Lupus and Grief

Lupus and Grief

The Impact of Grief on Lupus

My mom passed away a few weeks ago after an intense five-week battle that followed her diagnosis of pancreatic cancer in late September. I had been helping to care for her, mostly just sitting by her bedside, assisting hospice caregivers, making soup and being “present” through it all in support of my dad, as we carried out her wish to die at home.

Lupus has not made any of this easier. The wolf knows when your stress levels are high and when intense emotional experiences are lowering your resistance and inner resolve. I am worn. That sums it up best I think, and lupus is seizing the opportunity to kick me when I am down.

There is no doubt in my mind that stress and grief and those impactful emotional times in our lives give lupus the upper hand. I hurt everywhere. My pain medication barely takes the edge off. I have lost 15 pounds and I have a handful of hair falling out.

My doctor is sending me to a cardiologist to get to the bottom of the chest pain I have had for the last couple of weeks. I am hoping it is just some extra fluid or swelling, something that has occurred before from a lupus flare, and something that has responded well to steroid medications. But I just don’t know, and the unknown is making me nervous, which of course fuels the lupus even more.

For now I am just trying to breathe and make it through each day. I am trying to sleep, though pain in my body and grief in my heart is making it difficult. I watched my mom die as the cancer slowly devoured her those last few days. It keeps playing in my head like a bad video clip I am helpless to stop. But I am hopeful that I can regain my ability to redirect my thoughts and gain control over this flare I find myself in.

My Plan for Recovery

I have a plan. I am not sure it will be effective but I will share it in case you find yourself in similar circumstances with lupus on the attack:

  • I will allow myself quiet time: I feel the pressure to get back to what is normally expected of me.  My work is what carries my family through financially, so I will do what I must to keep my work flowing and checks coming in, but I will ask and allow myself a little extra time.  I will be gentle on myself if I fall short.  I can only take/do so much given how I feel.
  • I will accept help: When it came time for the funeral, I accepted that I could not physically take on making all the food. I am an avid cook, but this was just too much with all the pain my body has been in with this flare and all the other arrangements I had to make. I accepted help that I normally would have refused.
  • Keep the faith: I have to believe that I can beat this flare and that time will make everything a little easier.  There will be better days…even though this is not one of them.
  • Care for myself: I will try and eat better. This whole thing had me eating just what happened to be available or not eating at all.  It is time to get back to my normal, veggie-rich diet.

How have you coped with intense, emotional life moments and a sudden flare?

Up next:
Coping With Lupus and Emotions Amidst Fatigue

Coping With Lupus and Emotions Amidst Fatigue

Anna Scanlon shares her tips on dealing with lupus and emotions in the midst of the overwhelming fatigue the condition causes.
by Anna Scanlon on October 29, 2014