Author Topic: Just need a soft spot to land  (Read 740 times)

MarieB

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Just need a soft spot to land
« on: June 02, 2019, 01:42:09 PM »
Hello, I've been a member for some time but have not posted for a long time. 
The last year and 1/2 has been bad.  Most days I'm too tired to sit and type.  My house is a disaster and it's depressing.  In my mind I think I'll just do this and that and things will be better but when I get up to do them it's rare I make it out of my recliner. 

I have kind people all around me, but also long time friends that don't get it.  They want me to just wash my face and get moving.  My husband wants me to get up and walk with him.  Nothing I say can make them understand.  One sweet person said if I didn't show up to lunch they were going to come over and kidnap me and make me go.    The stress of just imagining them showing up at my unkempt, dirty house was more than I needed. 

So sorry to be a downer. 
Take care everyone.
Marie 

Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014

irish

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Re: Just need a soft spot to land
« Reply #1 on: June 02, 2019, 01:55:48 PM »
Glad to see you back. I am sorry that you are so miserable. So many of us go through these spells and it does try our patience. Have you asked your doctor about putting you on a mid antidepressant at nite to help you sleep better. If you have less pain and misery and can sleep better life is so much better.

So many of us on on antidepressants and there is not shame in it. Sjogrens has a reputation for causing some depression and inability to get moving just because we are chronically ill. I have gotten to the place that I just have to  make me get moving and some days it doesn't work as well as others. The last 3 years have been miserable and past 1 1/2 years have had chronic anemia with iron infusions about 11 times and one blood transfusion.

Also had a spinal fusion that was almost but not quite emergency. Saw doc on Fri, and surgery the next Thursday. Then one more surgery for 3rd carpal tunnel/ulner decompression. Lots of misery with neuropathy. Soooo With autoimmune it is always something and we have to just try our hardest. There are also some meds that can increase your energy level. I would talk to your doc about antidepressants and something for increased energy. If you could get up and do some things you would be so much happier.We can never count on total relief from pain and discomfort but to be able to get up and enjoy things once in a while makes a huge difference.

Good luck Irish

P.S. My house is always a mess... I can't keep us with it. Don't worry about the house cause people who know you will know that you aren't able to be up cleaning like a little beaver. If anyone complains ignore them cause they aren't worth wasting time with.
« Last Edit: June 03, 2019, 10:47:41 PM by irish »

Carebear

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Re: Just need a soft spot to land
« Reply #2 on: June 03, 2019, 03:45:55 PM »
Marie, you are not a downer.  You are a friend who is suffering,  and you are among people who get it.

I am sorry to hear you have been feeling so miserable for so long.  I know I can't do the things I used to do, and it makes me feel so frustrated.   I think I can do it, then NOPE.   Not today.  Probably not this week or this month either.  So I get it, Marie.

If you can, stay in touch.  It is always so much worse when we lose connections with people.  I hope to hear from you soon.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Carolina

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Re: Just need a soft spot to land
« Reply #3 on: June 04, 2019, 07:40:37 AM »
Dearest Marie:

I read your message on a day when I just CANNOT get moving.  The pain of osteoarthritis just nails me to the bed when I wake up.  Every movement is very painful.  It gets better as the morning proceeds.

I live with Chronic Inflammatory Disease, which is like a constant flare, caused by inflammation.
Anyone with an autoimmune/immune disorder probably has Chronic Inflammatory Disease.

https://www.ncbi.nlm.nih.gov/books/NBK493173/

It is amazing I've lived so long, given the damage that chronic inflammation causes.  Especially to coronary arteries!

Thoughts:

1. Have you tried a Taper pack of prednisone?  Prednisone (and its 'sister' Medrol) suppress the inflammation and take away Pain, Fatigue, and Depression.  Not a cure, but might give you a burst of energy and some relief.

2. Anti-depressants have saved my life.  Most antidepressants both suppress inflammation and ease the depression that goes with it.

3. Mlid exercise in warm water.  Again, one of the best things that I can do to keep me moving.

4. Support from a therapist/counselor.  We must talk with someone who listens without personal reactions.  Of course you will have to find the 'right one' for you, so don't give up if the first counselor turns you off.  I see someone every week.

I'm sure I could think of more.  And my ideas may just seem like preaching and urging, rather than sympathetic understanding.

Believe me I understand and I'm with you in bed today, in a messy apartment!  My husband LOVES messes, apparently.  I walk with a walker and cannot clean and more important organize the stuff. 

Thank goodness 'housekeeping' comes once a week and Claudia vacuums, and cleans the bath and kitchen but really only counters, sinks and floor.  So at least things aren't dirty.

I'm so sorry the people in your life don't 'get it'.  I have an attitude of 'that's YOUR problem, not mine' for those people.  But I've never cared what other people think. 

Ultimately we have to care for ourselves and do what it right for us. 

Easier said than done, for sure.

Sending comforting and caring 'waves' your way.

