A couple of weeks ago I was in a really bad place. To be honest, things aren’t that much better now. During this time I had an interesting conversation about pain and my ability to cope. Since the attack at the age of 18 my anxiety levels have been rather erratic. With the anxiety and stress comes more pain. I suffer from migraines, face, neck, shoulder and arm pain. Both neurologic and muscular. This can sometimes completely wiped me out and leave me unable to communicate. The pain is totally debilitating to the point where I feel sick and I can’t form my sentences properly. With this comes total withdrawal; mentally, physically and spiritually. I shut down; emotionally and physically, while I try to deal with the pain. In this time, I find it hard to communicate, I cannot get comfortable and I cannot lift or move my arms and hands freely. This happens a lot and most of the time I can hide it from co-workers or acquaintances, however, I cannot hide it from my family and friends. Especially those who I live with.
While I try to reassure my loved ones, and tell them that I am ok and that I am just in a lot of pain and need some time, it is hard to live with someone who is like Jekyll and Hyde. One minute I am happy and chatty and looking forward to my day, then within half an hour I can be an angry mute who just wants to be left alone. The only thing that really helps is a massage. This relaxes me mentally and physically and loosens the muscles and in turn the nerves. Unfortunately, I am not a millionaire so an on-call massage therapist is out of the question. So for the most part I try to stretch the spasmed muscles and rely on medication (something I hate). Without the medication I would be unable to have any quality of life.
Surely you should be used to it?
From being ill a lot of the time, over time people’s sympathy and empathy diminishes. Unfortunately, for us long term pain suffers the pain doesn’t. During the conversation about my pain and my stress my friend said: “Surely you should be used to the pain by now!” When you live with pain every day, day in day out, surely that becomes the norm and you learn to get on with it?” He pointed out, that unlike others who think they are dying after one day of a bad head cold, I somehow must have become used to this pain, even immune to it by now and be able to function the same as any other human being who lives day to day without pain.
I know there will be a few of you raging as you read that. I was a little taken aback myself. Especially beings as he is an intelligent chap. But alas, he obviously does not understand. I am not taking this as an opportunity to bad mouth him or discount his view in anyway. He has never even set foot in a hospital in his life, so he can not even begin to understand or sympathise with a chronic pain patient. He doesn’t understand other people or the struggle they go through. The conversation did make me a little sad. Part of me felt weak, needy and angry at myself because I have to rely on people to help me and the other part felt totally sad and helpless.
For all those people who live with someone with long term illnesses or pain, just for the record you can never get used to pain. Pain is not a natural state of being. Pain restricts your ability to do things and really impacts on your hormones and your ability to feel happiness. Over time it wears you down and it often means that you are more prone to other illnesses and disease. Not only this, but situations that an average person can cope with just fine, can become a big deal for a chronic pain patient. Being in a constant state of pain is tiring and frustrating. And it can also be very isolating.
Working & Living
I know being back at work and working from an office desk can be quite a challenge and that is one of the reasons why I cannot undertake a full time job. By 11-12 o’clock every day out come the strong pain meds and there with it goes part of my functioning brain. I try and stretch out and take a walk to the toilet. But once the muscles have spasmed and the nerves start to fire off, the only hope I have is to numb the pain a little. The rest of my work day is a bit of a nightmare. Lunch is often unappetising and the pain makes me feel sick. When I am trying to type and use the mouse, the nerve running down my neck, arm and hand starts to fire off. This then leads to the trigeminal nerve firing off and my head and neck muscles becoming so stiff and pressurised that I am sitting at my work station hoping that someone will actually chop my head off.
I also can not drive too far or stand or walk for too long. Christmas shopping is an absolute no-no and I opt to buy my gifts online. Doing my own hair is a challenge so I opt to let it dry naturally or when I can I pay the hairdresser to dry and straighten it. Ironing is another no-no, I cannot even lift the board and the iron to get it set up without triggering pain, so I still rely on my mum to help me. Large boxes, bottles, pans, casserole dishes, bags of washing, laptop bags, shopping bags, pull handle doors and anything else that is heavier than a 500ml bottle of water physically hurts me to lift or move.
Unfortunately, for thousands of people all over the world, pain is a constant and daily battle. One that you cannot often see being fought. People often make jokes about my weakness and limitations but it is a reality for me. I would love to be NORMAL. And even typing this now, my eyes are filling with tears. I feel so flawed as a human being. This article isn’t supposed to be a woe is me moment, it is supposed to help you understand what chronic pain patients go through.
Many patients are worse off than me. The drugs cannot contain their pain and they are suicidal and bedridden. Some people are in so much pain they cannot physically talk, stand or lift a thing. I know I am lucky in that respect and I know I need to learn to love myself and embrace the pain because the pain is part of who I am and it has lead me to the place I am at now. Unfortunately, I resent it, I hate myself for not being able to fix me, to be stronger and to be more stable. It is a constant battle, body and mind and one that I know I need to approach with more compassion.
On a final note, I have received a few nasty messages over the past few months and I want to say for the record I am sorry if you think I have let you down. I am sorry I can not be there for you all and make all your pain go away. I feel guilt every day that I do not respond or blog. There are only so many hours in the day and in between my job, running my own house, going to my appointments, dealing with extreme tiredness and my pain and trying to see my mother and brother, I do not have a lot of time or energy to do much else. Mentally and physically I feel broken. When I usually have a spare hour after sorting everything out at the end of a long day at work, I am in so much pain and so drugged up that I can hardly speak, let alone read, reply and blog. I just want to curl up with my heat pack and sleep. Unlike what some people believe, my battle is still on going, I have not been cured and I suffer, just like you do every day.
I also lost my God Mother Ann in October after her battle with cancer. And this is another reason why I have been so quiet. Ann was one of the closest and most constant people in my life. She has been there for me since the day of my birth, came with me to the hospital appointments when my mother couldn’t make. She was at christenings, birthdays, Christmas and even supported us all when my baby brother Arran died. My mum and brother were able to be with her son by her side when she passed away. She was an amazingly strong and wise woman and I know that me, my brother and my mum are going to miss her dearly.
Despite everything I have going on, please know, I am sorry and I will try my best to get back to you all. I receive so many messages and some often get missed in the message request file. I set up this blog to help people and to make sure people do not feel alone and I know my lack of response or recent blogs goes against that. I cannot make any promises that things are going to get better, because my health has been bad recently to the point where I thought I was going to lose my job. But I will try my hardest to get around to blogging and replying a little more than I am now.
Thank you as always for the support and I shall speak to you soon.