I have nearly hit the 6-year mark as a vestibular migraine sufferer.
I know many have asked how I got back to ‘normal’ or should I say the NEW normal so here is a link to my Youtube channel for more info but this post is more about how I have to live my life now and what triggers I need to watch out for, as once you are hit with this, your life changes permanently.
I have had relapses that’s for sure! Most recently a 3-week relapse that was very severe and it led me to be bed bound for a few days again and then on and off dizziness for three weeks, but now I am back to 95% again and to be honest, I have found that since the very first attack all those years ago, I have NEVER gone back to how bad I was which has always been my biggest fear!
So how has my life changed?
Friends – In the past few years, I have learned to avoid friends and family members that can cause a lot of stress in my life. Seeing as stress is my NUMBER ONE trigger, I had to be more careful about who I let into my life and how I whom I spent the majority of my time with.
I no longer try to be a shoulder to cry on all the time, it is exhausting and I needed that energy for my recovery. You soon find your true friends throughout all this as the ones that you are no longer giving your undivided attention too will drop away whilst your true friends will stick by you.
I used to avoid certain people completely but now I try to balance it out to people that are fun to go out with socially ( Good time friends ) and the friends that are there for you 24/7 if need be and who truly have your back.
I have learned to say ‘No’ more and have stronger boundaries too. Over time people have come to understand my condition so will not pile their problems onto me or ask me for favours that they know will drain me or be highly stressful. I no longer feel guilty for this, it is a matter of survival.
Career – So my career went out the window. I was a full-time marketing manager for a big travel company and I had to give up my job as being on a computer for 8 hours a day was impossible.
Even now, writing this I find it very difficult. I get brain fog if I am on here too long and have to go back and correct a word in every sentence!
I decided to leave my job behind and I tried to work with children as a TA for around a year but this caused me to relapse as there were so many triggers for me! Stress, bright lights, loud noises and lots of movement. It became too much and I would find myself swaying when I was on lunch duty, not to mention as well as a TA I was a carer to a girl there that needed around the clock attention and certain medical needs and after a while, I had to just leave completely as I ended up taking so much time off sick, I was not there for her and it was unfair.
I still miss my kids so much…….
I now work part-time from home on my laptop and have hours that suit me. I cannot see myself going back to a full-time job again. Overall, I am a lot happier and healthier!
Exercise – I used to be very very active. I used to surf, run, go to the gym and all in all I have always loved sports.
I can now no longer go to the gym as I find any weights I lift will put pressure on my shoulders and neck and cause migraines. Also, any high impact sports such as running or Zumba for example, are a no go as any stomping causes migraines again.
So I started ice skating lol! I LOVED it! When coronavirus hit I had to give it up and instead took up rollerblading. It has been very challenging, not so much the balance funnily enough but the stamina needed and our bodies are working twice as hard as anyone else to keep us upright!
I used to say to my partner when you work out, your body gets tired, but when I work out, my brain gets tired and that’s worse as it sets off the chronic fatigue, dizziness, and problems with thinking, co-ordination, brain fog and difficulties speaking.
Roller blading is low impact and helps with my vestibular recovery.
I am also almost certain I have PPPD which is why I have been chronically dizzy for years and why it comes back if I am super stressed or anxious.
Stress – It’s hard to avoid in life and I find that a lot of people that have vestibular migraines tend to be highly strung, worriers or have a lot of anxiety too and I find this really does worsen our symptoms.
Ok, so I am so crap at meditation! But I lead a much slower and calmer life now. I wake up later, I rest for a few hours, I work, then I go for daily walks and fresh air or skate, go back to working again.
My meditation is actually reading my kindle in my local coffee shop every day. It helps me to zone out from all my worries and have a little bit of peace.
I am now also in Sweden and it has made a MASSIVE difference staying here in the country compared to London. No noise, lights, traffic, busy streets, people lol!
So yes, this is the NEW normal. it has taken a lot of getting used too, but I am happier, more settled in my life too. The career is not so important to me anymore, more being with loved ones and valuing friendship and simple things like a skate in Hyde Park with the sun on my face.
I may not be able to do everything I used to do, but instead, I have swapped them for other activities and a career that gives me a better work/life balance.
I can STILL drink and party really hard if I want too and dance for hours lol. But what I have learned with this illness is a one-off is ok, but to burn the candle at both ends regularly would be too risky.
Overall, I would say I am more rested and take each day as it comes. I rarely make big plans now that will lead up to anxiety etc, I am more ‘spur of the moment’ depending on my energy reserves.
I am also with a new partner for the last year that supports me 100% and I feel very calm around him. It is so vital we have that support from loved ones! Before I met him I thought I would rather be on my own than have to conform to someone else’s idea of how I should be….. how I should put on a brave face when I feel like crying, how I should just ‘get on with it’ etc.
You see, this illness is all about balance, not too much of this, not too much of that, but when you start to get that balance right, no matter how many years it could take you, life really does become worth living again..