I'm not depressed I just feel like s##t most days

[wotshernameagain]

I've been getting it in the neck from family, friends and colleagues for ages and I'm now at the point where I want to tell everyone to just leave me alone.

Some days getting out of my bed to use the loo is a mission so excuse me if I don't care to do my hair, make up or make myself look presentable so that you can feel comfortable.

If I look like s***obviously I feel like s***.

If I look like I'm having trouble menu veering then i probably am so don't watch me and act with out offering assistance then later give me the song and dance like your concerned about me.

If I have to do this by myself let me be by myself

Sorry for the random rant guys

[charls]

All I will say to you that has helped me with lupus pain is exercise.. Walking swimming running anything! It has mad my lupus pain so much better and almost like a normal person! He he

I hope things get better exercise will help you!

[Purpletop]

I'm with you there. Thankfully my husband doesn't get on my case in the days I feel and look awful but some of my 'friends' do that false concern stuff all the time. I just move the discussion on and ask them about themselves, that gets them off the hook to start talking about why they really called me about :).

We are indeed alone in carrying this burden, no one else can do it for us but I agree, they should at least give you space when you need it.

[mstr]

Hi, that's so searingly honest....of course if you feel bad you want to be my yourself. I find that when that's happening to me it really is to gather up some strength/try to give myself a talking to. It doesn't stop the problems being there but I still have to learn how to dance in the rain.

Try if possible to surround yourself with those that are not too judgmental......sometimes people just care and it comes across wrong. The spoons theory is a good one to give out or print something off from one of the Lupus facebook pages such as Lupus and Me. There is a good one on that for families/friends explaining what it is like living with lupus and how not to take offence if we don't make it out with them. The link is lupus-and-me.com/Letter-For....

I find if you have that one person that truly understands then it is sometimes helpful to 'offload'. At other times when I have not been right....it's been easier to hibernate for a few days then reappear when things have eased/you feel a bit more positive. I guess the balance is to also be aware of when you need to take steps to rectify things. Sometimes I have left symptoms for weeks longer than I should....in part because of too fatigued to even go to the docs. But then once I take the steps to try and sort out why I feel so crap....I feel as though I have a small element of choice/control back in my life rather than this condition dominating me.

I hope better days are just around the corner and do like the fact that we can be so honest on here. x

[Natura]

Wotshernameagain....boy do I hear you! People judge us because we look ok on the outside...we don't look sick...I get little sympathy. My husband and older daughter are finally starting to step in and help me when I don't seem able to perform the simplest tasks. My sister, who Is a pediatrician, doesn't see anything wrong with me. Don't expect any help from the public...they don't even know what lupus is...they just think u can't go out in the sun...a very misunderstood disease. There aren't even any support groups around here. Was thinking of riding my bike for a fundraiser to raise awareness.

Try not to push them away.. I do often and realize I don't really want to be alone..I want someone to care!! We care here...I hope things r better for u today..I tell my husband daily what my day is like so that he can understand. When they aren't around you, they don't see what's going on... I have a very hard time getting out of bed every morning...mentally, not so much physically though my joints are tight. I really hope someone you love is there to care..sincerely, and help...

[wotshernameagain]

Thank you guys! Not being able to sleep last night due to Prednisolone made left me in a foul mood hence the post but better out then in right ?

[Cynthia1]

I agree with the exercise it helps a bit, I walk and sometimes try light jog followed by a stretch. The thing is, when I get home towards the evening I tend to seize -up, joint pains especially around the knees.

It is annoying when you get the constant 'how are you FEELING today' question everyday. I need help in writing to my employer to request work from home once a week to accommodate my condition, other colleagues are doing it and they do not have medical issues like Lupus, the thing is I do not know where to start. The union suggested I should write something and pass it by them first....HELP!

[Hidden]

Hi wotsernameagain, you have come to the right place, ( the only place), to let off steam. Other than a fellow lupie, no one can really understand what we go through daily. I don't know how I managed before this site. I fact I rarely speak about it now to F+F. If they notice my struggles, I just fob them off with, " it's just the lupus". When I am bad, I go to bed and they know to leave me alone. On a funnier note, my husband makes me laugh. He will say, don't do me any dinner, I will make myself a sandwich. What about me then, have I got to have a sandwich too !!!! I still love him though.

[chucch]

Hugeeeeeeee Hug for you missy! Sorry to hear your feeling like s***, know that feeling all to well.

And don't apologise for ranting, that's what we are all hear for, to listen and support each other. And I'm a big believer in 'better out than in'.

I don't know what it's like for you with exercise, but if you could get hold of a bike and do some bike riding. It may lift your mood, that way your not walking (aches and pains) plus it's not too strenuous..

I only suggest this, cause I've recently taken it up, I absolutely fell in love with it. You get out the house for a bit, take it all the fresh air, its just really nice...xxx