Lucy's story

The name has been changed as the person would like to stay anonymous.

To describe myself, I find joy and comfort in the simple things in life. Being near water, sipping warm drinks, and wearing cosy woolly jumpers and hats make me the happiest and most content.

Recently, I experienced a brain injury and have been navigating the challenging road of recovery. In addition to that, I’ve been dealing with chronic hemiplegic migraines, which had been a long-standing issue but intensified after my accident, resulting in increased severity and frequency, along with fatigue.

Managing my brain injury and migraines has been quite a struggle. The waves of debilitating symptoms have forced me to put aside some of the activities I once enjoyed. Instead of climbing mountains, I now find myself climbing under blankets, spending a lot of time alone in a dark room, battling severe migraines and a range of neurological symptoms. It’s been anything but easy, and the reality of living with chronic and daily migraines, which are difficult to treat, is isolating and challenging. However, I’m trying to adapt to this new reality while still finding joy in smaller doses of nature, like painting or dipping.

The support I received from the Brain & Spine Foundation has been invaluable, both practically and emotionally. Their nurse-led helpline, informative resources, and engaging social groups have been a great source of support and knowledge.

There are some things I wish my friends, family, and colleagues understood about my condition. Migraine is not merely a headache; it’s a completely disabling experience affecting my entire body. It’s recognised by the World Health Organization as the third most disabling condition globally. Overpowering fatigue from my brain injury or experiencing back-to-back migraine attacks without a break is a whole different level of exhaustion. The duration of aura can be much longer than most people realise, with some lasting for days, weeks, or even months, causing significant disruption in my life.

If someone were to face an experience like mine, I would advise them to seek the right diagnosis and treatment plan as early as possible. Once migraines become daily or chronic, they become more challenging to treat, so getting the right support from the beginning is crucial. Consulting a headache specialist may be necessary, especially if other treatments haven’t been effective. Understanding the importance of rest before and after activities, both mentally and physically, is essential. Rest comes in various forms, and finding what feels restorative for you, whether it’s napping, painting, or listening to music, is vital on this journey.

I hope my story helps others going through similar challenges and brings awareness to the realities of living with a brain injury and chronic migraines. Remember, you’re not alone, and there’s support available to help you navigate this path.

Take care.

Lucy has also written a poem as well, which you can read here.