My problems unknown to my sister!!

Tomorrow my brother is getting married and I have gone to great trouble to find something lovely to wear which is comfy, easy to put on and looks good. My sister asked me today why I never wear a skirt and when I told her I have to wear trousers because I simply cannot get tights on because of my pain etc she was horrified, she said she had never realised that RA was this bad and she was shocked that the pain I suffer can affect me like this. What I am saying is never assume that your nearest and dearest are aware of our problems. We had a chat and I gently told her that I have to compromise on so many things nowadays and she shed a tear and said she was sorry that she has misunderstood things for so long. I am 65 and she is 54 and she just thought I was getting old prematurely!! Anyway, looking forward to tomorrow ....

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  • Hi Jocketi, I'm the same as yourself nearly all my family and friends had no idea there was something wrong with me and how much pain I was going through, it's not until they visit me and see me when the RA has kicked in and they see me with splints on and using a walking stick or a crutches, it's the same with my Pulmonary Fibrosis when I am sitting down they look at me and think it cant be that bad till I stand up or put on my shoes then they go Wow I had no idea, You go and have a great day at you brothers wedding and hopefully be pain free. Matt

  • I know how you feel about others not realising how you are affected by the condition and the restrictions and adaptations you have to make in daily life. By doing this I think we feel less conspicuous and more "normal" but in some ways it hides the problems we have from our nearest and dearest as well as the general community.

    Hope you have a great time at your brothers wedding but don't forget not to overdo it you don't want to suffer later

    crisxx

  • By the time you read this the wedding will be over and your brother married, I hope all went well. I have had the same regarding tights and I am looking into purchasing some hold up stockings to see if I can manage these any better, I wondered if you had tried these as well? Other than that in the past I have just gone without tights and worn longer length skirts and dresses.

  • I find it very sad that more is not done to raise awareness of rheumatoid arthritis. We all do our best to educate those around us but unfortunately it doesn't appear to be enough. I've noticed that whenever there's a news report in the media about RA it is usually accompanied by a picture of a very elderly pair of hands or someone in a nursing home. I'm glad you were able to share with your sister and I hope you have a lovely time at the wedding x

  • oh i sorta know that feeling. My family are understanding.

    But i was asked to allow a student doctor into my consultation a couple of months ago, he was shown into my consultation when i said yes. We laughed and chatted and he was a lovely young man. I got to get up and my nurse helped me,( i was in a flare at the time) and you all know the stiffness... cant get out of the chair thing, well he nearly died, his face changed and there were tears in his eyes. I started to apologise to him! and he said he was so sorry, seeing me laughing etc sitting down he really did not appreciate my problems, i think my nurse set him up, but he told me he would never forget it as a doctor, so maybe it helped one person , me looking like an old gran that day!!

    So i hope you managed at the wedding and had a great time and that other people at the wedding have been inspired to find out more about RA by your bravery. Axx

  • Its interesting what it is that finally makes it "click" for other folk. For one of my friends (who has some mechanical back pain), it was me saying something about how much codeine I was needing to take every day just to keep pain under control enough to keep up my work (3 or four lots of 60 mg) - and her realising that 8 mg knocked her out, so I must be in an enormous amount more pain that she ever is. For my mum (who has bad RA) it was me describing how long it took me to get out of bed.

    Hope you had a lovely time at the wedding.

  • Well, brothers wedding day went well, in fact the ceremony was held outside in the hotel gardens, which meant me having to go down and then back up about 20 very steep steps which proved very difficult for me, but the whole day was enjoyable. I had a few little blips though, we were sat on the top table for the meal and my husband was one end and me the other end of table (think the plan was to mingle us!). The main course arrived, very nice but I was so embarrassed, I am having to wear brace on left hand, and Cutting up my lunch was very difficult! I realise now how much I depend on my husband to help me. Anyway, dessert was eton mess and this was great, no cutting up involved what a joy!! I am seeing cons. Ortho surgeon tomorrow regarding my left wrist, such severe pain which I have had for about six months now. I had an x ray which showed a hole in the bone, rheumy thinks could be bone cyst or maybe tumour even, hence this appointment. Just hoping for some kind of diagnosis to try and ease this pain. It was good to see comments from others regarding people not understanding our RA problems, maybe we should be bit more vocal about things. When i was struggling to get up down from my chair during the actual wedding ceremony yesterday I felt embarrassed and I know that is wrong, why feel like that, since the RA struck I often apologise for my disability and I don,t know why. All I know is when the toast was called for the bride and groom I was still sitting when all the others were standing and I was mortified because I could not get up, and not one single person asked me if I needed help, sad. Will post again tomorrow after hospital visit, lynda x

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