When you live with chronic illness it really is just you and the world, that world mainly being touched through media from your bed as you actually cant get out into it. A blessing and a curse at the same time!
The one true beauty I have discovered through years of being alone is being faced with just me for company.
But it has taken me years to appreciate that beauty. Initially there was nothing but ugliness.
I resented this ‘alone time’ as before my accident I was too busy helping everyone else and not myself. I found that I really didn’t like my own company to be honest. So initially the first years after my accident were very dark. I grieved for my old life, I watched friends disappear as you cant maintain friendships permanently in bed and feeling so ill. People apart from the true soul mates get bored with the fact that you simply aren’t getting well. They find it hard to grasp, just as any sufferer does when they find themselves in the throes of the evilness that chronic illness brings. You find everyone around you is in as much denial as you are.
They see you on a good day when you have actually managed to get dressed and wash your hair and you can almost see their body sigh with relief as they smile and say, ‘Oh great you are getting better!’ Nope its just one good day amongst weeks of bad days! I fantasised about punching people in the face when they said things like, ‘You just got to force yourself to get up and out’ and ‘If you set a time pattern and get up early you will sleep at night’ Bless them they were only trying to help, but believe me when you hear it the second, third time round the punching fantasy kicks in deliciously!
It’s funny as I was the same before, if the illness didn’t affect you or the ones you loved then why worry about it or try to understand it? It’s not until it arrives at your door that you have to start deciding whether to welcome it in and try and understand it or leave the door firmly shut ignoring the incessant rapping as it waits for you to answer. Believe me its a relentless beast and it wasn’t going anywhere anytime soon. So those initial years I let it knock at the door whilst I licked my wounds and spent month after month in abject misery and complete denial of my reality.
During the first couple of years I went through the most clearest text book bereavement cycle you could imagine. initially as already mentioned, I was in complete denial that I had, possibly a life long condition with no cure. I was expecting every day to wake up and it would be gone like a cold or a sore throat. On days when the symptoms were milder, I rejoiced and threw myself into all of the chores that needed doing whilst I had been exhausted and sleeping over the past weeks. This then lead to horrific relapses. They usually hit you about 24 hours after the activity. It’s a bit like drinking alcohol, you go for it at the time and then the inevitable hang over hits you like a bitch! Well this particular bitch meant business, so after a couple of hours of doing the washing, tidying up and loading the dishwasher a day later you find yourself in agony and exhausted for the next week or more.
Then the guilt hits you. You go over your whole life and tentatively pick out your less finer moments and convince yourself that you are being punished for being such a shit. You get into a mind set that you have obviously done something to deserve this illness. So as soon as you are awake you get into the guilt car and take the same trip to Guiltsville sucking it up on the way that you are a very bad human being.
Then on the drive the anger hits. The ‘Why me’s’ and ‘why doesn’t it happen to evil people’ and this particular emotion takes you on a roller coaster of peaks and troughs. The peaks ending in gut wrenching sobs and rocking yourself to try and bring some comfort to a grieving body and soul. Then when the anger exhausts you, you start to bargain with anyone in the ether that will listen. I have lost count of the times I asked me to be taken to heaven in lieu of a dying child’s soul, I used to ask that I take their dying soul and they could take mine. Then there are the promises that you will be the best person ever if the illness is taken from you. As an onlooker you would want to put us in a loony bin as talking to yourself, believe me, is pretty much 24/7 either out loud or in your head.
Then the next visitor arrives, depression, inconsolable misery of the fact that you have no future, no one is going to want you as a friend or partner, you have no career, no social life and no way out of this pool of dark murky crap. This one is relentless, it keeps you awake at night reminding you of your dire situation. This then lead to three years of insomnia. I had lost my homes because I couldn’t work and after eight months of being homeless and staying in benevolent friends’ houses I finally managed to rent a cottage in Devon. The irony was lost on me at the time but it was a lodge at a cemetery the first grave being about two foot away from my lounge! I thought it would be peaceful but now I realise, at last with a smile, that I was facing death every day and the mourners visiting their loved one’s graves. Not the best setting!
