As I was writing my post for today on my IC Disease blog, I sort of poured my heart out about how I am feeling a little down the past few days. I wrote about my passion for sharing information on misunderstood illnesses that I suffer from like CFS, Fibromyalgia and IC Disease, and how there are days when I wish I didn’t have to explain anything to anyone. Simple things that are easy for healthy people I feel as though I have to explain and defend as to why I can’t do them because most people just don’t get how hard the simplest task may be for someone like me.
I was naive and thought I could go back out into the working world and fit in with the other employees but after just a few short months I am realizing that I don’t fit in and I probably will never fit in anywhere.
I would love to not have to go through everyting I do and to be able to lead a normal life. I know I have talked before about how “normal” is in the eyes of the beholder, and “normal” to me is probably a lot simpler than what it is to many other people.
“Normal” to me is healthy. “Normal” to me is being able to go into work and not worry about whether or not my register is going to get too busy and I won’t be able to make it to the bathroom in time because of my IC Disease. “Normal” to me is being able to work an extra four hour shift at work a week without thinking how it will affect my health. “Normal” to me is being able to enjoy the holidays without worrying about whether I’m going to be too exhausted to enjoy my son’s excitement when he opens his presents on Christmas morning.
Most days I deal with being sick pretty well but there is something about Christmas that brings up those old feelings of doubting myself and causes me to slip back into a sort of depression over years of chronic illness.
Okay – whine over! I really try not to complain and feel sorry for myself too often. I guess I’m just feeling a little depressed right now. The video below is of one of my favorite Christmas songs. Enjoy the video.
Sandy – I appreciated your sharing the truth of how you feel this Christmas. I have many blessings in my life and also feel like a “whiner” if I’m not grateful all of the time.
For me, I believe this time of the year is a severe reminder of my limitations and feelings of futility while living with me/cfs. I try not to reflect on how I use to be and what I could/would accomplish. I am having a difficult time accepting my current condition, the fact that there is no effective treatment (well, at least for me so far), the exacerbation of symptoms, the difficulties to even take a shower (which is absurd to me) and the weight gain (alot!) in these last several years.
Deciding to go to our Christmas Eve Church Service had me starging at 2 pm with a shower. That in and of itself is a hurdle. Getting dressed in street clothes (not my normal pajama attire) only served to accentuate the excelerated weight gain, which is more than 2 pregnancies I had combined. I stood at the mirror in disbelief. Clothes that were purchased because I was larger two years ago don’t fit now, as I am even larger. I cannot exercise, as even 5 minutes of light exercise creates a setback (honestly, I thought I was already as far setback as possible)
Walking into my church for the first time in a few years proved to be much more emotional than I anticipated. I used to be a Deacon and head of Christian Education on the Consistory. My co-chairperson and I turned the entire program around back then. I pratically lived at the church back then. It was stressfull, but the rewards were countless. As soon as I saw a woman whom I’ve known for almost 20 years, she hugged me and said “I am praying for you every day.”
Ok – so while memories are pouring in and I’m seeing people for the first time in several years, who were kind, loving and genuinely happy to have me and my family at church, I was a step away from a total meltdown. I actually did cry at first, which could be expected; however, the depth of sadness and I guess grief came over me while being overwhelmed with emotion and sad to where I was at this point in my life.
Believe me when I say, I know I have many blessings. I remain thankful most days for what harm God has kept me and my family from. It would be dishonest of me, though, if I did not admit that I wanted the “old me” back, or some new and improved version of what I am now.
Thank you for posting Faith Hill’s song. Very poignant. I hope you have a peace-filled Christmas day. God bless, Nancy
Yes Christmas sort of rubs it in more that you are sick and it is made worse by people not understanding how you feel. Most people can understand flu or a heavy cold or cancer they don’t realise we are the walking dead. I was recently reading about chalydia pneumonia and it struck me that it is described as walking pneumonia and that is often true of ME/CFS, although I am well aware that many people are bed ridden.
In some ways I have been lucky after a course of antibiotics for a persistent chest/throat/sinus infection improved my symptoms my GP suspected Lyme Disease and eventually this was confirmed by a specialist privately. I am much improved after many months of antibiotics but sadly after stopping them recently I am struggling a bit again.
I have through the internet lernt much about lyme Disease it is as controversial as ME/CFS with legal action being taken in both illnesses because of financial interests of those who wrote the guidelines and the exclusion of people with different views plus ignoring much research available supporting a difffernt view.
I have learnt however that many ME/CFS sufferrers do infact have Lyme Disease. We are not always aware of the tiny tick bite, don’t always get a rash or have Summer Flu’. The blood tests are unreliable so it needs a clinical diagnosis and long term antibiotics.
If you are interested in finding out more http://www.lymediseaseaction.org.uk is a charity website although there are many in USA. It is also interesting to watch the trailer of a documentary http://www.underourskin.com also look under press as there are more extracts.
I’m sure there are many ME/CFS sufferers who have never been considered for lyme Disease or in fact the many other pathogens that can cause our symptoms.
Tomorrow is another day and at least Christmas is behind us i wish you Good Health for 2009.