People ask because they care. It is lovely that they care. We are grateful and thankful. I am incredibly lucky that so many do care. It is a question, however, that has begun to fill me with dread and unease. How on earth does a person who feels so poorly everyday, answer such a question? It is easier when I am talking with my M.E. friends as they understand that ‘fine’ doesn’t mean fine, it means ‘today I no longer feel that I need to be in hospital.’ I’m sure people wonder and worry about whether they should ask it or not. I know that I do with my M.E. friends. We now word it slightly differently between us: “I hope today is an ‘okay’ day” A good day for us is probably the worst day imaginable for a healthy person.
As human beings we are apparently unable to stop ourselves from sugar coating things. We cannot seem to deal with the cold, harsh truth that invisible chronic illnesses such as mine present. If I was to answer the question of ‘how are you’ honestly it would probably make you uncomfortable. It would probably make me uncomfortable too. You may think I am feeling sorry for myself, concentrating on the negatives. You may wish you had never asked and may never want to ask again. No one likes a moaner. You would not know what to say. It’s a no win situation I feel. You ask because you care and I don’t answer honestly because I care too. It is a tricky one. One that I am yet to get my head around. You may be wondering what it is I want from you. In honesty I’m not sure. But I know that I want your understanding, rather than your pity. And maybe a hug.
“It’ll be okay” will not suffice because the truth is it might not be. To remain at the peril of this condition is not okay. It is no ones fault. There are simply no words for a response so brutal and harsh as our truth. Ours, sadly, is a hopeless situation. We cannot get better by mere positive thought. There are no proven treatments or drugs for us. We are mostly forgotten. Out of sight out of mind. But we exist. We are here. We are fighting our own war despite our disabilities. We have a voice.
This is not negativity. I am a ‘glass half full’ person by nature. I am merely talking about life with an illness that still carries a stigma, even in 2012.
I call it purple time because when I was completing my activity diary for the CFS/ME clinic I had to colour my periods of proper rest in purple crayon. I was embracing my child-like state!
Proper rest (or purple time) is a period of time, maybe only a few minutes long, when I have complete rest. No music. No tv. No listening. No talking. No reading. No nothing. Only breathing. Some people use meditation. I merely sit or lie with my eyes closed and concentrate on my breathing. It can be tricky to clear my head of thoughts and worries but I stick at it and have rest and relaxation. It is recommended for us M.E. sufferers and I can honestly feel the benefits, although short lived, afterwards. If I have an ‘itchy brain’ (a symptom I have where it feels as if insects are crawling between my skull and my brain) it is the only thing that can help relieve it.
I do not sleep in the day time. Purple time is not nap time. I am retaining my brain so that it knows that daytime is for being awake and nighttime is for sleeping. It was hell for the first six months but I have replaced sleep with rest and now it is okay. I am rarely ‘sleep tired’ anyway…
Even my friends have jumped on the bandwagon. We were together for a friend’s birthday and the girls took their role as ‘carers’ very seriously (at times!) They made sure I still had my purple time, whether I wanted it or not.
I try to incorporate this ‘proper rest’ into my daily routine, even on the days (rare as they may be) when I am out of the house. If a friend comes to take me out and parks in a Pay and Display car park, for example, I will use the time it takes her to walk and get a ticket to have a quick blast of Purple Time. Alternatively if we are spending the day at a relative’s house I will take myself off into another room for a few minutes of quiet.
Rest is best!
I am in the process of retraining my silly, broken brain. It is as if the power plug was pulled out before all of the important documents were saved. For example my brain seems to have forgotten that night time is for sleep, it struggles to regulate my temperature, forgets to walk in a straight line, feels dizzy if I am not lying down or have not got my legs up.
I have learnt, as have my fellow sufferers, that stress and adrenaline is not my friend. A stressful situation for me now, in my state of ill health, is having to decide what to have for dinner. It is something so simple yet so overwhelming since my brain has apparently shut down on me.
