Hi everyone! I just joined this website recently. I originally thought I'd just use it to read what others have to say, but after receiving a few welcoming messages when I joined I realized talking might help. I was finally diagnosed after a few years of ailments Sept 2011. I had a very hard time dealing with it at the beginning even though it was bittersweet to realize that all of my "symptoms" finally made sense. I am very close with my family and have an amazing boyfriend who has been by my side since before I was diagnosed, but lately I am having a hard time coping again and I feel like my biggest issue is that I take everything out on those closest to me. I am currently working towards my masters degree in special education so I student teach full time every day. I have class at night and no time to work, so my boyfriend is paying for my health insurance. Lately he feels as if he can't take it anymore because I am always so down on myself and he feels very unappreciated. I feel like it's so hard for me to talk to him about this because he doesn't understand, and it's almost as if we need to "learn" how to be a couple with a chronic illness. Does anyone have any tips? I just started on a low dose of Wellbutrin to help the depression I've been feeling. I have been tremendously down on myself when I get sick and need to learn ways to stay positive. I know things can be worse, but sometimes I have a hard time seeing that. I don't blame my boyfriend for getting discouraged because I could only imagine trying to help someone every day and them constantly seeming unhappy with you. Any tips would be so so so helpful! Thanks everyone :-)
NCar48,
You are definitely not alone in this. This is a common occurence when we find out we have a chronic and possibly fatal disease. We are frightened, confused, angry, depressed...basically we go through a grieving process for the person we were. I wonder if there is something to being a spec ed teacher, as I was one as were a couple of other members (wierd). Anyway, you are in fact a "couple" with a chronic disease. What affects you will affect him. He is likely feeling angry that he can't help you through this so the frustration builds on both sides.
What I did initially was ask my husband to go with me to every doc that I saw. I still ask him to go with me as often as he can, but I take notes at every appt so that I can relay to him, correctly, what the docs said, the labs reported, etc.
After that, we don't dwell much on it because it is frustrating for him not to be able to help me. If we have plans and I am not up to it, I simply tell him I am having a "bad" day. Sometimes I will even use a smiley-face system with a frown for a bad day, :l for an o.k. day and a smiley face for a good day. This way I don't have to "complain", which admittedly can get tiring.
The best thing that I do though, is really celebrate the days I am feeling good. Concentrate on what you still CAN do and not on what you can't. Many things you can still do although you will need to make some accomodations, i.e. wearing a lot of sunscreen, resting between activities, finding comfortable positions for making love, dozing on the drive somewhere, etc.
Ask your boyfriend if he would be willing to go with you to your docs and if he doesn't have time ask him if he will read information on the disease. He also may learn a lot by becoming a member on this site. I find this site, because there is no judgement here, to be a very enlightening source for people that really want to understand this disease.
Information is power. If he understands that a little rest now will allow you to do an activity later, he may be more understanding. As to taking it out on those we love, many of our meds cause personality changes as well as the disease affecting the CNS itself.
There are several threads on here that talk about Lupus and psychosis and psychiatric issues. You can search for these threads at the top of the page. Also, reading the tab at top entitled Overview of Lupus is VERY informative.
We are here for you.
XOXO,
DeAnne
Hi NCar48!
I have to agree with whatstaysincegas. I think the biggest thing for my hubby and family was educating them on the disease and the medications because both affect your behavior. That way they know if I am cranky or depressed they know its not because of something they did. I used to be in so much pain I kept sighing really loud and I didn’t even know I was doing it. My hubby told me I was doing it and asked what he did wrong. I felt sooo bad! I started to pay attention to myself and he was right! So now when I am in extra pain I warn him and say I am not sighing and huffing because of you it’s because I am in pain today. Now he knows and it doesn’t bother him at all anymore. The other suggestion I have is to be on several lupus support groups. I am on four. I love them all because there are slight differences. They really help so you can “get things off your chest” and they help with all the little worries that come up with all the aches and pains and medication side effects. I go to my groups now to complain and voice my concern but then I show my hubby what I learned. He says this has really helped. He didn’t realize how devestating this disease can be until he saw so many others complaining about the same things! I even forward them (hubby and family/friends) pages from websites like from the Lupus Federation or from these sites so they know I am not crazy and they can read the medical facts for themselves.
Again I concur if your boyfriend is willing, information is power.
