I made a decision recently to open my own Youcaring fund. It wasn’t easy and for some reason it feels embarrassing and like a defeat. But I came to the decision after a restless night of little sleep as I lay bombarded with worries and bills floating around in my head.
This last year has certainly had its ups and downs and I know the long-term Lymies can relate. You hit the good times that can last days, weeks or maybe even months and you try and tackle more in your life; dust off your ambitions, work more (in my case try and supplement my job trying to do some temp work), exercise, socialize and get a taste of normalcy, which you always think will last. It’s not symptom-free, but better. Then inevitably something makes you crash again and the fatigue gets worse, the living in a fog, the pain, the systemic reactivity, “…..” Fill in the blank with whatever other symptoms.
So often at work I will inevitably at some point say I’m tired. My one coworker commented the last time “you’re always tired”. Well, that’s true. Tired it seems is as much a part of who I am as my hair color. The only change is in degree.
Where was I going with this? Oh yes, needing some help. This year my job description got changed to part-time, prompted by my request in January when I was having heart troubles and some other things going on causing me to just not be able to keep working full time. This has been a huge blessing and has given me some much needed balance and rest. What seems to be hardest on my body is long hours and not enough sleep. This is more taxing than almost anything. But, as much as this has been a blessing I do have bills and financial responsibilities to say nothing of all the special diet needs and the fact that our family of four Lymies medical expenses has passed the 300,000 mark. The financial stress has been almost as bad as the disease itself and I have found that my personal financial situation has deteriorated to the point that it is causing me sleepless nights and a lot of tearful prayer.
What has been hard is the guilt I feel; on my worst days when my physical condition magnifies my mental state into an unhealthy place, I truly feel that it would be better if I were dead and not be the black hole that I am; draining money, joy and basically just being a waste of space. I HATE how lazy I feel most of the time. But, that said I am aware that I do desire to do more; to work harder, to contribute… And I really hope that time is soon. I hope soon, soon, soon the good days will just keep continuing. I won’t go deep into my medical treatment right now because that would be a long post in itself. But I am on a new treatment regimen.
Where was I going with this? Oh yes, needing help. 😜 so here I am, in a tough spot, still in treatment, better than a year ago but not there yet. So I am with a humble heart opening a fund to help with survival, believing that one day I will be able to live my dream and pay it forward and start a grant organization to help Lymies with their treatment. Until then, I will humbly ask.
Jennifer’s Lyme Fund
My buddy today 🙂