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Hi

I need to let it out!

I'm quite new to the site but have been on a couple of times before. Recently diagnosed (SLE) 4 weeks ago. A 4 day stay in hospital with jaundice as liver is inflamed. The reason I'm on here is because I've been feeling so low. I've been absolutely horrible to my wonderful husband who is so supportive and loving to me he's been fantastic and tries to take away all the day to day pressures especially with our 6 month old daughter who is an absolute joy. She's the only person at the moment who seems to be able to make me smile.


I'm currently on a high dose of steroids to reduce the jaundice and help the liver. Once my consultant is happy then he will start me on medication for Lupus. The steroids have bloated my face which has made me very conscious of my appearance and I cant sleep. I am soooo tired!
I was booked in to see consultant last Thursday. I was really on a high as I was hoping that he would start reducing the steroids so the bloatedness would start going down and sleep may return. On arriving I was told that there was no clinic and I'd been booked in on the wrong day!!! I was asolutely gutted and sobbed in the lift, pathetic I know! I have to go back this Thursday instead.

As I said I have a wonderful husband and family to support me. There have been lots of tears this week. I wish I could just snap out of it!!!

Any advice?????

Hope everyone else is feeling ok

Donna xxx
 

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Hello Donna and (((((hugs))))))

My only advice here is to be KIND to yourself!!

Diagnosis is extremely stressful and emotional even when we are not as ill as you have been :hug:

On top of that, you are on high dose steroids which are a very probably what are causing the mood swings and lack of sleep.

A lot of people here can identify with what you're going through and I think we have all sobbed in lifts, cars, the ladies....

The main thing that I can say is that this is a bad patch...it won't always be this bad, things will settle, your meds will be regulated and you will learn to adjust ad live with this disease.

Four weeks is such a short time to try and get used to being ill and deal with this all.

love and hugs with best best wishes for Thursday
:grouphug2:

Katharine
 

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Katharine,

I'm usually quite a stable person! Its just hard at the moment. If somebody is nice to me, I cry! If I talk about how I feel, I cry! My poor old hubby gets the brunt of it though. I know you're right about the steroids and the mood swings which was why I was so upset on Thursday. I need to give myself a kick up the bum. My husband says I should join a support group which I'm happy to do. Do you know of any that are in my area or how I can find out if there is one? I live in Bedfordshire, UK

Thank you for your kind words.

Donna x
 

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hi donna

welcome to our sandbox. i'm glad that you have your husband there to help you this difficult time. as katharine said four weeks is a short time to try and understand all that you need to know about handling your disease. i've been diagnosised since 2002 and i'm still learning how. everyday it seem i find out more. there is a wealth of information here so just post any question you have or vent, cry or to laugh. we are here for you to help as best we can.
when you get on a good medication regement things will roll along alitte easier. best thing is to rest as much as you can and listen to your own body, pace yourself. i'm sure that is easier said than done with your little buddle of joy. i'm she can make your day with just alittle smile :p

just wanted to welcome you and say hi...HI:hello:

take care
xxox
 

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Hi again Donna,

I'm afraid I'm not the one to ask about support groups as there isn't even one in the whole country here (as far as I'm aware) but there are plenty in England.

Maybe you should start a separate thread with that as a title, then hopefully someone who knows of one would see it.

And, don't worry, I have no doubt that you are vey stable usually. We all know what it's like really :(

:hug:
Katharine
 

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Hi Donna,

Sorry you ended up in the hospital. That had to be hard to be away from your little one.

Prednisone side effects can be difficult to deal with, but sometimes it can be the quickest way to stabilize the disease. Once you are able to lower the dosage you will start to see the old you return.

You should check with you doctor's office to see if there are any support groups near you. Please feel free to vent here also. Expressing myself here has meant I don't need to unburden my emotions as much to my loved ones.

Take care,
Lazylegs
 

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Not surprised

Hi Donna, please give yourself some space and time, things may take a while to settle and it is very frustrating. I was diagnosed last November and I still am in denial. It takes a long time to get your head round and to start learning to pace yourself and especially to cut yourself some slack. I still feel guilty for being ill really, my family are lovely but I am frustrated at myself. The meds have made a difference though and I am slowly beginning to feel more in control... sometimes I overdo it and have to slow down, infuriating!!!;)
You will get to a more comfortable place in your head and in your body... just give it time, easy said, hard to do! Plod through it all and you will find a better day on the horizon... until then look after yourself, for you and your family... sending you a big hug
Claire X
 

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Totally understand how you felt sobbng in the lift - I was diagnosed with MCTD lupus varient 18 moths ago - went to my specialist every three months and had a good cry after each one - nothing they had said or not done - just sheer emotion that needed to vent. It does get better! Concentrate on your fantastic family and keep smiling!
 

