So today I thought I'm going to take advantage of my pain pills and actually try to do something for x amount of hours

[Julietsmombless2015]

So I started out in the morning with a huge cup of coffee and my medication and I started to go through all the closets and baskets in my room full of clean clothes but I just never was able to put away then I proceeded to go out to the garage and do the same thing and pack all the winter clothes in the garage also threw out about 6 bags of clothes that would no longer fit me this took about 7 hours I looked down at my feet and notice my ankles are swollen but not only that there is a bruise that is bluish reddish greenish dark brown and it's a ring that goes completely around my ankles has this happened to anybody else is this normal my ankles have always hurt very much and they always have felt like they were bruised because of the tenants being so tight like tendonitis but this you can actually see the bruises like on the outside and they feel broken it also has completely cut off the circulation to my feet I have no feeling in either of them at all I took a hot bath to try to relieve it and the only thing it did was make my toes feel like they were asleep like you know when you sit on your feet for too long and they still hurt my ankles hurt there pulsating I guess I have to learn my limits it's hard when you feel helpless or like you're not ever doing anything or going anywhere and you just want to feel not worthless payment for that is severe pain and I do not know how many days this is going to be this way

[Genabena]

Im so sorry. Try epsome salt and also i use a teaspoon of coconut oil daily in my coffee and i cook with it. It helps tremendously with inflammation and digestion also. Actually there are more than 100 useful things coconut oils are good for. Google health benfits from coconut oil...youd be amazed!!

[Julietsmombless2015 in reply to Genabena]

a close family friend of mine she's Puerto Rican and she uses coconut oil for everything to hell up scabs to make them not scar I mean she literally is it for everything coconut oil and she looked up the bench in from formation about lupus and told me that I should start using it to cook and things like that BTW I cannot see what I text talk so bear with me I'm waiting for my new eye doctor appointment August 31st but until then I know that everything that I say doesn't come out right it's kind of like reading your word puzzle

[littleeffie]

That looks uncomfortable to say the least.

Should probably mention this to medics.Keep photos to show them.

Do please pace yourself !

It is difficult but going flat out for hours will mean payback big time,

Do one hour of sorting the clothes etc daily for 7 days is much better on you than 7 hours one day then out of order for rest of week.

I think that was the hardest thing for me to learn to stop before finishing a job then continue next day but over the years its been a lifesaver.

Even playing spending time with my kids.l bought a timer and set it for an hour so they knew and I knew to stop when it went off.The good thing about it was I got so I could play with them or do little jobs everyday rather than overdo playing with them one day then not for days after.

please take care of you

[Footygirl in reply to littleeffie]

Such wisdom guru. Can only reinforce your words. Little and often gets you further than giving in to the frustration of inactivity. Do try effies prescription Mommy. Be proud you could work well for an hour. See how much you achieve in a week and how much fun time you can give to your daughter.

I too would encourage you to see a doc about that ankle.

Do take care.

⚽️

[Julietsmombless2015 in reply to littleeffie]

I physically was not able to do anything after I had my baby I instantly went into a flare up then I was diagnosed with lupus I did not know what it was I had to go to a different doctor a whole different facility for them to diagnose me and when they told me I had lupus I didn't believe it I was in such disbelief but it's nice to know what's wrong with you and you don't feel crazy but for me my daughter is 15 months old now I have not been able to put clothes away since she was a baby because I just have no energy it's like the life has been sucked right out of me and I finally just felt a little bit energetic like I can do something I want to I'm going to you know and I just didn't stop I mean I still didn't finish I have like three baskets LOL and it bothers me because I have OCD which is a very bad combination to have a lupus flare-up and have OCD they're trying to treat that with volume to try to call my thoughts down where I want to keep doing things my loopy doctor thanks for that I run marathons because my information numbers are so high but actually I do very little I do play with my daughter constantly I mean she's an only child and she doesn't have anybody else so I play hide and go seek I crawl around the floor with her all day I do things like that I think my body's pretty used to that it's just not used to standing I cannot stand for a long. Of time I weigh 250 pounds I just lost 20 pounds I was up 270 which was scary to me I'm used to being very petite but my thyroid level my natural steroid level roads up very high because the inflammation it was trying to fight off the disease and now my steroid levels finally dropping it's making me feel more pain because the spirit level has dropped but it also has made me drop 20 pounds and caring that extra 20 pounds on your ankles I mean it's terrible I couldn't imagine what it would have done a month ago when I was 20 pounds heavier to my ankles you know I'm trying to learn I don't know much about lupus so it's hard for me and I've always been a go-getter and I've always been the type of person that worked three jobs at a time and I'm just not used to slowing down you know and I feel like you you should slow down until you're old you have to be in your sixties or seventies to slow down you know but I guess with this disease you just have to I feel lazy I don't like feeling lazy

