Loneliness has become a very frequent feeling as family and friends step back because I am just too hard for them to be with. As a result I have become insecure about inviting myself to be with anyone or do anything with anyone.

To be honest there are times I feel that the pain condition I have is too much to bear on my own. It is not the pain itself but all that goes with it. When the pain specialist told me I had Chronic Widespread Pain Syndrome (CWPS) as I am very sensitive to my environment and had lived for too many years with stress it made sense.

He said the main stressors were a difficult marriage, being the oldest child of a very large complicated family and a high pressure job. To reduce the pain I needed to control the stresses of marriage, family and work situations which sounded very hard emotionally and I cried. So I have ended the marriage, moved away from family and will not be a bookkeeper again. I feel in a way I had no choice but...!

Some CWPS symptoms I have are reduced pain threshold, fatigue, depression, anxiety, memory loss, cognitive dysfunction, migraines and headache. Sometimes I feel like a hypochondriac but these symptoms are all diagnosed. Cognitive dysfunction and memory loss are the hardest to live with as I have a very active mind. I have had to stop work as a bookkeeper which I enjoyed and found challenging. When I can't follow a conversation or remember a friend's name I feel frustrated. Frequently I am laughed at in conversations because I get confused. I feel embarrassed and
I am sure that if I did not “look good” no-one would have pointed at my confusion.

Depression is hard to live with and affects my emotions a lot. So if asked “How do I feel” the answer could vary from day to day or even within the day. Unfortunately my response may be hard to hear as I may not be coping at all at that time. I understand the depression as so much hard stuff has happened with very little support since “it all started” in 2010, not long after my 50th birthday. Fatigue is a big issue because if I don't feel motivated to do things my depression increases.

I also have Chronic Daily Migraine and Headache which is very disabling and affects me a lot socially. My pain specialist also told me I am hypersensitive (to lots of things). Yeh. To go out for a coffee first I have to choose a coffee shop and when inside I need a quiet spot so (migraine) and air flow (red rash) don't start. Oh, I can't have the coffee too hot either. I feel like a nuisance and a pain!
Oh, and if I eat I can't have anything hard (jaw dysfunction) or spicy, hot, acidic or citric because I have a lack of saliva (an auto immune disease). I also have painful numbness in my mouth because a nerve was damaged during a biopsy 4 years ago so I have to be doubly careful at the coffee shop!

When a person starts a conversation with me and makes the choice to ask me how I am that person is saying that they are choosing to listen. This means more to me than anything I can think of.

In a way the pain that is invisible becomes visible.

Our Sponsors

pfizer logo


Seqirus Logo Color amaccropped landsborough medical centre

Our Aim

Care and compassion count.

Lets disrupt the stigma. Together anything is possible.