I've found that the hardest challenge of doing things despite the pain, is convincing other people that "yes, I really want to do that."
I spend much of my time home and indoors to avoid the ever-present Alaskan sun. When the opportunity comes to do something, unless I'm immobilized by my pain, I take it. In many ways I'm still learning my limits but I'm not going to know them unless I test them.
Oh and 24hr supermarkets are AWESOME for avoiding the sun lol I do most my grocery shopping between 11PM and 1AM.
Other than that, I carry my emergency pillbox with some ibuprofen and percocets everywhere I go. I haven't redeveloped the confidence to go anywhere alone yet, so I usually have someone with me. So when I say, "Okay. I need to go home now" they understand that means now and not in about an hour.
I think one of the trickier issues I'm having is getting my hubby to understand the differences between standard operating pain, non-operational pain and operational pain. He wants me to be pain free but that hasn't happened in years.
I don't want to sit and wait until I get better because they may or may not happen. I want to make the most of whatever time I have.
Hi there Shu, I totally agree with you. I have someone help me go shopping, and they are a carer who has become a friend as well. The lady who helps me knows when i have had enough and cant do anything else. I have so many complex health issues that i dont like to be on my own in case i have a fall or a seizure, although there are times when i do have to go somewhere on my own. I dont think anyone can really understand fully how we feel about things, especially any sort of pain. My husband is really good with regards to the pain and does try and help, even though there isnt alot someone can do to help when someone is in pain. I have to spend alot of time resting. And there have been times where i have been invited to somewhere like a celebration or a wedding and i have had to cancel which i hate doing. Some people though just dont understand. .I get comments like well you were alright yesterday. People just dont understand how changeable Lupus is, and how we could be feeling not too bad when we see someone for about half an hour, it can change in the next hour. I think people find that really hard to understand, because it doesnt make sense to some. And i have had people say stupid things like you are either ill or you arent. Its amazing how many ignorant comments get thrown at people who are living with a chronic illness.
It is good to test your limits, also though its good to learn how to pace yourself. I used to think i will just go that little bit further and then found i had overdone it and ended up having to stay in bed for a few days afterwards. So what suits one person doesnt always suit another. And with Lupus we do have to be careful not to over do things. Its good to have ideals though and have a good positive mental attitude as that really helps. Its great to hear you are so positive about coping with your health problems. Anyway nice chatting to you, take care, hang in there, bye for now, love and hugs Astrid40xoxo
Indeed! Pacing is tricky sometimes. And it's always tough disappointing friends/family (even when they DO understand).
I never really discuss the extent of my pain with my grandma because it terrifies her. My mom passed away a couple years ago and she's afraid of outliving me too.
Most of my friends are understanding. I think my hubby got the biggest wake up call when we went on a trip to New Orleans. After doing a walking cemetery tour I started feeling dizzy/fading as we walked back to our hotel. Now I try to write up a "care and feeding of Shu" list when I travel so my companions know what to do when I'm "crashing" since I don't always communicate well if I'm feeling overwhelmed.
For me: Standard operating pain is my normal pain level. Which for me ranges between 3-5/10 on those little hospital pain charts. I generally don't feel impaired by my pain and can get involved in things without the pain being on my mind. I might have my cane or might not. I can get many things done in a day.
Operational pain (usually 5-6) means the pain is on my mind but not foremost. I can get involved in limited activities but absolutely need a mobility aid (usually cane, sometimes a wheelchair if there is a lot of walking).
Non-operational pain (usually 7+) means the pain is constantly on my mind and I'm not good for doing much at all. Usually can't even focus on watching a movie. I try to sleep it off (but if it's *real* bad I go to the hospital).
Breaking it down into these three categories makes it easier for me to communicate my needs to people I don't interact with on a regular basis. It's hard sometimes explaining that "Yes, I'm in pain but No, I don't want pain meds right now. This is normal for me."
