Can anyone tell me what "normal" feeling is?

Hi, I've had lupus for so long (20 years) now that I just don't know what normal is... sometimes it's awful talking to people who don't know illness b/c you will describe a day in the life and they will agree and say that they go through all that stuff too... which has led me to second guess myself and not have any clue what is normal.

I haven't had the lupus antibody present for a few years; however, my days all look different... does this mean I may have good days and bad days? is this out of the norm? or does every person go through this?

what I experience are days where I am extremely tired. some days I am extremely energetic. after gardening in the heat, I will be flat out for 2 days after. is this normal? I sleep after work every day. I find I have a crappy quality of life of just working and sleeping and getting up long enough to make dinner and go back to bed. weekends are recovery days where I can't do anything. Is this normal or abnormal? my old nephrologist has said that I can perhaps consider myself lupus free now bc i HAven't been lupus active for so long. however, I still have meds for blood pressure, fluid retention, blood disorder and depression... I have damaged kidneys. I also get sick easily and catch things easily. am I really lupus free? if so, what's wrong with me now?

more importantly, what is normal???

6 Replies

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  • your a normal person with lupus .bad and good days are normal for us i regulary have to go to bed in the day time to recover . go back to your gp tell him everything have more blood tests can anyone stop having lupus ? i personally say no .

  • hi teacherwithlupus

    its funny because i have also wondered over time what is normal, as like you do have some really good days where i feel energetic and happy and pain free (just) and i can almost put lupus to the back of my mind.

    however i was told or read i can t remember that lupus can go into remission and never rear its ugly head for years or forever (we all hope for that) and also my rhumy said that my mild lupus could and usually does stay mild and never developes into serious lupus.

    but i agree go have another blood test and see what happens

    goodluck

  • What an important question! I, like you, have been diagnosed with lupus for just over 20 years and still no two days are the same. I no longer work, I had to retire 18 years ago but retrained as a teacher, and taught for part time for 7 years. Recently, I have been unable to continue even part time. If lupus is an incurable disease how can you nephrologist say that you are lupus free? Just because you kidneys, though damaged, are stable does not mean that you are disease free.

    I know that we sometimes doubt ourselves people put our symptoms down to 'bugs going around' but believe me if they suffered they way we have in the past and continue to strive with 'bugs going around' they would really know the difference.

    Please stay strong and live each day as it comes and know that there are other people who like you have had kidney nephritis along with all the other pains that lupus offers and have to keep going. Sending you love and a million hugs x

  • Hi, I too believe that I have had Lupus for over 30 years but it was diagnosed as ME, viruses and depression. I do not have a positive blood test but have a positive skin biopsy. I am experiencing a bad time at the moment with extreme fatigue, joint pains, migraines etc. I often question what is normal and get angry and depressed that I can't do what the average 55 year old does. I had to give up my job as a nurse and miss it dreadfully. I hate the fact that I have no control over my life but I know that I can't give up. It doesn't sound like you are in remission to me and I do sympathise. You are not alone and it does help to sharehow you feel with others. Love xx

  • Thi s is so helpful!! Thank you all! I, too, feel like I can't keep up with my job. I feel like other teachers function much better, but I seem to have a brain block and not attribute it to my lupus. I just think that I am a more lazy person or something. I wonder how teachers who have young families cope b/c I'm sure I could not teach if I had young children (babies). I am so very close to going part time, I'm just trying to figure out how to supplement my income when this happens!

  • Hi - I have had lots of tests, still no definite diagnosis. I have a stressful job and after much soul searching have applied for early retirement. At work I asked for a lighter workload but after a couple of weeks was asked when I would get back to normal. How long is a piece of string? I just don't know. I think colleagues doing same job thought I was putting it on. Just because I don't look ill doesn't mean I don't feel it! I know just what you mean - all I seem to do is rest ready for work again - so I've taken the plunge - 3 months to go....could you do any private tuition at home to supplement your income? I'm hoping to do something in future but hope to rest and look after myself a bit first. All the best x

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