Yesterday one of my friends complained about feeling sick and tired. Stupidly, I commented that I have been feeling sick and tired for most of my life. Her response was that if that was true, I should be used to it. ”You have so much experience.” I shut kept my mouth shut. I don't have the energy for unnecessary competition and battles.
She clearly does not understand that experience with a chronic illness usually means degeneration and deteriorating health. I have been living with the challenges of lupus for more than 45 years. I have not become “used to it.” There is always something new to which I must adapt. And aging has definitely decreased my adaptive flexibility.
Right now my major challenges are musculoskeletal pain, brain fog, exhaustion, and now - may I have adrum roll please – these cussword cataracts. I know that cataracts are very common among people my age. When I wrote about the cataracts on my Facebook page a large number of the people that I went to high school with (Class of 64) wrote back about their cataracts and how pleased they were with the ease and effectiveness of the treatment. I am scheduled to get them taken care of in May. I know that people with lupus have a higher rate of cataracts, partially as a result of the steroid medications that we must take to survive. I am trying to be happy that I do not have the glaucoma that is feared by everyone forced to take Plaquenil.
But knowing all of that doesn’t change how much my head hurts. Reading and writing are my major distractions and doing them hurts. I am still trying to get my taxes done because the combination of brain fog and poor eyesight makes copying the tiny print from 1099s into a little box on a computer screen challenging; especially when the brain fog won’t let me remember where I put all of the forms. It doesn’t change the fact that I can’t really read what I am typing here, so I am doing it “on a wing and a prayer, “ knowing that Life With Lupus is the one place where people are not going to think I am stupid because my typing and my syntax are not perfect. It doesn’t change the fact that I cannot see the speedometer when I am driving the car. I think that is dangerous and it scares me and being scared uses up a great deal of energy.
So no, after more than 45 years I have not gotten used to it. I long ago reached the reverse U curve in my learning experience. Tonight, I am going to bed early. My eyes are too tired to even watch television. I am going to dream that when I wake up in the morning I will be refreshed and restored. Hasn’t happened yet. But I keep hoping.
I feel for you dearly because i'm 44 this year and was born with it and i've not got time for ignorant people which i'm sorry to say although it's your friend, the trouble with Lupus and nobody understands only those suffering it, is it's an hidden disease and to everyone else we look fine, unless your skins looking a disgrace or your mobility is totally up the wall but refering everything else you've mentioned which you go through i also suffer and it gets so annoying at times.
I've not got cataracts like yourself but my eyes have deteriated badly over the years and just having another stroke to the list as'nt helped me one bit....plus concentration really does me and having to keep editing if i'm really bad while typing.
So i know what your going through totally ((Hugs your way)) Tez
Hell no I havent gotten used to it. How can u get used to something that throws different things at u everyday?! One day u feel tired, the next u feel dizzy, yet another day u break out into a rash.... fuzzy vision... u know the deal. What I have gotten used to is expecting the unexpected and to really watch my body. your friend was really mean and I am sorry she said what she said.
Although i've never had the cataracts my mom had them in both eyes and they burnt the one out in the one eye and a full op on the other but she did have diabetes which did'nt help but i know this lupus i've got as come from both parent's as my mom's face was always red like my sister's who as Lupus and Rosacea and my moms carried the red V pigmentation mark down her neck which my sister carries and my dad had all the arthritis problems besides skin trouble...so a lovely mixture.
So get some good rest and i hope your able to sleep soundly. xx
Ann, i agree with how sunshie feels because years of seizures, paralsis, brain damge the list goes on and never knowing what caused it till 5yrs ago and with the symptoms we all suffer, i feel like sunshine everyday i wake wondering what next it gets me flustrated so much...and i could'nt cope a few month back i had one chronic flare which lasted 6wks, skin flare up, organ pains with stabbing to it, shooting pains from one place to another, muscle spasms and difficulty trying to walk i cryed that much it was terrible.
