stroke nurse and GP with a suspected subsequent stroke the following day, which complicated recovery even more.

It’s taken a year to gain decent mobility again using zimmer frame, to walker, to walking stick, to leg braces, with a huge help and support from the community stroke rehabilitation team. They have been amazing.

I had a left-sided hemiparesis making the entire left side of my body non-functional. I couldn’t do any tasks without help. I needed a lifeline alarm and a keysafe as I was a falls risk and the family worried when I was left alone.

My memory and understanding were poor, and I found the children hard to be around due to noise plus my inability to interact. My eyesight seemed to change daily which added to headaches and fatigue and I still find bright lights intolerable.

My eldest daughter Molly helped with personal care and washed me – our roles were reversed. I felt guilty and sad. I couldn’t and still can’t walk the dogs due to balance and strength issues and rely on gorgeous people and friends to help.

I was very low at one point when my mobility, cognition, physical and mental health were at its worst. I had such pain from my head, oral thrush and severe acid reflux, challenges with incontinence issues, and overwhelming tiredness you never thought was possible.

I felt that if this was what I would stay like and must face every day, then I didn’t want to carry on. It was all too much. I got referred to Health in Mind and as I began to improve physically, I gained a sense of achievement and wellbeing and in turn this rallied me on, as my mental health improved too.

I am better at protecting myself in knowing what I can and can’t manage now. I have learnt what my limitations are, although this can be difficult for others to see and or to understand. After my TIA, the consultant said that people will not know the impact or know I have had a brain injury as I don’t have a bandage wrapped round my head which would give a big visible cue.

I found that some friends reacted and behaved differently around me. Some avoided seeing me altogether and others just didn’t know how to be with me. This was hard to comprehend and made me feel sad. I used to always be a chatter box and could always fill any awkward silence, which I was then unable to do.

I also found I was having to rely on others. Something I have never had to do before. I wasn’t allowed to drive for months and had to be reassessed due to cognition concerns. I had gone from being totally independent to dependent.

I was always asking other mums to help in taking and collecting my youngest daughter to and from school. I asked friends to take me to medical appointments. I found it hard to keep asking for help.

My husband was having to deal a lot more which I could see was taking its toll. Again this also helped me fight to get back on track. Being in hospital and being so unwell put a huge strain on family dynamics and relationships. I wasn’t the same capable mum that I was before the event. It was life- changing for us all.

I could not work full time or fulfil my role as nurse tutor in the NHS or as podiatrist for the homeless, or any other job due to severe illness and disability. I was retired on grounds of ill health.

Over a year on, I am now doing occasional part-time hospital chaplaincy volunteer work just one morning a week, which I love but find totally exhausting. I cannot be reliable anymore as I am too fatigued, my symptoms flare up, I have several medical appointments and other conditions making a complex medical history, all meaning I cannot commit to things like I used to. This made me feel very sad but I have had to accept things as they are now.

I feel people are much more aware of TIAs and strokes and tend to know someone that has had one. But people don’t always realise how a neurological event such as a left-sided or right-sided stroke affects someone, and that it affects everyone differently.

Less seems to be known about the day-to-day challenges, the long-lasting residual symptoms, the impact on relationships, how it affects you mentally, how beyond tired you can be, how it can change your personality, your views on life, and even your identity.

Nick O’Donohue, The Stroke Association associate director for the South East, said: “Our research highlights that people still think stroke is a condition that only affects older people. It’s crucial that we challenge this misconception and make people aware that stroke affects young adults too.

After a stroke, life changes in a flash. Two thirds of people who survive a stroke find themselves living with a disability. As a result, younger stroke survivors are having important milestones and their planned futures stolen from them, while they have to learn to adapt to their new life affected by stroke.”