I can understand that people want me to be the person that they knew and loved for 21 years. Nobody wants that more than me. But for better or worse, times change. With M.E. most things are out of our control. There is very, very little we can control. We will inevitably have to cancel plans because our brain has decided to be an awkward bugger for no apparent reason. It is no ones fault. You may not hear from us from time to time. We may not reply to a text. We are not ignoring you. We are poorly. Very poorly. We are not doing it on purpose. We are not pretending. Why on earth would we have chosen this life of invisible but constant illness? And nor are we depressed and lying around feeling sorry for ourselves, wallowing in our own pity. Depression can come as a result of our illness. M.E. has taken our lives, but it has not killed us. We are in some kind of limbo.
Who wouldn’t feel down in such circumstances; When you are too weak to make it to the toilet and so you wet yourself or have to have someone spoon feed you or dress you and brush your teeth for you?! Our 100% may not be nearly as much as the average persons 100%, but we do try to give all we’ve got to maintain our relationships.
It is not the life I would have chosen, but it is the life that I’ve got so I try to make the best of it and smile at the simpler things in life. I believe that you have to give in to M.E. in order to recover. Let it win the battles in order for you to win the war. Giving in to it is not giving up. It is merely tactical. Like other illnesses, we cannot fight it. We have to work with it much as we hate it. I have had to accept that I am not, and cannot be, the person I was before I became ill. It has not been easy but I have started to adapt my life to fit my new limits. Again, this is not giving up. To maintain my independence I have had my hair cropped short so that I am able to wash it myself. My arms are too weak to manage anything longer at the moment. I would never have been brave enough to do it before. Not many people like it, but I have more important things to worry about than what I look like or whether people approve of my hairstyle.
On the handful of times that I am able to venture out of the house, using a wheelchair means I can save the energy I would use walking for other things such as chatting to friends or cutting up my own food in a restaurant. It was not an easy choice. I never imagined I would ever have to make such a decision and with my legs becoming weaker, and my walking slower, it was surely the sensible and best option. Of course my brain and body will still throw a wobbler afterwards, but the aftermath may be slightly less horrific than it would have been without the wheelchair. My friends find the wheelchair highly entertaining and feel the need to use it themselves if we are out together. Apparently it comes in handy to hang their bags on! Their ‘driving’ skills leave much to be desired, but I am a firm believer in laughter being the best medicine!!!
Fatigue is not tiredness.
It is hard to imagine how weak or fatigued you are with this illness. I’m sorry if you can imagine as it means you must be a fellow sufferer. I wouldn’t wish this on anyone.
Sleep does not improve our condition. In fact the mornings can be the worst for me. We never wake up feeling refreshed or rested as human beings should. We are often hit by night after night of insomnia. Staying up all night is not nearly as fun as I remember it being at university!!! We are not lazy louts who lounge around all day watching television. We are often too poorly to watch tv. It requires energy that we do not have. It is simply too much for our brains to process. With me, my vision is still affected by my M.E. and so this makes it difficult to read a book or magazine. If my vision was to behave, my concentration levels are not always up to the challenge anyway because of the overwhelming fatigue.
To cut a long story short, our bodies are not able to produce energy like they once did. Our batteries are flat and nobody knows how to recharge them, other than to rest but even that only charges us to a fraction of what we’d hope for.
To be too fatigued to speak sounds ridiculous I know. However, the muscles needed to do so are sometimes too weak. The energy required to get these muscles going is no longer there.
Next time you send a text message think about what you are doing. Your fingers have to be strong enough to press the keys even on a touch screen phone. Your brain must function correctly so that you can form proper sentences and remember the conversation that you are engaged in. The effort it takes to move your arm and head and neck to pick up the phone…
The same applies when you make a cup of tea. You must first lift the kettle. Run the tap. Fill the kettle. It is now even heavier than it was before. You reach up to open the cupboard. Get out a mug. Put it on the work surface. Get out a tea bag. Get a spoon from the drawer. Walk across the room to the fridge. Pull the fridge door open. Bend to get the milk. Close the fridge door. Walk back to the kettle. You must also remember that the kettle is hot and you should not touch it. With a condition such as mine you have forgotten these apparently unforgettable ways of life like needing to wear oven gloves when removing something from the oven…your brain ceases to function as it should.
So no, we M.E. sufferers are not ‘just tired.’
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!