-Shu
Unshoreandscared said:
Please explain what are the differences between operating pain, non-operational pain and operational pain. Very interesting.
I like that guide for pain, I will probably adapt it for my use. Thankfully, I have not needed to go to the hospital for Lupus or any thing yet. But, I will use it.
hi ann, i realize this is the wrong thread but i just watched the video you posted on vit d and thought it was very good,,,i am motivated now to make sure i am getting the right stuff
I love your guidelines for pain! My husband/family has a difficult time understanding that as well. It is very difficult for me to pace myself. I know its so important and I'm getting better at it, but its something quite difficult to get used to! I try to push through the pain and pay dearly for it later...
I love your guidelines for pain! My husband/family has a difficult time understanding that as well. It is very difficult for me to pace myself. I know its so important and I'm getting better at it, but its something quite difficult to get used to! I try to push through the pain and pay dearly for it later...
I’ve found it difficult to not push myself as well. Especially always trying to make everyone happy. Just the other day my mom asked me to help her pack because shes moving. And I said no problem. And at first everthing was fine. Then I started hurting and getting grumpy. And my wasn’t expecting it. I still pushed through it. Shes finally trying to understand what I’m going through. But shes not quite there. And of.course I apologized. And everything was good. But I just want to keep pushing myself. Which the next day was hell! I basically slept all day! Lol
I'm still trying to get the hang of pacing myself too. I know even when I'm pushing that I'm going to pay but then I think I'll probably be out anyway, might as well go with it now. I know that's not the right attitude and I'm trying to adjust it. My family just takes me at my word - yes, no, up and going, resting, sleeping......I appreciate that but also feel like the party pooper most of the time.
Shu, your comment, "I've found that the hardest challenge of doing things despite the pain, is convincing other people that "yes, I really want to do that."" brings up a good point. My because my husband is so exhausted all the time, it is difficult for him to show even the slightest enthusiasm about an activity (even if it is just laying and reading together) even if he really does enjoy it. For me it is hard to remember that the lack of enthusiasm does not necessarily mean a lack of interest. I hope that you have understanding people around you too who are at least trying to understand how you are feeling.
can you repost the link? I don't know how to find the original post.
Ann A. said:
Hi Janice,
Did you watch the short animated video or one of the lectures?
janice said:
hi ann, i realize this is the wrong thread but i just watched the video you posted on vit d and thought it was very good,,,i am motivated now to make sure i am getting the right stuff
Welcome to Alaska. You'll get used to the long summer days. It's the long winters that really do me in.
I live in a much smaller town in Alaska and our grocery store is not open 24 hours a day. I'm lucky, I have two kids, 14 and 16 yrs old, and even though it's hard for them to see me in pain, they are really starting to understand that when I say that I need to go home, they don't ask for 10 more minutes, they know I need to get home right away. They also make sure I never have to carry the groceries, etc. And even if there is something we've planned for awhile, if I wake up with a Lupus fever, or my fingers so red and swollen that I can't bend them, etc, or my pain levels at an 8/9, they are understanding when I say "Sorry guys, not today." My pain is usually a 6/7. I really can't remember the last time it was below a 6. I do hate when I have to disappoint them, or when they are out having fun and I have to stay in and miss out. I cherish my time with them. Luckily they like to spend time with me, whether we are just watching tv together, or playing a board game, or if i'm having a good day we can go shopping, or to lunch or for a walk. Sometimes just sitting in the bleachers watching a volleyball game is too much. I almost missed my son's 8th grade graduation in May. It was all I could do to get dressed that day and get to the school on time. But I made it, and then went straight home to bed. Learning to pace myself has been difficult. i used to be very active. When I lived in Hawaii I used to get up at 4:30am every morning to go surfing. (That was many years ago.) But I used to play volleyball, surf, jog, play basketball, race motor bikes and snow machines. Now I leave those things to my kids and hope I feel up to being there to watch.