The other challenge was that I had always been a survivor and had always been the saviour of everyone else, so to ask for help was a complete no no. I was my own worst enemy. I didn’t want to keep telling people how ill I was so despite the desperate loneliness, I chose to put my phone on silent and leave it in the corner of the room. If you spoke to anyone about your illness, it made it real, so it wasn’t worth the phone call. I also figured what was there to talk about? How crap my day had been on a scale out of ten? Plus brain fog and exhaustion made conversations intimidating and impossible. I would go for weeks on end not talking to a soul.
I would will death to knock on the door next to the illness monster who was still knocking. But I was going to let death in on the first knock. I saw no way other than death, it was a blissful fantasy to end this rotting, stagnant existence, with every day being the same. The absolute truth be told, I think I would have ended it in my darkest days if it wasn’t for my two little fur babies that would stare at me wondering why I wasn’t getting up and out. I would never have admitted that to anyone ever in my old life but this is not only about my journey but awareness of chronic illness.
It isn’t a sympathy vote or a need for ‘poor you’ it is a clear depiction of what is happening in this day and age. There are 300,000 sufferers of ME and Fibromyalgia. You see the adverts for help the aged and to remember them at Christmas but as a forty two year old I was in the same boat! An extremely high percentage of GP’S treat you like a malingerer just shoving you out of the door with more pain killers and anti depressants which are supposed to help with the pain. My first GP certainly did treat me like a hypochondriac. She told me to get a grip, it wasn’t as if i was disabled. Stupid woman!
Mind you, my GP turned into my legal drug dealer, I went there craving the next miracle drug that would bring me out back into the world again as a normal human being. I have tried every single drug going that had a hint of being a treatable drug for my condition. Each one brought more futility as it slipped down my throat with no miraculous result.
There are ME clinic sessions which are about as useful as a chocolate teapot where you drag yourself there to fill in a diary of what you have done (pretty easy, sleep, cry, take pain killers, repeat!). Then spend the next couple of weeks recovering from dragging yourself to a diary session where the person has no clue of your condition at all. It made me laugh as when I kept cancelling they warned me I would be struck off of the register. I couldn’t even get my head off the pillow, so inevitably I was struck off.
Then came the pain clinic. I thought great! Acupuncture, hydrotherapy, massage etc. I was envisaging similar to the MS centres where they have these services as well as hyperbaric chambers. Nope, I was told to do Thai Chi, which was about as possible as flying as I couldn’t even raise my arms let alone float them around creating ‘energy’ so the very disgruntled physio said if I wasn’t willing to try there was nothing else they could do. Oh they also advise you about diet, but they don’t take into account the fact that you have no energy to prepare fresh food which rots in the fridge when you are sleeping for days on end.
My main diet was digestive biscuits and tea and on a good day some toast.
So the days lead to months, that lead to years of the bereavement cycle running around full circle like a dedicated athlete, from denial to depression.
I had spent years before my road accident spouting out all of this spiritual stuff to the masses but it never occurred to me to turn it on myself. I felt that the angel realms,the spirit world and my guides had abandoned me. I had been forsaken, I had obviously been sacked from my job as a spiritual ambassador. That’s what I felt, I used to rage and curse at them morning, noon and night for the misery they had dumped me in without a care.
My dad had visited me from the spirit world back in 2013 telling me that I was going to go through the worst hardship of my life but in 2016 it would start to shift and I would work in a completely different way, more amazing than I could imagine. I felt elated at the time as he literally was sat in front of me for about ten minutes, something I know doesn’t normally happen. But with the pain and multiple symptoms I was enduring every second, this visitation wore extremely thin in my memory banks. In fact I started to talk myself into the fact that I had made it up, all the spiritual guff, that it was all bullshit. In fact I thought all of it was smoke and mirrors and all the miraculous things i had seen and experienced in my life from the spirit world was all made up and that every single amazing reading I had delivered was just lucky guessing, I honestly lost my faith and my soul during that time.
But then, two things happened that changed everything. They turned my life around and threw me into a crescendo of acceptance of my reality and the will to fight. Two separate occurrences within a week in February 2014 took place that would change my life in such a beautiful dramatic way, it still makes me breathless when I think of it.
But I think you may have read enough for one day, so I will fill you in on my next post!