Hope this helps!
Hugs- Tina
I can def understand, everything is. So hard with this desease
I too felt that way within one year of diagnosis, this group helped me tremendously. One thing, I remind myself, when I feel depression, overwhelming anxiety creeping in, I just take a deep breath and say "I am alive today and this will be a good day" and just move through the day as it comes. These mantras are helpful as i begin to face flares, that make me feel like I will die, I just breathe through it and say "this is not my future only my right now" and things become better to handle. At least you have a boyfriend, I am a single mom without a romantic relationship/partner, so everything, I experience is truly on my own... Just breath through it and remember, you are a testament to being great.
I am sorry to say that I go throught the same EXACT thing and it is such a relief to know there are others that do this. I don’t have any great suggestions but I can give you validation.! Maybe we will figure it out together:) remember, breath in and out. Tomorrow’s great wheel of “what’s happenin today?” Will give you something else new and exciting;) I empathize. Keep me posted on any great ideas and I will do the same:)
Sure will
As an educator, if I had a bad class that year, I would count the days. Ill as I am now, I count the hours 'til tomorrow, because "I will feel better tomorrow". Tell yourself you only have so many days until the end of your internship. At the end of every day, scratch off another day in your mind, and it makes you feel as if you really can endure until the end. This mind exercise will actually brighten your mood to go home less stressed. Get a jar and fill with M&M according to the number of days left in your internship. Eat one at the end of the day and see the jar emptying. The sweetness in your palate will help you smile.
NCar48
You've gotten some good advice from members and I hope its helped. I was going suggest to ask your boyfriend to join here. When I was first diagnosed, my husband would hear every ache and pain that I had. Now, I just let him know when I'm having a really bad day. I've adjusted to the new normal, and I know that's its just a way of life to have some degree of pain.
I'm so glad that you posted a discussion here, because it not only helps yourself, but others as well. You will be amazed at how much better this will make you feel : ) Trisha
Ann,
Just as a follow-up to something you said...I was told specifically after being told to take a "ton" of Vit D and even a prescription strength, that it is not possible to take too much. The body will only absorb a certain amount and the rest is voided. My Rhuemy is VERY big on the Vit D 500 mg 3xs/ day + 15,000 u's 2x's week.
Just thought that i would let you know what she said on this subject in particular as I know you are very aware of the Vit D issue.
Ann A. said:
Dear NCar
I have two suggestions.
The first is to have your vitamin D levels checked and if necessary follow your docs orders for getting them into the optimal range and keeping them there. Research has demonstrated that people with lupus tend to have low levels of vitamin D and that vitamin D status in people with lupus is related to the frequency and severity of symptoms. Vitamin D sufficiency also improves mood. Vitamin D is an inexpensive nutritional supplement with few -if any side effects. It is possible to take too much but that requires going way way overboard.
My second suggestion is a book by Mary Shomon - Living Well with Autoimmune Diseases: things you need to know and your Dr. Didn't tell you.
The book offers great advice and a constant reminder that you can still live well.
Been there Ann A.
The Wellbutrin can take several weeks before you notice a difference. I always encourage people to see a counselor. Coping with all the emotions that come with the initial diagnosis of lupus is rough for us and those around us. We go through a grief process when we're first diagnosed and it's rough. Counseilng may help you learn how to cope with the negative and how to cope with a chronic illness. It can also help you with stress management since you have so much going on and stress is a major trigger for flares.
If possible, I always have my husband go with me to my appointments so that he can hear things straight from the doctor and can ask the doctor questions himself. If he can't go, he does research or we'll read a book together about lupus. There are some good ones out there.
As the others have said, it's frustrating for us to be in pain and feel crummy, but it's also frustrating for our loved ones to not be able to help us. Men especially have a hard time verbalizing those frustrations and fears. They get tired of us complaining. Journaling about my adventures with lupus... how I'm feeling physically, my complaints, venting, tears, all the emotions... really lets me complain/vent without my husband having to listen to me all the time.
You're not alone in feeling like this. I've battled those feelings just as you are now. Everyone has a different way to manage all these emotions, you just have to try different things and find what works for you. Your coping strategies may also change over time. For a while I was on Prozac. Then that wasn't doing anything for me around the time I was being tested and I had to research as much information as possible on lupus. The research made me feel informed and more in control for the battle with lupus. I felt prepared for the physical battle by then, but not the emotional so I turned to this group and journaling.
