What would you do if one day you wake up and you feel so sore that you can barely walk?
I blamed it on overdoing it, because I usually did.
I was a regular mom, the stay at home mom, that is always on the go from the time the sun comes up until way past the sun goes down. I have three boys, three very busy boys that feed off each other’s energy. To keep them busy, I would sign them up for as many activities as we could afford. I would pick them up from school, take them to their activities, come home, study, shower, and have dinner.
Academics was a top priority for me, and I would always expect them to be the best at one core subject, which meant I always spent extra hours helping them and giving them extra work. I was also very hard on myself, in terms of keeping myself fit and cooking healthy meals from scratch. I wasn’t trying to be a perfect mother because of any social pressure. I just had the perfect idea of a perfect household, and I really strived for that perfection, especially because I wasn’t working. My life made me happy.
I’m telling you this because when I say my life turned upside down, it meant that everything that was important to me and that made me who I am, was taken from me in a matter of weeks.
So, I woke up that day feeling miserable and blamed it on a recent overseas trip and overdoing it at the gym. I had just turned 40, and I was accustomed to occasional aches. Then a week passed, and I continued to feel not only sore, but also extremely tired. I started to feel new pains, like joint pain in my knees, wrists and fingers, and my chest and throat would start hurting when I tried to talk too much. My fatigue was like a permanent jet lag. I couldn’t even sit and watch TV, that was already too exhausting. Keeping my eyes open, was exhausting.
One month into feeling sick, my joint pain started to go away, but I started to feel new symptoms; soreness in my muscles again but this time, with deep bone pain. I could barely walk from fatigue and pain. It felt like my legs were made of iron and I couldn’t drag them very far. I had shooting pains in my arms and burning pain in my back. I literally had to look over my shoulder, because I felt as if there was a hot iron on my back. My spine was in so much pain that I felt as if somebody was stepping on my head trying to crush me, and I was forcing myself to stand up. I also felt stiff from almost every joint in my body.
In the bathroom or kitchen where I would need to open stuff, I was a mess. The tops of containers would fly off from my fingers being stiff, and therefore I could not coordinate well. I would knock them down and then it was a struggle cleaning it up. At some point, with it being too hard on me to clean up, I would just see things on the floor and step over them. For every twenty minutes of being active, I needed to lie down for about an hour to recover.
In the meantime, I was visiting doctors and trying different pain medications, but none of them took all the pain away. Then the worst started. I felt like I lost my brain. I could not add simple math. I could not help my boys. I could not feed them. I forgot names of people. I could not think! Not surprisingly, anxiety set in, and I thought I was going crazy. Up until then, I had remained very optimistic. I had gone already to countless doctors and had done all kinds of blood tests. All my tests and scans kept on coming back clear. I know some friends/family might have thought I was depressed or maybe exaggerating, and I even questioned myself constantly. It just didn’t make sense the way the pain and fatigue had started. It had been all of a sudden and at a very happy time in my life.
Finally, one test came back semi-positive, Lyme disease.
Of course, I was relieved! I felt so happy to finally have an answer. Whatever it was, I had an answer. And knowing myself, I would fight it. The very moment I got the results, I became my very own Google doctor. I started to read everything about Lyme; from doctor’s opinions, to blogs, to joining Facebook groups. I became obsessed. My processing skills were very slow and at times nonexistent, but sadly I realized, it wasn’t going to be easy at all. I was in for the long run. My doctor here in Dubai repeated the test, because she thought it might be a false positive, which happens regularly.
This second time, it was positive according to the CDC guidelines. My doctor here was still not very convinced, because it didn’t fit the timeframe of when I first felt sick. The result showed it was a recent infection versus an old infection, and to her, it could again be a false positive.
It becomes quite technical here, and for someone that has never gone through IGM vs IGG blood results, it’s very confusing. In my research, as my own Google doctor, I also realized that with Lyme, many people suffer because they are not quickly diagnosed or are said to have false positives. I don’t necessarily believe that researching on the Internet is good, it can be overwhelming and cause unneeded stress, and much of it is not even based on facts, but it was my way of getting on with my life.
Thankfully, my brother in law is a doctor in the US, and he put me in contact with an infectious disease doctor there. I sent her my files, and I am so thankful to her that she took the time to go through them and listen to my story. She agreed that I needed an antibiotic treatment, and my doctor here agreed to administer it. By now it was already March, almost six months after I had started to suffer, and was completely bedridden, but I was excited to start the treatment. I had six weeks of oral antibiotics first and then, one month of daily IV antibiotics. Once I started the treatment, it took about two weeks for me to feel a noticeable difference.
