Back in July 2024, Cara had been feeling unusually tired and was suffering with headaches. As a support worker for a severely autistic child in a primary school, she was used to juggling her demanding job with caring for two young daughters so put the symptoms down to stress.
Having dozed off in front of the TV one night, she woke up with a dead arm. Trying to lock the back door, the keys kept falling out of her hand: “I felt dizzy, lightheaded and I couldn’t control my limbs properly. They felt all rubbery,” she recalls.
The next morning, Cara still had no grip in her right hand which gave her an inkling something was seriously wrong. As a single parent, she had no choice but to carry on with her day and take her children to school.
When Cara’s sister eventually took her to A&E later that day, an MRI revealed she had a blood clot on her brain, most likely from a stroke. This came as a huge shock and Cara had no idea what lay ahead.
“I was absolutely determined to get the feeling back in that hand because I play the piano, that’s really important to me,” she explains.
A hospital physiotherapist gave Cara exercises to help regain the muscle memory in her hand. Her strength of character and resilience meant she could grip again within two weeks. What she couldn’t have foreseen was the longer-term, emotional impact.
Struggling with fatigue and anxious about the practicalities of her busy life, Cara needed support with her return to work. She was grateful to be referred by her local hospital to Shaftesbury Icanho, our specialised rehabilitation service for adults affected by an acquired brain injury.
“School is obviously a busy, noisy place. The idea of going back there felt really overwhelming,” Cara recalls.
What made it harder was the fact she was suffering from an unseen disability, with symptoms including extreme fatigue, sensory overload, ongoing headaches and reduced physical resilience.
Cara felt her colleagues couldn’t relate to what she was going through. It was also difficult for her two daughters, now 16 and 12, to comprehend because they couldn’t see anything physically wrong with her.
Shaftesbury Icanho helped Cara to manage the fatigue and liaised with her employer to facilitate a phased return to work. An occupational therapist supported her at the school and engaged with her colleagues over a period of four months, ensuring she didn’t return to work before she was ready and recommending adjustments that could be made to accommodate her brain injury.
To help reduce the impact of fatigue, overstimulation and stress, Cara was advised to wear loop earplugs at school and to take regular brain breaks whilst the child she was supporting had his. “I was completely unaware of work regulations and my rights as a person with disabilities, but my Icanho therapist knew it inside out,” she says.
Meeting other stroke patients through support groups also helped Cara feel less alone: “I gained really helpful information about the impact of having a stroke, not just on me, but on family members, friends, work colleagues.”
During a family session at Shaftesbury Icanho, Cara’s daughters were able to open up about their worries for the first time. The social worker called beforehand to check what the girls’ favourite snacks and drinks were; a level of care and attention that touched Cara.
She feels the session was a turning point for them: “It changed things in a really beneficial way and opened up better communication between us as a family. It broke down barriers and gave my children a better understanding of my condition and myself a better understanding of what my children were going through.”
To this day, brain fatigue is something Cara suffers with: “I can really feel the difference between general tiredness and the exhaustion that comes with having a stroke. It feels like my head is in a vice and is being squeezed. It’s getting less frequent, but I still get it when I’m overthinking or doing too much.”
Cara is confident this is not just a symptom of stress because she gets the sensation even when she is doing something she enjoys like painting, sewing or playing the piano.
Cara feels without the support from Shaftesbury Icanho, her life would have looked very different. She likely would have remained in a ‘rut,’ with little hope of returning to work.
“I felt at ease knowing that I had the right support to hand when I needed it most,” she says.
For more on acquired disabilities, visit our Opening Doors Christmas campaign pages at shaftesburygroup.org/opening-doors