I hope you are able to find the perfect mix of coping strategies and are able to find some relief from all these heavy feelings.
Hugs,
Megan
Wow I am blown away by how much support I’ve gotten already! Thanks everyone so much for all of the input and ideas. I am definitely looking into all of them. I bought that book by Mary Shomon. I know for a fact my vitamin D levels are low as well…come to think of it I need a refill of my rx because I haven’t taken it in a few months. It’s also just nice to talk to people who are going through the same thing I am…rather than just talk ABOUT it to people who aren’t feeling it. Thanks again, it means so so much 
Nicole
Ann,
Certainly no reason to apologize. As with most information we often find conflicting information. My vitamin is Citrical Max +D and only comes in a 500iu tablet. For the 2 weeks I took the prescription strength it was 15,000 iu gelcap.
I am still at the lower levels of Vit D. Because we absorb Vit D through UV rays and with Lupus we are advised to stay out of the sun.
I believe she started me on this as a way to "jump-start" my bodies ability to absorb the Vit D, much like I needed a "jump-start" my body's ability to absorb iron...another element that is difficult for Lupies to absorb.
That said, I did ask her when I saw her again today about overtaking Vitamin D (I dislike taking any vitamin) and again she stated that because our bodies tend not to absorb what is taken in, i.e. vit D, iron, phospherous, and several others, my body would take what it could absorb and void the rest.
I know these are contratictory philosophies, however I do trust my Rheumy implicitely. Being a former educator myself it means a lot to me that she taught specifically about Lupus at the University level.
Again, though you never need to apologize for us having a differing opinion. This is a disease that has so many variables that there is no "one-size-fits-all" treatment.
I am happy that you are doing well,
XOXO,
DeAnne
Ann A. said:
Dear DeAnne,
Please allow me to apologize before hand for offering information that appears to contradict what you were told by a physician. Also please accept my apology for saying that I find it difficult to believe that your physician has you taking 1500mg of vitamin D per day. The current upper limit set by the IOM is 100mcg per day. Also please accept my apology for the fact that the discussion is going to become fairly technical in terms of units of measurement. Hopefully, you and others will find it somewhat helpful. It is not meant to disrespectful in any way.
Anyone who is taking supplemental vitamin D should be aware of the fact that most experts consider toxicity from excessive vitamin D supplementation to be possible - rare but possible. One of the reasons that blood serum testing of vitamin D is recommended is because it is possible for blood serum levels to be deficient and it is possible for blood serum levels to be excessive. Vitamin D is a fat soluble substance (like vitamin A, E, and K). When fat soluble vitamins are taken in the form of supplements, the excess is not excreted as is the case with those which are water soluble. Excess vitamin D is stored in fat cells and it circulates in the blood. When blood serum levels are tested, labs in the US generally use an expected range of 32-100 ng/mL. Any vitamin D blood serum level 25(OH)D above 100 ng/ml is considered to be excessive. When the level gets to be around 150 ng/ml symptoms of toxicity can be expected.
This link will take anyone who is interested to the page on which the vitamin D council discusses the topic of vitamin D toxicity.
http://www.vitamindcouncil.org/about-vitamin-d/what-is-vitamin-d/vi...
The Mayo Clinic also points out that while vitamin D toxicity is rare, when it does occur it is a very serious condition
http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008
The Office of Dietary Supplements of the National Institutes of Health also discusses the problem of excessive vitamin D levels in its fact sheet.
http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/
In Europe blood serum levels of vitamin D are often measured/reported in terms of nanomoles per liter. The conversion is fairly simple - to go from nanograms per mL to nanomoles per L - multiply by 2.49. To make the conversion in the other direction divide instead of multiply.
With all due respect, I politely ask you to reexamine what supplement you are taking in doses of 500mg three times per day. These are my reasons for asking you to do so.
- 500mg of vitamin D would be an extremely large dosage a dosage larger than any I have ever seen before. In the United States vitamin D is generally measured in International Units (abbreviated IU). In the rest of the world it is measured using the metric system but generally sold in micrograms (mcg or (µg) rather than milligrams (mg). Here I have done the conversions one step at a time to make my reasoning transparent.
