Loved ones of those with rheumatic diseases

[anewday]

This may seem like a really dumb question, as I know it varies with the individual, but can you share with me, as one who is living with and fighting a maddening disease, how best your loved ones can encourage and help you?

And while your at it, what they do or say that is NOT helpful when they think it is?

My husband is fighting depression – I can sense it, and he is a very even keeled man. I know he's not hopeless, but this takes it's toll, as you well know, and it's hard to know what each day will bring. I'm fighting the discouragement and fears too, and on some level I think we both want to be strong for one another….

In light of that, I need and want to support him 100 percent.

Practical advice eagerly welcomed…

Thanks!

[Suzanne]

I'm a mom, not a spouse, but my experience is that it gets easier.  A little less scary as time goes on.  Enjoy the good days.  There will be more.  Take care.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Goodwife]

Hi,

This is the way I handled my hubby's dx of SD.  It may not be “right” but it was what I did.  He is always an optimist – the most happy go lucky person I know.  When this hit and the words “can't cure it, can't stop progression, etc.” from a rheumy, my hubby became full of anxiety and depression.  I had to force myself to be the strong one, when it was always the other way around.  I read everything I could, did not let him read the horrible depressing news and statistics, but I shared the positive things I read once we found this site.  I tried to keep positive when around him.  I turned to my family and friends to cry, yell,  and be depressed and anxious with because I didn't want him to be burdened with my feelings, when he couldn't even deal with his own.  At this point in time, after being on AP 17 months,  his health (mental and physical) are SOOOOOOOOO much better – almost everything bsck to normal.  A couple of months ago, we talked about everything as it has transpired from dx in Aug 2006 to present, and I told him that for the most part, I shielded my feelings  of fear, anxiety, etc. from him to make it easier on him.  He told me that he was sorry I had to do that, but he was glad I did – because he would have felt worse if he had known how scared, etc. I was.  He did know that I was not sleeping well, or eating well, but he didn't know the extent of my feelings.  I felt it was something I had to do and I would do it again.  Some people may say this isn't a good way to handle things, but it was for me.  Good luck to you and your husband

[A Friend]

ANewDay,

Am rushing, but wanted to share this with you.  If your husband is not taking a good liquid or sub-lingual multiple B vitamin complex, it has been highly recommended in our illnesses.  Our good flora takes a beating in these illnesses and their treatment, and our flora often cannot make enough B vitamins when we are ill and on abx.

Thorne Research has a Monograph that helped me learn about the outstanding benefits for numerous diagnoses, and an inability/deficiency relating to niacinamide was said to even be a cause of more severe mental functioning (other family members have benefited when I shared this).  The Niacinamide product (based on further research I did and trying the taking of two products two ways) which was very helpful within about 7 days or less was Solaray Niacinamide, 500 mg capsules, taken once daily (do not accept one that has “niacin” as the name or the ingredient, as they are not the same thing)  — I took it with my Multiple Vit & Min OR with a B-Complex.  I still do.  The trigger for my using this was because of the Monograph (link just below) in which I saw diagnoses which it is helpful for, that were diagnoses of some of my ancestors.  So, B vitamins being so necessary, I decided to add Niacinamide to my daily pills, and what a delightful, quick, mentally uplifting result.   

http://www.thorne.com/media/niacinamide_mono7-6.pdf

Blessings of good health,

AF

[whaleharbor]

I've had RA for a long time about 17 years and was diagnosed and at my worst when I was dating my (now) husband.  He's been a blessing to me for many reasons but mostly because he never felt sorry for me, has always believed in my well-being, and has been very matter-of-fact about certain things (ie all of the door knobs in our house are the lever kind so I can use them).

I'm a better healthier person because he has never felt sorry for me but has just dealt with things.  I'm not normal and that's obvious but he has always treated me as normal even though there are things that I do differently from other people (ie I have an electric jar opener…can't open jars anymore).

The thing about RA and other chronic diseases is that at times it makes you feel broken, less whole, damaged goods, etc…There have been times that I thought he would have been better off without me.  I've even told him that he has gotten angry with me for saying so and has assured me that I'm the only one for him abilities/disabilities and all.  The chronic pain is exhausting…and at times severe…I've thrown-up because of the pain.  It's a lonely road even if we are lucky enough to have people who love us.

I guess the best thing I can tell you is to love him no matter what.  Love him when he's depressed, love him when he's well, love him when he is in pain, love him when he's not.  Don't feel sorry for him because that doesn't help and likely will hurt anyone's ego (let alone the male ego – – sorry fellas).  Make sure he still feels like you find him attractive…deformed joints and all.  Just love him because he's still the same man you married.  Inside he's not changed.

The mere fact that you are asking this lets me believe that you are obviously doing the right thing.

Finally and most importantly, pray.  There is hope and you are not alone.