Within months of my diagnosis I received support from my local CFS/ME clinic. I attended an eight week group therapy course. Each session was two hours long. An incredibly long time for someone so poorly. It was soul destroying to see how much worse I was compared to the others. Not that it is ever a competition. I remember being too weak to take the lid off a pen to write my name. I almost didn’t go back after the first week and not just because it was too much physically. The course equipped me with the tools I would need to help regain some control in my life. It constantly reminded us that there is no cure for us, only steps to help to get some of our life back. The sessions covered:
- Activity cycle-Boom and bust
- Pacing and Graded Exercise Therapy
- Cognitive Behavioural Therapy
- Purple time (I will get to that later)
I have taken from it what I felt applied to me. A lot of people have different opinions on some of these treatments but I am giving it a go. In the past two years I have already seen progress and improvement and got back a bit of the control that the M.E. had stolen.
Less than two months after graduating from university I started to feel ill. I had commuted from home during my last year at university and worked part time as a nanny and helping out with the family business. I had been busy. My body decided it needed a rest. It had a massive strop! It is still protesting after years of constantly being on the go.
In early September 2010 my vision went funny. I have worn glasses since I was 7 years old but this was different. Everything was blurry, out of focus and swimming like you used to get on old television screens. The opticians found nothing wrong. I felt pressure behind my right eye. I had hideous headaches, different from the migraines I was used to. Neuralgia. By the end of the month I was hit by such awful fatigue that I would sleep whenever I wasn’t at work. I was still working as a nanny and job hunting for a full time, ‘proper’ job. By October I was unable to drive. I had to stop working and cancel upcoming interviews. My arms and legs could not manage it, nor could my brain. It was as if it full of cotton wool. My concentration levels and memory had become awful. I was a zombie. I could barely walk. I could no longer manage the stairs. I slept in the dining room. My body was full of concrete. My arms and particularly my legs felt incredibly heavy. My speech was slurred. I was dizzy and faint and felt drunk. I was in pain and my muscles and joints ached in a way I had not experienced despite my years of sport. I will spare you the rest…
I made a nuisance of myself at the doctors throughout September and October. Something was obviously terribly wrong. Queasy at the best of times, I was so desperate I braved my first ever blood test. All results came back clear. I can remember ‘brain tumour’ being mentioned. I was referred to a neurologist. My appointment was only two months away in mid-December but we could not even wait that long. My grandparents wanted me to have answers NOW and paid for me to go private. It was disgusting experience with NHS patients sitting behind a screen on plastic chairs, while we had leather sofas and a coffee machine. 30 minutes cost an extortionate amount of money. I was incredibly grateful to have the help and support of my family though. On the 18th November 2010 I was diagnosed with Chronic Fatigue Syndrome.
I have been ill every day since. I cannot remember what it is like not to feel so very poorly. But I am one of the lucky ones.
So I have no real idea how this works or what I am doing so be nice! Shall I start with an introduction? A bit about me? Well…
I am 23 years old but 24 in November, and, in true Anna Jones style, I am already excited! I have a degree in History. Modern History was my fave. I am tall (for a girl) and have finally accepted that my hair is brown; a lovely, exciting mousey colour, rather than the blonde I had convinced myself it was. Goodness me it is tricky to try and give a clear vision of oneself this way. What else can I say? I like sport! At school, many years ago, I was a bit of an all-rounder I suppose. I was in most of the sports teams, took part in the school plays, sang in the choir on several occasions (my apologies to all those who had to hear me ‘sing’) and I did very well in my exams. Yes. Yes, I suppose I was geek. I didn’t go all-out on the geek front and become a complete loner though. I had lovely friends, and still have many of them today. At university I made some just-as-lovely friends too. I have friends for life! I also have a wonderful family. They’re a lovely bunch! I learnt to drive at 17 and have always been able to get a tan! I have also always worked. Mostly with children but in restaurants too and I spent several years getting to see behind the scenes at Argos. What a treat! I like the normal things: music, books, food (nothing spicy though) and non-scary films (even Harry Potter was too much for me)…
In the last couple of years my life has completely changed. This is why I have started my blog…