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Apologies for anyone who is now humming that disco tune now...

Does anyone else just get completely sick of the effort it takes just to stay alive and functional? The amount of pills we have to take every day, the food we have to plan and eat, the excersize we are supposed to do, but not too much. It takes so much mental energy for me to remeber all that I am supposed to do to stay alive, like eat and drink water and stuff. And then if I drop the ball for one second, I seem to get punished so much...if I miss a meal I get too weak to move, if I miss a pill my joints flare up and I can't walk, if I type for too long my hands swell up and thats my evening out the window. At the moment I think I have a cold, but of course with Lupus the actual cold is not the issue...my joints are flaring, my temperature is high and uncomfortable, and I feel like collapsing.

How do you all manage? Do you have any tips to cut corners so I don't just give up completely? Any advice much appreciated!

RM
 

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I hear ya. I was diagnosed around 13 years ago and I've been living with it ever since (actually a few years before I was diagnosed also!). And that seems to be alot of it...learning to live with it. Lupus has changed the way I plan things, do things. I'm always careful about planning much ahead of time, who knows how I'm going to feel in a week or two? I've gotten used to it, it's fustrating, and I miss the ole days of not having to worry about how I'm going to be feeling. I'm in the doghouse right now because I was suposed to go to my Dad's for thanksgiving, but he lives a few hours drive away and I just wasn't feeling up to it. I find I enjoy just getting some quiet time at home. Took a week off recently and just stayed home, did some things around the house, took the dogs for walks. Nice quiet week, I did enjoy it, but I also miss going to places and seeing things!

-Eric
 

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Roseanne,
The vast amount of tablets really get to me especially as a couple of them taste dreadful! I do know what you mean,but I hope it soon passes for you. It sounds to me like you are exhausted and need to spoil yourself. You will bounce back-we all do, Lupus does not attack weak people it seems to go for the ones who always got everything done. I have no doubt that you are strong and resourceful I hope you have help from those around you. It is really important to try to have cheerful people around you. (not always easy in a family)
xxxLola
 

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Sometimes I think I have a handle on things, other times I don't.

Sometimes I have good practices of what to do and how to do them.

Other times I don't.

I am still trying to figure it all out.
 

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Hi Roseanne,

:hug: The daily living with a chronic disease can really get you down.

The only way I can manage is with lists, a calendar, an alarm clock and a pill case kept in one location. Each morning after taking my first meds I plot my day. The "must do" part is entered first. I actually write down dishes, when to start dinner preparations, medication times, appointments, etc.. Doing anything else depends on how I feel at the time. I also consider if I need to rest for something the next day.

It took time for me to learn but I no longer seek perfection. On bad days it is just survival mode. The cleaning can wait. I have also become a good delegator. Learning to say "no" has helped too. In time you will find what works for you.

Take care,
Lazylegs
 

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Hi Roseanne

Im sorry you are feeling so fed up with it all :hugbetter: (and YES that darn tune is buzzing around in my head all day :lol:)

I can really empathise with getting those bad days you speak of and getting sick and tired of having to remember to do everything and most times in a particular order. I just want to wake up one day and not have to 'do' anything but whatever takes my fancy.

For the first time in an absolute age I forgot to take my meds this morning. I remembered just as I was about to leave the house so I quickly grabbed a glass of water and took the most important one - the prednisone. I meant to take the rest a while later while I was out. I was walking around a shopping centre later this afternoon and my feet, ankles, wrists and hands were suddenly killing me. Of course I couldnt figure out why because my joint pain has been greatly helped lately by the Celebrex. D'oh..... I remembered then that I hadnt taken my Celebrex. I didnt know whether to laugh or cry. It brought home how dependent I am on the meds and how little mercy one gets if you forget - sort of gives one a reality check (not a nice feeling).

If its any consolation Roseanne, I think we all get sort of fed up from time to time but it seems that we all manage to bounce back again and roll along for another while without thinking too much about it. I guess thats the secret. Take each day as it comes and allow yourself the luxury of feeling fed up and angry on the bad days.

When I get really, really fed up, the way I snap out of it is thinking that things could be much worse. I cant say it works all the time but it helps me now and again ;)

Oh yeah - I almost forget to say. I sort of went on a sun lotion strike a couple of weeks ago. I was sick and tired of slathering the darn stuff on my face and waiting for the shine to go away before I could face the world without scaring little children. Guess what? I have a lovely red face which is stinging like a sunburn! Back to slathering again tomorrow but at least I got a break from it! :hehe:

Much love
Joan:rose:
 

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Roseanne,

Your not alone for may of us just getting out of bed is a chore. I can understand the pills, I feel like my mother which I never wanted to be like in the pill department. Me myself I just try to do what I can everyday and somedays I over do it, I think we all tend to forget we are sick. Ok best advice I can give. Life style change and live it that will help with the memory part. Like the water have a glass with your meds, with lunch, and at bedtime. Then I keep a bottle of water by my bed at night so if i want a drink it is right there and it is water also. As for eating I eat when I want and what I want I just don't over do it. But if you want to be a good girl then it will take that life style change I was talking about.

The cold, when I even get a stuffy nose or start coughing I grab the dayquil and start it asap. I do it for 4 days and then try not taking it if it is still there back on it I go. The fever can be uncomfortable so shower a little more and try taking one before bed. It might also help with the joint pain, I have a pain pill called ultram so if I get too uncomfortable then I take it and I keep it by my bed also. The drawer in my nightstand is called my just in case drawer for a reason.

I am sorry you are not feeling very well and that is about all the advice I can offer at the moment may not be much, but hope it helps a little.
Tammy
 

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I also add my voices to those who share your pill and lupie lifestyle frustrations.
Sometimes I do little things to remind me that this life belongs to me not the disease. Sometimes these things go well and other times I suffer a bit afterwards but I always recon that you have to have a balance between mental health and physical health.

Saying that last time I saw my Rhuemy I burst into tears saying I hated Lupus and he offered me some counselling which I might take up and if you could get that it might help you to discover your ways of coping with life and Lupus.

K
 
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