[Smiley22]

Hiya

I decided to join today after reading posts on the forum for help. My mum is a lupus sufferer and although i have read alot about it tried to understand it, i feel like i don't know what i can do to help her.

Our relationship seems to be stained she is depressed and very sensitive and anything i may say to her about resting, looking after herself, not thinking too much about what others think - i feel it's falling on deaf ears!!

Is there anyone that can give me some tips on how to speak to her without upsetting her or she thinking i'm not respecting her, i feel ike i'm treading on egg shells in order to not upset her by speaking my mind to ease her sickness and how she is feeling! :sad:

 

[KarolH]

Hi Smiley and welcome to the board.

I think it is great that you want to understand more about Lupus to help your mother along. She is lucky to have such a great daughter.

It is hard to understand Lupus when you do not deal with it daily but this board provides so much information for those of us who have Lupus or those of you who want to learn more about how Lupus effects us.

As for how to speak to your mother without offending her, that is a tough call. Is she dealing with depression and if so, does she take medicine for it? Having this disease and dealing with chronic pain daily can wear you out.

Read the information here on this site, learn all you can and by gaining knowledge of the disease you may find tips on how to help your mom in other ways.

Nice to meet you and hope to get to know you better.:wink2:

 

[Sleepless Sue]

Good Morning!

I'd venture a guess, that right now there's nothing you're going to say that will help either of you. Sounds like you want to help, but she doesn't want the help. My suggestion would be to simply be there for her. Sometimes, some of us just need to crawl out of "the hole of depression" by ourselves. This may sound odd since she's "the mom" & you're her "child", but you may want to try to turn things around simply by setting a positive example. It may be a long, hard road uphill but I'm a firm believer that a positive attitude will eventually overtake a negative one. This is a very complicated disease that comes with not only physical problems, but also ocassionally emotional & psychological ones, too. You may want to try things to get her mind off of "stuff". Take her out to a cafe, play games if you guys are into that, window shop or just a simple walk out in the fresh air. Most of us are recommended to try to exercise. I take that to mean not just our bods, but our minds, too! She may also have foods that are tormenting her. I discovered that I can't eat yogurt!! It flares up the lupus for me & makes me hurt really bad. And, I CRAVED IT!! Look at the foods she's eating. Maybe something there, is making things worse for her. It may also help if when you need to talk about it, you may want to try approaching it with terms like, "WE need to talk..." or "Maybe WE should..."! Sometimes, for some of us, feeling like we're not alone in this fight really helps. We tend to forget there are others around us that are in this, too!!
I hope something I said helps you and her. Be patient. Be loving and try to be as understanding & compassionate as possible. Maybe right now for you, writing on this message board will help you and her!!

Chin Up, Smile & Enjoy Today!
Sue

 

[Pink Pearl]

Hi Smiley,
While she may not realize it, your mom has a pretty terrific daughter who cares enough to try to help. Hopefully she will realize this sooner than later.

If you are in the US, you may want to check out the LFA website...www.lupus.org. You will find a lot of good basic info there. There are lupus groups in most of the states and they usually have support groups. You do not need to have lupus to go to one of the support groups. They are open to anyone who has an interest in lupus. You may also find others there who are able to help guide you in getting help for your mom.

Another info source is the NIAMS, National Institute of Arthritis and Musculoskeltal and Skin Diseases: www.nih.gov/niams This is a division of the National Institute of Health. They have some of the best literature for general explanation available. Literature from NIH is free to those in the USA. I really like their booklet on "How To Find Medical Information" booklet.

I'm not sure where to go for info on other countries, but I am sure that with all the people who come on this board someone would be able to tell you where to get info and support groups.

You don't say how long your mom has been dealing with the diagnosis of lupus. For those new to lupus it can be a hard realization that the life as they knew it has changed.

Offer to go to her doctor appts with her. She may be overwhelmed with all the information she is being told. You may be able to help her by writing down info so she can go over it later. A small recording device may help her as well. Having a journal where she can write down what is happening with her health may help her to be able to explain it to her doctor, or take it with her to the appt so she and her doctor can go over it together.

Hopefully she soon will be able to make sense of what is happening. She is a lucky person to have a daughter who cares.
Sally

 

[Smiley22]

Hi All

Thanks so much for your kind words...................

I know Lupus is a hard thing to live with as some days you don't know how you'll be feeling, i think it's very difficult for families to be supportive......

My mum is on medication for her depression, which make her very drowsy ( she has had many differnt types due to other side effects) and has a lot of tablets to take to deal with her joints aching, the tiredness, shivers, she does work hard and carries on with her normal life.........which i admire very much.

I do however live 2 hours away from her (I'm in th UK) and have my own family so this makes it difficult to be away even if i go up for weekends and spend as much time as possible, we do go out for lunch etc but i feel sometimes she is very lonely and there isn't much i can do but phone her as often as possible........

Recently she seems to forget alot and i'm not sure if this is realted to lupus but with things being a bit strained i'm worried by saying to her to go see her GP although i did suggest she keeps a diary......

Thanks for the tips about yoghurt i may mention that to my dad so he can keep an eye out.

Regards
Smiley

 

[Pink Pearl]

Hi Smiley,
The bouts of forgetfulness you describe can be a lupus flare. I had one a couple years ago where my brain was NOT connected to my memory. I put all my appointments on a calendar. Usually, I see an appt, make my daily schedule accordingly. Well.....when I had the brain flare, I would look at the calendar, think that's nice, I have an appt with ______. It did not occur to me that I needed to BE at that appointment! Reminder calls did help me to remember to get to appointments. It was a scary thing for the couple months it lasted. I had a hard time completing a sentence.....would lose my thought process 1/2 way thru the sentence. Eventually it worked out, and I got back to "normal" whatever that means.

You can go to the US web sites, even out of the country. You may not be able to get the hard copies mailed, but you can still check the online stuff.

You have your hands full. If your mom won't call her doctor, and she is single, perhaps you can call the doctor and let know about your concerns.

If your mom doesn't pick up a journal, perhaps you could pick up a nice one at a stationary store. If she doesn't want to share with her doctor, she can still use it for herself. I have found that when I would write down the day's happenings, it helped me to not have to deal with remembering everything. Once it was on paper, I could let go of it. Does your mom have any hobbies? I found it peaceful to do handwork. I could focus on it on days I could not do much else.

If your mom is not able to handle routine household upkeeping, perhaps a housekeeper to come in once or twice a month would help her. Grocery stores which deliver are a great thing too. Here, our transit service has a special program where they will do door to door pickup and dropoff for disabled and handicapped. Perhaps her area has one like this as well.

You are a good daughter. On the days it is not easy to remember it, know you are doing the best you can. That is all anyone can ask.
Sally

 

[LolaLola]

Smiley,

You have a lot to do having your own family and living quite some way from your Mum.

One thing which MAY appeal to her, have you heard of the Expert Patient Plan? She could access this through her Doctor. It is a fairly informal course designed to make being chronically ill easier. People have a variety of conditions, and she would get some companionship. Not everyone likes these sort of things but you could at least tell her it is an option.
x Lola