[mooks]

I hate to admit it because I don't want to seem weak but I'm really not coping with having SLE. I feel like I can't face anything..I am having so much time off work because when I wake up in the morning the day just seems like this massive impossible marathon. I never know how I'm going to feel and I worry about it constantly. I get so nervous when I go out with friends that I barely go out anymore because of the fear of feeling ill and needing to go home. Loads of my friends live in London and I would love to go and visit them and go out in the evenings there but I just know I couldnt do it because I can't go home when I start feeling crap. I hate meeting new people because its so embarrassing when I'm ill and have to explain my condition to them..especially as no one has a clue what it is.

I'm tearful and angry all the time and last night I just broke down to my boyfriend and told him I don't know how to cope. And although he was totally understanding I feel so weak now I have showed him that. And I feel like I can't talk to my Rheumy or GP about it because I don't want them to start thinking that my symptoms are caused by the way I'm feeling-because its the other way round. I feel like this because I'm struggling.

Sorry about massive rant...does anyone know what I can do or how to cope?

Thanks guys xx

 

[cath]

Hi Mooks ((((((((((((((Mooks))))))))))))

I think the first thing you need to do is give yourself a break. It is OK to admit that you are struggling. I don't think it is a sign of weakness at all. Rather the first step towards turning the situation around.

So good on you for being able to confide in your boyfriend, and in us.

I think you really do have to tell your rheumatologist and your GP how you are feeling. I'm sure that your rheumatologist at least, and probably your GP WILL understand that it is the disease and associated strains that is stressing you out, and not the other way around.

In fact, I am wondering if some of your feelings might in fact be mild neurlogical involvement from the lupus. It sounds a bit like you are experiencing some depression, anxiety and maybe agoraphobia - all of which could well be the lupus influencing your brain. Certainly reason to tell your rheumatologist.

I can identify with a lot of what you are saying about the grinding fatigue, and the difficulty in maintaining any sort of a social life. You are young, and your diagnosis is quite new. I think your reaction and feelings are very understandable. I also believe that it won't always be this way for you. In time you will be able to find for yourself a ballance in adapting to the disease, and adapting your life that still makes life worthwhile. For me, it took several years, some councelling, lots of whining at my husband, and antidepressants. But I feel that now I've come to a sort of acceptance that I have limitiations, and how to manage them and still do things I like to do.

Are you currently on an antidepressant? It is really worth considering. I urge you to talk to one or both of your doctors about this. It really does help. There is enough evidence that lupus causes a real chemical depression that you needn't feel like a failure for needing medication to help you cope. If you had diabetes, would you feel guilty for needing insulin? I see lupus depression in the same way. It robs my brain of seratonin, so by medicating that I'm simply correcting a physical imballance so that I function normally mentally.

You are a bright, hard working well ballanced young woman, and with some help and time, I really believe you will feel this way about yourself again.

Hope this helps:wink2:

X C X

 

[Katharine]

Hi Mooks,

I just wrote a reeeeealllllly long reply to your post but then it went zoop into cyber space.

Having read Cath's post, it basically says what mine did - possibly more eloquently

plenty of hugs to you :hug:

Katharine

 

[LolaLola]

Dear Mooks,
Are you sure you are well enough to keep working? I ended up so unreliable that I just felt guilty and worried all the time about letting people down.
Regarding your fears of being ill when out, I can identify because it has happened to me on holiday a couple of times, again the fear of it happening is very real. Luckily my friends all understand and I am one of those people who actually looks really ill when I feel bad. Many of us still look well and that must be hard.

I do understand how you feel. In my opinion it takes lots of talking to fellow Lupus patients to arrive at any sort of acceptance.We are all here. Meanwhile, please think of a treat for yourself, even something small, you deserve it.
x Lola

 

[Fairy]

Hiya mooks,
I think Cath's post says it all really. I find it very difficult to confide in people about how I'm feeling - it's just the way I am, but I don't think that it's a particularily healthy way to be. You need to let it all out occassionally at least, and I think you took a hugely positive step in talking to your boyfriend. Do you start azathioprine soon? Hopefully that will help.

Take care :hehe:

 

[mooks]

hey thanks for your replies. I started azathioprine a couple of days ago and its making me sick! but got some ondansetron today so hopefully that'll put a stop to it...but yeah had to let work down again cos i keep throwing up. Also my bf has gone to belgium for the day today without me so that makes me sad too..because i could have gone but im just not well enough and id ruin it for him. As for antidepressants i really dont want to go down that path. and i seriously think my rheumy will start putting some of my symptoms down to my mental health as although i have a firm diagnosis my lupus doesnt show in my blood work all the time and im so paranoid he wont believe me.

 

[lin]

hi ((((((((Mooks)))))))))))) cath says it all hun, i agree, you need tell dr's really you do, i feel sort of where you are, and you feel like it all comes down on top of you and you cant get away from it all.

