Amy came to me back in 2017, she found my support group online. She was broken, broken by these debilitating conditions and symptoms engulfing her life. She was very depressed and suicidal, something many of us might experience when these conditions take hold and get severely chronic. She was not in a good place, I felt for her so much as she reminded me of when I was at my worst between 2013/15.
I wanted to share a post that she put out in my support group today (I have had her permission to do so, Thank You Amy). I have supported 100’s of people with invisible illnesses over the years, many who have had no one to turn to, many who just do not know what to do, who to speak to and also sadly have no family or friends who support them. Support groups are amazing, they are incredibly valuable in your hour of need. With no judgement, no negativity and the comfort of knowing people are experiencing similar symptoms etc so they have a better understanding of what its like to live with such debilitating illnesses.
Some of my members have joined the group and then left to begin living their lives again once they are better and you never hear from them again and thats totally fine of course. What is incredible is when some comes back and shares their positive success stories with us, Amy is one of those. Not only is it amazing to read how well they are doing and it fills me with happiness and proudness but also it inspires others and gives people hope.
Here is Amy’s post:
“Before I start wanted to say the biggest thank you to Lara Bishop you are a wonderful human and the day I found you I felt utter relief thank you for all the support gorgeous lady
I wanted to wait until I posted this but I hardly visit these groups anymore because I am out living my life but it’s important to come back and give positive stories to those who are in the thick of this horrible disease. I have had vestibular migraines probably as young as 10 I would get episodes of it lasting months or years on and off from the age of 14 BUT years of normality inbetween and nothing as bad as what I experienced a few years ago or nothing that warranted a trip to a doctor.
Then 4 years ago I woke up and my world changed I experienced 24/7Vertigo Rocky boat Pressure in my headTingling all over Headaches ( not always though ) Neck ache Nausea Feeling spaced out ( like I’m here but not )Visual snow Auras daily Shaky vision I’m sure there’s more but this is what I remember. I visited over 10 doctors some great some the worst , tried over 10 medications with lots of side effects.
Recovery was not days or week for me more months years , this dosent mean yours will be we are all different. I was a shell of my former self, I was bed bound for 6 months to a year, and it took a good 2-3 years before i was living with so many set backs and relapses. I was suicidal , depressed BUT these groups , therapy and good friends ( lost a few too ) got me through. I eventually took venflaxine 150mg which helped a lot altho even before this I had got to about 60% through time, I have recently added in Botox which has also helped.
I would say I’m 85% back to myself the reason I say 85% is because I still have mild pressure in my head and feel spacey mildly and then it gets worse in shops etc BUT honestly I am so GRATEFUL because I never thought id even get here and I am also so sure I will get back to being 100%.
One thing I’ve learnt and accepted is I will always have a migraine brain and that’s ok, people live with a lot worse. I have triggers and that’s ok I live a little more mindful but it’s no biggie because I am LIVING again. Search my name in these groups and you will see just how bad I was. I hope this post give you all hope , WE CAN RECOVER from this my neuro always said NO ONE is stuck forever but yes it can go on a while and it’s not a quick fix for a lot of us but there is light at the end of the tunnel.
Thank you for everyone here who helped me , sent me a message I have kept my promise of always reaching out to anyone who messages me and spreading awareness of this condition. Stay well everyone “
Thank you so much Amy and my reply to her in the group was this:
“I truly am so so happy for you and so proud of you and you should be incredibly proud of yourself. I know how really ill you were and so glad we were all here to support you through it when you needed us. Thank you for your kind words about my support, but it was you that got yourself through this and will continue to do so….yes I am there for support, advice etc but like a friend I walk by you and am always there in your hour of need. Ultimately you got yourself there, don’t ever forget that, take that through your life, it will help in all sorts of situations throughout life.
Sometimes we do loose confidence in ourselves, in our ability to heal, we loose faith in our brains and bodies, as you know its not overnight, no healing is….but through utter grit determination and the passion to get better and to keep pressing forwards you got there. I have learnt so much about myself over the last 11 years of having all my conditions (mine are complex as I have 8 things going on) but I am strangely thankful for them as they have taught me a lot about me, they have made me the person I am today…plus I would not have met you lovely people in this group if I had not had these conditions so there are some positives!
As you say acceptance can be a huge relief and freedom, if we keep fighting everything it can manifest into something bigger and then you have a snowball affect and as we know anxiety keeps us stuck in a loop….You are an inspiration to many many people, keep doing what you are doing and keep being the lovely person that you are as I am sure that counts for some of it! Well done and thank you for coming back and sharing this amazing story. love you. la xxxxxxxxxx”
Thank you for reading this post and thank you to Amy for coming back and sharing your lovely story and you are amazing and a true inspiration.