Over the last couple years I have shared how my journey with endometriosis began, the multiple surgeries, and how the pain from endo has caused me to redefine my womanhood.
My day-to-day struggles are documented in posts throughout the last several years so while I was laying in bed yesterday, I pondered how to share how endometriosis has impacted my life on a physical level that I haven’t already shared.
I think one side of endometriosis (as well as many chronic illnesses) is how it impacts your energy levels and so often leaves you with almost a chronic exhaustion. This is not a type of exhaustion where a nap will be the perfect pick-me-up and leaving you feeling much more refreshed. It is not a type of exhaustion where heading to bed an hour or so before normal or sleeping in a bit late will put you back on schedule.
This type of exhaustion is a relentless fatigue that hits you straight to your bones. A type of exhaustion where your muscles feel like you’ve just run a marathon. A type of exhaustion where no amount of time spent in bed can cure.
This side effect of endometriosis can often be the hardest one to explain as often this type of exhaustion can hit at any moment without notice. It is also tough to explain how being in bed does not necessarily equal relaxing nor does sleep mean true rest.
With this side effect an endo warrior must not only learn to plan ahead but also learn how to let go of plans without guilt. I have learned over the years what type of activities will require a day or so to recuperate. For example, if my family takes a trip to the beach which is roughly a 4 hour drive, I know not to plan a lot of activity the first day so I can try to recuperate without causing a major flare. At our trip to Disney, we knew to plan our days accordingly. Learning to plan is just as important as learning how to un-plan as often flares and fatigue can hit without notice or trigger and it is important to learn how to say no in those instance AND not feel guilty in the process (with much emphasis on the last part of that statement).
If you have endometriosis, or another chronic illness, what has been on the the biggest physical changes that have taken place in your life because of illness?
So true girl. The exhaustion is unlike any other type of tired I have ever felt. I always say when it gets real bad, that I feel like I need to sleep for a week straight. Hugs friend
It is so interesting how endo can manifest itself differently in each woman. While I’ve had horrific pain, I don’t think I’ve experienced the exhaustion.
Endo itself has always left me fatigued but I think my endo coupled with my fibro has made it much worse and I’ve noticed that the more fatigued I get, the higher the pain levels! Endo is tricky in how it can vary from woman to woman. Some treatments work great for some but are horrific for others. You can be stage 4 but have little pain or be stage 1 and be bedridden.
I have been extremely fatigued lately. I didn’t realize endo could be the cause. One minute I will have adequate energy (not a ton), and the next I will have none. Today I was fine, then I wasn’t, then I was again. It is like being on a roller coaster!
Its completely crazy, isn’t it? I swear some days its as if someone pulled the plug and I had absolutely no energy ever. Its definitely a frustrating aspect of any chronic illness and I’m not sure that much can be done to help it.
Can I just say finally FINALLY I know why all this pain and extreme tiredness would hit me. I thought it was normal for the longest time and I was being a whimp not being able to take it and I thought I was lazy when I walk in the mall and get hit with this heavy achey sleepiness. I will know %100 when I get lapraoscopy. I have alot of cysts too I got blood work done there’s a chance it might be cancerous but very unlikely in my age so I kinda hope it’s just endo 🙂
It can feel SO good to get answers (even if its in the form of a diagnosis) when you struggle for so long without any idea of what is wrong! Wishing you the best results with the blood work and the surgery! Do you have it scheduled yet?
Yes I do he wanted to do it alot sooner because of the blood work coming back he was concerned but I’m getting married in april going on a road trip too and he doesn’t want me to not recover in time. So it’s in the middle of April hopefully my husband will be around. I am going in for another ultrasound begining of march he wants to see for himself I guess.
I’m thinking this is possibly a new journey for me. :/ I have not been diagnosed but things are changing for me physically and so far everything is pointing to this disease. The doctor just wants to put me on birth control but I’m still researching. You and I have much in common. Pastors wife, adoptive mom, Disney and possibly this yucky disease. Thank you for sharing. Blessings, Shannon