Fell off my perch

I had surgery on my foot as a teenager for a nodule, it deformed my foot but I went nursing regardless. It would have been juvenile arthritis but back then there was no follow up and so my normal became different to others and I hiked and sailed not realizing that when I hurt it was worth telling someone. I would over the next 20 years get what I thought were flus, sore joints, etc. I would become fatigued easily but finally at 41, I started having swollen fingers, my ankle swelled and it was painful to walk. I put my head on my GP’ s desk and said I can’t go on I am so tired. She referred me to a rheumatologist and at first he was a bit cross as he couldn’t understand why I had left it so long. However, when you are a mum, a nurse etc. you soldier on. I titled my story fell off my perch because that is how it seemed. So much changed as the years went on. I am now 58 and I had to give up work at 53. My bloods improved after I resigned! I was working with a raised ESR and generally unwell when I look back. I even had to ask someone to open my car and turn the ignition as my hands were so painful. It was tough as I had to admit I was incapable of my job. The rheumatoid has affected my hands, my wrists, my shoulder, both feet and my knees look weird but so far touch wood they are functioning if I don’t do too many stairs. My main passion is walking my dog on our nearby beach and I do that regardless of the weather in the afternoons. I am on methotrexate injections after becoming ill with Plaquenil and sulfasalazine. I have a supportive husband who is very understanding and reminds me not to over do things. I tend to go at things like a nurse cleaning up after surgery and then I fall in a heap. I love my garden but some things I can’t do like I used to and I am trying to make it more self caring!!!! The perception of friends to how and what I can do is variable and I find myself preferring to do things on my own as I can gauge when I have had enough, slip out the door when I want to. I read the stories of young mothers with this disease and my heart goes out to them as it must be so hard to not be able to fully rest up and take a break when the going gets tough. This site is excellent and very informative as it is a lonely disease that sneaks in and steals when you least expect it to. Having been a nurse I know there are worse fates but this is real and dogged determination is required at many levels on any day.

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