The last few days I've been very down and feeling very much as though my illness is controlling me rather than the other way round and it all got to me a bit - it doesn't happen very often as I try and stay positive as much as I can but it's taken all the wind out of my sails right now. Then I've come on here and realised what an amazing site this is. I can vent away to my hearts content and will find help and understanding at every turn. I've seen posts from other people asking for help and there is always someone with a response even if it's just to let the person posting know that they are being heard that kind of thing.
And all of a sudden I realised that yes this illness is absolutely crap and all that goes with it but without it I never would have met such a wonderful bunch of supportive and helpful people who always have the time to try and help someone else no matter how hard their own life is at that moment. I decided to try and find a positive in this shitty disease and take away a little bit if it's power over me at the moment.
So if there's one good thing about lupus it's ... that it gave me a reason to "meet" all of you and that's definitely something that has made my life richer than it would otherwise have been 😊
Written by
Mifford
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Oh my goodness, I've felt exactly like this this week! Totally understand. I've felt I've just existed. Not achieved anything. Barely managed anything at home. Can hardly keep eyes open. Terrible fatigue. Various aches and pains and the dreaded diarrhoea back. It's all got me down and I've felt a bit panicky - I don't think I've had a panic attack but I've verged on it. Horrible crappy disease indeed. I joined this site when I was diagnosed and it's been a life line for me. I don't always have time to reply to posts immediately but I try to go back later on and answer what I can. It's great trying to help others here as everyone has been so kind and helpful to me. No one really understands us like our fellow lupies. x
Completely agree. I've had one of those weeks where I had lots of nice plans, then I've started flaring for no apparent reason and had to cancel them all. As you say, the disease is controlling me and not the other way round. Only way I cope on days like this is reading this forum to find I'm not alone xx
Here, here...to all who have had an especially bad week or just need a bit of uplift, a big bear hug and positive thoughts...feel better all..been listening to some good music while resting 😀 thanks Mitford...
Lupus gave me the perfect excuse to look after myself, to not allow impositions from others ( food and rest, for example) and take mini-holidays when my body needs them.
Is not all bad, just now I took my MTX pills, I plan to enjoy a guilt-free-nap in 10... 9.... 8...
Awful that you've had such a bad few days Mifford but awesome that you wanted to express a big positive! Couldn't agree more. 😘
I know exactly how you feel mifford, I feel like I'm just existing rather than living and have very down days with the frustration of not being able to get on with my life the way I want to and wonder if I will ever get my life back and can plan again, I'll have a good cry then start over and get on with it the best I can, I think the cry helps😥.
I agree this is a great forum I'm so glad I found it , it's been a massive source of help and comfort to me knowing I'm not alone and learning so much too..
Here's hoping you have some better days soon, sending you 🤗 Hugs.
Aw I really liked your post. It explains why I act the way I do sometimes
The other day I just wanted to ram the car in front of me because the bumper sticker annoyed the tar out of me. I thought, oh my I must be repressing a lot of anger. I hate being his pain
And now mr. Cindy has the flu Which I don't want at all!! I'm a terrible wife. I hate always thinking about my health
Checking in to see how everyone is doing is one of the highlights of my week. I've left most social media last year as all the stress and bad news made me flare and worry, so for my own self-preservation I cut way back...and it was rather daunting as the 'net has mostly been my life as I've been more or less housebound for ages. So...yeah, it's nice to know I've got a place in the Spoonie Army, as it were, even if I wish the army wasn't so bloomin' large.
This IS a great forum. A few months ago I posted a question here and I had never done anything like it before. I was so pleasantly urprised to get several helpful and SUPPORTIVE replies from nice folks that don't know me from Adam! Thank you everyone! I know exactly what some of you in this thread have mentioned about the struggle for control with lupus. Could there be anything more frustrating that this damn mysterious disease ? There are times I am completely overwhelmed by the pain, fatigue, malaise and. Depression. I love how Mitford reached out -taking even a small step to do something to help myself out is helpful to get back on the right foot! One thing I've learned is that I am NOT what I can accomplish in a day, a week, a month. I can now find value in myself just for being who I am.
Sorry to read how you've been struggling this week but great you wrote such a lovely post about the forum that we all agree with. Hope you have a better week next week and feel better soon. Hugs💐😊👌🏻x
Aw that is so kind ! I so agree and I've only had it two yrs and already I'm kicked to the ground , but because of this site it keeps me going and feeling like I'm so not alone. Glad you found this site many blessings to you
Yes! I have an extensive circle of online friends, but few with chronic illnesses and none with lupus. No matter how supportive they are, having THIS place has helped SO MUCH. There's quality information and quality support.
To the other members, the admins, the moderators and owners of this site - thank you for providing us with this support.
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I can't do this anymore 🎢
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