Living with Rheumatoid Arthritis and Fibromyalgia

Living with any chronic illness is difficult. Especially if what you suffer from is invisible and one day you can go for a long walk and another day you can barely do basic chores. I have lost friends because of it. Just when I needed support it wasnt there from some of the people I know. I am blessed that I have a wonderfully supportive husband and a few good friends. But some people are not as lucky as I am, and I truly feel for them. By telling my story of a day in my life I hope to help others by letting them know they are not alone!

This particular morning was a bad start to the day. Its cold here in New Zealand as we are in our winter. My joints were stiff and hot that I had to stay in bed until the heater warmed the room up. Of course to make matters worse my fibromyalgia was also in full pain mode. I was supposed to meet a friend but as I could not even get out of bed I had to cancel, which made me sad I also felt guilty for having to cancel on them.

I eventually managed to drag myself to the shower after taking painkillers, as the heat would hopefully ease the pain. I managed do make a cup of tea on the sofa wrapped in my warmest clothes. I was feeling a little sorry for myself at this point. To anyone else feeling like this dont feel guilty you cannot help how your body is. I didnt bother with breakfast and just wanted to rest. By lunchtime, I realised I needed to eat so got myself some food and by the early afternoon, my pain eased and my overall mood improved. I practiced self-care by reading a book and listening to some relaxing music.

By bedtime, my pain was back and despite painkillers I was so sore and stiff that I hardly slept. Nightime is a recurring issue for myself and many other people with chronic illnesses. I thought the day had been wasted, but by looking after myself the next day was much better. If I had tried to do more I would have spent another day unable to do anything.

Another issue with chronic and invisible illnesses is even when you do go out for example on a bus you are made to feel guilty for taking up a seat for disabled people, or when parking your car at the supermarket in a disabled place people look at you and have even been known to tell you off for parking all because you do not use a walking aid. Its as if people only see you as a disabled person if you have a wheelchair or walking stick of some sort. Every disabled person whatever their situation deserves to be treated in an understanding way as they have enough to deal with without people berating you in the street. I think there needs to be more awareness of disability in general and how difficult it can be navigating the obstacles that those with chronic illnesses face each and every day.All people want is to be treated equally which is not too much to ask.

My advice to others with chronic illnesses is to go with how you are feeling and not feel guilty for staying in and looking after yourself.You are all warriors who live with many difficulties but still carry on. So never blame yourself for being ill. You are doing the very best that you can. Never ever forget that!

Alexis Mundy