500mg (milligrams) is equal to 500,000mcg (micrograms)
The converter that I used can be found with this hyperlink
http://www.thecalculatorsite.com/conversions/common/mcg-to-mg.php
500mg of vitamin D would be equal to 500000 mcg or 20,000,000IU
http://www.robert-forbes.com/resources/vitaminconverter.html
(these conversion formulas are specific to the substance involved).
500mg 3X per day would then be 60,000,000IU
That is a very large amount of vitamin D when the upper limit in the IOM guidelines is 100mcg or 4000 IU
- It sounds as though you may be taking 500mg of calcium three times per day. Because our bodies cannot properly use calcium without vitamin D they are often sold together. The calcium molecule is very large and our bodies can only absorb so much of it at one time. The standard single dosage of calcium is 500 mg. The amount of vitamin D that is put into the pill with the 500 mg of calcium is usually 600 IU. So it is very common for people to be supplementing more than once a day with tablet that contains 500mg of calcium and 600IU of vitamin D. And there are some other combinations in terms of dosage but it is the calcium that that is sold in mg (milligrams) and the vitamin D in International Units (IU). I do believe that some physicians might advise that excess calcium is excreted from the system.
So with no intention of being disrespectful, I am pointing out that most of the experts I have read believe that vitamin D can be toxic and that it is highly unlikely that your physician has you taking more than 60,000,000 IU of vitamin D per day.
I hope that my lengthy explanation is helpful
Very Truly Yours
Ann A.
And if anyone finds a flaw with my reasoning or my calculations, please point them out. I love it when anyone finds my mistakes before my professors find them.
Megan,
That is excellent advice. My husband thinks that perhaps I need to see someone and I am open to it. This disease affects our CNS which means that our emotions are all over the map on some days.
I, too, find a journal very helpful. For me I can look back and try to see triggers.
Super advice,
DeAnne
I read your topic when it first came out and been thinking about plus speaking to others about it since i have completely different take on what you said.
I think your bf has been completely wonderful since he stood by you through all your testing and first couple years of you getting use to having a chronic illness. With out any commitment from you, he is paying your insurance. This is really way beyond what most people would do.
Than i looked at your schedule, student teaching all day, than you go to school plus you need to study as well plus prep for your next day classes. I do not know how you can do all this with a chronic disease. Healthy person would be exhausted on this schedule. I know at your age with lupus i had to drop out of college since i could not work and go to college even just one night class. It was too much and i needed money to live on so job won and i was lucky that it though not even near my dream it turned out to be great job...i was very lucky how they treated me.
With how busy you are when do you have time to spend with your bf? I can see how he feels you do not appreciate him since he has stood by you. You openly admit that you get frustrated and i totally get it since odds are you are constantly exhausted all the time so you take it out on him. Well everyone wants to feel appreciated especially when he has not put pressure on you making time for him. I do not think he needs education about how you feel...he totally gets it as he stood by you and helped you way beyond.
I think that with chronic illness you might want to lower you class load so you can get some rest and not be so exhausted. So you can show this guy how much he does mean to you. I would imagine that you hope to marry him and if you do not let him know how much you appreciate how he has stood by you and helped you out with your insurance...he might feel used and leave.
I do hope you plan on marrying this guy. If you have any doubts you really need to tell him now. it is only fair thing to do. He has put up with a lot...and deserves to be treated kindly and with respect he has shown you.
I also think you need to lower you load to take care of yourself...like i said even healthy person would be exhausted on the load you are doing. I really do not get how you can...you might be pushing yourself into hospital stay...so i really be careful about checking in with your body. If you are losing your temper etc...might be saying you are exhausted slow down. It is okay to do this too. You been so busy with school etc..that you have not allowed it to all sink it sounds about how you are sick and cannot hold a normal or even worse beyond normal load with out it bursting out somewhere eventually with your body. You must now learn to slow down and take care of yourself...give you time to rest during the day and get a full night's sleep.
I applaud that you are trying to follow your dream or goal...but sadly sometimes once we are sick we cannot. You might even get some counseling so you learn how to stop expecting yourself to be healthy and normal still. Also so you learn to remember to give your bf appreciation and the love he deserves. I am positive if we heard his side he knows a lot about lupus as he has not got mad at you but only been there and not put any pressure on you to make time for him. I think that possibly you have not yet grieved or accepted the truth about you diagnoses...and i know it is hard and very very sad.
