How do you make sense of multiple diagnoses?
I am so grateful for the wealth of healthcare expertise that’s available. But must be honest, it’s overwhelming. Not just diagnoses, but treatment options, self care, and relationships (when they understand even less than you do!), let alone work, parenting etc. How do you all do it? My brain is just tired and can’t think anymore. Welcome your thoughts!
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Yes, multiple diagnoses are difficult to process and handle. I feel like my life is non-stop medical appointments, taking antibiotics, and going to walmart to pick up prescriptions. Furthermore, I've spent so much time at the Mayo Clinic that I'm starting to recognize employees. It is hard to keep going.
I will do my best not to go to a GP because it always ends in an admission with a new diagnosis. It's draining. I am exhausted from being sick, the pain and mostly, the medication.
@juliess First, welcome to Mayo Clinic Connect! I, for one, am nodding my head up and down like a little bobble-head doll, reading your words! And there are no doubt many more agreeing with you.
Things that have worked for me?
-Write everything down. Even if it makes no sense at the time. Then go back and look which condition it might be about. Keep notes together.
-Keep medications up-to-date. I don't try to rely on my memory anymore, afraid I will miss something.
-I keep a small calendar in my purse to write things down, but also have a larger planner at home to transfer things into. [I'm a paper and pen person, not a techy person!]
-Diet is a challenge for me, so being aware of what will be best any given day may change. And that's okay.
-Likewise, some days are just a non-starter. No energy or enthusiasm. There will be days like that.
-A biggie is "be gentle on yourself". Don't try to do more than you can. There will be another day we can accomplish things.
I deal with end stage renal disease, an active blood cancer [and it's treatments] plus a few other concerns.
I hope this gives you some ideas? Tell me what you are trying to make sense of in terms of multiple health issues, and how you handle them?
@miloandlisa @juliess @spokie Time management seems to take over your life when you have an autoimmune disease. @gingerw knows all about it! You might want to check out this discussion on the Spoon Theory and see how other members try to manage their time.
Does this seem to fit you?
Wow, can I relate to these posts. Express my sentiments to a tee. Just been diagnosed with possible bone infection in my spine and surgeon suggesting taking hardware out of lumbar spine, which has been in since 2007. I have never heard of this. This follows on the heels of 3rd heart attack, 3xcabg, and heart failure. There are times I don’t know if I can deal with any more. Pain is the worst. Break it down, day by day. Try to read, art work, or knitting keep me going.
@becsbuddy Thanks for leading me to the spoon theory. I love that! I have multiple illnesses with two different incurable cancers, a rare neuropathy, and many other issues including challenging sides effects to meds. But the cancer drugs have really taken away my energy and endurance so the spoon theory fits perfectly. Yes, even getting ready for the day or meals chip away at your daily allotment of energy. I was always productive 16 hours a day so it was hard for me to accept slowing down and not borrow tomorrow's spoons so that tomorrow I needed to rest the entire day. One appointment or running a couple errands is enough to wipe out my energy for the day. Hard for people to understand when you look/act pretty normal to them. I created an Excel calendar/task list that has every day listed for the next year. It has a gray header for each date. I color code appointments, errands, phone calls/computer tasks, physical tasks, etc. I have a priority column. It helps me remember everything and makes it very easy to reassign another non-urgent task to another day without forgetting about it. Just enter the new date and sort. It took me awhile to perfect the format so everything would sort properly. Works great!
@californiazebra Wow, you’ve really got the whole thing figured out. And now you have a name for it. Is there anyway you could attach a small copy of your spread sheet so other members can see. (You should be able to attach it below). I’m anxious to read it! Great job!
Thank you, thank you!
I'll have to see if I can create something generic as my entries can contain a lot of detail I wouldn't want to post. I'll work on that this week and see if I can post a snapshot to give an idea.
@californiazebra Please don’t get too hung up on making the “spread sheet.” Just headings for your columns or just a quick example of a day.
Your help is so appreciated! Thank you
@becsbuddy I created a sample Excel task list to give you an idea. You do need basic Excel skills for this system to work. I sort in this order: date, sort, priority, type, task. It's important to use the ! in the sort column on each gray filled date header so the date header always stays at the top when you sort. You can then sort by ! alone and use autofill to add a year of dates quickly. These are just some made up tasks for this example. I track everything here. I have all dates listed for a year. Past that, I add single lines for a colonoscopy due in 2 years, the date a CD is maturing in 3 years, a warranty expiring in 5 years, etc. I can also add a lot of detail to the task entry, but don't wrap the text. You just want to view the extra detail up in the formula bar as needed so every line is narrow. I don't normally prioritize for the day until the night before or morning of, but prioritized each day's tasks just to demonstrate. For the daily tasks like take meds, I just change the date to tomorrow once I've completed the task and re-sort. The daily check-in task is because I live alone, so I exchange a morning text each day with a friend who lives alone just to know the other is okay. I have all birthdays on my task list so I don't forget. After I reach out to that person, I just change the date on that entry to next year and it's ready to go. I often don't get through tasks with no set deadline due to fatigue so I just reassign them to another day. I love this system. No more writing out endless task lists each day. It works really well for me. I hope it might be helpful to others who know Excel. I also have tabs to document conversations with doctors after each visit so I don't forget the details later. I hope the photo can be viewed larger than what I'm seeing right now. First time I've added a file.