Argh! I need to offload!

I don't normally post about how I am feeling - I prefer to bottle it up and then use humour as a defence mechanism. Today, however, I just want to scream. While I am nowhere near as bad as some of you, I am becoming more aware of some symptoms. For example, my Raynauds / joint pain is getting worse. I wake up in the mornings and either have to slowly unfurl my stuck-in-position fingers or try and move my stuck-in-position flat hand. Socks in bed? Sexy! Actually, no - necessary!

And the brain fog! Oh, my goodness! I had been putting this down to general forgetfulness or part of the "ageing" process (I'm 32, though) but when you get stuck in nearly every conversation, or you momentarily forget how to use simple things (mine was a stapler, just last week) and people start to give you funny looks that you begin to realise that it might not be so normal after all. The scary thing is that it feels "normal", so nothing mentally changes in me during these episodes. Do you know what I mean when I say that it feels normal? That's what makes it frustrating, because I am in a moment and not seeing myself from the outside. It's when it's over that I get frustrated with myself. I used to wonder how people with memory loss could get angry with themselves when they forgot things, or were struggling with words, but now I know. I have thumped my desk in frustration a fair few times this week, probably not helping my joints much but it feels so good.

Rheumy next week, so I will use him as a therapist for a bit!

*Breathe*

8 Replies

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  • i think there is more brain involvement than doctors usually acknowledge, judging from the comments made on this site, you should not be aging at 32!

    Good to vent your frustration on here and to know you are not alone :)

  • That's what I like about this site - we won't judge each other because we know exactly what it's like. Although we all suffer different degrees of illness, we can fully understand the suffering of each other.

    I have enlisted the help of a personal trainer and I sent her a link on the spoon theory. Today, I received an email from her saying that she was saving some spoons for me. Very sweet! ;)

  • Hi, I have been the same since my early 30's and my daughter made me go to the doctors as she thought I was starting with Dementia ! The doctor laughed and asked if my family 'realy' knew about Lupus? It was then that I read up on brain involvement. I am 66 in 3 weeks time and some days I can not 'find' the words I want, both when talking and typing. I have now started saying to people "Sorry Lupus Brain Fog" and they just accept it. My hubby does get annoyed though as he is in the front line as it were and Yes sometimes I do get veryhurt by the looks both he and others give me, but Hey I am alive to be able to talk to family and friends and meet up when I can. I can give them all a hug and tell them how much I love them and this morning I was watching some beautiful little Blue tits in my garden sheltering under the flowers 'till mum came along with some food. Yes I do forget things, but as long as I don't forget my loved ones - who cares.!xxx

  • Indeed! I think I am going to have to learn to accept that there are some people who will never understand something as long as it isn't happening to them. I only realised it might be lupus related when my rheumy said that if I was ever feeling tired or confused, then that was part of it. Reading this site has helped me to accept a few things - it's like group therapy!

  • Buried feelings don't die, they make your sicker. If you express them, they lose their power over you. Posting here and journaling at home are excellent ways to do this.

    The suppressed feelings add to your frustration and they certainly add to the "fog." Lupus "fog" can have physiological causes, but a large part of the problem is that we are trying to wrap our minds around what is happening to us. There is only so much your mind can do at one time.

  • I agree with gazorpf that buried feelings make you sicker. Its always better to get things of you chest, and everyone one on here is amazing and so supporting, i have found things so helpfull from mental to physical. Its just so humbling to know the people on here get you and know what your going through daily , just remember when your feeling alone and its all getting a bit to much, we are all here to share support and share our spoons..reaching out and giving out hugs. Even when people say oh you look ok, we know your not and we get you xx

  • Theses days l tend to look around at my friends and family and realise in a way l am far better off than lots of them - because of being so ill with Lupus and having to learn how to live and cope with it on a daily basis, it has taught me to really appreciate silly but little things others either miss completely or don't even have time to think about. My late father was a very wise and kind and clever man and as children brought us all up to appreciate even the small things in life and that ALWAYS no matter how ill we are there is always somebody somewhere worse off than us - so so true. So now because of Lupus l live each day to the fullest and enjoy even the smallest of things. THANK YOU LUPUS XXXX

  • Thanks, everyone - all very good advice. I recognise things I have told other people, but I think it takes other people to give your own advice back to you for you to finally see how much worth it has, and only then can you take your own medicine, so to speak. :)

    xx

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