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.

Thanks Rachel and Tez,

I love you Rachel and I am not going to wimp out on you. Tez, I am so sorry that you have had strokes!! My friend is definitely self centered. She thinks that the entire world revolves around her. Other people exist to provide her with support which she takes for granted and fails to reciprocate.I really wanted to punch her. But I am old and do not punch people anymore (LOL), so I had to vent.

Rachel is correct, I AM A TOUGH OLD BIRD!   I am usually the tough old bird who is talking about the importance of positive mental attitude and offering tips on coping. But I know, without a doubt, that in order to cope effectively I must be realistic about the challenges that I need to overcome. Before I knew about the cataracts, I put a lot on my plate for the next few weeks. And there is no way to take many of those things off of the plate before I get the cataracts fixed. So, admitting how much of a problem they are is the first step in figuring out how to cope with them. I now know that it takes me longer to get everything done. But today I finished the taxes and the handouts for tomorrow's lecture prepared. Now, I am going back to bed for awhile.

Rachel, because I had so much work to get done, I have not been to the pool in a couple of weeks. All work and no play (or exercise) makes Annie a very grumpy girl.


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.

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

:-).

Sheila, I think that is what made me need to vent so badly. She "went there" on a day when dealing with this newest issue had stretched my adaptive capacities to their limits and left me wrung out with exhaustion.  We all have breaking points.  Mine seems to be in learning to deal with issues of lupus and aging at the same time.  When I was diagnosed all those years ago, the physicians told me that I was gonna die young. They never told me that I would get to experience lupus and aging simultaneously. It didn't help that part of my exhaustion came from work that I have been doing to help my friend out.  The next time she finds herself in a jam, I might just say, "Well, you get yourself into so many pickles, you should be used to them by now!" Probably not. Because I definitely don't have the energy required to hold on to resentments.

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!

thanks Mariam,

Thanks for this. It is part of the pep talk that I needed. I've had several major surgeries in the last few years and my brain is screaming - NO  NOT AGAIN.!

In October 2011, I had back surgery. When I started walking to recuperate from that I noticed that my glasses were dirty. I cleaned and cleaned and cleaned. Then after I was more mobile, January I think, I went to the ophthalmologist for a routine hydroxychloroquine  screening. I had all of these things on my agenda that I wanted to get done before the surgery and thought May didn't seem that far away. Now, I am frustrated at how difficult it is to get things done. We will see if I get them all done before I have to stop. Tomorrow I am doing one of those adapt to your circumstances experiments. I think that part of the problem that I had coming from church yesterday is that my eyeglasses have transitions lenses and the sun was very bright. I understand that glare impacts vision with cataracts but I think when the transitions go dark because of bright sunlight, that is when I really feel "blind." Tomorrow, I am going to see if my regular distance prescription works better. Tomorrow I am going to lead a 2.5 seminar - brain fog and dim vision - should leave me with a story to tell.

Thanks for thinking about the print. When I am not in mope mode, I remember just how large I can make fonts on this 26" screen that I am using.
 
Marion said:


Good luck with the cataract surgery. It made my life very different and I only need reading glasses now.

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