Hi Patter, Thankyou for your post, i used to use a scooter to get around with when things were really bad, sadly i've lost my key for it at the moment, so my husband is replacing the on/off key switch, which he is capable of doing, as he is fortunately an electronics engineer. Its disgusting that people should judge you and call you lazy, and to say you have it made, they are on another planet arent they? Im sure you would love to swap with them any day with the ones who have normal days and healthy lives with nice jobs to go to. I love the way you reacted to them, i would of loved to have seen their faces, hehe.Good for you for telling it to them straight, it amazes me how people thing we lounge around for the fun of it, and we are just lazy. And it doesnt matter how many times you tell this sort of person what the truth of things is, it just falls on deaf ears. They have already made up their minds about what is up with us, according to them its nothing and we are living the high life, but i would swap my so-called "high-life", for their normality any day. I think these type of person is really ignorant, and i think they are quite sad, that they live in their insulated lives, with no real knowledge of the world and whats going on around them. We have to feel sorry for them and pray they will see the light and start to be better people for once. I think the way you have been dealing with these sort of people is excellent, as you arent being rude. But it certainly makes them have a think about things. No point trying to defend yourself, as they think we are doing it because we have something to hide. If they lived a day in our life just the once, they would soon change their attitude, but thats not going to happen, so we have to try and not get upset by their ignorance. Anyway well done, take care, look after yourself, love and hugs Astrid40xoxo
My flare ended leaving my face feeling looser, nerves are calmer. Dropping items quite frequently, unable to grasp items appropriately. I am seeing my doctor tomorrow after work, and will bring up this symptom. The dropping items is new developed over the last month. Otherwise, I am thankful the flare is over.
My flare ended leaving my face feeling looser, nerves are calmer. Dropping items quite frequently, unable to grasp items appropriately. I am seeing my doctor tomorrow after work, and will bring up this symptom. The dropping items is new developed over the last month. Otherwise, I am thankful the flare is over.
Glad to hear that you are through it. We will say some prayers that your appointment is a good one and that the remaining flare symptoms clear up quickly. Gentle hugs coming your way!
Hi Unshoreandscared, i am pleased you are going to see your doctor again tomorrow, i really hope you can get some help with things. I too drop things through not having feeling in my hands and wrists, they have put it down to the MS symptoms that Lupus has. It might be that, or it could be something else with yourself, so its worth getting checked out. I will keep you in my thoughts, and pray everything goes well for you at the doctors, take care, look after yourself, love and hugs Astrid40xoxox
Thank you so much @ astrid and @ Janice plus everyone else. This flare snuck up on me and made me realize that I am ill and need to take care of myself...That part was sad, but the positive portion, I attribute to this group supporting me and sharing stories and well wishes of courage with me. Thank you again.
astrid40 said:
Hi Unshoreandscared, i am pleased you are going to see your doctor again tomorrow, i really hope you can get some help with things. I too drop things through not having feeling in my hands and wrists, they have put it down to the MS symptoms that Lupus has. It might be that, or it could be something else with yourself, so its worth getting checked out. I will keep you in my thoughts, and pray everything goes well for you at the doctors, take care, look after yourself, love and hugs Astrid40xoxox
Hi Unshoreandscared, you are welcome, any time. I have an idea how you are feeling as i am going through a bad flare at the moment. I had pneumonia after christmas, and it hasnt take it out of me, and set everything else off, but then i do have quite a few things that are associated with the Lupus, so i cant expect it to be easy. It is how you deal with although sometimes i do feel like screaming with it all. Its inevitable that its going to get us down now and then, we wouldnt be human if it didnt eh? I have had alot of appointments already this week, and yesterday i slept for four hours solid which is the most i have ever slept in one go. I used to sleep nearly all night when i didnt have the Lupus which was just over 10 years ago. Since the Lupus, having what is known as proper sleep is just not possible, and from what i have heard on here, everyone feels the same about it. So we have to try and make ourselves as comfortable as possible to get the best outcome. I needed a print out from my doctors of all the things i have had in the past 5 years, for a form i had to fill in, anyway i am not kidding there was about at least 50 serious things on there, i just dont think about them all or otherwise i think