I am honoured to know so many brave and courageous people. I decided to be brave myself and share my story back in 2017 to help others and raise awareness, since doing so I have met some incredible people on my journey. So many posts and messages I receive every day touch my dizzy heart so deeply, this message I received this week really did hit home and I wanted to share it with you (I have had permission to do so by the author) .
“I’ve had VM/VN,atypical Menieres and cluster migraines for 4yrs now and coupled with Osteoporosis and arthritis which recently put me in a wheelchair due to crumbling hips and collapsed cervical spine following falls. I had to give up working as a nurse in ER this had been part of my identity since I was 18yrs old, nearly 40yrs in fact, and I had rarely had any time off except to have my children. I loved my work and was always busy in my down time, catching up with my kids school and hobbies, socialising and helping at local youth groups and clubs. Then this happened and as hard as I tried to hold it together, bit by bit, my life was stripped back to barest essentials. Some days just getting out of bed is a minefield of falls, vomiting and sickeningly painful headaches that last hours and days and leave me with stroke like weakness and exhaustion. But if you asked my friends or family I’m ”not too bad” or “ok really, she manages” or “she looks ok today” and that’s what’s really destroyed me today! Of course I try everyday not to burden them with how I’m feeling and the constancy of a set of conditions that won’t ever get better only worse, I put on that brave face so as they believe the lie I’m telling with the smile.Now when I ask if they’d just mind helping by doing X and see the instant impatience, feel the ice cold annoyance or on more than once the hot anger at my needless dependence I give in, smile and tell them it doesn’t matter. The thing is it does matter so very much. The 5 maybe 10 minutes of their time I’m asking for will take me hours to achieve and cause pain, maybe embarrassment, most likely fear and panic, definitely anxiety and exhaustion. And I know because I’ll do it this time it’s now something they’ll tut at even more if I ask again. So knowing in the future I will be unable to do it and many other things part of me dies, I cry out of sight and try to pull myself together cos they say I’m always miserable and crying, and that’s boring them too. I’m left wondering if they’d be better off without me around at all and how much more loss of independence and dignity I’m expected to just accept. I’ve gone to bed thinking it wouldn’t matter if I woke up and part of me would be grateful to no longer have to fight. I’d never harm myself but I really can’t see much reason to be alive. If it wasn’t for my dogs I’d have no real joy in my days anymore, those sweet loving furry faces are all I get up for. I know there are no answers but Thank you for reading, I’m sure many of you can empathise as I have over the years. As you brilliantly illustrated with your mask images on Instagram/Facebook our outside face isn’t always honest or real.”
I am sure many of you can relate to the above.
I cannot stress how important it is for people to have more empathy and kindness. Over the past 10 years I have come across some very selfish people, with a very empty heart. They do not have an ounce of empathy or thoughtfulness for others, just tied up in their own bubble! Even if they did ‘happen’ to do something for me, it was only if they would gain out of it themselves.
I have also had so many hurtful things said to me over the last 10 years, judgemental, negative comments, the non-believers, certain looks on their faces, the tuts, huffs and damn right rudeness quite frankly. Then you get the even more hurtful ones that do not do anything at all, despite me supporting them, I get nothing in return. Some have never even bothered with supporting me, even though they may know me very well and even worse, know how I can struggle, that I cannot drive or do certain things. However strangely enough I do not get angry anymore, I am not bitter towards them, I just feel incredibly sorry for them. If only they knew how these conditions affect peoples lives, how they can totally ruin lives, how debilitating these symptoms can be for sufferers. All I am thankful for is I am not like them, all I know is they must lead miserable lives being like this.
Yes I put make up on, I put my mask on every day, I am happy on the face of it, I smile, I try and get on with my day, I join in when I can but sometimes all through gritted teeth. Deep down sometimes I am suffering, exhausted, tired of having to deal with these symptoms that flare up and can be so sudden too. I raise awareness on social media etc to try and get through to people, to try and help people understand how invisible illness affect to the core. I know some who think there is nothing wrong with me, who think I have made up my symptoms, conditions etc, Jesus get a life! Trust me you cannot make this sh*t up! You could not even begin to script it for a movie! Not even Tarantino could be successful at that!
Some people have a simple lack of consideration for others. The issue is they do not even know they are doing the things they are doing, saying the things they are saying or sometimes not doing anything at all, which is often worse!
We can’t turn our symptoms off or opt out of feeling pain but people do have a choice in how they speak to us. So next time someone asks for your help, reaches out, looks like they are struggling or are missing off the radar, be kind and thoughtful and check in with them, it takes seconds to call, message or pop in…..and little things like this mean the world to us. Life is never too busy to take time for others.
Thank you for reading. If you are someone who is struggling on your own with no support, please reach out to me and my support group. You do not have to do this alone. http://www.facebook.com/groups/mummyseeingdoublesupport and I am on Instagram @mummyseeingdouble