I am so worried. I wont be able to walk down these cement stairs that lead to the beach front.How will I dance when I can hardly bare to walk.How will I last thru the reception.I have a strict no adult drinks policy at my wedding.Because 1 I cannot drink but 2 I walk like a drunk holding onto things .My heart is very tachy so I get dizzy and I do not want people thinking"she is drunk...I know that is what the public thinks "she is on drug,drunk or high.When in reality I am just me ,sober as can be trying to make it thru the grocery store.I just want to feel ok that day on my wedding day I want to enjoy it ,not dread it.I love my fiancie and want to be married 100% no doubt,not very many people can say that about getting married.My only fear is lupus will distroy that day.Or I will have to continue to explain why I look so pained.What lupus is and all the syptoms I am feeling.Yesterday was a small glimps I had 20 some guest for my daughters party.They kept asking me"oh my are you ok?I felt I had to explain lupus 20 times now times that by 100 guest...I keep having nightmares of being sucked up into a tornado off the stairs with my long veil or tripping on it.I just want that 1 thing I dont care if I'm sick the next days following.I want to feel good for my day.I hope and pray I can be ok just for a day that is all and I know there is no way to know if I will or that nothing can change this.I guess we all are praying ,wishing,hoping to feel well.It just seems so pointless I get worse everyday I have ulcers on my eyeball!Whats next on this crazy path.It is nice to label this illness and not just feel so uncertain of my mind.Its a newer reality to me .I have lupus this is real its not in my head its what it is and I have to just learn to live with it.
I'm getting Married this September ..Praying for ... - LUPUS UK
I'm getting Married this September ..Praying for remission before then.
I think you are a strong girl, look how well Juliets birthday party went? You worried but it was a success. Your wedding day will be the same. Just keep it simple and believe it's going to be a very special day.
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PM xxoo
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Congratulations with getting married!
A very short answer for now as I have to leave my house in a moment: ask for help from friends and educated friends before the wedding about Lupus. I like the spoon theory about having less energy than others.
I truly hope your health improves for your special day xx
One of the first pieces of advice I was given was to avoid stressful situations and I guess a wedding is just that! Try to enlist as much help with planning from friends and family, remember it is love that is the reason behind it all, I know we all want it to be a perfect day but it is for you and your other half and have the day you want, albeit maybe limited by Lupus, but don't let it win and pay no worry to what others think, you don't need to explain it. If you need support to walk or dance ask somebody special to help, they will feel privileged to be on stand by! Good luck xx
one calm down 2 your future husband must know your health conditions ,3 he loves you and you love him 4 we all worry about things that are going to happen and what can go wrong or what if .what if you just try and relax nothing is going to go wrong and if it does what the hell its your very special day your wedding day .you are a very special lady you will be ok .
Thank you your response made me tear up up a bit.
you are so very welcome i am sure you will be a beautifull bride please let us see the photoes thinking of you my new friend sending softest hugs you will have a wonderfull day xxx
You are marrying for love, for the love of your husband to be for the love you are able to give him, whatever form that takes
Lupus is not easy.... it is a shite illness that has the ability to take over and rule your life, it is muniplative, sly, obnoxious and a chameleon. Its scary, it hurts, it can cause so many symptons that most consultants/drs/general public shrug and say 'sorry' but have no idea how it impacts on your life... so yes, you will have to adapt, change, be flexible, strong, bloody minded and every other word you can think off.....but you already are............
AND ..........you can do it, you can be the best wife you can be at any one moment in time and you will be fantastic...
Your fiancé is marrying you and you alone, you just happen to have an illness that requires a little more understanding...
Whatever the future holds, you are going to be married, whatever the day holds you will be strong enough to have grace, poise and beauty to get you through and ultimately at the end of the day you will be married to the person you love and who loves you........
But on a prcatical note, you could always print up a little card to give to your guests, via ushers, with a short explaination, I carry my careplan with me at all times... lol
Try a few deep breathing exercises before each task you feel may be stressful
Dont be afraid to ask for help, easier said than done, I know, but people are always willing to help, especially at weddings...
