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some tips for the newly diagnosed
Hello
You've been already had good advise from the other comments but I just thought I'd add a few tips of my own.
Firstly I think it's important to develop some acceptance of your condition and to get educated about lupus. I also think it helps if you are as honest as possible with yourself, family, friends, etc about how lupus affects you, and to feel able to ask for help and support when you need it.
Accepting my lupus and the limitations that this may put upon me has helped me cope and to remain relatively stable with my symptoms. My doctors are pleased with how much better I seem compared to when I was first diagnosed, and now consider my lupus to be stable and "mild".
I think that many of the improvements in my health are not just because I'm on plaquenil treatment, but have been due to me accepting my disabilities and adapting my lifestyle.
Also my friends and family say it's easier to cope with me, now that I'm asking for support or saying when I can not do something, rather than when I was not communicating my difficulties and was "in denial", as then they were just worried about me, did not know how to help, and could see that "my pushing ahead as if nothing was wrong with me" was making my condition worse.
This message board site also has "The Lupus site" (see link up near top of page) which is full of useful info. Also if you are in UK I'd definitely recommend that you join the charity Lupus UK -http://www.lupusuk.com/index.asp as they do loads of good work for lupus (provide info, support etc and have local groups where you could meet others with this condition)
After diagnosis it did take me quite a while to accept my disease and initially I was not very good about following advise to avoid the sun, or to pace my activities, but these simple measures can make a big difference.
I'm not so sun sensitive that all my outdoor activities are prevented due to lupus but I do have to be "sensible in the sun", so I avoid sunbathing; I avoid holidays abroad at times when the climate would be at it's "sunniest"; I use a sunscreen lotion pretty much all the time in months March-October if I'm going to be outdoors (In UK you can get sunblock products on prescription so ask your GP); and I follow the general "sun-sense" advise of covering up with light clothing, wearing a hat, seeking out the shade, avoiding the sun when it's at it's strongest etc.
Doing all the above allows me to still be able to enjoy my garden, my holidays etc and have a relatively "normal life" despite my disability.
Also my doctors advised 3 things which really do help me:-
1- Pace all activities.
Even on "good" days when you may feel relatively OK don't over do things and stop before you get tired.
It's OK to need more rest than most "normal people" when you have lupus, so don't feel guilty or lazy if you need to take rest periods between doing one thing and the next, if you need a short daytime nap, if you need to delegate some tasks that "pre-lupus" were your responsibility, or if you need to cancel prior arrangements. (cancelling pre-planned things used to be really hard for me to do but friends and family do understand and believe me "plodding on" when you know you aren't really well enough can set you back)
2- Try to get adequate sleep but not sleep too much.
I usually wake up feeling as if I've not slept properly and if I allowed myself I'd sleep for hours and hours (I've been known to sleep in for a whole days at a time!). However sleeping all the time does not actually help, so I try to stick to a routine of sleep whereby I allow myself up to 10 hours of sleep a night (12 hours if I'm in a bad flare up) but then I "force" myself to get up and dressed regardless of what my body is telling me. Sometimes I'm so exhausted that I need a nap later in the day, or I'm not able to do much with my day other than the general basics such as cooking meals, but at least getting out of bed in a morning helps keep my sleep pattern as "normal as possible" and I think it helps prevent me feeling depressed
3- Try to do some gentle exercise.
This can feel like the last thing you want to do when your tired and aching, but it does actually help in the long run. Just do what you can (even 10-15 mins a couple of times a week can make a difference). I find yoga or walking are suitable things I can do at my own pace, and they help me sleep better as well as keep my joints and muscles in "working order".
I avoid doing much exercise when I'm in an actual flare up, but other than that I try to do what I can. Some days it's as little as a couple of yoga stretches but on other days I can manage a mile or so walk.
I'm currently trying to get my GP to refer me for hydrotherapy as I used to love swimming but have been finding it hard to get my motivation going and so think proper hydrotherapy sessions may help me to get into a routine to go for a swim, as well as give me a range of suitable exercises I could do in the pool
I hope this helps, good luck in adapting to the "new lupus you".
