Author Topic: Family not much support  (Read 23482 times)

louise

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Family not much support
« on: January 17, 2010, 07:17:23 AM »
Hi, my name is Louise I found out I have SS about 6 months ago. I have very dry eyes ,extremely dry mouth and plenty of muscle pain and nerve problems. For years I have had one thing after another wrong with me. Until one morning I woke up with my patriot gland swollen the size of a grapefruit I had very little answers. Even after going to the doctors with this I still got no answers or good reason from my doctor.I searched for causes and ask doctor to test me for SS.Everything finally fit. I tried Plaquenil for a while but it made my leg muscles worse. I am in constant pain and deal with daily depression.My family doesn"t seem to understand I get the feeling they think this is just another complaint.That they feel I always am sick or in pain.I try to talk with them about SS and they show no interest at all. This hurts so bad. My husband excuse for the cold shoulder is I shouldn't dwell on it. But how can I not when it is with me 24/7? Waking me up with pain or dryness. I'm real scared of not being  able too work much longer I'm a hair stylist I stand all day .I really feel this is causing me most of my leg and arm troubles but can't afford to quit working. I also don't want to give this part of my life up. I need to talk about these things and have no one in my life who doesn't seem indifferent  to what I have to say. Has anyone else gotten this type of reaction from family?
primary sjogrens, adderall xr, diclofenac ,vitamin d3, percocet, b12,b6, omega3, ibuprofen, protonix, voltaren gel, lots of sugarless gum and candy.

Joe S.

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Re: Family not much support
« Reply #1 on: January 17, 2010, 07:52:08 AM »
If things are in remission, or you find a method of pain management that works for you, you will still be able to work, only if it is part time. I do.

I suggest that you and your closest family read "spoon theory". Remember that they have no idea what you are going through and often feel helpless and frustrated about your situation.

Research western medicine and alternative medicine. Find what works for you. There are many suggestions that you will find in the archives of this forum.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
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ruby52

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Re: Family not much support
« Reply #2 on: January 17, 2010, 08:12:21 AM »
I'm sorry you have to suffer with this and glad you found us.I'm fortunate to have a supportive family but that being said they still can't know what I'm going through with this weird complicated set of symptoms.

It's nice to come here and ask questions or vent among people who know just what your going through.The Spoon Theory is very good to start with.

I hope you can find some relief from the pain.Sounds like your just starting on your journey.
                                                             Ruby

louise

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Re: Family not much support
« Reply #3 on: January 17, 2010, 08:45:37 AM »
Thanks for listening I appreciate  the suggestion and will check out the book.
primary sjogrens, adderall xr, diclofenac ,vitamin d3, percocet, b12,b6, omega3, ibuprofen, protonix, voltaren gel, lots of sugarless gum and candy.

Epson

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Re: Family not much support
« Reply #4 on: January 17, 2010, 09:03:53 AM »
If you want an understanding family member, non judgemental with unconditional love, get a dog.

Chickpea

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Re: Family not much support
« Reply #5 on: January 17, 2010, 11:00:08 AM »
Hi Louise

Welcome to SjS World!  I'm sorry to hear that you're so unwell and that it's made so much more difficult by your family's attitude.  In my experience it takes different people very different times to adjust to something like SjS, and that includes both the people with it and their loved ones.  Some people liken it to the grieving process, with times of disbelief as well as anger.  Maybe your family can't face the idea of you being so ill?  Or maybe they're just used to you being 'super mum', working and taking care of them, and they don't want that to change?

As with many others here, I've found SjS World really helpful in this regard.  My family know how much the web site means to me.  I think it's helped them see that my problems are not unique to me, but that there's a world of people in the same situation.  Some people encourage their families to read messages too so that they can see for themselves.  Maybe that would work for your family?

Sorry to hear that Plaquenil didn't work for you.  How long did you try it for?  It takes most of us around 6 months to feel the full benefits of it, and quite a time to adjust to it.  Has your doctor had any good ideas about pain relief options?  You're entitled to ask for his/her support and the best advice you can get.  Lots of us here have experience with different types of pain relief for muscle, joint and neurological pain so do ask for ideas and suggestions.  The same applies to depression - people here will be happy to tell you their experiences and what's helped them.  All you need to do is ask!

Take care - Chickpea

louisa

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Re: Family not much support
« Reply #6 on: January 17, 2010, 01:51:18 PM »
Hello Louise
I really feel for you. Before i married my nice husband i had an awful boyfriend who when i started to get really sick, told his and my family and friends that i was being negative and that positive thought would simply banish my "imaginary" symptoms! At first unbelivably a lot of people went with this theory until i collapsed, lost 3 stone and looked like there was indeed something wrong with me. Even those around you who love you just somethimes do not understand how out of control you can feel with symptoms that go on from one month to the next and when you get negative results they say "see". You know you are ill and instead of wasting your time constantly explaining that to them try to put what energy you do have into finding a good GP or Rheumy. IF people start to demand stuff that is unreasonable do by all means just say "i am sorry you cannot understand, i am doing everything i can and at the moment i am using everything i have dealing with this pain and discomfort" and then walk away and either log on here or do something that makes you feel a little better.My eyes are severely dry and i am now in my fourth month of this with no let up and it is my second attack so i know how the constant discomfort truly can rule you.
Have faith that things can get better and congratulate yourself for staying in your job as long as you have done.
Hopefully your family will eventually understand, my Mum now actually asks me how i am!!! (i dumped the boyfriend when i got the strength, best thing i ever did!!!) And yes i think it is a good idea if your husband could take a peek at this site, people often dont mean to be dismissive but if it has not happened to them they tend to spout all sorts of things before thinking about what really could be going on.
Louisa x

