I push myself everyday often beyond my better judgment. Lupus and Sjogrens are not diseases that I can beat into submission nor is the depression that comes along with the chronic widespread pain.
Yes, I want to do more, but why can’t you see I can only do so much and some days a lot less?
You need to know something else. When you don’t make the time to visit me? it breaks my spirit in ways I cannot adequately describe. I may be broken, but I still have value. I am worth the trouble it would take to make the trip to my house. I know you love me.
I wish you knew how much I need you to recognize this won’t go away by ignoring it and by default me.
deal with chronic pain – though I’m certain far less significant than yours – and I understand the accompanying depression. It’s miserable to be miserable all of the time.
Have you communicated with your loved ones how important it is to have regular visits from them? I mean, really communicated? Hints rarely work, especially if thar be menfolk involved. I know it can be hard to speak up that you need help, that you need support, especially when you’re depressed and feeling low, but it’s the area where it’s really important that you push yourself, so that other areas can be made easier.
This rings so true, I actually started to cry. I have psoriatic arthritis – a lovely cousin to your lupus. I’m 25 and have been in pain for nearly 10 years. No one believed me. No one helped me. They just kept pushing me onward… until my husband came along. He has ankylosing spondylitis. No one believed him. Everyone still pushes him. I wish I knew how to make it easier for everyone. My world is all about figuring out how to make life easier for those with invisible illness and pain.
<3LaurenElyse
I try to explain to people that everything I do I have considered very carefully how to accomplish the task with the least effort and best outcome.
I am going to be 47 in 3 months exactly and the symptoms started when i was 30 the Dr’s told me for yrs I had some form of chronic fatigue but my tests came back negative. Finally when I was a few months shy of 42 I was diagnosed, it was another two yrs before I could afford to see a rheumatologist.
I explain in minute detail to my family and friends the disease process how it affects me what it could potentially do to me and they say things like “yeah I hurt too” or “we all are going through it”. They are blinded to the significance of this disease and maybe it’s a coping mechanism for them, so they don’t have to face the reality that I (the one who could always do everything and more) am really ill not just tired.
My mother has brain damage but this last year she has finally understood. My sister just wants me well enough to care for mom. My best friends understand, sort of, they adjust schedules etc but r5arely visit unless I just about beg. I have a lover that understands completely, but he lives in OR and i live in CA so it’s hard but when we are together he is attentive, helpful and loving.
I hope that you can find those supportive people. I cling to my husband for support because he seems to be the only one to “get” it. Hopefully you can find that in someone you can see regularly too. Best of luck!
<3LaurenElyse