[Julietsmombless2015 in reply to Julietsmombless2015]

Not 270 I got up to 170 lost 20 pounds now I am 150 I am used to being very petite around 115 120 is my Norm I am text talking I can't even type because my hands hurt too bad so try to bear with me it's confusing so I'm trying to read a word puzzle and figure it out on top of that I cannot even see what I have talk text because I need glasses really bad and I have to wait till the end of August to get them

[littleeffie in reply to Julietsmombless2015]

I hear you and understand totally.

I went from being a fully fit strong fire eating/breathing trapeze flyer ,motorcycle stunt rider,hgv driver that also ran a jewellery design import wholesale business while being footballing cake making horse riding fun mom despite having Ehlers Danlos syndrome.

Then Lupus bit really hard followed by RA,sjogrens and Fibromyalgia.

Talk about hero to zero in such a short time!

I fought against every pain ache blood clot miscarriage infection enlarged spleen damaged lungs kidneys trying to pack in but in the end I had to stop and realise that I had to rejig my life.Accept the new me and be a more calm organised paced me or lose being there for my kids when they got older.This actually helped a great deal as we all adapted to it.I read books and watched films or helped the kids to draw things .Played what's missing ( tea tray full of their little toys ,blocks ,pencils etc put a towel over and sneak one thing off nd see if they could work out what had gone) and lots of easy on my lupie body and energy levels table or sofa games which kids loved .This worked well for when i got cancer and went through surgery and treatment as they were less worried by me still being able to play the easy on me stuff I had done before.

You don't have to be a all singing all dancing wonderwoman to be a good mom .You just have to look after your health, pace your energy levels and learn to accept and like you so you can be a happy mom. She will need you as she grows and goes through all those awkward ages so please dont wear yourself out now.

The one thing I will now say is not to upset you but to make you think as I had to with my kids.What if she gets to be say a teenager and develops Lupus or similar?Highly unlikely but needs to be said.How hard would it be for her to accept or pace or be happy if you've shown her that you can't.My youngest of four kids is showing all the signs of lupus on top of EDS and has to use a wheelchair to get round high school.He adapted well because he has learnt from watching ,seeing me that you can still have fun and live life but just at a slightly slower pace and accepting he needs help or crutches,wheelchair etc .So although he would obviously prefer not to have these illnesses its not been as hard to deal with.

Very very very hard to get your head round but once you just take a step back and think things through it becomes a whole lot easier.

Please try to like you despite illness and accept lupus will be your shadow but not your boss.

I can't take kids on motorbike with my illness and his wheelchair so got a 3 seater motorbike trike with rack for wheelchair so we can still have fun .Its compromise not giving in.

Sending kind ,caring,calm happy times to you and yours.

😊😊😊😊😊😊

[Julietsmombless2015 in reply to littleeffie]

Wow I'll keep you and your kids in my prayers. I have thought about it.She doesn't see me sad. I hide in the bathroom or take a shower if I feel I may have a cry fit.She nor nobody sees that. I pay with her everyday and I'm sure she thinks I'm 100% healthy despite how I feel I can tolerate a lot of pain.

[X01WOOG]

Yes, I know what you are talking about. I start out with coffee and take my meds and think I am going to accomplish a lot. Well, I start projects--like putting clothes where they belong. So many of my things don't fit anymore and I keep moving them around instead of getting rid of them. Some of them are nice and never been worn. Anyway, my legs swell, my feet feel like they are bruised on the bottom and the skin around my ankles feels so tight. My feet and ankles turn a bluish color, too. Then, I have to sit down, prop my feet up. It is so frustrating. My doctor wants me to have a cage, rod, plate and fusion in my degenerating bones. Now, tell me how is that going to work.

[Julietsmombless2015 in reply to X01WOOG]

It's the biggest adjustment if you are usefully and did everything to doing nothing or very little. I have learned to let others help with Juliet her 2 grandmother's. Is hard but I'm trying to resist hurting myself trying to prove I'm well.i know that sounds weird