Prayers are needed today for this Lupus girl. It is unreal how just going to the fair and walking around can cause this much pain. Aaron and the girls walked slow and let me rest when I needed to but apparently my Lupus is trying to show me who the boss is. My rheumy says that this is all normal when you push yourself. I didnt feel like I was pushing myself. So he says to rest all week and upped my pain meds to help. He thinks having a scooter or wheelchair for those kinds of events would be beneficial. That way I could walk some and ride some. Not anything that this girl wanted to hear this morning.
Sandy,
You are brave for going to the fair to begin with. I've avoided all these things, because I know I couldn't handle it. I haven't been shopping at the mall in over a year, and my teenagers love the mall : ( Having a scooter or a wheel chair so you can still go out with your family is so much better than avoiding going. This will also help your disability claim. Hang in there!
Love, Trisha
Thanks Trisha, Glad I have friends that let me know I am not alone in this journey. I knew I would pay the price for going to the fair. But I took a ton of breaks and even let them just go do things and ride rides while I sit in the shade. We went early so the crowd was not bad at all. Now days I do not handle crowds due to the noise and such. It basically is nerve racking trying to deal with all this and how it changes our lives.
I do think it was well worth going to have some family time and of course the fair food. Glad you got to go and do that for your nieces. I do believe that we all have to get out of the house so we do not go crazy.
Sandy, I think this is normal and unfortunately you have your young family and I think that makes it harder then it is on those of us whose families are grown. I have had to use a wheelchair for about 2 or 3 years now in airports and that was very hard for me the first couple of times. I fought not to cry. Then I looked at the bright side....no more standing in long lines, first boarding, etc. I also use the scooters in big stores like Walmart, etc. I have no choice and I am tired of having my husband do it all. Now we do in together or I do light shopping by myself. It has helped me to get out more too. Good luck!
I have the same issue. I can't go shopping, church or anything else that requires lots of standing or walking with out my wheel chair. And depending on how I am doing I have to use a wheel chair for appointments. It was really hard to adjust to it at first but having a wheel chair has allowed me to still do things and hang out with my friends. I do my best to walk as much as I can when I can, but it has been nice to have the wheel chair to lean on. My friends are great and are always willing to help me, and push me around so I can still hang out with everyone. Hope all goes well for you!! :)
Hi Sandy,
I thought you did well mate and at least you tried your best, even though we really are limited where Lupus is concerned and your right it is the BOSS.
I do hope you rested while getting about at the fair as to much pressure can really make we ache and getting a Scooter even though your young is still a good idea.
Love Terri xxx
I now have a walker and an o2 machine to carry around, on top o the fatigue and pain from the lupus. I try not to go to big places because I know it will cause pain. Have someelse to go with you that can help you handle things. I certaintly can no longer get on rides- way too much pain! It can be hard at first, I no longer can drive a car due to my meds. I was upset at first but I had to think about the safety of my son. On days that I'm so sick i have to send him to another state( he live on the border) for him to be looked after by my grandmother and mother. I feel you pain, hopefully ya'll have some strengh.
Lovely comment fan and i really do feel for you besides concerning your son :)
fan said:
I now have a walker and an o2 machine to carry around, on top o the fatigue and pain from the lupus. I try not to go to big places because I know it will cause pain. Have someelse to go with you that can help you handle things. I certaintly can no longer get on rides- way too much pain! It can be hard at first, I no longer can drive a car due to my meds. I was upset at first but I had to think about the safety of my son. On days that I'm so sick i have to send him to another state( he live on the border) for him to be looked after by my grandmother and mother. I feel you pain, hopefully ya'll have some strengh.
Sandy,
Good for you for trying, but you must listen to your body. Same thing happened to me on our vaca to San Diego. Spent an entire day sleeping in our hotel. Good side of that is that my husband had time on my hands and went shopping...for me! Yeah! Was good going the rest of the trip even drove some of the way home.
Rest as much as possible so that you can regain your strength.
Hope you had some fun.
hugs,
DeAnne
I have really bad issues with this as well. I begged the doctor not to put me on prednisone because I have gained weight and now when I can’t walk far without.my hip grinding and my.knee feeling like its going to explode.
Yes, rest is the best thing for helping you get through it. I tried mowing mygrass like a dumby and was in bed for a week just from doing that little bit. You really do have to pace yourself and also realize how bad the sun can also affect these situations.
What pain meds are you taking? I just got to a new doctor, urologist, rheumatologist, surgeon and now finally a pain clinic. I refuse to have anymore injections after a doctor put cortisone in my tailbone why I was completely awake. That was excruciatingly painful. I really hope they can help but feel so blessed to finally be getting treatment again.
I really hope you feel better. Oh and try and get some compression socks or stalkings for events. When my legs are is a lot of pain, it helps bring so much relief. Good luck and stay blessed.
I cant even do my grocery shopping at Walmart and Krogers without my legs just killing me
Sandy, unfortunately I learned last year that if I wanted to participate in these types of activities I had to do it in a wheelchair. I am in my 40's but have a 10 year old son. Last year we went to DC, I had a chair delivered at the hotel for me to use during our visit. I enjoyed my vacation and didn't end the day wiped out. I have to do the same for theme parks etc....
I resisted at first but a trip to lego land without a wheelchair convinced me otherwise. I've learned to listen to my body and my doc... blessed...
My legs and lower back hurt after a Walmart trip or Grocery trip also. I even get headaches from the lights in the store. So I wear my sunglasses and sometimes a ball cap to the store. I try to make the trips very short also. I am hoping for some relief so I can sleep tonight. Love ya all and thanks for all the advice !!!
Walking, standing or sitting for long periods is out of the question for me. I carry a bottle of naproxen and ibuprofen just in case life does not cooperate. I took my daughter school clothes shopping Saturday, sadly I had to tell her I can do it no more. We also cancelled our vacation to Colorado too, Just can't make the drive or hikes :(
Sandy, hang in there. My doc just mentioned getting a scooter to use for those kind of occasions. It would be better than missing out or isolating. Try one in a store, it does help. I don't use them as often as I should,but when I do I can do so much more. You are a good mommie and you will make the best choices for you and your family. :)
Hi Sandy73, I too can relate. I try pacing myself and have been going out alone lately which frightens me. I have been grocery shopping at Walmart and pushed a cart to lean on. I have felt so exhausted, overwhelmed by the crowd and noise, nauseated and leg, hip, knee and back pain. I have to ask someone to load my groceries if I have more then four small bags. Then I wait for someone to unload them from my car when I get home. I would not even think of going to a fair or amusement park. I understand your desire because of having young children at home. I have tried going to the mall with my grown daughters just for the bonding time and nervier make it to all the stores they want to visit. I sit very often until I am so weak that I have to leave. I like the idea of a scooter but I am just too vain I guess to use one at 45 and trying to date Lol. I have used the ones at Walmart when getting a few things.
Hey I know what you mean. I just went to Disney World with my family in June for my birthday. We had to take breaks for me because I got tired fast. I realized the best thing for me was to go back and take some naps in between. I will say this that I felt it when I returned back home. Every one of my joints ached. I'm just now getting over the flare. Anyhow I do agree that a scooter or a wheelchair is a great idea.
Thanks so much for everyone sharing and letting me hear your stories, nice to know that we are all in this together.
Sandy your right there mate we are in it together....bless you :)
sandy73 said:
Thanks so much for everyone sharing and letting me hear your stories, nice to know that we are all in this together.