“It started when I was around 17, during my last year in high school. I had suffered from a few headaches in the past, but they were more ‘I hadn’t drunk enough water’ or mom nagging me to ‘not spend too much time on my laptop playing Sims’ sort of headaches. One day a migraine struck, and it hasn’t left since.
From that moment, the headaches were daily.
I went dizzy, I felt sick, I was confused, things didn’t seem real and I couldn’t see. My head was pounding like a freight train, my eyes always hurt and I felt very unattached from my surroundings. A lot of these symptoms are now the normal for me and I experience them all the time. There isn’t a moment during my day that is headache-free.
I just wanted to be a normal teenager. This period was extremely tough and in some ways, it still is. Feeling like this isn’t pleasant, it’s hard to cope with and it definitely gets you down. Spending most of your time back and forth from hospital appointments, constant blood tests and physio appointments isn’t how you want your final years of school to be spent.
Back when the migraines first hit, I faced the doctors for the first time and poured my heart out to them about how I was feeling. I broke down. All I kept thinking was, ‘Why aren’t I normal? Why was everyone else able to work and go to school still, and I wasn’t? Do other people feel like this? Was this pain normal?’
Some have understood, others didn’t seem interested. Living with chronic migraines is miserable.
Sitting in a doctor’s room, knowing it’s their job to help you and being told, ‘I can’t just keep feeding you with medication, Miss Rudd,’ or ‘The pain will eventually just go away,’ and basically being told to ‘man up’ is not the sort of attitudes you need. Did they really think I just wanted medication? Did they honestly think I was just a drug seeker? Appointments like this really hurt.
The emotional strain of having a chronic illness can be just as bad as the physical strain.
I remember clearly many a day I would shut myself away in the bathroom so I didn’t have to leave the house. I would scream, I would cry, I would battle with my parents. This wasn’t for attention I just didn’t know at the time how to deal with things and I felt as though no one would help me.
At the time, my family really didn’t understand. It felt like I was on my own. Why was no one listening to me? Did they experience the same pain as I did? Is what I’m going through normal? Do they think I’m going mad?
All of these emotions continually overtook my mind and because of those thoughts, I quickly developed anxiety. I didn’t want to leave the house, I didn’t want to interact with other people, I didn’t want to see my friends or family and I completely shut myself off. (However, I did manage to achieve my AP exams by completing them from home and for this, I’ll forever be proud of myself that I managed to finish school). If I’d have known then what I know now, I’d have known that shutting myself away was not the answer. Opening up and talking things through is a far better coping mechanism.
Finding someone who finally understood and had a genuine interest in helping me was a huge relief. Never settle for those who don’t listen to you. Make your voice heard. Migraines are way more than ‘Just a bad headache’ and it’s important to get across how much they impact your day to day life. I have spent way too many years tucked away in my bedroom hiding from the world, suffering in silence because people wouldn’t hear me out and just kept prescribing medication after medication.
My main general practitioner is now a huge part of my journey and I am confident and comfortable when speaking to them. At the start of my journey, I was told to ‘be the change I wished to see within the world’ and this has honestly been my go-to.
This particular GP is the reason I am where I am today. We’ve sat and had many appointments that have over-run on time, we’ve laughed, I’ve cried but it’s about understanding and about finding someone who gets you. Someone who knows this ‘isn’t all in your head.’ They may not understand the physical pain but they completely get how it makes you feel. I’ve been told their door is always open, to pop by whenever I need and that they’re only a phone call away. This is the sort of positivity and support you need around you.
Fast forward a few years and I have developed chronic fatigue alongside having a vitamin D deficiency. My joints continually ache, I have a regular sleep pattern but feel like I have never slept, I struggle to walk and keep my balance and my concentration is nonexistent.
We are now in 2019. I have had therapy to help with my anxiety and thankfully, although the pain is still there, the anxiety is much more under control. Don’t get me wrong, I still have anxious moments – don’t we all? but I am now able to face the world. I pace myself, facing each day with a positive attitude and taking each new day as it comes. If the pain is too much that day, that’s okay, we just try again tomorrow.
I love the outdoors and spend as much of my time as possible outside. I venture to new places and get to experience all of this with my friends and family. I leave the house, I have a social life, I’m in a long-term relationship and I have a full time job. Again, this is something I am extremely proud of and I’m lucky that I am able to work, as I know many migraine sufferers aren’t able too.
As for treatment, I have received occipital nerve block injections, medications, various rounds of physio and more recently I have received Botox to try and ease my migraines. Unfortunately as of yet, nothing seems to have worked for the pain and I have been referred to a specialist headache clinic in London. I have been offered Vitamin D injections to try and boost my levels to see if they can fight my daily fatigue and I am seeing a pain management team to tackle the daily pain I still experience.
Through all of this, I refuse to give up and I believe things will get better. To me, healing looks like a future. Healing looks like a house. Healing looks like being able to create a stable family home and bring new lives into the world. Healing looks like traveling. My dream is to see more of the world and I believe that one day I’ll be able to do all of these things.
Chronic migraine is now a part of me. It has shaped me into the person I am. Not many people my age will have been through what I have and I believe it has made me a stronger individual. We tackle life together and I believe you accept me and you accept the migraines I come with. I decided to start my Instagram and blog as a way of expressing how I felt but also to create a strong and supportive community for others suffering. I want you all to know that whatever it is you’re going through, you are not alone. We are a community. We are a team. And we shall face the world, one step at a time as one big family. Knowing other people who are going through similar struggles are only a message away is something that has really helped me during my recovery and it’s what I wanted my account to be about – An open place that others can share their experiences but also teach others about what they’re going through.”
This story was submitted to Love What Matters by Vicky Rudd of the UK. You can follow her journey on Instagram and her blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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