This September marks the 20th Anniversary of when I first became ill. It was 20 years ago, to the month, that I, as an 11 year old with a romantic soul, climbed on top of the rocks, against a cliff in the Cornish sea. With my legs stretched out behind me and my head held wistfully high, I was Hans Christian Anderson’s Little Mermaid. Alas the waves soon began to beat hard against the rocks and my romanticising was cut short. I managed to climb off of the rocks and with my sister just in front of me I began to make my way back to the shore. It was at that point, when only up to my hips in the water, I began to feel the pull of the current taking me away from the shore. My sister was struggling too but somehow she made it to the shoreline. As the tide went in very quickly, I was pulled in the opposite direction- frantically trying to dig my feet into the sea bed to take myself forwards but simply feeling the sand disappearing from between my toes. It was a matter of minutes, or maybe just seconds before I found myself out of my depth completely. As the current underneath pulled me out, the current on the surface pushed me forwards which only served to push me under the water. I had always been a very strong swimmer but I had no say in the matter, it felt as if a huge magnetic force was pulling me away from the beach, away from my mother. Occasionally, my head would bob above water, allowing me to take a quick, life-saving breath before I was once again pushed down. A man in a kayak tried desperately to get to me but as his vessel sat on top of the water the surface current simply pushed him towards shore. I prayed to my grandmother to save me, and I saw her there beside me, trying to protect me- my cynical mind now attributes this to a lack of oxygen. Somehow my mum, the original tigress, managed to charge through the water, fully clothed and out of her depth and found me. She grabbed me and fought her way through the water to return me to the beach. You hear about mothers being able to lift cars off of their children, and I can truly believe it because for all of the lifeguards and others on the beach that day, it was only my mother who managed to save me.
The traditional 20th Anniversary gift is China.
I am therefore gifting the Chinese nation to my broken body.
I won’t bore you with the rest of the details about that day but fast forward a couple of weeks and I was still suffering. I was constantly vomiting, exhausted and in pain. The pollution in the water that I had swallowed had given me a virus that just wasn’t shifting. Eventually, after time spent in hospital and undergoing every test available I was diagnosed with M.E. Three and a half years later my health worsened after I was ill with the flu. For a very long time my mother had to bed bath me on the settee, carry me to the toilet and tend to my every need whilst I just laid there 24/7. I was confined to a wheelchair and school washed their hands of me. During periods of relative remission we begged for them to give me an education, but being a wheelchair user it was denied to me. Two months before my GCSEs my mum bought me a maths Lett’s book and I managed to sit that one exam.
Throughout the years I’ve had periods of remission and periods of relapse. It can be wonderful to be in remission, but with it comes the suspicion by those who don’t understand remitting and relapsing conditions, that you’re faking it. I’ve spoken to many people with M.E. who’ve had the same experience that people just do not understand how ill they often are, particularly as they can only see others during periods of relative remission. It’s especially difficult to make others understand when half of the people you meet turn around to you, in response to telling them that you have M.E., with the line “Oh, you mean yuppy flu?” I spend half of my life wishing I had an illness with better PR. Five years ago after massive painful lumps began appearing all over my back I was also diagnosed with Fibromyalgia, another illness which needs better advertising.
Every time I’ve made progress in my life during a remission, it is stopped dead by a relapse. I’ve begun numerous courses and had to leave them before completion, I’ve begun jobs which I’ve had to leave after a fortnight, and managed to begin volunteer positions for a couple of hours a week which I’ve had to pull out of before I’ve barely begun. Last year, after seven years of trying and having to pull out of courses left, right and centre, I finally graduated with a First Class degree in History from the Open University. Miraculously I’ve managed to get married twice. My first husband I met during a period of ill health, but he didn’t really understand how sick I could become, that was until I was pregnant and he couldn’t cope with having to stay home to care for me when he’d rather have been out with his friends. My second husband, who I met during a period of remission, has been a brilliant carer no matter how ill he has seen me become. Three months into our relationship I had a bad relapse, my mum told him that no one would judge him if he walked away, he didn’t. I’ve also had 3 children, each birth nearly killed me, but we made it. It’s not easy being a parent with M.E. My mum and sister both moved in with me to help me care for them as babes, and my husband had to take time out of his career when my youngest child was born. We’ve had carers and my eldest child has become a carer himself. When they tell me that they wish I was a “normal mummy” and that they desire that I could do more with them, I have to admit it stings- a lot, and I feel so terrible for them. When I once imagined my future self having children, the picture in my mind was very different. I had imagined pushing along their strollers, running around in parks, and taking them swimming. In a remission I have to manage my spoons carefully, in a relapse I can’t get out of bed. At the moment I am able to get out of bed, but barely leave the house. A dear friend of mine takes them to the park, but I cannot help but feel the sharp stab of jealousy.
Over the years I have idealised the thought of recovery. And on a couple of occasions I managed to convince myself it was my time. I’ve made so many plans about what I am going to do when I “get better”. I now wish I hadn’t because the disappointment physically hurts. I will no longer do that to myself. I am trying to come to terms with the idea that I will never get better and I have to work within those parameter. I won’t lie, it’s really bloody depressing being ill for so long. For most of the last 20 years I have been a prisoner in my home. I feel like I’m the furniture in the lives of my loved ones- they come in and out as they live their lives, but I’m always here; just waiting for someone to come back. It feel s like my life hasn’t yet begun and I’m scared that one day when I’m on my deathbed I will feel like life completely passed me by. But, enough of the depressing stuff. It’s time to manage my expectations. I am not going to be a lawyer or school teacher as I dream about. The odds aren’t on my side with that one. I’m 31 years old and I have a CV that is akin to a clean sheet of paper. But I do need to make money- there is a financial imperative (cf my post My ATOS Nightmare Narrative), but even more urgent is my psychological need to be independent and achieve something. I’m making steps though. After a lovely reader of the aforementioned post emailed me with some great links I’ve signed up for a lot of copy writing sites and I’ve got a lot of artwork ready to be sold. I and my mum are currently in the process of setting up a website to showcase and sell our arts and crafts and we’re hoping to have a stall at some craft fairs. I don’t know how much money I can realistically expect to pull in from these streams- interest from others and energy are always going to be restrictive factors, but I’m going to try nonetheless. In the meantime I will keep looking around for whatever options I can find. After 20 years I cannot go on letting my life be unlived. I cannot go out very much, I cannot do very much, but I’ve got a sharp mind (when I’m not brain-fogged), creative fingers, and more desire than can be quantified.
With all that in mind I would like to wish my disability a happy 20th anniversary. You’ve buggered me up left, right and centre, but I’m still here, alive and kicking (restless leg syndrome), so I win!