Life can sometimes be overbearing. Too much to handle. Too busy. My life has been just that lately. I apologize to my readers for not having kept my blog up to date.
I have been in a bit of slump lately. I am frustrated with having to take handfuls of pills three times a day. My daily doings are planned around meds and food. I guess today will be a rant of sorts for me.
So many of us suffering with Lyme Disease put a lot time and energy into May. We worked very hard at bringing awareness to not only what it is like to live daily with Lyme Disease but also the prejudices that come with it.
June I was exhausted. We also were busy rearranging our home to accommodate our daughter, son-in-law and their 4 children. Our home is filled to the brim now! We have a very large home and actually it was a bit too big for just hubby and I.
The house is filled with laughter and the normal hustle and bustle that comes with kids. The ages are 20 months, 5 years, 10 years and 12 years. Plus don't forget we have the two dogs Kona 8 and Mandie who on June 22 made a year! We are all still adjusting to living together. Yet I think it is going rather well.
Many of us while on antibiotic treatment have to stay out of the sun. I don't think the drug companies realize or care what that does to ones life. How much living is done out in the sun? Let me tell you A Lot!! If you don't think it is a big deal pretend you can't go in the sun for a day...you really have to plan around it.
We have a swimming pool. I love to swim. Something about being in the water. You feel light, your muscles don't seem to ache the pain just seems to melt away temporarily. I love when you swim underwater and the suns rays shine down through to the bottom. The water looks like beams of glitter!
Since I have been on antibiotic treatment my pool is an object of desire. I sat outside last week and watched my grandchildren swimming and sloshing around, playing to no end. It was at that very moment I was emotionally fully hit. I so wanted to go in and join them. Yet I could not. Our pool is in full sun majority of the day. It was at that moment I found myself pondering my quality of life.
Sadly it has diminished greatly since 2004 when my Lyme Disease journey began. I found myself thinking about the severe fatigue issues I deal with nearly daily. I make our bed and I am exhausted. I fix my lunch exhaustion hits again. I walk a dog, or ride my stationary bike for 10 minutes cook dinner, or eat dinner, or fold clothes I am exhausted.
My Lyme Literate MD (LLMD) has brought up the subject of having a "port" surgically put in my chest. It's for IV therapy. I have resisted. I don't want to really deal at all with that part of this disease. To be honest I don't want to deal with any of it any more. I want out. I want out of being so ill. I want out of missing out fully living life! I want out of being a trooper!
It is difficult because lately I see how Lyme Disease has effected those I love and care deeply about. Lyme Disease is an expensive illness to have. You have to pay a lot out of pocket expenses. Medications, Supplements and doctor visits. Yes we have insurance; however, you submit to them only after the appointment has been paid. Majority of LLMD's don't accept insurance.
My mother and I talk nearly daily. Her frustration and helplessness with this disease often comes through loud and clear. And then there is my spouse. For any caregivers out there reading this you know how hard it is to constantly see one you love hurting, exhausted and well just not themselves. Friends have commented too about how I don't laugh and smile much any more. The disease is taking its toll, no doubt about that.
I have found myself contemplating stopping treatment. Yet I have to admit I am doing better than what I was a year ago. I realize I have a long road to full healing ahead of me. I also realize I am fighting depression. I feel sorry for me. I have had to leave a career that I so enjoyed. I identified so much of who I was with my job. I have had to fight for Social Security benefits. I know many are denied before being accepted. Yet I find it sad that I have to fight so hard for something I really need. Then I feel guilty. Guilty that when I get a good day I so feel I can work again. Only to have reality slam into me a day or so later. I find myself internally having to admit "Oh yeah, this is why I don't work" I have gone from being a vivacious outgoing woman to quite and withdrawn.
I guess it is a good thing I am aware of all of this. It's a good thing I talk every other week with a psychologist. She is my sanity saver for sure! She lets me know I am not nuts, just physically ill.
I also very much so hang onto my faith. If it weren't for my faith in Jesus and the power of his love that upholds me...well folks I just don't feel I could continue on this adventure.
I know this is just a slump. I know I will move beyond this period of woe....I anxiously await for the fork in my road to show up...for the path to change and lead to something else. Something brighter. I know we have to find the positives in our life. I also realize these feelings won't last forever.
I just wish that little tiny tick and never found its way into my neck 6 years ago.
ON A WING & A PRAYER - this week sparky's first 2 doses of IVIG arrived. as is all things pertaining to lyme (& lyme treatment), this was not a straightforward process. in fac...
9 hours ago