Every day that I got better, I pushed myself to become stronger, mentally and physically. I was trying to eat as healthy as possible and have enough vitamins that I could handle without irritating my stomach too much. Some days I would feel stronger, but there were still many days that I could barely manage to stand up. For people that saw me, I looked fine; but inside, I could barely stand up, and I would run to the car and lie down and cry.
I would cry to myself, because I felt guilty.
My biggest ambition in life was to be a great mother. Being a mother and a good wife is what defined me as a person. I never belittled myself for only wanting that. I knew I would do other things later in life. Imagine, the only thing I ever dreamed of being, and I couldn’t fulfill it. It was devastating to me. My boys would come home from school, and I would just be lying in bed the same way they had left me. Thankfully, I had an amazing nanny that helped me through this period. She helped me in everything regarding the house and the children, and especially in reminding me to keep fighting. When my family was home, I would get up from bed every hour and walk around and pretend that I could sit and talk to them, but in reality, this cost me every ounce of my strength. If I could I would have just curled up and let time pass.
I still can’t believe how much time passed, and how the boys managed. They were doing all their homework themselves, and they had no extracurricular activities. I know they were having a hard time dealing with it, and each of them dealt with it differently. My youngest was the most affected, and at some point, he started thinking he was sick as well and missed many school days. Thankfully, I never felt like giving up for many reasons: my boys, my husband, my family, my nanny, my friends and the fact that I’m not the only one in this world that was suffering. Believe it or not, the latter was my biggest reason why I never asked why this happening to me. I thought that would just be the most selfish thing I could do. How could I ask that, while many people in this world are suffering in some way or another?
After the antibiotic treatment, I felt much better. It wasn’t my old life, but I was thankful that I could physically stand up and do outings with my children. I still felt tired and would get some aches on and off, but I felt happy. I knew I was on the road to recovery. And then, I was wrong. I again started to feel sick. I started having more bad days than good days, and then the good days started coming less and less. I could go out with my family, but I had to take it very slow. I could not, for example, handle the boys and their questions for too long. I would get extremely tired and would have to take short breaks and even lie down on benches. If one day I overdid it, I would need at least two days in bed for me to recover. I started to think that maybe it wasn’t Lyme and I was suffering from an autoimmune disease that had been triggered by Lyme or something else. I lost all my muscle.
I would sit in bed; and for the first time, I started to feel depressed. I didn’t feel like seeing friends. I started to hate the things I used to like. I started to question how I had raised my boys and all about me. I guess it was expected that I would feel this way. I was tested for autoimmune diseases, and I was put on different medications. Some would make me feel crazy, some would drop my blood sugar so low that I could not function, some would make me feel great and then horrible. Some doctors would agree that I was having some sort of autoimmune flares. One doctor said it was a mystery virus that would go away. Two years later, a miracle began. For the first time in two years, I’m having a record of good days. I know something is different. I can feel it. I feel in many ways like my old self, with some limitations. Before every time I felt “good”, I felt good enough to be out of bed. Now, I feel good enough to get through the days, without taking too many rests.
I am so grateful for all my family and friends that not only stood by me, but also supported me. I am so grateful for even the small gestures of people that I didn’t even consider them my friends, but that tried to help me. Like the librarian at my boys’ school, that genuinely looked concern every time I saw her and tried to help me by giving me telephone numbers of other people with medical situations. To the counselors at school that were there to talk and to give the boys reassurance. To friends, that showed me love by calling and giving me advice. To my mom and sister that I felt so bad for them that they are so far away from me and felt that they could not do enough. To my husbands’ family, they were so overly concerned, because they love me. To my lovely husband that many times sat by my side and kept me entertained while I received my IV treatment. He was incredible. He never treated me like a sick person, and sometimes I would resent it. He would say that if I treat you like that, you will not feel strong enough to fight. He was right!
I am ready to take my second chance in life. I’m not living in fear that I might fall back down. If I do, I know I will recover even if it takes time. I question if it was Lyme, if it is an autoimmune illness, fibromyalgia, or a mystery virus. The doctor said it would go away, nobody knows when or why, but it will go away.
It’s been my one-year anniversary of feeling better. I am in no way the same person I was. I learned to live my life in a slower pace. I still struggle with guilt as I rather spend my energy on things that make me happy rather than having the perfect household, and sometimes I am judged by this. I have an active Instagram page that I regularly post in, and I look as if I am 100% healthy. Occasionally, I will have family members sneer at me as to why I spend so much time on it, instead of helping the boys with school work. I can’t answer that question, but I think it became a creative and happy outlet for me. I’m in no way faking any pictures, but I don’t want my health to define me completely. For those of you that sadly can relate in any way, I hope you find that time heals you emotionally. You will get to understand your capabilities and will come to understand why this happened to you. I am definitely a better human being for it, and I now stop and appreciate the little things.
Submitted by: Liliana