Hi to all, I just lost my post when i pressed the preview button so i'll try to rewrite. I've been increasingly isolated over the last few years because of lupus symptoms. I'm still working full time and not missing too much since starting methotrexate last year, but i don't do much else. The weekends go as follows. I come home a little early on friday, completely exhausted, kind of like a zombie (i've been watching the walking dead lately). go to bed by about 8 or 9. On Saturdays, i rest until about 12. i'm able to do a couple of hours of shopping for groceries and/or light housework. take 1/12 hour nap or rest lying down so i can stay up a little later, go to bed no later than 10. I take methotrexate on saturday night so sundays are rough. I've been trying to get to church on sunday mornings, even to help with the coffee after services. it helps me to feel more normal. then, i go home to rest, take another 1 and 1/2 hour bedrest, then end up going to bed about 6 on sundays. i'm not going to sleep then, but lying down , reading. It's not depression but exhaustion. If i gear up for an outing or activity on the weekend, it's takes a huge effort and i have the payback for a couple of weeks afterward--if it was a big activity. it's a weird existence. My family understands but i think my friends don't. I really don't call anyone and rarely go to social activities. I've accepted my illness so as i said, i don't feel depressed, just try to live my life as best I can. My heart goes out to younger people suffering from this illness. I'm 63 now and was in good health before my lupus diagnosis.
I totally understand. Most of my days consist of resting quite a bit so that I can do some things during the day. I rest, then do a little then rest again…I feel like I’m being lazy but I know that if I don’t pace myself then I will pay dearly for it. This disease is very lonely. I don’t reach out often to others and I don’t think many people understand. That’s what is so great about us supporting each other…for us to know we aren’t alone. Prayers for you!
Your routine sounds just like mine before I could no longer work.
I wish that the days that I couldn't sleep with small naps during the day and night was back--almost. I could go places once in a while.
In last two years I've developed extreme pain in both legs caused by nerve compression from L1-S2. Couldn't stand it any more and psychiatrist gave me effexor. However, now I sleep a lot, 8-12 hours per day. All this pain is from lupus, Sjogren's and fibro. Ugh. Well the pill is doing fine-even better than narcotics (that make me sleep even more) but I'm sooo sleeeepy any way.
"What social life!?" Friends call and inquire sometimes. Been invited to a wedding in Philadelphia in March. Long distance travel is a drain.
I have my dog and three close friends. Maybe after awhile I won't feel so sleepy from the effexor when I get used to it. Here's hoping for more waking hours. I truly understand how draining autoimmune diseases are.
Thanks for your support USA and Chicken, this weekend I developed flare symptoms, in bed all day yesterday and no work today. I started prednisone this am. The only time I feel close to normal is when i've been on prednisone for a few days. Wish i could take it all the time. I still try to think of ways of staying more in touch socially but I think that while i'm still working it will be difficult. I've been thinking of long term disability. i've been paying the insurance for 40 years but i have no idea how difficult it is to receive. it would cover 60% of my salary. I have my 17yo daughter and husband at home , thank God, and my dog , cat also help with the loneliness. Please take care
I feel lazy too....I worked -my own company, managed my properties,and my house was always clean and kids great too.
Now--whatever. The fatigue is amazing; Add a crainiotomy for an anueyrsm and stroke, I spent my time learning to read again, remember things and try to get somewhere near my old self. (Spelling sucks). The trick for me is what's causing what?
I've had ANA since 1981 and it comes and goes-usually when I had time to feel sick. It doesn't work that way now.
I haven't had any special medicine but I'm restless and tired at the same time. Oi. Everywhere I walk I see a project that I want done but don't do. Eh, I had so much energy, now none but I like to think that I'm making up for all the times that I was too busy to relax.
Also, I like short conversations-10 - 20 minutes is plenty.
I was diagnosed in 2012 with Sjorgren's/Lupus and was started on the plaquinil and blood pressure meds. and meds for the
muscular and joint pain. I have had a AAA open repair surgery last Sept. 21, 2015 and am recovering at present. I went for
a c.t. scan a month ago to check for aortic bleeding and thank God there isn't any at present, but they found that I came in
contact with Hepatitis C at the time of my surgery due to a necessary blood transfusion. I am now going for further tests for
the Hepatitis C to make certain that I have it and if so then to start treatment for it. I did not mean to go on about myself but I said all of this to speak to your comment about the constant exhaustion. Having gone (or going) through all of this I still
find that dealing with the constant exhaustion/tiredness to be the most difficult symptom to deal with on a daily basis. I
still have not found or heard of a tried and true method of negating this one most insidious symptom. If you or anyone else has found an effective treatment for this exhaustion I am sure we would all like to learn of this. God bless you mqb and all other fellow sufferers of this disease.
Hi ptpsr,
I have lupus since 2013. I have seen more doctors i cannot even think about it. Having been through alot, my husband insisted on taking me to the University specialist in lupus. That md told me she could help w/ my pain, but the fatigue n lack of endurance she did not have any miracle cure/treatment. So your feelings n symptoms ate typical for this miserable disease. Its very hard to expect n difficult for others to understand. Thats the best i can tell you. Rest when u need to n dont over schedule yourself. Good luck!
mqb, I know exactly how you feel. I too work full time and by the time I get off I don’t have the
Sorry! By the time I get home the most I do is cook supper, sometimes! I’m usually ready for bed by 7pm! I just wish there was something to make the fatigue better.
I work and rest a lot like your schedule, it is lonely and hard to maintain friendships but my true friends understand. I enjoy my job and would absolutely go crazy being home all the time and not working. I just do the best I can, and yes it gets lonely but my son is very understanding, and does things with his friends, so I don't feel it holds him back to much. When we can we try to plan some time for us also. The best thing is a dog they are very good friends and take it as you are good days and bad days. The loneliness and fatigue are hard to deal with but it is what it is and I try to deal with it the best I can. I wish you good luck, and hugs.