3. Horrible Health Advice
While I am struggling to get through a flare, the last thing I want to hear is how I should be taking a supplement someone has tried that boosts the immune system.
The only way this is more irritating is when I know for a fact we have had this conversation before, and I have already explained that people with lupus must calm their immune system, not boost it. I think this pushes my buttons because it reminds me that this person has no clue what lupus is and the battle I face.
4. An Over-Packed Schedule
If I am pushed to the limits with a schedule of things to do on a day when lupus has the better of me, I stand a 50/50 chance of getting very moody with a strong possibility of tears before crawling into bed that night.
Not only are endless activities or demands exhausting and more than I can bear during a flare, but the fact that I am expected to keep up with a crazy schedule makes me feel invisible. It is like nobody remembers I might be struggling to keep going.
If it is family that expects this of me, it hurts all the more. I look out for them, so why wouldn’t they look out for me and my health?
This happens a lot around the holidays and frankly, I can count on being aggravated every Christmas by a daily demand to be somewhere and be actively social. Lupus and social do not always mix, and my ideal schedule reflects that fact.
5. A New Pain or Sudden Flare
I cannot even begin to describe the frustration when I am trudging through the week and suddenly am stricken with a whole new set of symptoms and pain. I can be fine one day and wake up with pleurisy (swelling in my lungs) and incredible pain caused simply by breathing.
I can wake with my feet and hands painfully swollen or horrible sores in my nose. Each day has some level of pain, so when some new one joins the party it is enough to make me feel very overwhelmed and angry.
I suffer from the “why me?” or “what did I do to cause this one?” attitude during these times. It shakes my inner strength to the core when it feels like each day is nothing but an opportunity for me to endure even more pain.
A lot of the time, I did nothing to aggravate my symptoms and have no logical reason for the attack. It simply is a daily possibility that my battle might increase and when it does I feel angry and caught up in the inner turmoil of how unfair it all is.
I think one of the hardest parts about having lupus is the emotional toll it takes to face each day and to endure the pain and threats to your survival, while the people around you seem to be blissfully unaware of the war you are fighting.
My greatest source of comfort can be found in the few who do understand and support me through my daily fight with this disease, and the realization that these emotions are natural and to be expected given the battle I am in. I may still get aggravated, but there is peace in realizing that it is normal to feel this way.