I’ve been MIA. Not only from writing in my journal, but from my life
Lupus is a torturous illness.
Lupus doesn’t allow you to live your life. In my mind I make plans to do stuff but my body does not allow me to put those plans into actions.
Living with Lupus has changed my entire life. There is a saying………”I have Lupus, but Lupus doesn’t have me!” I’ve been trying to live by that quote.
It’s amazing how your life can change. One day you are working. You’re body is fit. You go and do. Then one day things are entirely different.
There are so many things I want to do.
Work in my garden.
Cook real meals for my family.
But, most importantly, be able to get up in the morning and hop out of bed, get into the shower and go about my day.
I can’t do those things.
So for the past few months I have been feeling sorry for myself. It’s the summer. A time when I would be doing stuff. I don’t wallow. But, I am worn out.
My pain has been under control for the past day or so. This is only because I gave in and went to see a pain management specialist. Dr. P. prescribed a fentanyl patch. So far so good.
Although, my exhaustion is running rampid. I am determined to fight this.
I’ve made concessions.
Instead of planting and tending to my backyard garden, I’ve been container gardening.
I’ve been cooking meals in a crock pot or the convention oven.
I take my shower before I go to bed in the evening. Even though I prefer that freshly showered feeling in the am, it’s just not an option.
I hired someone to come in and clean the house.
I delegate chores now.
I order dinner more often.
I buy ready made food.
These were things that I never did.
I have made other concessions too. I give in to the fatigue and nap when I need to. I pace myself when doing stuff.
I’m tired of being sick and tired. I’m hating Lupus. But this is what my life is like now.
I have to make the best of what I have been given.
Loretta, after writing in her journal about how she felt and what it was like to live with lupus, said that she wasn’t complaining…….simply stating the facts.
I was never one to complain. Though I do now. I don’t like this new personality trait.
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10 comments:
Yes, friend... I can see very easily how summer can stir up renewed feelings of grief over what we have to give up.
(((((Genlte Hugs))))))
Love,
Loretta
I'm so sorry, I wish you weren't in pain or so tired. It sounds like an awful thing. Im happy the pain patch is working. The concessions you made sound good and very helpful which is good. You need to rest when you can.
http://journals.aol.com/am4039/life/
((((((Lu dear)))))) I am terribly sorry you are feeling so bad but so very happy that you are reaching out and writing in your journal! Bless your heart dear, I know how much your life has changed. You have valid reasons to grieve. I pray the Lord will bless you.
loving you
karyl
I totally understand where you are coming from. I am flaring now and its not pretty. I have experienced my first Blood clot and it was just as painful as when I had gout. I will be sending up prayers for you because we know how it feels and it doesn't feel good. I just said to myself tonight that I am sick and tired of hospitals, doctors and medication. Now where would that leave me?
LuAnne, I am sorry you have had to make concessions, but I think you have made very good choices. I too have had to make such choices in my life because I have fibromyalgia (something I don't talk about much). To be honest with you, I think it is a marvelous idea that you container garden. And that you cook in a crock pot. I do the same. You can make wonderful meals in there! I wouldn't call the other things you have done concessions either, just bright ideas. I think you can truly say "I have Lupus, but Lupus doesn't have me!" Yes, take time to grieve, but know that you are handling things splendidly. I am proud of you.
Krissy at Hope Lodge
http://journals.aol.com/fisherkristina/SometimesIThink
Luanne, I don't think you are complaining. I think you are stating facts. This IS how your life is now. I sooooooo understand. You need to grieve, honey. Sometimes grieving takes a long time. Sometimes it comes back when you least expect it. My illnesses have changed my life dramatically as well - my boyfriend cooks for me now or we would not have dinner on the table at night. I, too, shower in the afternoon or evening. I must nap. I never go out in the evening. It is just to hard on my nervous system. I now have someone come in from the county and help me clean. 24/7 pain and fatigue IS NOT fun, Luanne!! If anyone tells you to get over it or stop whining then they need to walk a mile in your shoes. A family member or two of mine (not Krissy!) just don't understand that I am not well. So grieve and find out who you can be now!! And you are doing this SO WELL!!!! I AM SO PROUD OF YOU!!!!! You have learned how to live within your means and still enjoy your family and still live a "normal" life! You rock, girl!! I love you!! xoxox Val
http://journals.aol.com/valphish/ThereisaSeason
Oh sweetie... if not for the complaining that I do with the people who really understand here online, I think I would have gone insane long ago. Loretta is right, it is just stating the facts... I think you did the same. These chronic diseases rob us of our lives, of the possibilities we thought was our life. Now, we have a new path, and dealing with that is very hard, it is a roller coaster of denial, anger, bargaining and acceptance... just like grief.
I have missed you dear friend....
be well,
Dawn
I acxtually think it's healthy to whine and complain a bit occasionally, but you have been struggling with your consessions and the memories of suimmer past, and have every right to feel down now and then. Anyone who reads your journal knmows the Lupus does not have you, even when the worst of symptoms occur. I keep you in my thoughts. Margo
It's okay to complain and I'm sure it's even healthy. I guess it must be awfully depressing living with lupus and getting it off your chest, although it may not cure the lupus, can at least help you cope. I have known Dawn for a while and through her I have learned more than I ever knew about lupus. Actually, reading your entry and hearing you vent helps provide me with a better understanding of this disease.
Anyway, found you through CarnivAOL and hope you will be feeling well soon.
Dianna
You are fighting the good fight and if you need to vent go for it. You cannot keep everything bottled up inside thats not good. Wishing for you....good days....Sandi http://journals.aol.com/sdoscher458/LifeIsFullOfSurprises
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