Sometimes I struggle

[Tavares79]

Hi.thank you all that answered my post...it helped me quite a bit.

It hasn't been a good week, I started to have stomach pains, well I think it's stomach anyway... I've waited till yesterday to get doctors to see me as, even though they put my mind at ease, sometimes I just feel like I don't want to need them and want the pains to go away.

Anyway I've spent all week not eating because I feel pain and bloated. I've decided to tell my husband,I don't want to tell him All the time that I feel poorly because I want him not to worry all the time ( and he doesn't deal well with it ) .he called the GP ,they saw me and done my vitals, my temperature, wee sample and palping my tummy, result: probably is gastritis So he gave me oneprazol witch I said I was already having them but he asked me to have them twice a day.

Today I woke up feeling great, maybe because I had a lactofree yoghurt with live bacteria in it...I felt really good , was cleaning like there is no tomorrow,lit the fire,done lunch, put baby to sleep and chilled.all was good but the pains are back, leaving me worrying again... I just worry so much, I'm fed up of thinking that everything that I feel is going to kill me..

I know it's wrong but I cannot help it.

Hope you all have a great night.

Thank you for letting me vent

[Oshgosh]

Leas vent away. Have you got a formal diagnosis

[Tavares79 in reply to Oshgosh]

He said it might be a gastritis...

[Hidden in reply to Tavares79]

Tavares, if it’s gastritis, you are smart to take care of it so quickly. I had it for over 5 years and wouldn’t go far from my bathroom. We have 4 bathrooms in the house, but it had to be mine upstairs. We became too good of friends, my bathroom and I. Like a little office in there. Thank goodness for silly games on my phone.😆 One morning, in the weeee hours, my husband walked in and found me curled up like a ball. He wanted to call for an ambulance, but I begged him not to. I was in so much pain and so exhausted that I couldn’t bare the thought of being touched, moved around, strangers ordering me around and asking me questions, etc. I felt that the lesser of the evils was to stay in my little fetal position on the bathroom floor. I think I (incredibly) lost 5 pounds in 30 minutes (and put it back on quickly of course.) But my point is, I stupidly gave up 5 years of my life to it. So good for you.

[Hidden]

Tavares, I know what you mean about not wanting to worry your husband, etc. And I know that I too, wake up sometimes feeling great and get caught up, and forget I’m sick chronically, and then get so disappointed and frustrated when I wake up to a bad day.

I think that the trick might be in the getting use to this as our new normal. Enjoy and celebrated on the days we feel good, but not beat ourselves up on the days we don’t. Be open and honest with your husband, as this involves his life too. You don’t have to tell him every ache and pain, but let him know what’s going on, that what you are feeling is something we’re all feeling too. Let him read about the symptoms. Maybe let him see some of the struggles others on this site are going through. The struggle is real, and it will take a while for you both to get use to, but as much as you may be tempted to put some type of blame on yourself, don’t do it. It’s not your fault!

[Tavares79 in reply to Hidden]

I know, just sad 😢 .

[Oshgosh in reply to Tavares79]

Give yourself a big hug.

It’s horrid when you feel awful,and you don’t know whether it’s the lupus or some thing else

[Cas70]

Right ! You must give your husband a leaflet that explains how this CHRONIC illness affects you. Until I did, my husband did not get it. Worrying about his reaction is not helping you, and unfortunately we have to help ourselves in this. I finally came out and told family and friends. Now when I am bad, they offer help instead of sighs. It is still a living nightmare every day. It sounds like me, and hundreds of others, you did too much on your “good” day - DONT. Do your jobs in bursts of an hour then take a 15 minute rest. I understand you can’t do that with a baby but the rest of it you can. It has taken me a couple of years to get into this system, you can still get thru what you have to do, just not all in one day. Drink plenty of liquids it is an energy giver. When your baby naps, try to do the same. I am a sole carer so I know the pressures. I am at the end of my life and my heart goes out to younger sufferers so please anyone who reads this FILL IN THE QUESTIONNAIRE THAT PAUL POSTED A COUPLE OF DAYS AGO - we need proper Clinics like they have for Diabetes, not being pushed from pillar to post. We need proper centres and more educated medics.

End of rant (for now)

[Roarah]

You Might be suffering from health anxiety in addition to your lupus. Have you mentioned your constant health worries to your GP? There is help available to help us deal with the anxiety that often coexists with lupus diagnosis. My life and my health are so much better now after finally addressing my anxiety disorder.

Good luck

[Krazykat26]

I found the spoon theory the best way to explain to my family n close friends. It's a story told by a lady Christina (can't remember surname..sorry) but if u Google 'spoon theory' u will get it!! She has lupus herself.

Unfortunately stress drives lupus so your symptoms may worsen too...it's important that we stay as calm as possible (easier said than done..I know).

BrooksideCourt explains it very well!! U will find your own way of managing but it takes kindness n patience..u must take care of yourself!! Congratulate yourself when u achieve n if u overdo it..learn the lesson n take it easy..lupus has a habit of biting u in the behind..it's known as lupus deficit or lupus payback. As u go along u will learn that even when you're feeling a good day u still have to go easier on yourself!!

It's frustrating n anxiety producing especially at first..my hubby used to say on a good day..remember to take it easy..u feel bit better today but remember the last time when u overdid it? That reminder is enough to exercise caution when I'm feeling anywhere near my normal!!

U can talk to us anytime..this is a safe place where u can rant n rave..get things off your chest..we all know what it's like living with lupus n other autoimmune diseases coz we're all living with it 24/7.

🤗💐🤗Xx