lynnmarie219

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Re: Family not much support
« Reply #7 on: January 17, 2010, 03:18:55 PM »
Hi Louise,

You have come to the right place when you came to Sjogrens World! The others are right...many times our friends and family don't understand....maybe its because they cant see how ill we feel because of the invisible symptoms...maybe they are fearful of things they don't understand and haven't heard of sjogrens before...maybe they are fearful of their loved ones being ill at all...maybe its one of many other reasons...who knows???

The important thing is that you are not alone in others not understanding sjogrens...and you can come here anytime and be understood...this is a safe and comforting place where you can ask questions....find support...vent ...laugh or cry with people who really do get it and don't judge you and that is a wonderful thing...at least I think so!

I have been there and still continue to be there with some people who "don't get it". I don't waste my time on them anymore trying to explain myself..it takes too much of my energy and I don't have extra to spare on people who aren't going to be supportive anyhow.

Hang in there and know that you are part of this family now and can here whenever you want or need to....we are here for you!



susanep

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Re: Family not much support
« Reply #8 on: January 17, 2010, 06:49:09 PM »
Epson-I agree

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

harlin

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Re: Family not much support
« Reply #9 on: January 18, 2010, 11:39:27 AM »
Hi Louise
I certainly know where you are coming from. NO ONE UNDERSTANDS!! My dog maybe. But family just don't get it. My husband is trying but my adult kids no way. I watched my 2 gkids last week 2 days in a row and was told by my daughter "it is good for me" What to die of exhaustion???????

I slept about all weekend. this week I am watching them Tues and Fri. Spacing it out.
I don't know how to tell you that they probably are never going to understand. I sent her "Spoon therapy" but nothing!

I enjoy being on here so much I am probably driving everyone bonkers but you see they at least understand :D

harlin

Epson

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Re: Family not much support
« Reply #10 on: January 18, 2010, 10:18:09 PM »
I think it is real important that your spouse understands your situation, everyone else can jump off a pier.  My wife knows me well enough to know when there is something wrong.  You don't go from a workaholic to a vegetable for no reason at all or get lazy over night or become a vampire who can't be out in the sun without something being medically askew.  You don't know what it's like to be in someone else's shoes until you have walked a mile in them and lets face it, we have all been guilty of that, it's just human nature.

Joe S.

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Re: Family not much support
« Reply #11 on: January 19, 2010, 07:20:43 AM »
"Spoon Theory" is not a book. Here is the link: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I first read it as a post in a forum. It was much shorter than it is now.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

louise

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Re: Family not much support
« Reply #12 on: January 19, 2010, 07:18:57 PM »
Thanks everyone for your nice post. Harlin I sure can relate too you. My daughter in law just ask me to watch her 2 kids so on Mondays ,she knew my son couldn't change his schedule .  She just started a new job and only works 2 days a week. She can pretty much set her own hours but doesn't want too mess up their week end. Well I'm off Sunday and Monday that's my week end. Last night We had them from 3:00 p.m. until 11:30 p.m. .I thought maybe 6-7  not gona have this happen again.   Things are better with my husband after getting so upset and mad  I said I was ready to file for divorce. I think him and my 4 grown kids are just use to me always doing everything.I am a person who just keeps going . Lately I just can't and they just don't get it.
primary sjogrens, adderall xr, diclofenac ,vitamin d3, percocet, b12,b6, omega3, ibuprofen, protonix, voltaren gel, lots of sugarless gum and candy.

harlin

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Re: Family not much support
« Reply #13 on: January 20, 2010, 12:14:55 PM »
louise
I just don't get why they just don't get it??? I am glad your husb and is doing better tho. Can't they see what is going on??

When you lose over 30 lbs in less than 3 months you'd think they'd get it. I now weigh a woppen 122. Haven't weighed that since before kids. Size 4 and to big. Most people would bragg about this but I am beginning to look like a skeleton. My eyes are sunken in and I need some sun!!!! Enough of winter already. Bring on the sun!! We would all feel better.

hugs harlin


dso618

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Re: Family not much support
« Reply #14 on: January 31, 2010, 04:28:23 PM »
I actually had a family member say "Well now that you know you have this do you think its psychological?  Maybe in your mind you're exaggerating some of your symptoms cause you know you have an illness."  I was pretty offended although I know they didn't mean to hurt my feelings.  Its nice to converse with people who can relate, for sure.