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.