Life With Lupus - Online Support Group

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 a drum 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.

HAVE YOU GOTTEN USED TO THIS YET?

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Hello Anne,

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.

Anne,

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.

Blessings, Sheila

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.

Hi Marion,

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.

love the button!

Anne,

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. 

Take care,

Kerri

 

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.

 

Tez xx

 

Amen to that button!!  LOL
 
Ann A. said:

Wadkun jaga,

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.

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.

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