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JellyJazz
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Discussion Starter #1
Hello,

I'm having a rough day.. i was doing so well. But now i have muscle shakes, headache, dizzy, sick, tired..i just feel generally rubbish..when i feel like this i start crying and panicking becuase i don't know how ill i'm going to get...it could be just for the hour or for days/weeks.

I'm meant to be going to see riverdance tomorrow night with my dad-had tickets booked for months-its their last tour. What if i let him down? The night after i have a big family meal...how am i going to get through this?

Any words of encouragement/advice will be greatly appreciated. I feel so sad:sad: usually i try really hard to be positive but this time i was caught unaware.
 

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Hi Jellyjazz,

I'm sorry - I really do not know what to say to help you but I am SO sorry you are feeling so bad and hope you can feel a bit better soon!

I only joined the site a few days ago and have to say that I have not yet been officially diagnosed. -( Discoid Lupus was mentioned to me around 20 years ago but it didn't mean anything to me at the time and whenever I have seen people since they have always referred to my skin problem as Psoriasis?)

Because of recent severe problems, I asked my GP to check the actual diagnosis from the skin biopsy I had at that time and, would you believe, it was never received??

Anyway, having found all the info on this site I am now in the process of listing out all my symptoms ready for my visit to a Dermatologist in 3 weeks time. - This is making me even more frightened as SO many of them fit together with what other people are saying - I too often feel like a 'good cry', even though I am usually a person who can cope with anything.

I realise I am not in such a bad way as you appear at the moment but am trying to keep down the fear and be positive which is what you HAVE to do, even though it is SO very hard for you.

I hope you get to see Riverdance - I have always wanted to see that - be DETERMINED! - However you are feeling at the moment, you must have felt like this before? - Try to think - what did I do then, how did I get through i? - TRY to relax, have a good rest and get through one thing at a time.

First the Riverdance, then the Family Dinner, then - whatever comes next.

You seem to have got through things before - you WILL again.

Dea x

P.S. - Just a 'little laugh' for you ?

While making my list of symptoms - of course, every time I get to a new one I think - YES - I've got that one, and so on...

I am trying not to panic so if I find something I have, e.g.

1) Sores on lips - what would I normally do? - put a bit of Zovirex on - yes - it helps!

2). Ulcers in mouth! - Bonjela !! - yes, it helps.

3). Can't swallow my food, growling 'tummy' - 'Oesophagitus' ?? - go and suck an antacid !

I can list many others but won't bore you!

Anyway - when it came to 'blurred vision' I again paniced but thought again - what would I normally do??

Answer..........CLEAN MY GLASSES !!! - That also helped - hey presto - blurred vision gone !!!

You have to laugh don't you, or you would go mad!!!!!

I don't know if any of this helps but I don't think anything I say could make you feel worse so hopefully it might make you feel a tiny bit better?

Very Best wishes,

Dea x
 

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JellyJazz
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172 Posts
Discussion Starter #3
Dear Dea,

Can't type much at the moment but wanted to let you know that you made me smile and i am so grateful to you for listening to me. Bottom line...you have to laugh and stay positive...i need to remember i have been worse than this and i got through it last time so i can do it again.

Thank you:)
 

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You are very welcome Jellyjazz - I am glad I have helped 'just a little'.

Just let me know how the Riverdance was - I am so jealous!

Enjoy it!

Dea x
 

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Maybe we should have a 'joke' or a 'funnies' threat where we can share jokes/funny experiences?

We all have down and frustrating days.

Hang in there.
 

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Hi Jellyjaz,
so sorry for you, I do hope you start to feel better soon, I know how you feel, I got up this morning feeling dizzy and very disorientated, try to keep your chin up, easier said than done I know, sending you cyber hugs,((((())))

Ellie
 

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JellyJazz, I hope you get to Riverdance. If you can have the meal somewhere with good comfortable seats it will be a great help. I went to London yesterday for an appointment and I was dreading the travel but for once it went pretty well. Always allow yourself plenty of time as rushing makes the shakes and aches worse. If you have good painkillers take them with you and use them before it gets unbearable.