On positive side...in your life time i think they will have cure...finally find if it genetic and than find a cure. But i hope you go and tell your bf how wonderful he has been first of all...if you love him and want to spend you life with him...than start grieving and talking to him about way to lower you load of work and school. I mean all of this with genuine concern for you and hope you do grieve and begin to take good care of yourself by slowing down. I do not want you to make yourself so sick you end up in the hospital...that is what worked with me...when my doctor say it was rest or he put me in the hospital so i had too....i am sorry you life has changed and i hope you can finish college...i am sure it just might take a year more and many people do this. not anything to feel bad about...actually you are so lucky you can do this much...every time i tried i got so sick well i could not get out of bed even if i tried...so be happy about what you can do but you need to slow down and it is not failing etc...it is just how it is. Sooner you accept this sooner you can stop beating yourself up and than taking it out on those you love. i hope you get this soon and rest!
siskiyousis
what a touching, heartfelt reply : ) Trisha
siskiyousis said:
I read your topic when it first came out and been thinking about plus speaking to others about it since i have completely different take on what you said.
I think your bf has been completely wonderful since he stood by you through all your testing and first couple years of you getting use to having a chronic illness. With out any commitment from you, he is paying your insurance. This is really way beyond what most people would do.
Than i looked at your schedule, student teaching all day, than you go to school plus you need to study as well plus prep for your next day classes. I do not know how you can do all this with a chronic disease. Healthy person would be exhausted on this schedule. I know at your age with lupus i had to drop out of college since i could not work and go to college even just one night class. It was too much and i needed money to live on so job won and i was lucky that it though not even near my dream it turned out to be great job...i was very lucky how they treated me.
With how busy you are when do you have time to spend with your bf? I can see how he feels you do not appreciate him since he has stood by you. You openly admit that you get frustrated and i totally get it since odds are you are constantly exhausted all the time so you take it out on him. Well everyone wants to feel appreciated especially when he has not put pressure on you making time for him. I do not think he needs education about how you feel...he totally gets it as he stood by you and helped you way beyond.
I think that with chronic illness you might want to lower you class load so you can get some rest and not be so exhausted. So you can show this guy how much he does mean to you. I would imagine that you hope to marry him and if you do not let him know how much you appreciate how he has stood by you and helped you out with your insurance...he might feel used and leave.
I do hope you plan on marrying this guy. If you have any doubts you really need to tell him now. it is only fair thing to do. He has put up with a lot...and deserves to be treated kindly and with respect he has shown you.
I also think you need to lower you load to take care of yourself...like i said even healthy person would be exhausted on the load you are doing. I really do not get how you can...you might be pushing yourself into hospital stay...so i really be careful about checking in with your body. If you are losing your temper etc...might be saying you are exhausted slow down. It is okay to do this too. You been so busy with school etc..that you have not allowed it to all sink it sounds about how you are sick and cannot hold a normal or even worse beyond normal load with out it bursting out somewhere eventually with your body. You must now learn to slow down and take care of yourself...give you time to rest during the day and get a full night's sleep.
I applaud that you are trying to follow your dream or goal...but sadly sometimes once we are sick we cannot. You might even get some counseling so you learn how to stop expecting yourself to be healthy and normal still. Also so you learn to remember to give your bf appreciation and the love he deserves. I am positive if we heard his side he knows a lot about lupus as he has not got mad at you but only been there and not put any pressure on you to make time for him. I think that possibly you have not yet grieved or accepted the truth about you diagnoses...and i know it is hard and very very sad.
On positive side...in your life time i think they will have cure...finally find if it genetic and than find a cure. But i hope you go and tell your bf how wonderful he has been first of all...if you love him and want to spend you life with him...than start grieving and talking to him about way to lower you load of work and school. I mean all of this with genuine concern for you and hope you do grieve and begin to take good care of yourself by slowing down. I do not want you to make yourself so sick you end up in the hospital...that is what worked with me...when my doctor say it was rest or he put me in the hospital so i had too....i am sorry you life has changed and i hope you can finish college...i am sure it just might take a year more and many people do this. not anything to feel bad about...actually you are so lucky you can do this much...every time i tried i got so sick well i could not get out of bed even if i tried...so be happy about what you can do but you need to slow down and it is not failing etc...it is just how it is. Sooner you accept this sooner you can stop beating yourself up and than taking it out on those you love. i hope you get this soon and rest!
