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Scary times

Discussion in 'Living with lupus' started by mea, Apr 21, 2020.

  1. mea

    mea mea

    Haven't been on here in a while as I got really busy with work and I guess just didn't have much energy left at the end of the day, which is a good thing as I like keeping busy.

    Healthwise things were going pretty good until my sugars started risingo_O, reduce prednisone and taper off and now none, return of breathing issues and flare in joints and muscles. Along came the corona virus so Doctor has taken me of work until at least the middle of June as I am high risk of complications should I be infected. Been at home now for a month and starting to go a little stir crazy. Hopefully they will find a treatment and vaccine soon, so many people sick and dying.

    Hope you are all doing ok.:grouphug:
  2. Jessica1

    Jessica1 Moderator

    Hi mea, it's good to see you back. I think we're all going a bit stir crazy:(.... as much we're naturally sociable creatures so we miss seeing everyone we normally would, it's not that normal for us to be in each others' pockets at home so it's all a bit strange isn't it?

    I really miss seeing my family, my adult children, grandchildren, sisters and Dad but on the plus side it's quite nice to take the slower pace of life without feeling guilty and being able to take rests when I need to.

    I'm photosensitive so I'm used to not going out for meals, not doing the shopping etc so for all the people who are complaining so much it's useful to demonstrate how we live as a norm.

    Are you able to do anything about your flare? Can you contact your rheumy or doctor to ask their advice?
    Take care,
    Smile Of Life and mea like this.
  3. mea

    mea mea

    Hi Jess, I miss my family and friends too.

    I'm photosensitive as well, break out in hives all over if I get much sun, the shade is my friend.

    I've been taking anti-inflams to help things settle for now while I wait for things to calm down with the corona situation as I don't want to visit the hospital unless I absolutely have to. If it doesn't soon start to improve I will contact my rheumy though.
  4. lazylegs

    lazylegs Moderator

    Thank goodness for computers. We have been playing board games with our daughters via Skype. Between all our gabbing and playing the games it takes an entire afternoon. I can't reach out and hug them but we are all eating, drinking, laughing and generally having a good time. Since the gym is closed I have been working out with some of the easy online videos. I've found a few podcasts to follow also. It seems there is always something of interest to look at during my down times. Without a computer I would probably go stir crazy because there is only so much cleaning and cooking my body will allow me to do in one day.

    Mea is it possible for you to ask for a televisit or a phone appointment instead of going in and being exposed to germs? The doctor is limited somewhat by you not being there in person but generally I have found the ones I have done recently to be very positive.

    Take care,
    wolf1 and mea like this.
  5. Jessica1

    Jessica1 Moderator

    A telephone consultation is what I was going to suggest too, it's not the best but it's better than nothing if it can help you in any way.
    I've been reading my grandchildren bedtime stories over WhatsApp, it's been very nice. I'd started walking in the evenings last week but this week it's hit me, a combination of UV and overdoing it so I'm taking a few days out to recoup. That's the bonus of isolating that there's no time demands so I'm able to do that.

    Please keep us updated mea and let us know if you do get a consultation. Try to take it easy if you can.
    mea likes this.
  6. mea

    mea mea

    Hi guys, nice to hear you are enjoying your family time even though you are apart, thank god for phones and computers.

    Going to contact my rheumy and see what he says, thinking I will have to go back on pred at a low dose. I was the one that wanted to totally stop them because of the high sugars but I'm thinking now that may not be one thing and cause problems elsewhere, constant juggle. Will let you know how it goes.

    Stay safe.
    wolf1, Smile Of Life and Jessica1 like this.
  7. Ann2

    Ann2 Registered

    Thinking of you all and hoping our lives will return to normality very soon. It has been so hard hasn’t it, almost unreal.
    Hope everyone is coping - hang on in there!
  8. x_claire_x

    x_claire_x Moderator

    Hi Mea...just quickly to say that my Rheumy told me a couple of years ago that at a Lupus convention for the medical profession he attended.... it was found that if you get patients off the steroids totally , even if in the interim all is well, the symptoms are very likely to come back after about 2-3 yrs or so without them. So the target was to keep patients on a low dose just so that it keeps things at bay. I therefore was told to stay at 3.5mgs, which I have. Just thought it may be of interest to you x

    I lost my best school friend to Covid19...she was having dialysis and sadly the nurses passed on Covid to her. She was very frail and her trying to facetime me whilst having CPAP was heart rending. I did manage to speak (literally) at her the night she died...her son rang me and I chatted about nothing really, school days etc. She was 55. I miss her. This virus is awful and I hope soon that a vaccine is found often takes a long time though. But in this case it seems the whole world is pulling together to try and find a solution.

    Be lovely to get out and about again without the paranoia !! I so want to hug my grandchildren. One is nearly 9 mths old and has cut teeth, sitting up, pulling to standing etc, missed it all !! He looks at me quizzically as if to say ...and you are ????? LOL Oh yeah that woman on the TV.. (Zoom). Mind you when I get to do the childcare I may be wishing for some quieter time haha.

    Take care all of you out there.
    wolf1 and Smile Of Life like this.
  9. keebler

    keebler Moderator

    Im sorry to hear about your friend Claire. Hugs and prayers for you and her family.
  10. lazylegs

    lazylegs Moderator

    Covid has taken far too many wonderful people. My condolences to you Claire.

    Stay safe everyone.
    wolf1 likes this.
  11. Jessica1

    Jessica1 Moderator

    My condolences to you too Claire, it's a blessing that you got to talk to your friend but under such very tragic circumstances. Sending hugs and hoping for better times very soon:grouphug:
  12. sagehen

    sagehen Junior Member


    I am so sorry for your loss of your dear friend.
  13. Surferboy

    Surferboy Registered

    Claire, so sorry to hear of your loss. So many lovely souls have lost their lives to this thing. I put it into perspective for my eldest the other day as to how many we have lost in the UK. I explained that an fully packed premier league football stadium of supporters have died over the last 5-6 months. The look of horror on her face is indescribable :(
    wolf1 likes this.
  14. x_claire_x

    x_claire_x Moderator

    It is devastating when you think of it like that..but very well described Surferboy. thanks guys xx
    Surferboy likes this.
  15. wolf1

    wolf1 Registered

    Hi Clare
    I too lost a friend Thro COVID it’s awful coz you can’t go to see them.
    Keep safe
  16. Laranne

    Laranne New Member

    It's hard to bear the loss, and more so without any contact. Stay well.
  17. mea

    mea mea

    Claire, I'm so sorry for the loss of your friend, hugs. Been very busy with work so have not been on lately. Hoping now that the vaccines are out the world will soon return to normal.

    I'm back on the low dose prednisone as well now and have come to terms with the fact that I will most likely need it for the duration.
    wolf1, x_claire_x and Jessica1 like this.

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