The unpredictability of it all is enough to make anyone nervous. My Daughter Immi has Lupus and is pretty poorly, she has been taken ill in all sorts of places.

One of the worst times she fainted seven times at a Gig and had to keep being carried out by Security men. (Luckily she is not heavy) She doesn't let it get to her- it worries me a little but Mums are not allowed to fuss.

Is there anything I can say or do to cheer you up?
x Lola
 

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JellyJazz
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172 Posts
Discussion Starter #9
Thank you for all your messages:)

Today i'm not feeling "spaced out" which i'm so thankful for-that scares me a lot!

I'm a bit sleepy and dozy but trying to stay quiet so i can make it tonight...I'm being all determined again so i will tell you all how the show was as i will be going!!!!!!!!!!!!!!:hehe:
 

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JellyJazz
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Discussion Starter #11
I made it!!!:bigsmile:

Riverdance was an experience i will never forget - i even have a special programme that my Dad bought me too - and the music was just amazing! I'm just hunting online for the CD (queue was too long at the merchandise stand...my poor legs were saying "no more!!")

Apart from there being a lack of seats when waiting to go in (i just sat on the floor:rolleyes:) It was a great night. I was so captivated by the performance i forgot all the lupus feelings.

Today will be another chill out day - got big family meal tonight...once i get through that i can really concentrate on making sure i don't flare!

Thank you for all being so positive and supportive - helped me get through these past few days:yes:

xxxxx
 

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WWWoooww Jellyjazz !!!!

I am just SO proud of you !

Glad you enjoyed it so much - relax now before your 'Family Dinner'

One step at a time - remember - and 'enjoy'........

Dea Xxx
 

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I am glad to hear you had a wonderful time. Sometimes you just need to have a little fun even when you are feeling bad. It helps pick up the spirits.

Enjoy your family gathering.

Take care,
Lazylegs
 

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The Other Illinois Tammy
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Hi jellyjazz,
I hope you was able to go to the riverdance as it seems you were looking very forward to it. I am sure that if you were not able you did not let anyone down other than yourself, as your family understands I hope. I hope you are feeling better by now and are once again enjoying things you love to do.
 

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Hi again Jellyjazz,

You haven't posted so I suspect you managed to get through the Family Meal last night but are now totally exhausted!! (I hope you enjoyed it anyway!!)

The exhaustion is normal - having 'psyched' yourself up to those two events, you are probably so relieved that you have 'let yourself go'!, which means, you will now be feeling the exhaustion! ??

Don't worry - a few days rest will give you the energy to continue the fight!

Come back soon,

Best wishes,

Dea x

P.S. - Always feel free to 'p.m.' me if it is easier!!

Dea x
 

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Hi JJ,

Not sure how I missed this post. I am sorry you were feeling down but it sounds like you are a bit better today.

I LOVE RIVERDANCE!!! Must be the Irish girl in me!:lol::lol::lol:

I sure hope you continue to feel well.

Keep your chin up.:wink2:
 

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Well Done Jelly Jazz, these little "breaks" give us back a bit of our old selves. I know they are nervewracking and take a lot of planning but it is worth it sometimes.
Hope you are feeling nicely cheered up.
x Lola
 

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JellyJazz
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Discussion Starter #18
Thank you all so much - could hug you all!

Dea, your right - i did make it to the family meal and despite me having no appetite (silly lupus!) the steroids must have kicked in as i cleared my plate before anyone:lol: I really enjoyed my evening and was thankfull for once that lupus never makes me look ill...else my family would have started to worry!

I have been in hibernation after both events:) I actually feel pretty ok...dare i say it! Early night tonight to keep things safe i think. Unfortunatly i have a busy day tomorrow so will have to be a bit careful!

Thank you again for all the replys...really made such a difference:)
 

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Well done Jellyjazz!

I knew you could do it!

So pleased you enjoyed both events - keep taking things easy and stay well!

I'm just about off for an early night too.

Take care,

Dea x
 
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