–whaleharbor

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Loria Chaddon]

My husband has MCTD.  We were married at the end of August of last year.  At the time he only had some hand stiffness that he thought was because he had overstrained them on a leatherworking project.  He was diagnosed with RA in mid-October and MCTD in February this year.  He often feels as though I got the short end of the stick by marrying him, and this is what I do:

I cuddle him when he is feeling down.  He is a cuddler and it helps to cheer him up so much.  (On a biological note, cuddling releases soothing and pain-killing hormones.)  I hold him when he needs to cry.  I encourage him, firmly and calmly, to slow his breathing when he starts to hyperventilate when the pain and muscle cramps crescendo beyond his pain tolerance (which is actually considerable).  When he wonders why I want to stay with him or what good he is, I let him know in no uncertain (but very loving and sometimes funny) terms just why I love him and am glad I am with him.  If he calls himself useless I put my hands on my hips and call myself fat (HE HATES THAT :roll-laugh:, he makes the funniest face).  When he won't look at me because he feels like he has let me down I turn his face to me and make him look at me and I look back with all the love I can.  I research everything I can, and I tell him what I find, the good and the bad and we deal with it together.  We discuss and have planned for both the worst case scenario and the best.  I tease and flirt with him to remind him on a daily basis that I still find him attractive (even though he has lost so much muscle mass and moves like an old man).  When he needs help I am there, and I do my best not to hover when he wants to do something on his own that is difficult for him.  I am at times infinitely patient, and at others as demanding as a drill sergeant (well maybe not that bad :P), whichever is called for at that moment.  I don't let him wallow in self-pity, just as he did not when I had my accident last year.  I am there for him and love him.  And I remind him often that when all is said and done, he is the only person I want and I cannot imagine my life without him, so he DURN well better stick around.

I don't know if that helps, but it is how I handle it. 🙂

[anewday]

Oh these replies are bringing me to tears! They are beautiful! So much I can glean from and apply!!!

Finally and most importantly, pray. There is hope and you are not alone.

Thank you for that reminder! 😀

[Eggs]

Well I am the one with illness(I hate saying that) but my mom has been amazing. I was diagnosed when I was 16 and I am 21 now and shes been there always pushing me and telling me i need to fight. its easy to fall in moments of self pity and just crying fits but my mom was always there reminding me of my faith and not to look at the circumstances but rather my God. I know this has been one of the hardest things shes ever dealt with but my mom's strength is something i always strive for. the fact that shes there telling me to push a little more and fight makes me want to show her i can. but also the times ive felt awful, shes there to comfort me and try to help ease my pain. really, my whole family has been amazing…each member helps me in different ways from making me feel a little special(my dad suprises me with flowers sometimes) to making me at least try to open my own water bottle before they'll do it for me(my little brother) even my big brother comes by and just sits with me and talks about everything from penguins flying to our strong belief that God is there with us and we are going to get through this.

I guess what I am really saying is family just being there and knowing that they are praying for me is all a great comfort and knowing how much they love me makes me want to recover that much faster.

all the best
-eggs

[linda]

In ch. 16 of H. SCammell's book, Dr. Brown talks about spouses of people with arthritis. He states that there are 2 kinds od spouses; one is supportive and willing to help with anything, but knows when to give their spouse space when they are feeling really down instead of thrying to cheer them up. They take advantage of good days and understand the bad days and the spontaneity of the depression. The other is constantly fighting the disease, (c'mon, if you just go outside you'll feel better, etc), which Dr. Brown says is a form of denial. These spouses don't understand that depression is a symptom of the disease and can't just be “willed” away. In fact, it will probably worsen as he goes thru herxes, and is a useful guide to the remission process. As the joint pain and fatigue decrease, his mood will improve.

One of the most frustrating things is not being able to plan to go to social functions, movies, ets, because you don't know from one day to the next, sometimes one hour to the next, how you're going to feel. It can bring on strong feelings of guilt, even when your spouse is understanding. It's a fine line you have to walk as the spouse, I don't envy you and truly believe it is just as painful and exhausting for you as it is the person who is ill. There are some good support groups for families that you might consider.

One other thing that is very important, IMO, is that you need to let him do whatever he can to feel useful-feeling purposeless is another big issue and wreaks havoc on our self-esteem. Drop little hints around b-days or other special days about things he can do- maybe bake (or buy) a cake, rent your favorite movie, or things like helping children with homework, if you have children. There are lots of things that he may consider inconsequential (after all, he is still a guy, and to my knowledge there are no treatments to cure that!-just kiddin, guys) , like listening to you when you've had a bad day, or surprising you with a quick dinner. Let him know how much those little things help you; feeling like you are still needed is so important.

Add a lot of love and a very healthy sense of humor. The fact that you're asking is great, it's not going to be an easy road, but the 2 of you will make it.

[klogan]

Bless you, that's what I have to say first off.

My spouse is with me 100%, often whether I like it or not. I'm in the early stages of adjusting to a worsening condition, so I have been moody, depressed, despairning, and REALLY cranky at times as I work my way into the idea of being ill and coping with that and still living.

