Well I guess this is where, if I am to be of support to fellow pain survivors, I need to get totally honest about living with the Pain Monster. I could choose to only blog on the ‘good’ days and when feeling in a positive manner in my approach to living with Chronic Pain, but not every day consists of pain levels that are manageable. Unfortunately, with my condition, Pudendal Neuralgia, I do not get to appreciate total pain free days anymore and I do not remember what that experience even feels like. I do not want to sound negative, it is just the way it is.
At this time of the year, Christmas preparations, work parties, family and friend catch ups, and last minute shopping trips become a priority in life. As this is the first year in an awfully long time where I haven’t been working, my social commitments have been minimal in comparison to years gone by. I miss the excitement that can be felt in a workplace as the year draws to a close and the anticipation of work end of year parties that are scheduled and are the main topic of coversation. I miss having the physical capacity to work. In my case, due to the strength of multiple medications, my intellectual abilty had also deteriorated and I developed what we had termed ‘fluffy brain’. Unfortunately my body and my mind could not continue to function as I needed it to in an Education teaching environment.
Because of this I found myself feeling as if I am swimming where a strong whirlpool is in the water, slowing pulling me towards it, threatening to suck me into its deep and dark depths. However, it is a double edge sword. I do remember how difficult it was when attending Christmas festivities and social events, having to increase my level of morphine and regular medications intake, being careful of ANY alcohol consumption, as when my medications & a glass or two of bubbly was enjoyed, the result could be extremely toxic and quite dangerous. I had also learnt to hide my levels of pain in an an attempt to appear that all was ‘normal’. While on the inside it was a completely different story. In these situations my body was screaming out in pain. I could not possibly keep the “I’m okay” facade. Those who suffer chronic pain could explain this facade very clearly. Last year I did not make it to Christmas Lunch, as they live 2 hours away and my body had hit the wall on all levels.
Emotionally, I am up and down, one minute happy, the next minute sad. I do have a wonderful Pain Management Team, and incredible support is only a phone call away, which for all pain survivors, is incredibly important. I fully acknowledge that this time of year can be difficult for many, for a variety of different reasons. Last Christmas I was unable to attend my family christmas lunch as the pain was to intense to travel the two hour distance. So this year my son has booked a rental house so that I can spread the time of travelling out and pace myself in preparation for the big day. While I am moving towards the place of acceptance in dealing with the permanence of my pain monster I sometimes feel that no one close to me really ‘gets it’ and understands the difficulty in just getting through each. I am sure that many of you can relate.
I found an excellent website which provides the “Emotional Cycle of Acceptance” in regards to Pudendal Neuralgia : http://www.pudendal.info/node/52