Hi my name is Sarah I’m also known as ‘LEDWAID’ on YouTube, this stands for ‘Living Each Day With An Invisible Disability’ and that is exactly what I do. Up until 4 years ago I led a very active, happy life. When this all began I had no idea of what was happening to me and why. I had hardly any information and really had to learn the hard way, which has led me to where I am today.
My disability has been caused by years of surgery, since 19 years old I have had multiple major abdominal surgeries. Five ectopic pregnancies, a full hysterectomy and several operations to remove aggressive scarring adhesions (scar tissue) and also having the my bowel re-sectioned twice from obstructions.
Scar tissue always forms after surgery but only a small percentage of people suffer from aggressive scarring adhesions. This means they attach to the organs in my case the kidneys, bladder, stomach as well as wrapping around the intestines, causing blocklages and obstructions.
Unfortunately, as doctors now know, scarring adhesions grow back even more aggressively after surgical removal. As they grow they thicken and stiffen, becoming bonelike, so you may be able to imagine how painful that is with movement, digestion etc. After my last operation of Adhesiolysis (removal of adhesions and re-section of intestine) the pain just didn’t go away.
I certainly wasnt used to this! Previously, after surgery I would bounce back, get healthy get a tan go back to work and carry on with my life. Not this time! the pain stayed and actually got worse. I kept going back to the surgeon telling him about this, saying ‘I think something went wrong, the pain is getting worse’ in the end he told me thats just the way its going to be from now on and there is nothing more that could be done because if they gave me more surgery more adhesions would grow.
I tried living with this for a while the pain would get so bad and I’d end up in the ER to be told the same thing over and over. I was even told it was all in my head and I sould think about seeing a phycologist! So I continue from doctor to specialist endlessly until once again the last specialist told me ‘It Is What It Is’ and the only thing I could do is treat it as a pallative care situation, learn how to meditate, get acupuncture, use medication what ever I could do to get it under control because it probably wasnt going to change!
So I learnt the only way to manage this pain is by medication, physiotherapy, meditation, gentle exercise and a very strict diet along with alternative therapies like Reiki, Accupuncture and pacing myself have also helped me. Then, when it is too severe, the only way to ease the pain is to lie flat. I spend many hours, each day, lying flat!
I used to live with my partner in the cabin we built on a bush property in the beautiful Deua River Valley on the South Coast of NSW. For many years I worked in the Health industry either special care nursing or in administration roles like coordinating community nurses. At age 36 I left all that to fulfill my working passion and retrained to become a florist. The funny thing was I ended up working as the florist for R.P.A and North Shore Private Hospitals! I also helped my partner, who is a musician and does sound recording, at various gigs. I loved having my friends over, going out or just hanging out. I used to enjoy shopping. I used to enjoy my life!
Now I am so restricted and isolated that I feel as if I have been stripped of all these things, including my independence. Yet I can still manage to have a shower do my hair put on a bit of makeup and look good, as if none of these things even existed. It is because of this that most people have a hard time understanding what is wrong with me, or how I feel.
Four years ago I had to move back home to live with my Mum at age 41 and although I love and adore my Mum deeply no one really wants to do that. Most days I feel so fortunate that I have a safe place to be, and that Mum is more like a best friend, luckily we get on really well. But there are other times I feel frightened and nervous especially about the future.
Right now I am anxious and depressed because on top of all that I have had all my teeth removed and am now facing a life with dentures. This is happening because my teeth have been weakened by anesthetics and medication, plus poor teeth run in my father’s family. Last Tuesday I had all the top teeth taken and a immediate denture placed. I am healing well and its not painful just a bit overwhelming. I know millions of people live with dentures I just have to get used to them!
I’m not meaning for all this to sound all doom and gloom. I’m just wanting to tell the truth, with all that said, I still have a good sense of humor manage to laugh and stay as positive as I can. Its really just that I miss my work and social life and feel that by joining CPA and writing on the forum when I can, I will be able to connect and add a bit of purpose and direction to my life. Maybe even contribute some small thing back to the world.
Thanks for taking the time out to read this, I hope your day is filled with sunshine
Sarah thank you for sharing your story, chronic pain may be different in everyone of us, but the life story is similar with all who are inflicted, denial, anger, why me, loss of purpose and direction in life. Years are spent looking for a cure, but there comes a time when we have to accept this is what life as dished out, learn to live with pain, cherish to the good days and deal with the bad days the best we can, having a positive attitude and a good sense of humour goes to show you are willing to fight and not give in to pain.
What an incredible journey you have had! You have a wonderful outlook though and I am sure that goes a long way towards helping you to cope. It's perfectly normal to have worries about the future at times. I think we all do; it's only if you get stuck in that mode for a long time that it pays to talk to your Dr about it.
It's great that you and your Mum get along so well. As far as others not understanding what you are going through; try giving them a copy of "A letter to people without chronic pain". I have found it useful a couple of times. There is a link on the forum under " Helpful Links" or you can Google it and it comes up almost at the top.
There is also a book you can get as an ebook called "But you don't look sick".
There are lots of people here to chat with who totally "get" what you are going through.
All the best. Keep us posted!
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
WOW WOW AND WOW
Hi Sarah ,
You are awesome in a word and you can still have fun what all on this site say is true , you say you can laugh and try to enjoy life too good on you but when you do people question your pain ? It is the strength inside you which is putting up the wall to hide the angst and anger about how life is so unkind .
I could keep going on this but I won't but welcome and don't be shy to share
as long as I wake up alive I'm happy
Because it could be worse
Thankyou so much, I cant begin to tell you how happy I am to be part of this group. Such a relief to talk to and read about people who understand Phew!! Also big thanks for letting me know about the chronic pain letter and the ebook that's going to make things easier.
You're such a brave beautiful woman and you have survived so much in your life and you still manage to laugh and stay positive as much as you can which is wonderful to hear. I hear your desperation about feeling anxious and frightened about the future because I'm feeling like that at the moment, the uncertainty about what the future holds "a life of pain" I've been living with pain for nearly 5 years now and sometimes I don't know if I can cope with this for the rest of my life so that in it self is enough to feel down and out about. I miss my old body and I still grieve my old life working and overseas holidays. I live on the beautiful south coast and not to far from you actually however, near the ocean you are inland and its very cold where you live. Does the cold weather play havoc with your pain?
Take-care and thank-you for sharing your story.