MT, sounds like my life! While I would love to go back to my active lifestyle…I accept that home is my comfort zone…so I make my house as comfortable and nice as possible. There is always something here to keep me busy. So, I use my home to stay busy and get out of the house when ‘I’ feel like it. By now, family and friends don’t bug me about getting out. I like being home and thats the way it is…for now!
Unless I am six feet under on a given day, I always put a little makeup on, do my hair and dress casual but nice. No one really cares…but me.
Not sure how old you are, but I am 54 and have recently had my female hormones checked, I was down to almost zero on everything, including Vit D. After the first day of 5k units of vit D, i noticed something different…then when the hormones kicked in I can actually scrape myself off the bed during the daylight hours. Just some thoughts for all you girls out there. Don’t stop with just the lupus symptoms, we have way more going on that just inflammation.
be strong.. Choose to be happy and dont let Lupus cause your downfall.. I know having lupus restrict us to do things but small things mean a lot.. Do things that make you happy and I am hoping people around you will understand your situation..
I can totally relate to how you feel, in fact I just and this conversation with my psychologist. I feel like home is my safe haven. In my rob on the couch or in the bed feels so good. I even began to isolate friends and family because I don't like explaining how I feel and making plans that I have to cancel or dread going to anyway. I know that this is not normal behavior but I have not felt "normal" in a long time. You can do so much from home, order groceries, and if you wanted to. I wish my doctors would do home visits. You are young but your body may not feel that way. What ever you feel comfortable doing do it, who cares what others think. You should have those around that you can talk with or visit so you don't fall into a depressive state. I suffer with that come on with lupus.
I was just talking to my psychologist about the same thing too. She said she was afraid I was becoming agoraphobic which I'm not! When I first started to feel sick but it didn't take over my life yet, I still tried to act "normal." I pushed myself to hang out with friends, celebrate all the holidays with a party, etc. but at some point I began to feel this was more detrimental and a waste of energy to pretend I was having fun or cancel plans and then fight with friends because I would always “bail.” Obviously when you have lupus and you feel like you have the flu most days you want to be comfy and just watch Netflix in bed. I think you’re right that maybe that’s not what others think is “normal” but it’s the new normal for me, right now anyway, and sometimes that’s just what your body needs.
be strong.. Choose to be happy and dont let Lupus cause your downfall.. I know having lupus restrict us to do things but small things mean a lot.. Do things that make you happy and I am hoping people around you will understand your situation..
MT, sounds like my life! While I would love to go back to my active lifestyle...I accept that home is my comfort zone...so I make my house as comfortable and nice as possible. There is always something here to keep me busy. So, I use my home to stay busy and get out of the house when 'I' feel like it. By now, family and friends don't bug me about getting out. I like being home and thats the way it is...for now! :-)
Unless I am six feet under on a given day, I always put a little makeup on, do my hair and dress casual but nice. No one really cares...but me.
Not sure how old you are, but I am 54 and have recently had my female hormones checked, I was down to almost zero on everything, including Vit D. After the first day of 5k units of vit D, i noticed something different...then when the hormones kicked in I can actually scrape myself off the bed during the daylight hours. Just some thoughts for all you girls out there. Don't stop with just the lupus symptoms, we have way more going on that just inflammation.
I think this disease really takes a toll on women because we have so much pressure to do it all and a lot of emphasis is put on how we look. So, when you no longer have the energy to keep up with your regular beauty routine it can be depressing. It’s another reason I dread going out to social events because even if I have the energy…by the time I get ready I’m exhausted before I even leave the house but I don’t want to look slovenly either. I live in yoga and sweat pants now and most of the time I just throw my hair up into a messy bun.
I think it’s important to push yourself do maybe put on a little makeup as you said because it does improve your mood to look nice as long as you’re doing it for you and not others. I’m trying to look at things in a different light like for instance I used to wear my hair straight all the time but it’s too much maintenance, and as dumb as it sounds it made me really depressed at first. Now, I think to myself, “I could straighten my hair but I choose not to. I choose to use what energy I have on something else and that’s okay.” I have naturally curly hair and everyone says they would kill to have natural curls like me so little things like straight hair that I used to think were so important really aren’t. My hair my not be straight but it still looks nice curly post-lupus lol.
I really thought it was just me! For me though the fatigue is what gets me, I just don't have the energy and people don't understand. They think I'm avoiding them, or being antisocial, or just being a b*tch and no matter how much I try to explain to them it's like they don't hear anything I've said. But I agree I enjoy my house, I just learned how to loom knit so I'm knitting scarves and Afghans all over the place! Lol! I say so what you like being at home, but maybe get a hobby then you won't feel so despondent.
Yes! I get that all the time. I'm not lazy, I'm not trying to be anti-social, I just have no energy. What I hate is when I say I'm tired and others say me too. Unless you have lupus you don't understand there is a big difference between being tired after work and having chronic fatigue every day! But, I think it's great you took up knitting and maybe I'll try that! There are a lot of hobbies I used to like to do that I gave up because I never had time but since I'm home a lot and have the time I'll try to get back to doing some of them.
Yes, when you gain or lose weight from meds it really sucks. Before meds I lost so much weight all my clothes were hanging off me now I've gained weight back which is a good thing because I was too thin, but I've gained back more than I normally weigh. So now all my clothes are too tight lol
Linda Bull said:
I think wanting to hibernate is part of the lupus"-experience". I know I should get out but I hurt, I often feel nauseous, and it just seems to take way too much effort to get ready. Of course, the 40 lbs I have gained from meds, , and on and on. If you can force yourself try and get out. I think we would all benefit from counseling.
Yes it’s just not the same anymore. I enjoy when I’m well enough but it never fails that for one good night out is followed by three days in the bed exhausted and in pain
