My name is Andrea Easy, I’ve been with my husband for 27 years, we have three children ages 20, 9 and 4. We have been foster carers for 15 years. I have started writing children’s books in my spare time. We have a dog, a cat and two hamsters, and to add to that I also have multiple sclerosis.
Multiple sclerosis is classed as an autoimmune condition (I class it as something else, which I’m not entirely sure I can write on here). In basic terms – or how I understand it – my immune system has lost the ability to distinguish between the good guys and the bad, and so it starts attacking the protective sheath (myelin) that covers nerve fibres and causes communication problems between my brain and the rest of my body.
The most difficult thing about MS is how sporadic it can be, and the fact that no two people with MS will ever follow the same path with their symptoms. It’s your own little personalised condition. My MS path has taken me on a journey of being diagnosed at 37, at 11 months post-partum with our second child. My left calf went numb and gradually the numbness crept up the left-hand side of my body. I was sent to the hospital and after MRIs and a lumbar puncture, I was diagnosed with having MS. Which I had never heard of. So, of course, I went on Dr Google and what a mistake that was, curiosity definitely killed my spirit for a short time.
My husband is my rock and my everything. He would wrap me in cotton wool and leave me perched somewhere, where I could come to no harm. However, he knows that I’m not that kind of person. I love to be busy and doing something. My friends are my spirit, they truly are the ones that make me laugh, cry and laugh again, they will encourage and push me. They help me at the drop of a hat if my day starts to go downhill due to my MS. I don’t feel alone with this disease, because of the support I receive. I inject a drug called Copaxone three times per week (this is not fun, and I will never get used to it). It slows the progression of the disease. I inject in my thighs, stomach and backs of my arms. Each time I inject, I get an allergic reaction, with large mosquito-like swellings and bruising that lasts for days.
This condition has affected me in several ways. The MS affects my mobility: I suffer with stiffness of my legs and constant burning pain in my thighs and hips. Sometimes the stiffness can be felt up my spinal cord. I have woken up with blurred vision and pain in one eye (medical term, optic neuritis). This condition can occur to the point of near-total vision loss or, like myself, just very blurred vision. I have constant nerve pain in my legs. I struggle to take medication for this as the drugs leave me spaced out and I want to be present and effective in my life. I feel vulnerable as sometimes brain fog can leave me lost for the simplest of words. Which, in turn, makes me feel very stupid and unable to hold a proper conversation, making it hard for me to meet new people. I struggle with self-doubt in my ability to achieve things. I had a lot of ambitions when I was younger and still do, but I sometimes struggle with the thought that these may not be achieved. However, I was recently told that I must first love and believe in myself and the rest will come naturally. I lack confidence in trying new things and putting myself out there. I have tremors, so my hand and head shake on their own and can become worse when I am extremely tired. Sometimes when I am tired my speech slurs, and I am not drunk!!
All of the aforementioned things come and go sporadically, sometimes on a daily basis. I try to be a glass-half-full type of person; however, there is the occasional leak and I feel as though, no matter how much I put in, I’m in a constant battle with this vessel of a body.
My mobility issues mean I have been awarded a blue badge which brings a whole other barrel of problems. I am not old; I like to wear make-up and nice clothes. I’ll be damned if I’m getting that walking stick out every time I use my blue badge. I’m very conscious of the stares from people as I pull into a disabled bay to park my car, all of them craning their necks to see if I’ve put a blue badge in the window. Even if I have, I know that they are still watching me. They can’t see the fact that I’ve had to push myself beyond most people’s pain barrier just to get dressed this morning, and that the thought of walking around the shop just for bread is not highest on my list. I get out of my car and usually just look straight ahead and try not to engage with a soul for fear of being judged!
Society can be very unforgiving. People love to label others and place them in a box; if you don’t conform to their ideas of what they believe to be true, then you are either not believed or are ostracised. How many times I have said to people, ‘Oh, I am so fatigued today!’. In response, I hear, ‘Oh yeah, I’m tired, I know how you feel’. Now I’m sure that person is tired, however, until you have felt medical fatigue, you really do not understand what I’m talking about. That sounds harsh – I don’t mean it to be – but when climbing the stairs is akin to climbing Everest or the thought of standing in the kitchen to make a cup of tea makes you cry as you are so physically tired, it can become a bit grating to hear ‘Oh yeah, I’m tired too’!!
One piece of advice I would give to someone who encounters a person with a hidden disability is be understanding. Don’t try and play down their condition by matching it to your stubbed toe that is giving you issues with walking. Don’t lump every person with a hidden disability into one basket, we are all individuals. So your second cousin’s friend Jeff who has MS but runs marathons is not like me, so I must be lying about my condition … go figure!!
More and more is being learnt about MS and I hope to see lots of progress about changing disease outcomes over the next few years. We are lucky where I live as we have access to a mobile MS nurse who will come to you at home and she is always available to speak to.
My MS … if I didn’t have the support around me, it would definitely affect me mentally. It can leave you with a sense of no control over your own body. You don’t know, when you wake up in the morning if everything is going to be fully functioning. Questions that run around your head are, Will I be able to speak? See? Walk? Your nerves control every action in your body, so this is always at the back of your mind. However, I for one cannot and will not live on ‘what ifs’. I have things to do, I don’t have time to wait for this condition to decide what my life is going to look like. This is why I started writing poetry and children’s picture books. My whole life has centred around children, through having my own as well as fostering over 30 children and young people. MS will not stop me living my life. I have just had to adapt my surroundings to help me be the best version of me that I can be.
By Andrea Easy