I need help

I need help with how to cope with lupus Ive always been the one look after/ love /care for oldies in community now Im the needing help and it,s hard to take.

How do you as fellow suffers deal with day to day tiredness/painfull joints/ vomiting and fever ? i sometimes feel useless and that im not doing my share of the work though my sisters in community assure me all they wont is for me is to do what i can and leave the to them.

But ive always beenone to pull out all the stops for others and its hard to not be able to do so now, so any tips on coping with this thing called lupus iwould be so glad of.

thanks judith

10 Replies

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  • Totally understand where u're coming from as I have always been the same. No matter how hard it is, sometimes u have 2 take a step back & admit u're finding it tough & need a bit of help, I must admit I found that very hard 2 do but once I did it & admitted 2 myself that yes, I'm not in actual fact Superwoman, things became much easier.

    Personally, having been diagnosed 4 over 18 years now, I've become used 2 alot of the problems lupus causes & regard it as 'normal' (it's amazing what u can get used 2 if u have 2 & r in the rite mindset). Just learn 2 listen 2 u're body & do as it tells u (rest when u need 2 etc) & get some decent pain meds. The way I look at things is as long as I can dull the pain enough 2 try & do the day 2 day things, that'll do 4 me. Admittedly sometimes no matter what, I have 2 admit defeat & just live in my bed feeling crappy 4 a few days but so be it, & I know that when I get back on my feet I have so much extra 2 do, like housework etc but so what? The most important thing is u're health & once u learn how 2 cope & manage with it, it will get easier. Good luck :0)

  • Try & allow your sisters to extend you some grace for a change. It's really hard to do, but maybe if you take a back seat for a while, you will feel able to help others again some time in the future. But for now, you are the one that needs to be looked after.

    Very best wishes. X

  • thank yoy sher78and roobarb

    you are both right my sisters need to be allowed their ministry of love and care and i will step back and let go.

    sher78 yes it takes a long time to allow yourself to give but this nun will take to heart all you have and start to listen to my body and rest the others dont if im not up in the mornings so why should i??

    thank you both judith.

  • hi roobarb

    thank you ,you are so right and yes its hard to do but why should i have all the of looking after the oldieswith their cest for life and laughter dont ever think convent life is dry and lifeless its full of laughter.

    But my sisters need to care for me and i need to let them i can play part in the life of the house in lots of other ways so bless you and thank you judith

  • Dear wood

    I'm glad you can see this more clearly now. I was worried I didn't express myself very well earlier. I think what I meant to say was: that you should try to have the grace to except your sisters help.

    This, is in fact, a quote from a blogger with a chronic illness, & I will try to find the actual quote so you can read it first hand. It touched me very much, because I am terrible at asking for & accepting help myself. Even after 14 years of illness. It will be expressed best in the Bible, of course.

    There was a convent of nuns near where I grew up, & they were the most wonderful, happy, kind & caring people I have ever met. I felt a little jealous of them, if I'm honest. I was too much of a party girl to have the strength required for your lifestyle, but all that has changed with lupus.

    It is a huge learning curve with this illness because it is constantly changing & presenting new symptoms. But I'm sure your belief in God will give you strength in many ways. I hope eventually you will come to realize, that there are also good things that can come out of your illness. Although, there may be times when it is very difficult to believe this. Be patient with yourself.

    Thank you for your blessings. They are gratefully received, & warmly reciprocated.

  • Hi Roobarb

    yes we are a happy lot though its not all sweetness and joy.

    I found yor advice really helpfull and yes there are good things with lupus and im finding the joys as well as the pitfalls keep in touch if you would like to i would every blessing judith

  • Hi Judith, I also completely understand where you are coming from. It's so hard to ask for help when you have always been a 'giver' yourself. It's a habit (pardon the pun) that's hard to break. I'm sure all the other sisters know you so well and do genuinely care and what to help you, so please allow yourself to accept that care. You will still have so much to offer others with the wisdom you will have from having a chronic/invisible to others type of illness. I'm happy that you are within a caring environment and wish you all the strength needed to deal with this condition. xx

  • Hi Judith, I can also understand how you are feeling. I have always been the one there to help when everyone else has nipped out the back door. My whole life has been lived around doing things for other people, I guess its what makes me tick. Friends, family, work, everything, I give my all to. My work in recent years was as a carer, working with the elderly, but unfortunately this I had to give up last year to a really bad spell with my health.

    I am also a Christian and attend Church regularly, I do everything possible to look after people and love them, and ask nothing in return. I volunteer my time at Church, I am a volunteer visitor, going into homes for the elderly, I help with the admin side of things...

    But you know, God wants us to to take care of ourselves too. We are important and deserved to be looked after as well as we look after others. Sometimes it is necessary to look past what we feel we 'ought' to be doing and allow our bodies the time to recover so that eventually we can go back out there and do some more! Your work is not yet over, look at taking a back seat as God preparing you for the next stage in your ministry...

    Many blessings to you xxx

  • hi silvermyst,

    thank you its good to you are there and rooting for all of us i willreply more fully when ive don todays chores which are not many a couple of pots to wash if i feel up tp it.

    thanks for the blessings and mine to you x

  • Hello Judith

    Your favoured even with the fact that u have lupus. Accept ur weakness dat is d only way u can work on ur strenght. Having lupus has thought me to accept the pain I go through and to also knw that what ever is happening to me, or what ever state I find myself that God is aware of it and he wants me to be here going thru this at this particular time.

    It hard to accept that u can't do things urself but by HIS grace we all learn to accept. Take care and God bless. My email is ijeasike@yahoo.com. We can chart more if u wish so send me an email.