Thank you again everyone so much for all of the help and ideas. Siskiyousis, I think you hit the nail on the head. First of all, I completely agree that I am still "grieving" the fact that I have this illness. I feel like I tend to almost forget anything is wrong when I am feeling good, and then am reminded again when I am sick what I am dealing with. You're completely right that I "expect" myself to be healthy and then am completely brought down again when I get sick. I am trying very hard to realize that this is with me even when I am feeling well. I am going to start writing (as someone mentioned), as well as continue going to therapy. I know I have to learn to slow down as well. It's hard because some people feel like there is more I can be doing because I don't have money (ex: picking up a shift waitressing on the weekend), but I have to constantly remind them that I am so overwhelmed as it is trying to finish school that if I add anything else I will get sick more. Luckily, I graduate in May so there is finally a light at the end of the tunnel.
I have been going to counseling as much as I can afford it, and lately I have been bringing my boyfriend with me. You are COMPLETELY right that I am basically using all the positive feelings I have in school and work, and when it comes to him I am exhausted and even though we are physically together every night, mentally we're not. Our nights have mostly consisted of him trying to help me and me moping around or complaining. I am ashamed and embarrassed of the way I've been acting but I'm also happy I realized it so that I can change. I've gotten so many great ideas this last week from this site, family members and from the therapist we went to about ways that I can learn to deal when I don't feel well so I am not bringing him down with me. I have to realize all the things he is doing for me and treat him the way he deserves to be treated even if I am not feeling great.
Thanks again everyone, you have no idea how much this has helped already :-)
That is a wonderful reply, Siskiyou.
NCar,
I think we sometimes think that because we are feeling something our significant others should be aware. My husband married me even knowing I was ill...not the diagnosis but aware something was wrong.
That said, now that he knows he feels relief that there is a name, while it took me some time to come to grips with the diagnosis and prognosis.
We have to keep in mind that our loved ones (the ones that are still around) are trying to come to terms with our limitations.
I agree completely about perhaps taking on too much. I was lucky enough to not be in a "flare" while in college so I was able to work and teach. However, before the diagnosis I was showing symptoms and simply could retain nothing and had to give up my dream of a Master's. That said, I am very proud of what I could do. There are many things in the education field that could still give you the feeling of helping children without overdoing it on your health.
Your boyfriend sounds like a keeper. There are so many members here that do not have that kind of support.
Again, what works for me may not work for you. That is NOT dwelling on the bad days. Simply saying I am having a bad day (once), but on the good days I try to make them about him. This is my way of telling him how much he means to me. I try to do as much as I can around the house so he doesn't have this extra chore, but as we know it's not always possible to do everything I would like to do.
As to spending the evening moping around...it really will take some time to grieve. I have said this to many members. You will go through the stages of grief until you get to the stage of acceptance. Once you reach that, I believe you will find that once you reach that, you will find ways to accomodate.
You have gotten some great advice and I hope some of it helps.
You have a place to mope here so that you can enjoy your time with him. :),
XOXO,
DeAnne
thank you...i actually was so afraid i was going to hurt her feelings that i almost did not say what i felt. So really appreciate your support.
Trisha said:
siskiyousis
what a touching, heartfelt reply : ) Trisha
siskiyousis said:I read your topic when it first came out and been thinking about plus speaking to others about it since i have completely different take on what you said.
I think your bf has been completely wonderful since he stood by you through all your testing and first couple years of you getting use to having a chronic illness. With out any commitment from you, he is paying your insurance. This is really way beyond what most people would do.
Than i looked at your schedule, student teaching all day, than you go to school plus you need to study as well plus prep for your next day classes. I do not know how you can do all this with a chronic disease. Healthy person would be exhausted on this schedule. I know at your age with lupus i had to drop out of college since i could not work and go to college even just one night class. It was too much and i needed money to live on so job won and i was lucky that it though not even near my dream it turned out to be great job...i was very lucky how they treated me.
With how busy you are when do you have time to spend with your bf? I can see how he feels you do not appreciate him since he has stood by you. You openly admit that you get frustrated and i totally get it since odds are you are constantly exhausted all the time so you take it out on him. Well everyone wants to feel appreciated especially when he has not put pressure on you making time for him. I do not think he needs education about how you feel...he totally gets it as he stood by you and helped you way beyond.
