Only because it is now called Systemic Exertion Intolerance Disease (SEID).
That's right, this really, truly is a disease- not just something in Luke's head, not just make believe, as some few may think...
I am glad that this is getting some attention from many who may one day find answers for those who live day to day not knowing if they will be able to function, to have a "normal" day or a day filled with mental and physical exhaustion.
The new definition for SEID, for use in adults and children, focuses on the disease's core symptoms:
- Profound fatigue lasting at least six months;
- Total exhaustion after even minor physical or mental exertion that patients sometimes describe as a "crash" and is known medically as post-exertional malaise;
- Unrefreshing sleep;
- Cognitive impairment (aka "brain fog") or a worsening of symptoms upon standing.
The essence of this disease is that if patients engage in exertion—cognitive, emotional, physical, whatever—that their symptoms are made much worse and often for a prolonged period of time
For our part, I still firmly believe, even with the many set backs, that Luke is improving. This week marked the anniversary of Luke's return to full time employment. True, he is now officially out of sick days and vacation days (also this week), but I know he has been abundantly blessed to get this far!
This time last year, we were both so uncertain if he could even keep his job for more than a couple of months- but we had faith in the Lord. Luke had (and continues to have) a strong desire to do his part for the kingdom of the Lord and a strong desire to provide for our family.
I am very grateful that the Lord hears our prayers and helps us to keep moving forward together!