But most of all, its one day, one glorious wonderful, beautiful day that everyone will remember the good and so will you and you husband.
From my heart, I wish you all the love of the universe....may your troubles be less and your blessings be more and only happiness enter through your door.
Many hugs and hands of help and strength
Mandy 👋👋💟👋👋💟👫
Ps, would love to see the pics of the big day.
I hope you have an amazing day,take a cat nap if you need it ,as it's a long day.I changed my diet to a no processed diet cutting out red meat loads of fruit and veg,and blend with a nutri bullet and my energy has improved.Wish you both all the love in the world xxxx
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Wonderful post & wonderful replies
You've ALL given me a real LIFT this morning
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Echinacea Try this natural pills.butcher broom and ginkgo biloba. Will pray a lot for you God always listen to one who remember him. All the best for your future life.
You will be fine! Don't stress out about it. My wife and I will be married 35 years on September 26. That is a good month to get married, I know. 
Congrats!!!
Good luck xoxo really hope and pray that your special day is all that you want xoxo
Although it is natural to worry about how your lupus will act up it sounds as though you are also anxious about the big day itself, which is very normal!
There are some things you can do, like having a chair handy, an arm of a dear friend, your new husband holding you in such a way that you will not wobble even if you are dancing. If alcohol is forbidden, no-one is going to think you are drunk, because nobody else will be!
It may be opportune to have a little mention in one of the speeches of how well you have coped with your illness and compliment you in your not letting it ruin your special day.
It need not ruin your day, make plans now to ensure you are rested, confident and with a positive outlook. There will be mistakes and odd moments, but that happens in all weddings. I feel sure you can recollect some occasions where things did not run smoothly and lupus was not involved at all!
Hope you have a fabulous day and enjoy every moment, it will go so quickly.
True love is stronger than Lupus.
Enjoy your day as it is yours and your hubby to be day .
Whatever you do or don't do on that day won't make a jot of difference to the fact that you will wake up next morning as husband and wife.
Concentrate on that .
You are there to enjoy the moment not put on a show to make everybody else ok.Those who care about you both will enjoy it just to see you both happy.
My first marriage at a young age when not showing signs of illness was not good and lasted not very long.
I met my now husband not long after who I love 100% and is my best friend aswell as my husband but despite being together for 26 years we have only been married 5 years in july this year.I went through similar nerves as you about the tripping ,falling over etc but i think most brides to be with or without illness do that.I even wore a proper ivory coloured wedding dress and shoes(always normally wear boots for ankle support) so had silk flower and long ribbon corsages ,to match wedding flowers,made and attached to my elbow crutches which made me feel more girly and less likely to fall.Add to that the fact that with the help of our oldest son we had to look after our two younger sons who have adahd,aspergers,tourettes,ehlers danlos plus some and see they were happy and i thought it would be a difficult time .It turned out to be honestly,I know this sounds fairytale,the most perfect wonderful day of my life.
So please look forward to your wedding day .You will look beautiful ,you may get tired but that's ok,you may need to rest or need help but honestly thats ok just smile ,be happy and post us all a photo afterwards.
Sending you some positive vibes
Effie x
Thank you for all the replies they are very helpful.Its nice to share your fears with others who are having the same symptoms.And I have 0% anxiety about the man and the father of my child.We were meant to be together and we both know that.I was told I could not have children but with Ryan ,It just...It was nothing short of a miracle..That's all I can say about our relationship and lives together. There was some force making us drawing us towards each other.I honestly tho would rather just wake up and run down to the court get married lol.I know my parents would kill me.I am their only daughter, so this wedding, big wedding its more for them.I guess I should let the dj know I have this and need breaks in between dances and when I first come in I need to sit.I do not have to hide this like its wrong to be sick.I should be open about it.That's kinda what i got from everyone responses as I read them all carefully.
Undifferentiated Connective Tissue Disease - confused
getting perms and lupus & hair
Festive
LUPUS UK Live Virtual Seminar - "Lupus & Fatigue" - 6pm (GMT) Wednesday 18th November 2020