I think that with chronic illness you might want to lower you class load so you can get some rest and not be so exhausted. So you can show this guy how much he does mean to you. I would imagine that you hope to marry him and if you do not let him know how much you appreciate how he has stood by you and helped you out with your insurance...he might feel used and leave.
I do hope you plan on marrying this guy. If you have any doubts you really need to tell him now. it is only fair thing to do. He has put up with a lot...and deserves to be treated kindly and with respect he has shown you.
I also think you need to lower you load to take care of yourself...like i said even healthy person would be exhausted on the load you are doing. I really do not get how you can...you might be pushing yourself into hospital stay...so i really be careful about checking in with your body. If you are losing your temper etc...might be saying you are exhausted slow down. It is okay to do this too. You been so busy with school etc..that you have not allowed it to all sink it sounds about how you are sick and cannot hold a normal or even worse beyond normal load with out it bursting out somewhere eventually with your body. You must now learn to slow down and take care of yourself...give you time to rest during the day and get a full night's sleep.
I applaud that you are trying to follow your dream or goal...but sadly sometimes once we are sick we cannot. You might even get some counseling so you learn how to stop expecting yourself to be healthy and normal still. Also so you learn to remember to give your bf appreciation and the love he deserves. I am positive if we heard his side he knows a lot about lupus as he has not got mad at you but only been there and not put any pressure on you to make time for him. I think that possibly you have not yet grieved or accepted the truth about you diagnoses...and i know it is hard and very very sad.
On positive side...in your life time i think they will have cure...finally find if it genetic and than find a cure. But i hope you go and tell your bf how wonderful he has been first of all...if you love him and want to spend you life with him...than start grieving and talking to him about way to lower you load of work and school. I mean all of this with genuine concern for you and hope you do grieve and begin to take good care of yourself by slowing down. I do not want you to make yourself so sick you end up in the hospital...that is what worked with me...when my doctor say it was rest or he put me in the hospital so i had too....i am sorry you life has changed and i hope you can finish college...i am sure it just might take a year more and many people do this. not anything to feel bad about...actually you are so lucky you can do this much...every time i tried i got so sick well i could not get out of bed even if i tried...so be happy about what you can do but you need to slow down and it is not failing etc...it is just how it is. Sooner you accept this sooner you can stop beating yourself up and than taking it out on those you love. i hope you get this soon and rest!
i am really glad i could help both of you...i hope both! lol! I almost did not say a word for fear that it would sound harsh or not supportive and last thing i want to do is hurt anyone's feelings. So i am glad that i finally did it now.
I think you need to give yourself a big hug since you listen to it with an open heart and honesty. Not everyone can do that so give yourself a lot of credit. Thanks again, I am glad i helped and i hope now you take the time. much love
NCar48 said:
Thank you again everyone so much for all of the help and ideas. Siskiyousis, I think you hit the nail on the head. First of all, I completely agree that I am still "grieving" the fact that I have this illness. I feel like I tend to almost forget anything is wrong when I am feeling good, and then am reminded again when I am sick what I am dealing with. You're completely right that I "expect" myself to be healthy and then am completely brought down again when I get sick. I am trying very hard to realize that this is with me even when I am feeling well. I am going to start writing (as someone mentioned), as well as continue going to therapy. I know I have to learn to slow down as well. It's hard because some people feel like there is more I can be doing because I don't have money (ex: picking up a shift waitressing on the weekend), but I have to constantly remind them that I am so overwhelmed as it is trying to finish school that if I add anything else I will get sick more. Luckily, I graduate in May so there is finally a light at the end of the tunnel.
I have been going to counseling as much as I can afford it, and lately I have been bringing my boyfriend with me. You are COMPLETELY right that I am basically using all the positive feelings I have in school and work, and when it comes to him I am exhausted and even though we are physically together every night, mentally we're not. Our nights have mostly consisted of him trying to help me and me moping around or complaining. I am ashamed and embarrassed of the way I've been acting but I'm also happy I realized it so that I can change. I've gotten so many great ideas this last week from this site, family members and from the therapist we went to about ways that I can learn to deal when I don't feel well so I am not bringing him down with me. I have to realize all the things he is doing for me and treat him the way he deserves to be treated even if I am not feeling great.
Thanks again everyone, you have no idea how much this has helped already :-)