The last several months I haven’t been myself. Too tired, too depressed, too suicidal to do anything. My days were taken minute by minute in a battle to survive the damage that my brain and body have endured. I found pleasure in nothing. I lost my way. My spark was nearly gone. I heard my mom pleas to not give up or give in or quit and lose my life. I watched her tears and felt almost nothing except dead inside. I kept going and the only reasoning I can come up with is my undying will to win against my diseases and to not leave my mom.
After I was pulled off of my dosing schedule things continued to get worse. At the advice of my LLMD, I had a HIDA scan done on my gallbladder and was encouraged to see a surgeon about possibly removing my gallbladder. The gallbladder can hold a “pocket of infection” which makes treatment more difficult and/or near impossible. I wasn’t hopeful since this had been brought up last year at about the same time and the surgeon I saw then turned out to be a complete moron, claiming to be Lyme literate but not knowing its Lyme NOT LYMES. Still I jumped through the hoops. I saw a new surgeon who was some what Lyme literate and believed it needed to come out. After an ultrasound showing gallstones, there was no question it needed to come out and surgery was scheduled. Even with the possibility of this helping my emotional state still continued to tank. I was so depressed that I couldn’t even be hopeful surgery would help. I was proved wrong.
In the three weeks since surgery (2 weeks since my phone consult with my doctor who added new meds) I have seen major improvements. I’ve even begun to laugh again something I didn’t think I’d ever do. At my follow up appointment with the surgeon he said that my gallbladder was “severely infected” and had been for a very long time. Of course I was happy to have vindication but pissed off that maybe the last year of setbacks could have been avoided had I’d have seen an LLMD (surgeon) last year.
My treating LLMD made severe changes in my meds (especially my psych meds) and it seems to be helping. I’m adjusting to the meds and even though I’m sleeping a lot because of them, I’m finally starting to see a little light at end of the tunnel. That maybe, just maybe, I am a phoenix on the verge of rising from the ashes of who I was before treatment, what treatment has done to me and the pit I’ve been trapped inside.
I’m dosing now and its going better than it has in months (I’m only on day 3 of 14) but I’m choosing to cling to hope with all that I have. I was actually granted a little reprieve this morning and was able to go to the grocery store. It didn’t last long before the tremors and shaking started again but hey, I’ve got to start somewhere. My stamina is in the toilet. Once my brain is back on track, I can get the rest of myself there too. I’m hopeful that body will continue to cooperate with treatment and that remission is closer than I think. I’m trying to reach out and expand my support group and to feel apart of the world again.
One thing I can tell you for sure is that your support system is critical. Some will come and go and this will be one of the hardest things to deal with. I was raised to believe that family is the most import support group you can have but through the trials and tribulations of treatment I have learned that your friends can be better. I’m lucky enough to have 3 people I can rely on no matter what. I have others that do what they can and I understand and still appreciate everything they do. But I have learned with few exception that my family is NOT there for me. Even the ones who watched me suffer at my worst (physically – they haven’t been there for the mental worst) have abandoned me. The newest rumor in the family is that I’ve faked this entire thing (my diseases, treatment, being disabled.) That cut so deep I didn’t know whether to sit down and cry or explode in rage. I chose the first. Being so sick for so long and literally fighting for one’s life should bring people together, to teach us how precious life is and how much we take for granted but sadly I cannot say that applies to my family and I know I’m not alone in this. That is one of the major reasons I write and publish for the world to see, because I want someone who is struggling to know its not just them. Families, friends, people in general aren’t what they used to be. When your first diagnosed (if you’re lucky enough to have people believe you and haven’t had who knows how many misdiagnoses) people will rally behind you but then the chronic part sets in and people don’t know how to deal with that. You’ll change because you have no choice but to change, you have a life altering illness. People will get back to their lives and slowly but surely you will feel forgotten or alone. Most of us spend so much time alone anyway because we can’t participate they way we used to, we’ve changed.
Despite all that the last months have put me through, the fact that I’m still not in remission or close to where I want to be, I hold true to the fact that deep inside getting sick was one of the best things to happen to me. I needed the change. I think its made me a better person. I’m not the people pleaser I used to be (I’ll always have some degree of it though) but its taught me that I need to take care of me or I can’t help anyone else. Its changed my perspective on too many things to list. I believe God is keeping me here for a reason and that one day, I don’t know when, all of this will have prepared me for exactly where/what I need to be. We all have our crosses to bear in life, this just happens to be mine. So I’m working on being a phoenix rising.
Thank you for sharing your story…I can relate to everything you have written, it’s almost if I have read it from my own memories. I have chronic lyme too, have for 8 yrs and it has changed my life in so many ways. I can really relate to the mental anguish you talked about with your family and their lack of support. I have the same problem, unfortunately, I think a lot of lymies do. Please stay strong, you will wake up one day and not feel sick and it will be the weirdest feeling for you, being sick so long. It will get better and don’t be afraid to change lyme drs if you’re not making progress, I’ve changed 3 times and each better than the last. I heard someone say that God only gives his hardest missions to his toughest soldiers…..or something to that effect…and I really believe that to be true 😊
So glad to have heard your story at the Lyme group tonight (my first time). Hope you continue to improve after the surgery!