The best thing he has done is just be there through all of that and STILL be there the next day when I am finally able to get a grip and start over. He just starts over with me, doesn't hold a grudge. I am truly humbled and wonder if I could do as well. I think I would find it hard to flex with this many mood swings in one person – despair to hope to rage to joy etc.. He does not seem to resent this, but if he does he is telling someone else.

I try to do anything I can to let him know how much I appreciate him and his support, often just by saying so.

Best wishes to you and yours!

[Jo]

[Michele]

So many of the answers above are very touching. I know my hubby bears a lot more responsibility when I am unable to participate in daily activities. He's so supportive and holds the whole family together. His help is indispensable!!!

On practical note, chronic disease like RA HAS depression as a true symptom. It can be a chemical response and no amount of love and cheering of loved ones can make that kind of depression feel better. At times, when my boys tried so hard to “cheer” me up it made me feel worse…just because my feelings wouldn't “go there” with them and I wanted them too!!! Two things have helped me…getting a protocol that gives me hope for the future and a prescription for chronic pain that a chronic pain specialist suggested for RA was a medicine called Elavil. It is listed for a multitude of conditions from bed-wetting in kids, to chronic pain in RA and for depression! Having only two of those three symptoms…I gave up bed wetting quite a few years ago… :roll-laugh: I do find that has been helpful for depression. I still get freaked out with doubts…especially on a day like today when I feel like crap and don't know if it's herxing or just disease flare…but I do feel a helpful difference in mood with that medicine and am grateful. If I didn't try it for chronic pain…I wouldn't have tried it so it really was a blessing in disguise for me.

Michele

[A Friend]

[user=50]Michele[/user] wrote:

On practical note, chronic disease like RA HAS depression as a true symptom. It can be a chemical response and no amount of love and cheering of loved ones can make that kind of depression feel better. At times, when my boys tried so hard to “cheer” me up it made me feel worse…just because my feelings wouldn't “go there” with them and I wanted them too!!! Two things have helped me…getting a protocol that gives me hope for the future and a prescription for chronic pain that a chronic pain specialist suggested for RA was a medicine called Elavil…………..

Michele,

By now I could probably fill a book with posts on everything magnesium can do.  When I read your post above, the first thing that popped into my mind… after wanting you to feel well and be able to enjoy your boys and husband … was to remember an e-mail I put together on anxiety and depression, and magnesium's role in neurotransmitters and our mental wellbeing. 

These are some links that I'm hoping may be helpful to you …. and others.  It has been for me, and especially for severe chronic pain that came on a number of years after being painfree for 7 years after beginning AP.

http://www.pbraunmd.org/magnesiu.htm
Dr. Patricia Braun's research in putting this paper together has been very helpful to me.  I remembered it when I read your post. 
[click “File; then “Print Preview“; then especially read pages 3,4,5,6….but all of it is excellent to read]
Note:  If you are deficient in magnesium, blood drawn for a lab test is not an accurate test for magnesium deficiency, because the body is made so that even if the blood does not have enough minerals to keep the blood at a certain NECESSARY pH, it will “borrow” minerals to artificially make the blood pH-balanced into the very narrow range that it needs to be to sustain life.
 
Once I learned about the above, I was reading in one of Dr. Sherry Rogers books and saw her reference to Pain and Stress Center in San Antonio, Tx as a good place to order liquid magnesium.  I was going to try it, before advancing to IV magnesium.  When I called the 800 number, a health counselor asked me if I was aware of a new product that Dr. Billie Sayle (sp?) had developed that was the equivalent to magnesium IV's.  I wasn't, but I ordered a bottle to try.  She said she took it herself, and used a dropper full to 4 ounces of orange juice.  That's what I've been doing, though I usually don't drink fruit juices. 
 
I believe that adequate magnesium can help your depression and pain. 
 
I also believe with depression issues that we can greatly benefit from taking sublingual B-Complex Vitamins.  B vitamins are vital for our mental well-being, are usually manufactured by our gut flora when we are healthy, and they've not been compromised or wiped out.   
 
The web sites below also reinforce that magnesium deficiency can cause depression/anxiety-type symptoms.  I also read that taking calcium supplements along with the magnesium can cancel out the benefits of the mag. 
 
http://www.mgwater.com/articles.shtml#depression
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
  
http://www.thorne.com/media/myers_cocktail.pdf
[See heading of “Depression” on page 7]
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
http://george-eby-research.com/html/depression-anxiety.html
 
http://george-eby-research.com/html/magnesium-depression-review.mht
 

[suera]

I am glad that all of you who have such supportive spouses are appreciative and grateful as that support could easily be taken for granted and it doesn't necessarily work out like that for everyone. 

Anyone who takes the time to ask these questions undoubtedly will be a great show of strength and support to their chronically ill loved one.

Sue

[Michele]

A Friend,

Thanks for posting this…I'm going to go drink some “Natural Calm” which is a magnesium drink my Mom sent to me.

I didn't realize all of the connections related to magnesium deficiency…and these sources of information show that antibiotics can further deplete magnesium.

Michele

[Author]

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