Love, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Bobbie

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Re: Just need a soft spot to land
« Reply #4 on: June 04, 2019, 04:43:28 PM »
Dear MarieB,

People here understand exactly how you feel.  You should stay on here and check in every day.  It might help to hear that other people's stories.    Bobbie
Graves,Addison's,Sjogren's,Migraines,Restless Leg,Erosive Inflammatory Osteoarthritis,Peripheral Neuropathy,Osteoarthritis,RA, episcleritis
 Plaquenil, Prednisone, Florinef, Synthroid, Restasis, Evoxac,Zofran,Lexapro,Gabapentin,Maxalt,Naproxen,Divaloprex,Omerpazole,Methotrexate,Remicade

MarieB

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Re: Just need a soft spot to land
« Reply #5 on: June 05, 2019, 07:24:55 AM »
Thank you all for the caring and support.  It is appreciated. 
Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014

janny

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Re: Just need a soft spot to land
« Reply #6 on: June 07, 2019, 05:57:44 AM »
Marie, you are most definitely not a downer! That's what this board is supposed to be for. I wish I, too, had some advice to offer you. I also have a few days when I am bedridden now every month. My friends (and most especially my grown daughter and sister) do not understand, and also try to coerce me to go places and do things I'm not up to. I used to go along, but now, thanks to my husband's advice, I stand my ground and just tell them I'm having a bad day, and I let them deal with their emotions. We have to take care of ourselves before we can help anyone else (and this is SO true!). But, I must admit, this has caused a lot of stress in my life that I am just now learning to deal with.

The only thing I will do when I am having a run of bad days is decide I will try to do one thing (i.e. a load of laundry or make a simple meal), and then I feel I've at least accomplished something. Then on the days I feel halfway decent, I run to the grocery store and do errands, etc.

I do agree with everyone about the antidepressants. It is at least worth giving it a try, but I know everyone is different.

You are in my prayers and if you ever want to talk, feel free to PM me.

Deb 27

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Re: Just need a soft spot to land
« Reply #7 on: June 07, 2019, 07:03:05 AM »
Marie, I am sorry you are feeling down these days. Nobody understands like we do here, I have found. Unless you have been through it, you don't fully understand. I hope you will check with your doctor about your fatigue. There might be a reason and they might have something to help. A few here mentioned antidepressants but there are also some vitamin deficiencies that can make you tired. Sometimes a one a day can help.

Take care!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

MarieB

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Re: Just need a soft spot to land
« Reply #8 on: June 12, 2019, 09:56:29 AM »
Thank you again everyone. 
I do take Zoloft for depression, have for about 2 years.  It does help my mental state. 
I've been moving about the house some, but not pushing myself too much which really backfires. 
I like the idea of doing 1 chore when I can.  I feel better about myself.   
 :) :) :)
Marie
Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014

Skylar

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Re: Just need a soft spot to land
« Reply #9 on: June 15, 2019, 04:15:48 PM »
You?re not alone. I hope knowing you have a community helps you feel better.

irish

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Re: Just need a soft spot to land
« Reply #10 on: June 15, 2019, 11:29:27 PM »
Marie, I see you have a positive anti striated DNA. Did they decide you have lupus also along with the Sjogrens.
I have been thinking about you and wondering if you are in a prolonged flare or decline in your condition that may need extra meds at this time. When we feel lousy we also have an decrease in our energy levels and feel like just vegetating. It is hard but getting up and out of the house does help.

Also, with both sjogrens and lupus depression and anxiety are p[art of the symptoms and sometimes we need out medication adjusted. We are just high maintenance people aren't we. I live in a coop and get so cooped up lately but yet have too much pain to do a lot of walking lately (again). I usually end up getting in the car and going for a drive around the lake or go sit in a park parking lot and read, etc. Get a McDonalds cone, etc. Just some little thing to see people and get some fresh air.

I also see people at the coop but I still get cooped up!!!!!! I also find that it helps to go to the library when I can and read the papers and magazines. Sometimes I run into people I know and other times I strike up a whispered conversation with some lady I don't know. It is so hard to have regular schedules of activities when we have so many migrating aches and pains and who knows what.

Just keep on keeping on. I find that it helps to have certain schedule of TV shows to watch. I am hooked on A & E Live PD now. It is on quite often and is really interesting. Keep on keeping on girl. Good luck. Irish

Gorn

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Re: Just need a soft spot to land
« Reply #11 on: June 29, 2019, 04:51:13 PM »
Marie you are not being a downer!

As I read your post, I am here staying home from a party my neighbors invited me to, and feeling rather sorry for myself.

Parties take energy for me normally - and today everything hurts and I am very tired.  You would think I could just walk over there and say hello.
I showered and took painkillers, meaning to do just that. I tell myself "It's ok, you don't need to stay long."

And I just ... can't. 

It's hard, because if you decline invitations all the time, you eventually stop getting them.
My friends are very nice to me, and mostly understanding, but I hear less from them these days. 

Wish I could offer more than sympathy and empathy.
Be kind to yourself. 

MarieB

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Re: Just need a soft spot to land
« Reply #12 on: July 13, 2019, 09:35:55 PM »
Thanks so much everyone!  It means a lot to hear from you all. 

Irish, my rheumatologist thinks I have primary Sjogrens.  I've wondered too if the Lupus is active.  I'll check with him on my next visit which is soon. 

Again, everyone, thank you for the support!

Marie
Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014