Personally I think that as long as you make allowances for your condition and adapt your lifestyle, then there is no reason not to be able to have a happy and relatively "normal" life despite having lupus
Hello
You've been already had good advise from the other comments but I just thought I'd add a few tips of my own.Firstly I think it's important to develop some acceptance of your condition and to get educated about lupus. I also think it helps if you are as honest as possible with yourself, family, friends, etc about how lupus affects you, and to feel able to ask for help and support when you need it.
Accepting my lupus and the limitations that this may put upon me has helped me cope and to remain relatively stable with my symptoms. My doctors are pleased with how much better I seem compared to when I was first diagnosed, and now consider my lupus to be stable and "mild".
I think that many of the improvements in my health are not just because I'm on plaquenil treatment, but have been due to me accepting my disabilities and adapting my lifestyle.
Also my friends and family say it's easier to cope with me, now that I'm asking for support or saying when I can not do something, rather than when I was not communicating my difficulties and was "in denial", as then they were just worried about me, did not know how to help, and could see that "my pushing ahead as if nothing was wrong with me" was making my condition worse.
This message board site also has "The Lupus site" (see link up near top of page) which is full of useful info. Also if you are in UK I'd definitely recommend that you join the charity Lupus UK -http://www.lupusuk.com/index.asp as they do loads of good work for lupus (provide info, support etc and have local groups where you could meet others with this condition)
After diagnosis it did take me quite a while to accept my disease and initially I was not very good about following advise to avoid the sun, or to pace my activities, but these simple measures can make a big difference.
I'm not so sun sensitive that all my outdoor activities are prevented due to lupus but I do have to be "sensible in the sun", so I avoid sunbathing; I avoid holidays abroad at times when the climate would be at it's "sunniest"; I use a sunscreen lotion pretty much all the time in months March-October if I'm going to be outdoors (In UK you can get sunblock products on prescription so ask your GP); and I follow the general "sun-sense" advise of covering up with light clothing, wearing a hat, seeking out the shade, avoiding the sun when it's at it's strongest etc.
Doing all the above allows me to still be able to enjoy my garden, my holidays etc and have a relatively "normal life" despite my disability.
Also my doctors advised 3 things which really do help me:-
1- Pace all activities.
Even on "good" days when you may feel relatively OK don't over do things and stop before you get tired.
It's OK to need more rest than most "normal people" when you have lupus, so don't feel guilty or lazy if you need to take rest periods between doing one thing and the next, if you need a short daytime nap, if you need to delegate some tasks that "pre-lupus" were your responsibility, or if you need to cancel prior arrangements. (cancelling pre-planned things used to be really hard for me to do but friends and family do understand and believe me "plodding on" when you know you aren't really well enough can set you back)
2- Try to get adequate sleep but not sleep too much.
I usually wake up feeling as if I've not slept properly and if I allowed myself I'd sleep for hours and hours (I've been known to sleep in for a whole days at a time!). However sleeping all the time does not actually help, so I try to stick to a routine of sleep whereby I allow myself up to 10 hours of sleep a night (12 hours if I'm in a bad flare up) but then I "force" myself to get up and dressed regardless of what my body is telling me. Sometimes I'm so exhausted that I need a nap later in the day, or I'm not able to do much with my day other than the general basics such as cooking meals, but at least getting out of bed in a morning helps keep my sleep pattern as "normal as possible" and I think it helps prevent me feeling depressed
3- Try to do some gentle exercise.
This can feel like the last thing you want to do when your tired and aching, but it does actually help in the long run. Just do what you can (even 10-15 mins a couple of times a week can make a difference). I find yoga or walking are suitable things I can do at my own pace, and they help me sleep better as well as keep my joints and muscles in "working order".
I avoid doing much exercise when I'm in an actual flare up, but other than that I try to do what I can. Some days it's as little as a couple of yoga stretches but on other days I can manage a mile or so walk.
I'm currently trying to get my GP to refer me for hydrotherapy as I used to love swimming but have been finding it hard to get my motivation going and so think proper hydrotherapy sessions may help me to get into a routine to go for a swim, as well as give me a range of suitable exercises I could do in the pool
I hope this helps, good luck in adapting to the "new lupus you".
Personally I think that as long as you make allowances for your condition and adapt your lifestyle, then there is no reason not to be able to have a happy and relatively "normal" life despite having lupus
