Life after symptoms but before diagnosis.

[CHT]

So I have been having some health issues. Some snuck up on me, and some I excused as being a result of my december injury, but it has gotten to the point where I don’t always know how I will get through the day, and I am having to stop riding my big moving grey mare, and cutting back on riding and other activities in general. Fortunately I just sold some horses, which lightens my load, and costs.

Doctors appointment showed that I am in good health for the most part, but my ANA test was positive. Being referred to a rheumatologist and a speach therapist…but could be months before i get in. I have a lot of the symptoms consistent with Lupus.

DH works out of town, so it is mostly just me looking after the farm and clients. DH is having trouble comprehending my situation, and keeps trying to tell me to eat better or get a massage and that will fix things (I eat fine, and my blood tests confirmed that…I just sometimes forget a meal).

Meanwhile I am wondering if I can keep up the business end of things. Already thinking I should cut back on training. Also worry that this means a steady decline in my riding ability, and wonder if this is the best it is going to get for me…should I be shopping for an easy on my body horse that can do the level I want to achieve to get it done before it is too late?

What do I tell my customers? Should I let them know something is possible wrong? They are a VERY supportive bunch, but sometimes things like this can make people uncomfortable. And what do I tell them, as it is not like I know what is wrong yet!

I dislike this not knowing; I dislike that I keep thinking i can push through this, but how do you push through numbness and exhaustion?

And yes, I would like some cheese with my whine.

[Calvincrowe]

Since no one else has chimed in, I will. I am not sure what an ANA test is, but to answer your question:

You don’t push through, you take baby steps. You get some help with chores. You cut back. You ask for help. If your clients are a good group, then they’ll step up and step in as needed (or asked).

I found that after my injury, I got depressed, which made my symptoms worse. I had no energy, and felt that I didn’t want to do anything. My spouse didn’t understand, either, but supported me by at least helping me as much as he could.

Counseling might help. Remember–you will be better, maybe not the same, but you won’t always be this low. And, oddly, massage really did help me several times;)

[draftdriver]

You can’t push through it all. I pushed myself 'way too hard after a natural disaster here 13 years ago, and I worked myself to exhaustion for weeks on end trying to get the cleanup done. I’m reasonably sure it precipitated my Polymyalgia Rheumatica, from which I have not yet recovered. And I’ve still got piles of disaster debris piled up on my lawns, etc. :sigh: Just do the most important things, and rest when you can.

[PalominoMorgan]

Well, if it is lupus pushing through will not work. Your body will not have it. It will make an executive decision to shut down the whole system on you. Autoimmune issues are funny like that. You can’t really out will power them.

As for what to tell your clients… that is a tough one. You know them best. If they are as supportive as you say maybe you want to be honest about what you do know about your current limitations. You are having some health issues and you are working with your physicians to find the cause. Some days you just don’t have the same energy you used to so you have cut back in some areas and might need to cut back in some more areas in the future. For now, you don’t know what you are up against, but you do know that some days you just can’t go like you used to. You might be surprised at folks that step in and offer to help. If not, you have clearly spelled out what the limitations of your time and services will be for the immediate future.

My best friend has had lupus since she was 13. She’s now 38. Some times she can go like hell and work 80 hours a week and still be the single mom taking care of 3 kids. Some times she is bed ridden because her body has had enough of her trying to be super woman. It’s all about learning when you can afford to push your luck and when the gig is up. In general though, you will always have to pay the piper eventually so be careful about trying to push through anything more than a short term project.

For what it’s worth my point of reference is 3 years living with fibromyalgia. It also seems I have probably been living my whole life with Ehlers Danlos and been unaware of it. (Looking back though I now realize I have been living with chronic pain since 9th grade.) I also just had an MRI that clearly shows a Chiari 1 malformation that my neurologist refuses to acknowledge despite my having all of the advanced symptoms of one. This is the result of me “pushing though” for the last 3 years as doctor after doctor did not put the pieces of the puzzle together. My point is that this road to figuring out what is going on can be a long and trying one, but you are the expert on your body and how you are feeling so trust yourself. Good luck.