View Full Version : Feeling a bit low...
07-05-2008, 07:52 AM
Hi everyone -
Its Saturday AM and all the celebrations are pretty much over in my neck of the woods. I metioned earlier that the 3rd of July is HUGE where I am (right on the beach) where they do a big bonfire, fireworks, etc. Its also the biggest drinking night of the year, so there were slews of teenagers acting like fools. The police were pretty good at keeping under control, though. The problem is when the motorcycle police are kicking everyone off of the beach, they have to walk by MY house to leave!! So I was up pretty late.
Anyway, I think because my sleep is a bit messed up, Im feeling REALLY down these past couple of days. My right hip is a complete MESS - sore to touch, move, lay on - there is a lump there again (had that ALL winter when I was really sick, too) and the pain effects the groin, down the leg, and around the back. I know what its from - though I did show ALOT of caution - but leaning over planting my flowers for a few hours must have set it off. And now, the constant pain, combined with little sleep is making me feel depressed. I hate to feel this way - I want to feel good and be happy, but, it cant always be that way, I know.
Sorry to drag on...Im so glad I can come here and do that...no one truly gets it around here. My mom (God grant me patience today...) keeps calling me to do this, that, etc. I try to be civil, but she lacks the ability to take a hint. Finally I said, "Mom, listen...Im really tired, I havent had a lot of sleep, and Im in AGONY right now.. (cue tears...) I dont want to fight with you, but Im not in a good frame of mind right now, OK? I'll call you when I feel better later on..." She - as usual - sounds aggravated..uugghh.
Im going to try and get out of this mood...sorry so long guys..
07-05-2008, 08:32 AM
I am sorry to hear that you are not feeling well. I hope that you get to feeling better. It really sucks to be in pain. I had to take two muscle relaxers as my back is bothering me today. I just hope that you get to feeling better.
07-05-2008, 12:10 PM
Gentle hugs, dear!
You can vent at us all you like, we'll listen, understand, and NOT expect you to talk nicely until you feel better. THEN, when you've got it all out of your system and you're feeling better, you can call your Mom back.
Gardening can be such a mixed blessing - we love it while we're out there, and suffer for hours after. And losing sleep doesn't help! Have you tried either heat or cold on that hip? Or do (...gentle...gentle...) yoga type stretches help? Or is it just rest... You said there's a lump - does your doctor know about this? If not, please do call.
I hope this passes quickly, in addition to your mother appreciating it, we'll all be happy that you're feeling better as well.
Until then - offering gentle hugs and a quiet space to get some much needed rest ~
07-05-2008, 04:10 PM
Thank you so much ladies -
Yeah, I got a whole host of things that are affecting me right now...This is week 6 (I believe) on the Prednisone, and, though I do fall asleep, I still am waking every two hours or so, and NOT going right back to sleep. I know this is a VERY BAD thing for us here, and I am not sure what to do about it. I have refrained today from any afternoon iced coffee - which is a mixed blessing...If I DONT have it, I'm a zombie by 2PM, but I think its also kicking up later in the evening, which is NOT good.
I did make it to my woman's group (close to my house), and I always get wonderful support there as well. You all are my lifelines!! There are a few nurses in my group, so I had one take a look at the lump on my hip. She said she could definately feel it, and that it needs to be checked ASAP. I was going to ask you all about this, because this is something that started within the past six months, and is truly one of the main things that kept immobilized this winter/spring. I was going to start another post, because I think thats what we are supposed to do, yes? This is my first forum, as well, and Im not sure. Just to be safe I will post under symptoms, and maybe you guys have some ideas,.
Thank you for all the warm hugs and kind thoughts - you guys are awesome...
07-05-2008, 05:42 PM
Sorry you're having a rough go of it. Feel free to vent when ever you need to. We all have our turns at it. Hope you get the rest you needs soon. :)
Hey, I'll trade you one slightly used toe for your hip. I'll even throw in one high mileage bumped noggin left over from my last scratch and dent sale. What a deal! Seriously, I'm sorry you are hurting tonight. I used to live in an apartment that was near an area with plenty of night life. It was really hard to sleep because of all the noise and people. I know how you feel with your insomnia as I had the same problem when I had the IV steroid infusion last month.I know you are very cautious about what sort of meds you take. The small Rx of diazepam my Dr. gave me helps, but that might be something you don't want to risk taking. My Dr. suggested to me once that the over the counter antihistamine Benadryl, can help a person sleep, and is fairly safe stuff. Not supposed to be habit forming. You might want to ask you Dr. or Rheumo if that's something you could use. Cutting back on your caffeine can't hurt. I love my coffee, but it really gives me the jitters. I wish your Mom could have been more understanding. The good relationship I have with my family now is a rather new thing. It hasn't always been that way.It took some time for my family to accept my situation, and realize that I was not blowing them off, or lazy. Be firm and consistent when you tell people that you are not feeling well. Some people will eventually get it, others might not. I've had people tell me how hard MY disease is on THEM. Some folks can be so selfish, and obtuse. Never forget that safeguarding your own health, and well being is priority number one. Go easy on yourself, and don't worry about other people tonight. Just take care of you. Vent as needed, and know you are not alone.
PS- Is this the first time you've had this lump on your hip? I'm not sure what to tell you about that. Can you get in to see your Dr. Monday?
07-06-2008, 08:46 AM
Youre a riot...We have to keep our sense of humor, dont we?? Youre very good at that and I love to read your posts. Im going to call the doctor tomorrow about my hip. Im not sure if I should call my GP or my old ortho, who is the one that found the fracture in my hip last time. I think I will call him, because Im sure he'll order an MRI, and Im not wasting time with any Xrays - they are somewhat useless unless you have a broken arm or something, you know? The lump does not feel like bone, but something else. THe bones around it (all the bones in my hip) are really sore, but I think this lump is pushing on something. Either way, Im no doctor, but this is TOO much to let go, or chalk up to lupus.
Also, maybe I can snag a cortisone shot out of it - whew....that would be nice!!
Anyway, thanks for the reply..hope you have a nice Sunday. Is the weather in Maine nice today too? Its really beautiful here, no humidity, not too hot, etc.
Talk to you soon,
07-06-2008, 09:24 AM
Did you call your doctor about the lump? I hope that you are feeling better today, both physically and emotionally. I know it can be frustrating when our family just does not understand. Has anyone suggested that you give your mother "The Spoon Theory"? If not, here it is. Perhaps this will help her to understand how you feel - Print this up and perhaps give to your Mother and anyone else who is having a difficult time understaning:
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".