Illness isn’t a defining role in my life, it may have shaped me but it isn’t who I am. I’m a wife, sister, friend, fundraiser, blogger, and cat lover amongst many other things. These are how I define myself, I just happened to have a neurological illness. I am no more defined by my illness than I am by my blonde hair or the fact that I survived an abusive childhood. Having an illness or being a survivor of abuse doesn’t define my character, it’s what I’ve done afterwards that’s made all the difference to the person I am today.
Every time I have a bad day there’s an overwhelming feeling that hits me like a slap in the face. Irrational thoughts of I’m a failure or I’m not good enough come out of nowhere. The frustration that follows a neurological relapse is unreal, parts of my body no longer work as they’re supposed to and stop me from physically doing things I once took for granted. I’m willing my legs to move, my speech not to sound slurred and my hand to un-clench, but without Harry Potter’s wand it’s never going to happen.
On the outside I “look so well” but on the inside I’m trapped while the world moves on around me. I feel so alone. The fear hangs over me like a dark cloud. What if something happens to Adrian and I can’t get out of bed for days and no one knows I’m there? A million “What if” questions run through my head and bring on a panic attack. I can’t breathe, the walls are closing in around me and I want to scream but no sound leaves my mouth.
I’m both mentally and physically exhausted.
Life has been difficult at times. I had to give up full time work due to my physical disability. My eyesight is failing, I have tremors and lack of sensation in my legs, arms and lower back. I suffer from seizures that leave me unable to move for days and often I’m crying in agony because the pain is so severe.
With the help of a counsellor, a physiotherapist, an alternate therapist and, of course, Adrian, I’m making the best out of life that I possibly can. I had to re-evaluate how I did things. I joined a support group for people in the same situation as me, eventually becoming a “buddy” for newly diagnosed members to talk through how they were feeling. I began raising money for the charity by doing a sponsored wheelchair push and arranging a pamper evening for all the ladies. I developed new friendships as well as strengthening life long relationships. I also gave a presentation to health and social care workers where I talked about the advantages of using a day care centre or charity support group from a clients’ point of view.
It gave me a sense of purpose again. My anxiety improved and I felt mentally stronger. It was one day a week but I was making a difference to someone else’s life, not just my own.
I started writing my blog which allowed me to continue my love of fashion and beauty. I began talking to people on line who had similar interests to me, we’d have a laugh, a moan or support each other in whatever way we could. I learnt new photography skills by working my way round the manual settings of a camera, all about lighting and the use of props to tell a story. I stepped out of my comfort zone by posing in front of the camera and (hopefully) inspiring people on what outfits to wear. I’ve explored local places I perhaps wouldn’t have done if it wasn’t for writing my blog. I’ve even learnt how to bake cakes which I especially love doing for friend’s birthdays or baby showers. I find it very therapeutic mixing the ingredients from scratch and creating something that tastes delicious.
I still have bad days, both mentally and physically. I’m proud of all the little things I’ve achieved despite having a disability. I’ve learnt to understand what triggers a neurological symptom to flare up or what causes my panic attacks. Everything feels a million times worse if I cannot control a situation, however much I try to use my coping techniques. Yes I need the help of carers and cannot leave the house on my own or go to the ladies without assistance. But I won’t give up living life and doing the things I enjoy.
I’m incredibly proud of the small things I’ve achieved and won’t let it hold me back. I take life at my pace and still need to hide in my sanctuary every so often, but there’s nothing wrong in that. We all need to a day or two to recharge, no matter what we’re going through.
However bad life gets, I won’t let my illness define who I am, I’m more than just medical appointments, tablets and a wheelchair. It doesn’t make me a failure just because I’m not able to do something the way I once did. My illness isn’t a barrier to stop me doing the things I want to achieve in life, I just have to do them slightly differently.
If you’re in a dark place, remember there’s always someone you can talk to and get help. Most importantly, remember you’re not alone.