Ann A. said:
Thanks Sumshine,
You inspire me with your positive attitude. I keep praying for you. I also pray for the people in your life who have failed to offer you the kind of you need. I ask God to soften their hearts toward you. And I pray for your safety in the shelter where you are being meanly treated because people are ignorant about lupus. sunshinespraypaint said:
Hell no I havent gotten used to it. How can u get used to something that throws different things at u everyday?! One day u feel tired, the next u feel dizzy, yet another day u break out into a rash.... fuzzy vision... u know the deal. What I have gotten used to is expecting the unexpected and to really watch my body. your friend was really mean and I am sorry she said what she said.
Here's a button I like. I just shut up rather than fight anymore. no strength. No, unfortunately, you NEVER get used to pain and all the various symptoms. I have often thought how humans adapt to almost any change, but we never adapt to pain. I've had this for 35+ years, and when I stopped fighting wth myself about it, (denying it and overdoing until I was in the hospital), the illness's ups and downs levelled out, but your friend should learn that you never get used to it.
I wish I could make this print bigger for you, but I can't figure out how. At least I can make it bold for better contrast.
My comment has more to do with cataracts than getting used to it. I agree you never get used to it because things change.
I had rapidly developing cataracts a few years ago. I got "new eyes" three years ago and my quality of life improved immensely. By the time I had the first one done I was functionally blind in that eye and not much better in the other. I went to a meeting about two weeks before the first surgery. I was struggling with additions to the agenda because the agenda didn't make sense. The person next to me ( a good friend) leaned over and said you have the wrong agenda. That's the one from the last meeting. I laughed and asked for a current one. I wasn't driving for a couple of months before the surgery because I didn't trust myself to see things quick enough to react. My poor DH had to be my chauffeur. Computer screens were particularly difficult but at least I could make the print large and use bold type.
I came home after the first surgery and was really embarrassed because for the first time in a couple of years I cold see how dirty my house had become. Although I shouldn't have worried. Even with very good vision my DH hadn't noticed.
Good luck with the cataract surgery. It made my life very different and I only need reading glasses now.
I am pleased your operation worked out for you and your sights alot better now and i hope when Ann is sorteed she'll feel the same...nothing worse than having eye problems.
Marion said:
I wish I could make this print bigger for you, but I can't figure out how. At least I can make it bold for better contrast.
My comment has more to do with cataracts than getting used to it. I agree you never get used to it because things change.
I had rapidly developing cataracts a few years ago. I got "new eyes" three years ago and my quality of life improved immensely. By the time I had the first one done I was functionally blind in that eye and not much better in the other. I went to a meeting about two weeks before the first surgery. I was struggling with additions to the agenda because the agenda didn't make sense. The person next to me ( a good friend) leaned over and said you have the wrong agenda. That's the one from the last meeting. I laughed and asked for a current one. I wasn't driving for a couple of months before the surgery because I didn't trust myself to see things quick enough to react. My poor DH had to be my chauffeur. Computer screens were particularly difficult but at least I could make the print large and use bold type.
I came home after the first surgery and was really embarrassed because for the first time in a couple of years I cold see how dirty my house had become. Although I shouldn't have worried. Even with very good vision my DH hadn't noticed.
Good luck with the cataract surgery. It made my life very different and I only need reading glasses now.
I am going on 13 years with Lupus (diagnosed at 24). No, I am not used to feeling sick and tired everyday. I seem to wake up about once a month feeling pretty good--not much pain, minimal heartburn/lpr. That's about 12 good days a year. Yikes, never thought of it like that before! Sounds like your friend just needed to vent. We all need that sometimes.
I don't have any eye issues yet but I hope yours resolve quickly upon surgery.
The tiredness is a regular routine daily with Lupus and if your like me get sick and tied of it and of late sleeping alot after Tea time and it never seems to hardly give us a break....i do hope your abit better today yourself.
I am sure that you are right about my friend needing to vent. Unfortunately she caught me on a really bad day. And I am sure that my eye issues will resolve quickly upon surgery. I am gonna make myself a new button.
