Feeling really down and misrable

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Regular Member

Date Joined Jul 2009
Total Posts : 49
   Posted 9/23/2009 4:32 AM (GMT -6)   
Hi everyone,
I have not been diagnosed yet however I see my Rheumatologist next week for the 1st time. I am feeling very down lately. I was given strong anti-inflammatories from the doc which take away the sharp pains however the throbbing joint pain is still there and I hate feeling like an old woman as Im only 23. I would be able to cope ok with this if my husband of 1 year would help me with things but he acts like Im over reacting and that Im just complaining about nothing- "everyone gets aches and pains so deal with it" is what he said. I am always the one cleaning the house, cooking, looking after the dogs, doing the shopping etc and I work a full time job. He does not support me through this at all- and its causing me to feeling awful about myself. I feel like a freak. My mother had Lupus and passed away from it when I was 14- and my father was brilliant with her! He was so caring and helpful and loving. Why can't my husband be like this? Am I over reacting? I just feel so down- once Id like a hug and to be told its ok. Is this wrong?

New Member

Date Joined Sep 2009
Total Posts : 2
   Posted 9/23/2009 7:47 AM (GMT -6)   
Hi Lynn23...I'm so sorry to hear you're so down,sounds like you have a lot of reasons to be down....I wish we really could give you a hug and help in some way..Your husband sounds a bit callous,does he really understand fully how your condition affects you...if he loves you surely he would do all he can to help...not all men are as helpful as your dad,perhaps your dad could have a word with your husband....do they get on well together?
Hope you get good news next week.....in the mean time a big hug for you x

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 9/23/2009 9:10 AM (GMT -6)   
That's too bad of your husband to tell you to just "deal with it"! I'm so sorry you're going through this....you're too young to have to have all of this going on! ((((hugs))))

It's possible that your husband just doesn't understand enough about lupus to realize what you're going through.

Also it may be that he's scared that you have something very seriously wrong with you, so he's going through a "denial" phase, trying to convince himself (and you) that it's nothing. When I first got my wheelchair, my husband seemed angry all the time, and I was very upset with him. But it turned out that he was just worried and angry that I had to have a wheelchair, that I was that sick, and was acting out because of fear.

I hope the doctor is able to tell you that you DON'T have lupus!
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/23/2009 9:48 AM (GMT -6)   
I don't think you are over reacting at all.  The bad thing about these kinds of illnesses is that they are often "invisible" to other people and it's hard for some people to really understand the daily struggles we go through.  Things that healthy people take for granted are a huge struggle for us.  It's not as simple as getting up in the morning, taking a shower, getting dressed, etc.  Just sitting up in the morning and getting your feet on the ground in the morning can be hard to do.
Something you might want to have your husband read is the Spoon Theory and you can find it at http://www.butyoudontlooksick.com  Once you get to the sight, just click on the Spoon Theory on the menu bar to the left of the page.  It is written by a woman who has lupus and she does a great job of explaining what it is like to live with a chronic illness everyday.  I printed out several copies and had my family and close friends read it.  Hopefully it will help your husband to be more understanding.
I hope your rheumatologist appointment goes well.  Hang in there.

dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 9/23/2009 7:23 PM (GMT -6)   
Yes!!! have your husband look at the spoon theory! It should help him realize a little bit of what you are going through. I am sorry you are having a rough time and I hope you get lots of answers at your apt next week. Make sure you make a list of everything that has been happening so you can give it to your rhuemy! Please keep us updated!



Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide,  Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 9/23/2009 10:14 PM (GMT -6)   
Thanks, hippimom2, for the link to the Spoon Theory! It's great!

Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 9/27/2009 9:34 PM (GMT -6)   
They don't get it Lynny. Some people are terminal and family are worried about their fatigue and try to force them up and around, as if exercise will somehow cure them. They get scared is all. Its a form of denial. My ex is like that and so I don't deal with him, especially when I'm sick, which is when I need someone the most. When people see you become more sedentary or visibly and audibly in pain, they don't know what to do and it bothers them. Instead of caring, which involves acceptance, they get nasty, which is denial. What you can try is to explain that your illness is a part of you, unfortunately, and sometimes it gets very bad, and that you need understanding and support during these times, and you need to rest. Explain that you cannot get better if you don't rest and that he must accept your illness in accepting you. If he can only accept you when you are doing well, then perhaps he needs to only be around then, but that doesn't mean that someone else who accepts your illness won't be there to help you, because you need help during these times.

I know it sounds mean, but its reality. I am one though that doesn't expect the world from my guys when I'm sick. My son is wonderful and keeps things clean and everthing going just fine, my ex would just complain and do nothing but make more of a mess and be mean. so he's my ex.

Disability makes strange bedfellows, but maybe a minister or counsellor can help you address this issue with him. To kick you when your down is just abusive and wrong, though it may just be a bad response to genuine hurt and sorrow he feels because you are sick and he doesn't know how to act. Maybe thats the way his family treated him, or he feels that if he lets you give in to the illness that hewill lose you. That if you fall asleep in that chair, you may not wake up, or stay there forever and get weakerand weaker. He may be really scared subconciously.

I hope things work out okay for you. At least he is reacting somehow, though inappropriate. Sometimes spouses can be boneheaded.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 9/28/2009 1:57 AM (GMT -6)   

Would your husband be willing to go to the doctor with you? Maybe the doctor could explain to him that you really are sick. Hold your own Lynny. When I feel tired I don't make excuses nor do I apologize to anyone. I take care of myself regardless of what others think. But I have the support of my family and I hope that somehow you can educate your husband. You deserve better than this. But I will admit that it took a couple of years before my hubby finally really got it. You may have to take him to counseling.

I hope you get the support here that you need. Please let us know how your appointment goes.


SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

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