i would crack up with the worry of it, and not knowing if something else is going to happen, its not worth thinking about and stressing out about. My philosphy now is to deal with health things when they happen, as you cant stop them from happening, and rest when you have to. I know some people dont get this option, and sometimes neither do i, but one of the main things with Lupus is to try and pace ourselves. I know if i feel as though i think i am having a good day, which is very rare, there is a tendency to think you are able to do more than we actually can, which has some awful consequences wiping us out for a few days, which is pointless, as we need abit of energy every day, so i try to recognise this now. I have had a really bad night again, last night. Its now 5.30am, and i am still awake and in pain, which has been really difficult. I have been trying to read a book, but because of the pain the concentration has been quite bad, so i have have to go back over pages to get where i am now with it. But at least i was laying down still resting in a way, which all helps as far as i know. Anyway take care, and anytime you want to have a chat feel free, we are nearly always here, and its good to talk about things, a problem shared as they say. So take care, look after yourself, love and hugs Astrid40xoxoxo
Hi Unshoreandscared, you are welcome, any time. I have an idea how you are feeling as i am going through a bad flare at the moment. I had pneumonia after christmas, and it hasnt take it out of me, and set everything else off, but then i do have quite a few things that are associated with the Lupus, so i cant expect it to be easy. It is how you deal with although sometimes i do feel like screaming with it all. Its inevitable that its going to get us down now and then, we wouldnt be human if it didnt eh? I have had alot of appointments already this week, and yesterday i slept for four hours solid which is the most i have ever slept in one go. I used to sleep nearly all night when i
didnt have the Lupus which was just over 10 years ago. Since the Lupus, having what is known as proper sleep is just not possible, and from what i have heard on here, everyone feels the same about it. So we have to try and make
ourselves as comfortable as possible to get the best outcome. I needed a print out from my doctors of all the things i
have had in the past 5 years, for a form i had to fill in, anyway i am not kidding there was about at least 50 serious
things on there, i just dont think about them all or otherwise i think i would crack up with the worry of it, and not knowing
if something else is going to happen, its not worth thinking about and stressing out about. My philosphy now is to deal
with health things when they happen, as you cant stop them from happening, and rest when you have to. I know some
people dont get this option, and sometimes neither do i, but one of the main things with Lupus is to try and pace
ourselves. I know if i feel as though i think i am having a good day, which is very rare, there is a tendency to think you
are able to do more than we actually can, which has some awful consequences wiping us out for a few days, which is
pointless, as we need abit of energy every day, so i try to recognise this now. I have had a really bad night again, last
night. Its now 5.30am, and i am still awake and in pain, which has been really difficult. I have been trying to read a book, but because of the pain the concentration has been quite bad, so i have have to go back over pages to get where i am
now with it. But at least i was laying down still resting in a way, which all helps as far as i know. Anyway take care, and
anytime you want to have a chat feel free, we are nearly always here, and its good to talk about things, a problem shared
as they say. So take care, look after yourself, love and hugs Astrid40xoxoxo
Astrid, when my rheumatologist realized that I thought waking up in pain 5 or 6 times during the night was normal, she prescribed trazadone to induce normal sleep patterns. This drug has not made me groggy but when I sleep it is a good
sleep with out interruptions. It leaves me so that if the phone rings I can wake up. It is not a knock out drug. After two days on this, the difference was amazing!
Hi Patter, thankyou for your reply. I too wake up every hour, its so frustrating. My doctor didnt really know what the answer was to it, so he said to me to take one extra tramadol in the night if i need to. What your doctor has done sounds a good idea, and its good it doesnt make you feel groggy, as some of the drugs do make people feel awful. One of the ones like that is Amitryptilene. I dont take it but i did have it once, and i woke up feeling worse than when i nodded off, as i had a really dry mouth and it was like i was hung over. Thankyou for sharing this with me, i might write that one down and have a look at it to see if it might help me or not. Anyway take care, look after yourself, bye for now, love and hugs Astrid40xoxox
Oh My Goodness, I am glad I am not married, I have Bengay on all major joints (knee and hands) the weather here is horrible (rainy, cloudy and cold) my joints are hurting.... LOL, gotta find something to laugh about.