Since i was told 5yrs ago i can't seem to except it in one way because it's like you say one day to the next we never know what's occuring, it would'nt be so bad if we had a flare and it carried on till it eased but that's not the case, theres always added extra's each day ontop.
It affects all our looks in time and appearence, i had long hair now in the last month my hair's been skinned again on grade 1 to try and help my hair roots because it either comes out alot or i go into bald patches "I do miss my long hair"....that drives me mad not so much my looks.
My heart goes out to you and try and eat a little more as lupus alone can affect you and cause weight loss. xxx
draginfli said:
Ann - I've not gotten used to and I will never, ever get used to it! Like everyone else with Lupus, it is impossible to get used to it because something changes or gets worse every day! One day I'm dizzy, the next day the dizziness causes me to fall. One day I can't lift the phone to call my son and the same way the next and the next and the next until 2 weeks goes by - why doesn't he just call me? I know, because I'm a burden. The pain is horrible, pain pills or not, I can't think and I can't eat because I'm nauseous 24/7 - CRACKERS are my main diet and 7/up! When I look at a picture of me pre-flare and then I walk by a mirror I nearly scream because I don't recognize myself. I used to be beautiful - REALLY! These things are only tidbits - there is much more that I will not bore everyone with. No, I will not ever get used to it - I can hardly believe that this is really, truly my life! Tell your lovely friend how very, very sorry we all are for her soul.
Draginfli-sorry I don't have much time to write right now (helping kids with homework). For nausea maybe try eating something like some easy to digest bread with some plain yellow mustard. It has helped me with nausea/indigestion in the past and still does. Nausea is just so debilitating!!
Take care,
Kerri
draginfli said:
Ann - I've not gotten used to and I will never, ever get used to it! Like everyone else with Lupus, it is impossible to get used to it because something changes or gets worse every day! One day I'm dizzy, the next day the dizziness causes me to fall. One day I can't lift the phone to call my son and the same way the next and the next and the next until 2 weeks goes by - why doesn't he just call me? I know, because I'm a burden. The pain is horrible, pain pills or not, I can't think and I can't eat because I'm nauseous 24/7 - CRACKERS are my main diet and 7/up! When I look at a picture of me pre-flare and then I walk by a mirror I nearly scream because I don't recognize myself. I used to be beautiful - REALLY! These things are only tidbits - there is much more that I will not bore everyone with. No, I will not ever get used to it - I can hardly believe that this is really, truly my life! Tell your lovely friend how very, very sorry we all are for her soul.
Thank you Tez! The prednisone and extra strength tylenol have kicked in today, so feeling pretty good :)
Take care,
Kerri
Tez_20 said:
Hi Kerri,
The tiredness is a regular routine daily with Lupus and if your like me get sick and tied of it and of late sleeping alot after Tea time and it never seems to hardly give us a break....i do hope your abit better today yourself.
Glad to hear the meds helping and i hope you feel ok otherwise...i know it's a soft comment in one way but it's always nice to know that a member is'nt suffering so much.
Tez xxx
wadkunjaga said:
Thank you Tez! The prednisone and extra strength tylenol have kicked in today, so feeling pretty good :)
Take care,
Kerri
Tez_20 said:
Hi Kerri,
The tiredness is a regular routine daily with Lupus and if your like me get sick and tied of it and of late sleeping alot after Tea time and it never seems to hardly give us a break....i do hope your abit better today yourself.
Well i'm hoping the dapsone by monday i shall be taking and how the plaquenil affected you it affects other's, it made me nausic, panic attacks as soon as my hubby left me to pop somewhere i phoned him to get back in/hot sweats/severe breathing problems and more and like yourself took my dermo's advice kept in all winter with the Raynauds and if it goes abit sunny i burn up quick, i've been on the drug about a year& half and it helped at first but no more i back to where i was from the start.
It really put you in a bad way and nothing worse than keep breaking down and crying but it does make you lose weight and your intake of food gets less but nausea alone is so terrible besides the sickly feeling it gives off.