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Donna,
It seems that not only are you lacking sleep but all your emotions are up in the air at the moment waiting to be taken off the steriods. I know the feeling but I have to confess that I got so much done on the steriods and didn't need so much sleep. I did not mind looking like the goodyear blimp as I felt so much better. Well, that was a long time ago and last time steriods didn't work at all for anything. Ok, you are a little bloated at the moment but you do know that once you taper off the steriods that it will go down, so try to not focus on that part of it right now, it might be different if you were going to stay like that right? You have a wonderful gift a supportive husband and family, most of us have to convience our loved ones we are really sick. You have not had enough time to adjust to the news of lupus it will take time but also remember that the loving and supportive family also got the same news you did and it is still a shock to them also. It will be easier if you all work together for the best possible outcome for you.
 

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Hi Donna,
I agree with the others that you are running on sleep deprivation due to a combination of prednisone, flare, and a young baby. Gee.....why do you feel so crummy??? Have you talked to your doctor about the lack of sleep? Tell him/her what you are going thru. If he/she doesn't listen to you, take a family member with you to have them help back you up. You are NOT being unreasonable, you have a right to feel as good as you can. That is where your family member needs to come in and point out that this is NOT just a flare, or just sleep deprivation, or a baby, it is all of them, hitting hard and causing problems for you and your family.

When I was on high dose prednisone, I was lucky to get 3 or 4 hours of sleep in 24 hours. AND I did not have a baby, to complicate things. Yes, she is a joy, but she is also a lot of work which when you feel horrid is a hard thing to deliver. Even if you don't sleep, when you put her down, you go lay down and take a rest. You need to capitalize on all options you can find. Even if you don't sleep, you will be getting some rest. Put on a relaxing cd and let your body heal.

You may find that you benefit from keeping a journal. That way, you can take it in to the doctor with you and go over what is happening on a day to day basis.

I don't know about support groups in your area. I am quite sure that there is someone on this board who can give you the info you need.

Good luck, and take care of you. You're the only mom your baby will ever have.
Sally
 

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Thank u

Thank you all for your kind words and encouragement. I know its gonna take time. Its just nice to know i can come on here and let off some steam! I'm gonna ask at the hospital on Thursday for any info on support groups.

Take care, hope you all have a good day

Donna xxx
 

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Hello Donna :)
I posted this on your Intro thread by mistake so here's a copy


Hello Donna
I'm pleased to meet you but very sorry about your diagnosis which must have been very shocking indeed. It's not surprising you are low what with one thing and another especially looking after a baby which is very demanding of well mothers. There's a whole range of very normal emotions in reaction to diagnosis, fear, anger and intense anxiety are common. Don't hesitate to let your doctors know how you are feeling - many of us take anti depressants. In fact it is reckoned that depression and anxiety can be disease symptoms as well as reactive. Some doctors believe that people with lupus often have a chemical problem to so with serotonin and the SSRI group of anti depressants can be particularly helpful. You may also have post natal hormonal influences rearing their ugly heads

You might have to consider whether you can or should continue to breastfeed depending what meds you are put on and bearing in mind the importance of rest - you have done very well for 5 months already given him the best possible start but time to look after yourself now.

This is the address of LupusUK
http://www.lupusuk.com/

We also have a new member, Mrs Wolf, who is Chair of the Herts and Beds LupusUK Group
This the link to her Profile where you can get her contact details.
http://www.thelupussite.com/forum/member.php?u=41879

I am glad you found your way here and hope you will find it very useful for information and above all emotional support. Lupus is usually a very lonely business and knowing others who understand and having a place you can share your problems makes all the difference.

There's no doubt in my mind that this is the best support forum there is! :)

Let us know how you get on please and Good Luck
:hug:
Clare
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(((very gentle hugs)))

I am really glad that you have felt able to let out how you are feeling here, and hope that just getting some of it out helps a little.

you have so much going on and to deal with, it must all feel overwhelming. Please be a kind to yourself as you can, and let people help you as much as possible, whilst things are so difficult.

Do be as honest as you can with your doctors about your feeling, I hope that your appointment on Thursday goes well.

With love xx
 

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Hello Donna,

Just wanted to give you big hug and say that I'm so sorry for what you're going thru. I hope you can get some relief soon. It is hard enough to have a new baby, without being so sick. It's great that you have a loving and supportive family.

Take care and let us know how you're doing,
Mary
 

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Hi Donna!

My thoughts and prayers are most definitely with you...I am currently in the same boat. I feel happy one minute and I'm balling the next...I was diagnosed with lupus at 16 and ten years later, I'm currently facing a third flare, new treatments and the return of the marvelous prednisone.

I understand and feel your frustrations but know that you are not alone. Trust that this time will pass, try to find the beauty in all this pain and find a purpose for all this suffering, be it your husband, your daughter, or just plain you.

“God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.”

God Bless you Donna!

Liz
 
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