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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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Comments

  • calpug223
    3 years ago

    I had scarlet fever as a young child, and was finally diagnosed with primary Sjogrens’s syndrome at 19. Like you I had a”normal” that apparently was not normal. Because I was prescribed dmards for the Sjogrens’ it kept the flares down. I think I have had RA a lot longer than when I was diagnosed in 2014. I can tell you that I have damage from RA in the hips and shoulders that shouldn’t be there if I have had RA for so little time. This is such a difficult disease to diagnose.

  • suann
    3 years ago

    I too had surgery on my feet and heels for nodules it also deformed my feet, from the pain of the nodules it sounded like great idea to finally being able to be pain free, little did I know its was the beginning of the end..My RA is now crippling, cant do as much as I once did and Im okay with that,, cant be anything else, I have my days I cry in pain while I do my dishes or make my bed or even trying to bathe myself..It sure is no fun at all to have limited to no quality of life, My husband passed in 03 and I choose to be by myself raising a grandchild from birth because I am not able to be there for anyone like one would deserve to have, im okay with that too, I have accepted my life and what has been dealt to me..I’d like to tell anyone who has problems with taking care of oneself,the story on devices to use. I have them all and they are wonderful and work so well when u need them..Take care all..Hugs

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