Well i hope you get your other meds ok Ann. xxx
Ann A. said:
I AM NOT SUGGESTING THAT ANYONE GO OFF THEIR MEDS - But I am no longer able to tolerate Plaquenil or any generic form of hydroxychloroquine. This year we experimented with me trying to take it for part of the year. The rheumy said that if I had enough in my bloodstream when the UVB rays became stronger over the spring and summer, I would not have to live like a complete vampire. So, I started with 200 and slowly worked my way up to the 400. Just about the time it reached a therapeutic level in my system I started to experience constant nausea. Along with that came a complete loss of appetite which resulted in me being weak and disoriented. I also became very depressed. I mean I was on the floor in the family room crying about stuff that happened 50 years ago. Within a week of stopping the med, my appetite and my mood were back to normal. So, I am back to living like a vampire. It is almost 7pm, so I can go to the pharmacy and get my other meds.
I'm really sorry to hear you've really been bad and i really know what a flare and symptoms do to us all, i either go quick tempered and make my hubby's life a misery or can't stop crying then my speech goes all over the place.
I've experienced what Ann had by her friend by people who i know, not because of the lupus but by other issues involved and they've had the whip of my tongue because to me i find it disgusting and those people who i've had it out with are not involved in my life now plus how Ann is nobody needs selfishness around them.
I've read your reply to kerri, actually the meds can put weight on and with me it's the opposite way around the doctor's are keeping an eye on me but i have trouble eating certain foods now as certain things trigger the pain more in me and you snapped because your down but at least your eating something, i thought myself you was thin and was hardly eating and your profile pic makes you look so slim.
I hope today is abit better for you ((Hugs to you)) xxx
draginfli said:
Thank you Tex!
I really just flipped out on this question! Please see my response to Wedjed.... It was just my day to freak out! I have been feeling really rough lately, really, really bad and I just can't believe that someone who is lucky enough to know Ann A. in person would be so horrible to her!
Thank you for being kind to me Tex!
Tez_20 said:
Hi draginfli,
Since i was told 5yrs ago i can't seem to except it in one way because it's like you say one day to the next we never know what's occuring, it would'nt be so bad if we had a flare and it carried on till it eased but that's not the case, theres always added extra's each day ontop.
It affects all our looks in time and appearence, i had long hair now in the last month my hair's been skinned again on grade 1 to try and help my hair roots because it either comes out alot or i go into bald patches "I do miss my long hair"....that drives me mad not so much my looks.
My heart goes out to you and try and eat a little more as lupus alone can affect you and cause weight loss. xxx
draginfli said:
Ann - I've not gotten used to and I will never, ever get used to it! Like everyone else with Lupus, it is impossible to get used to it because something changes or gets worse every day! One day I'm dizzy, the next day the dizziness causes me to fall. One day I can't lift the phone to call my son and the same way the next and the next and the next until 2 weeks goes by - why doesn't he just call me? I know, because I'm a burden. The pain is horrible, pain pills or not, I can't think and I can't eat because I'm nauseous 24/7 - CRACKERS are my main diet and 7/up! When I look at a picture of me pre-flare and then I walk by a mirror I nearly scream because I don't recognize myself. I used to be beautiful - REALLY! These things are only tidbits - there is much more that I will not bore everyone with. No, I will not ever get used to it - I can hardly believe that this is really, truly my life! Tell your lovely friend how very, very sorry we all are for her soul.
Thank you for excepting the friends request, it sounds like you've just added abit of weight but still slim looking, i'm 5ft 8" tall and weigh 9/half st, i'm just over the under weight mark i've gone as low as 58kg in the past but i've put it down to this my age, my body is rotting away and the meds are helping it .lol
I do understand what your going through and these flares actually put you on the edge and your minds a quick fuse and if anyone understands your personality, they'll know your not well on that day or while the flare lasts.
I just hope you pick up soon. xxx
draginfli said:
Thank you Tez!
Actually I am still slim. I probably needed to gain the weight anyway! :)
Thank you for understanding. I'm not usually a snappy person - it usually takes quite a bit to get me to that point. But with being sick, in pain etc.... I guess I'm on the cusp. Thanks for your friend request!
