I’ve had Lyme disease & 4 Co infections since I was 12 and now I’m a 28 year old married mum of a 9 month old. I had treatment for four years that’s made a huge difference, I now only have 2 active co infections and lyme which is a huge difference. During my hardest years and treatment i’d given up on my dreams of living any type of quality of life, much less being able to be a mother and wife, however, I am struggling to manage how I feel about spending the rest of my life with this disease. Every single thing i do is such a task and I am finding it hard not to get caught up in the negative so i’m here to ask what you tell yourself or do to life your spirits?
hmmm well Hannah I can’t “tell” myself much to feel better about living with this disease likely indefinitely.
The good news though is that I can pray…and look forward to one day on earth and Heaven when God has removed EVERYONES physical infirmities. In the meantime it’s tough, at times near impossible wanting to give up because of how exhausted you are, how much pain you feel. I also have found many years comfort in becoming friends with elderly spiritual women, some elderly men. Surrogate Grandparents if you will. The reason for this is that these friends also share limitations and therefore are both more my speed; AS WELL AS WAAY MORE COMPASSIONATE AND UNDERSTANDING.
To be honest Hannah I think about giving up regularly. Some years almost daily. Yet then I reach out to my Savior and my old timers and praise the Lord for a bit. Eventually I have a good year or months again. Times that I can play basketball with my son or take him on hikes. … It can be exceedingly difficult to draw my thoughts towards these positive moments in time with those special people. Yet if you can it can make al the difference.
Ps when that’s not working you can always use the "I just have to make it through the next 10 minutes or ten seconds. " Perhaps repeatedly some days or even in a row…BUT THEN YOU DO!! and gradually you stop having to tell yourself for a while; and consequently enjoy the irradiating smile that beholds your little ones face.
Hi Hannah and welcome to the community! It’s really hard to wrap our minds around dealing with chronic illness, especially starting from such a young age. When I was in my twenties I thought I would be permanently disabled, and had to make some huge changes in where my life was heading. I’m not going to tell you that it all gets better, I don’t have a crystal ball. What I will tell you is that you have a young child, and that you will be the best mom that you can be. That this age is so much fun, and it really does get even more fun, even while you’re crying from lack of sleep and frustration.
I’m glad that you found us here. Reaching out for support is really important, and while it doesn’t change your condition, it can make big differences in how you manage it. Keep coming to see us here Hannah.
I don’t think of Lyme as a permanent or indefinite experience. I have faith that with the right treatments and attitude, I will be able to live my life with the quality I desire. I would recommend reading the book, “Heal” or watching it’s complementary documentary (also called Heal) on Netflix and also reading “You Are the Placebo” by Dr Joe Dispenza.
Hi Hannah! You will have good days and bad days. Always let the good days tide you over the bad days. And each and every day, you are closer to healing and the good days will far outnumber the bad days.
I have had Lyme since 1990, and was just formally diagnosed in 2017. I am now 63, and enjoying life more than I ever thought possible.
Believe me, when you are healing, every good day is wonderful but look on the bad days as one day closer to full healing.
My thoughts, prayers and well wishes are with you.
Tess