I meet so many people through social media, lots of inspirational, brave individuals. People suffering from debilitating conditions, trying to get through each day as best they can. People contact me at the start of their healing journeys, middle or when they have got better, some people keep me updated years after with how they are getting on, which is lovely. What is really touching is the fact they contact me in the first place, reaching out to thank me, to ask me questions etc, its actually a brave thing to do as you are opening up to a stranger.
I had a lovely message the other day from Jake, who I had never spoken to before. He sent me this message.
“Hey- I hope you don’t mind me sending this message, but I’ve been following your account for a while now. I’ve had chronic vestibular migraine since Nov last year, and like most people didn’t have a clue what was wrong with me at first, and neither did most Drs. After some online research of my own, and meeting a much better neurologist, I’m finally starting to feel a lot better. But I just wanted to say thank you as I’ve found your account really informative, and I’ve discussed a few things you’ve posted on here and your blog with my neurologist. I think it’s a really great thing you’ve set this account up, as it’s a lonely illness to have, and there isn’t a great deal of info! Your account and a few others have really helped me, especially on those bad days where it feels like there is no end in sight. again, thank you!!”
So we started chatting further on Instagram messenger and what a lovely genuine person…and a true warrior. Someone who has taken the bull by the horns and taken back control of his life. By researching, fighting on and never giving up, he has come through the worst.
Jake says “I’m definitely feeling a lot better- it’s been a lot of trial and error but I’ve finally found a medication that works for me, Venlafaxine. It’s got me back to feeling about 90% , and alongside some CBT, as it really triggered anxiety for me, I feel like I have my life back!”
He continues to say “I’ve had this twice before, for periods of about 3 months but was just told it was a virus ( I wonder how many of us get told this) so I’ve been told by my neuro that there is a chance it will likely come back but I feel in a much better place to deal with it!”
We continued to chat about mindset and how important it is when on the healing journey. I explained to him we are all different but I have found meditation to be a game changer, alongside nutrition/gut healing, water intake and exercise. Mindset has been one of the reasons why I have got to where I am today, by calming down the anxiety, addressing the depression and reducing stress things improved massively. I think people do forget that there is a lot we can do to improve things ourselves alongside external professional help and I always like to use the quote “what we seek is already within us” as its so very true!
Jake said “I agree that mindset is such a huge part of this! I exercise a lot- I’m taking it easy for now, and slowly building back to my usual self, but definitely find that if I’m having a ” heavy fuzzy head” day, some yoga or gentle weights clears it for me”
I totally agree with Jake, even if I am feeling really off on a particular day, I definitely feel that doing some light exercise really helps get the blood pumping and gets oxygen to my brain and seems to help my symptoms so much. Some people think I am mad to start exercising when I am not feeling great but its the only thing that makes me feel better! I feel worse if I am sedentary. Its definitely quite hard though to work out your ‘fine balance’ your ‘perfect level’. Doing too little does not help and doing too much can tip you over the edge and then you are in danger of relapsing.
He continues to say “I honestly thought I’d be stuck sitting on my sofa with headaches forever and I can’t believe the improvement. I went paddle boarding last week. Unthinkable considering back at the start of the year I could barely get off the sofa and could only cook myself microwave meals when my bf was at work”
Jake is proof that things can improve, things can get better and you can get your life back. I believe that if you focus on healing the mindset and adjusting your life, amazing things can happen. People often think that by just taking medication solely on its own, it is going to make them better but its more than that. There is so much we can do ourselves to help things along. I found medication to be like a plaster, it helped let my brain heal so that I could make some improvements!
He explains “My symptoms have improved so much that they are more faded into the background now and don’t stop me doing anything, and am sometimes totally symptom free for spells here and there. I’ve also been discharged from neurologist as he is confident I will recover, and it’s now managed by my GP. I think it’s important that people find a good neuro/Dr who takes them seriously – if someone doesn’t feel they are getting the help they need, switch Drs!”
I think what also helps sufferers is support. Having people around you that can help you in your hour of need or are just there to support mentally is amazing. I have been very lucky to have such a great support network around me and it sounds like Jake has too;
“My BF was great, very understanding and was happy to cook for me, picked up most of the household chores. My parents and grandma were also really helpful- my boyfriend is a police officer, so works all kinds of busy shifts, and they would help me out with stuff, and as I started to improve ever so slightly, my mam would take me out on trips in the car where I wouldn’t have to walk far. I always had someone come with me to Drs appointments too, as they could make notes (brain fog meant I’d forget most of what they said!) And I think it helps the Dr take you more seriously if you have someone there backing you up.
Its really good if you can take people to appointments with you. Like Jake, I found it so helpful to have my mum and dad in with me, as my brain fog was awful and I could never remember what to say or what they said to me!
I totally resonate with what Jake says here, its very hard to get across how you are feeling, I had to prove it in letters and diaries in the end! “Negative experience wise, the first few drs I saw wrote it off as an ear infection, that was being prolonged by anxiety- they wouldn’t listen when I said I felt anxious because of my symptoms, and not the other way around. I went from running half marathons to unable to get of my sofa overnight- that would cause anxiety for anyone! My workplace were initially a little sceptical- I had to take 5 months off sick as I was unable to work, and on a letter I saw to HR, my manager had described the illness as “headaches”. However, once I showed them my letter from neurology, they were very understanding and allowed me work from home on a phased return until I felt up to working full time. Due to Covid I’m not back in the office, but am working full time again, with no negative side effects”
I would like to thank Jake so much for sharing his story and giving others hope, its truly inspiring. I am sure it will help lots of people to read that things have improved so much for him.
If you would like to share your story on my blog I would love to hear from you, please write to me at firstname.lastname@example.org
Please feel free to share this post far and wide, as the more we share the more awareness we can create.
Thank you for taking the time to read this….
*Please note that we are all so very different so what medications, exercise, diets etc work for some might not work for others. Always seek professional help if you are experiencing similar symptoms.*