Tez_20 said:
Hello draginfli,
I'm really sorry to hear you've really been bad and i really know what a flare and symptoms do to us all, i either go quick tempered and make my hubby's life a misery or can't stop crying then my speech goes all over the place.
I've experienced what Ann had by her friend by people who i know, not because of the lupus but by other issues involved and they've had the whip of my tongue because to me i find it disgusting and those people who i've had it out with are not involved in my life now plus how Ann is nobody needs selfishness around them.
I've read your reply to kerri, actually the meds can put weight on and with me it's the opposite way around the doctor's are keeping an eye on me but i have trouble eating certain foods now as certain things trigger the pain more in me and you snapped because your down but at least your eating something, i thought myself you was thin and was hardly eating and your profile pic makes you look so slim.
I hope today is abit better for you ((Hugs to you)) xxx
draginfli said:
Thank you Tex!
I really just flipped out on this question! Please see my response to Wedjed.... It was just my day to freak out! I have been feeling really rough lately, really, really bad and I just can't believe that someone who is lucky enough to know Ann A. in person would be so horrible to her!
Thank you for being kind to me Tex!
Tez_20 said:
Hi draginfli,
Since i was told 5yrs ago i can't seem to except it in one way because it's like you say one day to the next we never know what's occuring, it would'nt be so bad if we had a flare and it carried on till it eased but that's not the case, theres always added extra's each day ontop.
It affects all our looks in time and appearence, i had long hair now in the last month my hair's been skinned again on grade 1 to try and help my hair roots because it either comes out alot or i go into bald patches "I do miss my long hair"....that drives me mad not so much my looks.
My heart goes out to you and try and eat a little more as lupus alone can affect you and cause weight loss. xxx
draginfli said:
Ann - I've not gotten used to and I will never, ever get used to it! Like everyone else with Lupus, it is impossible to get used to it because something changes or gets worse every day! One day I'm dizzy, the next day the dizziness causes me to fall. One day I can't lift the phone to call my son and the same way the next and the next and the next until 2 weeks goes by - why doesn't he just call me? I know, because I'm a burden. The pain is horrible, pain pills or not, I can't think and I can't eat because I'm nauseous 24/7 - CRACKERS are my main diet and 7/up! When I look at a picture of me pre-flare and then I walk by a mirror I nearly scream because I don't recognize myself. I used to be beautiful - REALLY! These things are only tidbits - there is much more that I will not bore everyone with. No, I will not ever get used to it - I can hardly believe that this is really, truly my life! Tell your lovely friend how very, very sorry we all are for her soul.
I actually believe if family or close friends know you as a person properly what your personality is like when your ok and if your off beat what it sends you like, then they should know automatically that your not well and even phoning your son, he should be able to tell with your voice how your feeling.
Well with my weight plus suffering with an underactive thyroid that loves doing it's hypo lark now and again my weight does drop, I'm a size 8 in jeans and a 12 in top and your right in one way swapping clothes should be done as it's all a buying issue with the meds.lol but like yourself wheather it be bottoms or tops extra size for comfort and having IBS anything tight around the waist does me in.
Your weight sounds great with how you've spoken plus your face is nice and slim in your avatar.
I've been up the hospital today to see the specialist about the stoke i had 2wks back and in a minute after taking my 3rd lot of meds will add to it what happened and the time here mate is 22:06pm and it's funny you on about friends over the internet i've met a few from the staffysite i'm with and also Genes reunited and it's been great.
Mind you i am pleased my hubby today as brought me a cap because i've skinned my head and also a large primmed hat and 2 lovely tops for when the weather warms up YES. lol.
((Hugs & kissses)) draginfli xxx
draginfli said:
Tez -
You are totally right! It makes me feel better that someone out there understands all of that! Thank you so much! :) I'm actually lifting the phone and calling my son - left a message, but that is better than nothing! I'm not going to cry when I'm on the phone with him either! :) I'm not going to tell him how bad I feel, I'll just say that everything is the same as it has been and then delve into his WAY more interesting world!