Hi Unshoreandscared. Why are you glad you are not married? Sorry have i lost the thread of things here, hehe. You do have alot to cope with, but you never know you might find someone really caring who doesnt care about what you have wrong and who might be there to support you, you never know, it can happen. You are right there are so many difficult things happening, we do have to find things to laugh about. I have mentioned this book a few times for those of you who like to read, there is this comical book by Carla Ulbrich, where she has written about when people have a chronic illness to deal with and what ignorant people often say to you, the stupid remarks they can come out with, its called "How Can You Not Laugh At A Time Like This. In the book Carla lists the top ten stupid things that people often say to us when we are ill, and things that are annoying too. It will make you think, i know that one, and its a good laugh to read as well. So take care, bye for now, love and hugs Astrid40xoxox
I have the same problem. I drop things all the time. It is frustrating, but I just go on.
Patter said:
Unshoreandscared said:
My flare ended leaving my face feeling looser, nerves are calmer. Dropping items quite frequently, unable to grasp items appropriately. I am seeing my doctor tomorrow after work, and will bring up this symptom. The dropping items is new developed over the last month. Otherwise, I am thankful the flare is over.
Glad to hear that you are through it. We will say some prayers that your appointment is a good one and that the remaining flare symptoms clear up quickly. Gentle hugs coming your way!
Hi Ann A., Thankyou so much for this link, it so true what you have said. These people who use up our energu in a way so that we have to explain every tiny little thing to them, are really exasperating and exhausting to have around us, therefore as we have already worn ourselves out explaining everything, we then dont have the energy to do what we have to in the first place. The people that annoy me as well are the ones who dont come to you when they ask to borrow something or ask a favour but expect you to come to them. One week i had to go and get some shopping bits, and a neighbour asked me to get her something, so i said okay i would if it wasnt enormous or heavy, she said it wasnt, so i said fair enough. Anyway i had it at home waiting for her, she only lives not two minutes away, but no she wanted me to take it round for her, does she want me to eat it as well, honestly. Its amazing these people dont have a clue, after going shopping anyway i was wacked out, the last thing i need is another trip to deliver someone else's shopping when i have been good enough to get it for them anyway, saving them bus fare and a trip into town. The people who are like this just dont realise how much things take out of us. They say they do, yet they behave differently, i am sure sometimes its just pure selfishness of what they want, and we will be okay surely is there attitude. Another friend who came round once before, and we had been out for an hour, which at the moment is enough for me. It was about 7pm, and i got my pj's on, and she said to me "my goodness you are getting ready for bed?". Thankfully my husband was there and explained it to her, but its frustrating that these people just dont realise how hard it is to do some things. When i get back in sometimes i do put my nightwear on, as its alot lighter and more comfortable for me to be in. I can no longer where anything slightly more heavier, say jeans as it means its more effort for me, it must sound so pathetic, but thats just how it is for me. I prefer really lightweight clothes as its so much easier for me to move more. Its not that the other stuff is tight or anything like that, but any extra feels as though its weighing me down and uncomfortable. So thankyou for the write up, about the spoons, i will try and print it off at some point, but i have added it to my favourites, hope you arent too bad today, take care, love and hugs Astrid40xoxox
Hey Astrid, I have found the phrase “I’ll let you do that” invaluable when people ask me to do things that I am not physically able to do or don’t have the energy to do. The person that wants you to deliver her shopping is looking for people to do things for her. I don’t know if they have a control issue or are looking for the easiest way for them, but they are out there and will drain even a healthy person of their energy.
Hi Patter, thankyou for this, i do think you are right there with the person i was talking about. I sometimes think she thinks i dont feel like doing that today, i will see who else i can get to do it for me, doesnt matter how they are feeling. The main thing to them is they get what they want, either that or they just dont think. I am going to have to say no in future, as today i had to go out, and i was really poorly whilst i was out, so i am glad that no-one asked me for anything today, they probably wouldnt of believed it if i had come back with nothing. Its that ignorance is bliss where they are concerned sadly. Thankyou i will remember this, thankyou for your help. Take care, look after yourself, love and hugs Astrid40xoxo