Just Here today For Supprt

My older son has come home for the winter break. In spite of seeing me 7 weeks ago, and knowing my lupus has been diagnosed, he was close to tears at how thin and unwell I look. Granted, I have had some virusy thing for the last week,but his reaction has shocked me. I hate to think of him worrying about me from a distance and not being able able to help, much as he would like to. i'm upset because I hadn't realised how much I have gone downhill, and because I could see tears in his eyes as he turned his head. just need to share .....

6 Replies

  • He probably didn't notice before but now you have been diagnosed he is looking closely. Just let him know now you can start meds then it will help and if you really need him you will let him know. You being worried about him won't help yourself,. Lovely to know he loves you so much though. Let him help while at home. Hope you enjoy your Christmas

  • He sounds a lovely boy. Perhaps he's ready to read a little about lupus and if you're clear with him about how he can help a little. I'm glad you've got such a compassionate son

  • I too have a son and daughter aged 20 and 17 and the last thing I want to do is burden them with my illness, however it's also very important to include them too without frightening them.

    My kids are old enough to understand and old enough to help me when things are tough personally for me the more open I am about lupus the less they worry if my kids ask me a question I answer honestly but with a positive attitude, luckily I have a good husband who takes all the anger,tears,emotional side of things so my kids don't have to.

    I know it's hard but try and look after yourself by eating healthy and go to your GP if things get really tough sadly us lupus patients need to take care of ourselves as medication lack of exercise and low mood can have a really bad effect on us.

    Hope you feel well soon we are always on here for support 24/7.

    Xxxxxhave a good xmasxxxxx

  • Hi Lupyknit :)

    I am sorry that you look and feel unwell at the moment. On the plus side now you have been diagnosed you can maybe work hard on the things that you can do to try and "fight!" this horrible illness. Go for it all guns blazing!

    Research food groups/diets that work for you. The use of relaxation techniques can also be beneficial. Make sure you get adequate rest and sleep. Ask your doctor if it is advisable or even possible to do some daily exercise. Surround yourself with family, friends, objects anything that may have a positive uplifting effect on you.

    Let the medics work out the rest. I am sure that you are in "good hands!"

    Take care and I hope you have a happy and healthy New Year!

    Midge xo.

  • Thank you all for your kind replies. Today my son has just sat and chatted with me, and it's been good. He had already been looking up Lupus, so he knows quite a lot, though he completelty agrees with me how it definitely isn't a "one size fits all" condition. We're busy working out the things I most need help with on a physical level while he (and number two son) are here. We are going to take a day trip to the coast, though the weather is dreadful. Even if all I get is a quick breath of sea air through the car window I will love it!

  • Your son sounds very caring. I have a 20 year old son who is away at university so again comes home in the holidays. I only found out recently that during his teens he used to worry every time he was away from me, he told me he was worried that I may die. I felt awful that he carried such worry at a young age. While he has never been keen to read information on lupus, I have explained "The Spoon Theory". On my less able days, I simply say I have run out of spoons. In the past he has chosen to come along to some of my appointments so he has heard first hand what is being said. When he is away I keep my bad/low days etc to myself and only talk to him when I am having a better day so he doesn't worry. I have always assured him that I would contact him if there was an emergency. My two other older children bury their heads in the sand and never even ask how I am. There is no winning! I hope you feel better soon.

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