With the weight - according to the weight charts, like you I am not considered overweight at all - I just am heavier than I ever have been. We should all have some sort of clothing exchange for our weight changes. I have some beautiful designer clothing for the smaller sizes, but am lacking in the size I currently am! :) I also now prefer a size bigger almost than I am just for extra comfort. It's not like I actually go anywhere. LOL
Have a lovely rest of your day - or whatever time it is where you are! Thanks again for taking the time to pick me up some! Amazing what we can do for others over the internet! :)
Tez_20 said:
Hi Draginfli,
Thank you for excepting the friends request, it sounds like you've just added abit of weight but still slim looking, i'm 5ft 8" tall and weigh 9/half st, i'm just over the under weight mark i've gone as low as 58kg in the past but i've put it down to this my age, my body is rotting away and the meds are helping it .lol
I do understand what your going through and these flares actually put you on the edge and your minds a quick fuse and if anyone understands your personality, they'll know your not well on that day or while the flare lasts.
I just hope you pick up soon. xxx
draginfli said:
Thank you Tez!
Actually I am still slim. I probably needed to gain the weight anyway! :)
Thank you for understanding. I'm not usually a snappy person - it usually takes quite a bit to get me to that point. But with being sick, in pain etc.... I guess I'm on the cusp. Thanks for your friend request!
Tez_20 said:
Hello draginfli,
I'm really sorry to hear you've really been bad and i really know what a flare and symptoms do to us all, i either go quick tempered and make my hubby's life a misery or can't stop crying then my speech goes all over the place.
I've experienced what Ann had by her friend by people who i know, not because of the lupus but by other issues involved and they've had the whip of my tongue because to me i find it disgusting and those people who i've had it out with are not involved in my life now plus how Ann is nobody needs selfishness around them.
I've read your reply to kerri, actually the meds can put weight on and with me it's the opposite way around the doctor's are keeping an eye on me but i have trouble eating certain foods now as certain things trigger the pain more in me and you snapped because your down but at least your eating something, i thought myself you was thin and was hardly eating and your profile pic makes you look so slim.
I hope today is abit better for you ((Hugs to you)) xxx
draginfli said:
Thank you Tex!
I really just flipped out on this question! Please see my response to Wedjed.... It was just my day to freak out! I have been feeling really rough lately, really, really bad and I just can't believe that someone who is lucky enough to know Ann A. in person would be so horrible to her!
Thank you for being kind to me Tex!
Tez_20 said:
Hi draginfli,
Since i was told 5yrs ago i can't seem to except it in one way because it's like you say one day to the next we never know what's occuring, it would'nt be so bad if we had a flare and it carried on till it eased but that's not the case, theres always added extra's each day ontop.
It affects all our looks in time and appearence, i had long hair now in the last month my hair's been skinned again on grade 1 to try and help my hair roots because it either comes out alot or i go into bald patches "I do miss my long hair"....that drives me mad not so much my looks.
My heart goes out to you and try and eat a little more as lupus alone can affect you and cause weight loss. xxx
draginfli said:
Ann - I've not gotten used to and I will never, ever get used to it! Like everyone else with Lupus, it is impossible to get used to it because something changes or gets worse every day! One day I'm dizzy, the next day the dizziness causes me to fall. One day I can't lift the phone to call my son and the same way the next and the next and the next until 2 weeks goes by - why doesn't he just call me? I know, because I'm a burden. The pain is horrible, pain pills or not, I can't think and I can't eat because I'm nauseous 24/7 - CRACKERS are my main diet and 7/up! When I look at a picture of me pre-flare and then I walk by a mirror I nearly scream because I don't recognize myself. I used to be beautiful - REALLY! These things are only tidbits - there is much more that I will not bore everyone with. No, I will not ever get used to it - I can hardly believe that this is really, truly my life! Tell your lovely friend how very, very sorry we all are for her soul.