I had to give in if you call it that, and have now retired on ill health, i though omg me how can this happen, nothing as ever beaten me in my life, but then i didnt have sle.

please go seek help you cant always do it alone , yes we are all here for each other, but on a personal level out there you need to see someone please go, and please let us know how you get on, this is a wicked disese it really is, but as cath said you will come through the other end, me too, well we got to havnt we. :hehe:thinking of you big hugs


take care Lin xxxxxxxx

 

[Fairy]

What dose of aza have they got you on? If you're having trouble with it, start off with 25/50mg daily and build it up slowly so your body has time to adjust. :hehe:

 

[confused1]

((((((((Mooks))))))))

Cath's reply says it all and says it well. I do hope you will talk to your physicians about this. The first overt symptom of my lupus was overwhelming depression. My MD recognized that the symptom was caused by an illness and not the other way around. I'm not certain why you don't want to take anti-depressants but I can tell you that 8 months on Wellbutrin helped me immensely. I agree that it's necessary for you to be honest and open with your boyfriend. A good relationship is based on honesty and you may be denying him an opportunity to be supportive and to care for you in a new way.

As for work, sometimes it's not possible to continue working. It may be that you need a sabbatical to give your meds time to kick in. Reality is hard to fight. I know, as I've been fighting it for five years and more now.

Definitely keep posting and let us know how you're getting along. You're not alone.

Sunny

 

[Lupo30]

Dear Mooks

I, and everyone here, knows exactly how you feel.

I think Lola has made a good point, are you well enough to be working? I worked and studied and then lupus struck! I can't work and now have to live on disability. Not everyone wants/has to, but I just could not carry on and knowing that I don't have the stress of going to work at the moment has improved things for me. I do however miss the gossip of work and uni, but I have to accept that, for now, my health is more important.

I have been started on azathioprine but unfortunately it has made me feel worse than before, so unfortunately I don't have any answers regarding medication.

I just keep going and am looking foward to the day when I can go out with friends and not have to worry. We will get there! Keep going!

Love Kat xx

 

[debatat]

Hi Mooks

I am sorry that you are struggling to cope at the moment. I know how you feel and would agree with what others have already written.

I am glad that you have such a supportive boyfriend, sometimes we need to let our guard down so that others can see how we are really feeling, so that then they can help us.

I know what you mean about explaining your illness to friends. I have just been on holiday with friends who have seen me at my worst in hospital and yet they still dont understand what lupus means on a day to day basis. However I found that when I swallowed my pride and embarrassment they were ready to help me when I became unwell on several occasions. True friends will value your company so much that they will be willing to help you if you should need it. Maybe you could start with one or two really close friends?

Sorry for rambling, hope it makes sense.

I really hope you start to feel better soon.

Deb

 

[Marshmellow]

Oh my Mooks I could have wrote your post-I am soooo glad I am not alone. I feel I've been robbed of my life at 31-I keep telling myself it is just a bad patch but its hard to shake off and I am already on prozac. Am going to strt on azathioprine a week on Thurs and having read your post am dreading how I'll cope emotionally with feeling rough from side effects as well as the rest....I've had to be taken off my steriods as I was hallucinating and unable to sleep.......
Thank you for sharing your problems it has helped me to know I'm not the only one to be beating myself up about not coping and worrying about doing 'normal' stuff

Love and Hugs Rachel

 

[MichelleAnn]

I just wanted to say Mooks, it took me a few years to accept I couldnt do it all, many panicked days and depression. I slept from the time I got home from work until the next morning, still having trouble getting around to go to work again and do it all over. My children never saw me, I could not be a mother, wife, cook and house keeper while working. I divorced then I had to leave my job and live on disability. The pay is much less which causes another stress but I had to do it to get myself well. My friends understand now that I cant be who I was before Lupus. Some friends I lost other friends I gained. Good friends understand and help. I wish you the best!! Take care of yourself!!

 

[nicky00]

Mooks..

You touched a chord.

Lupus can infect every area of ones life:sad:....

Despite having a great period of 'time off' with symptoms, Im back to feeling not good in the last couple of days. Its suprising how easily I have slipped into that tearful, even angry personality who feels at times out of control and worn down.

I think how crappy you feel eats into everything and its impossible to 'behave' and fit into this 'coping' 'cheerful' person.

I had a tearful rant with my husband this evening. Reading your post bought tears to my eyes.
I showed it to my husband .........just to remind him of how it can be.

To be quite honest who wouldnt feel crappy being so crappy.

Hope you get some relief somehow...The whole worlds feels better then.

Take very good care of yourself

Nicky

 

[Lily]

((((((((((Mooks)))))))))))) :hug: You have received some great advice which I agree with, this is not an easy realisation to come to and especially when you are so young.

I just wanted to add my 2 cents worth to the Azathioprine mention. If you don't start slow and work your way up then it will make you very ill in most cases. There's no way I could have taken a full dose up front, I started on 50mg and stayed there for a couple of months then increased to 100mg and they raised it to my current 150mg a few weeks after that.

When taking the 100mg I split the dose 50mg am and 50mg pm. Now I'm on 150mg I take 75mg am and 75mg pm. Some people take 50mg 3 times a day. If I don't split the dose it makes me feel ill too, but I'm ok with my current regime which I've been on for years.

Some people have to start as low as 25mg and work their way up. Without this many people give up a very valuable and helpful medication due to an initial bad experience and incorrect introduction of the med.

Feel better Mooks (((((((((hugs))))))))

love
Lily

 

[Douglas]

Howdy Mooks,
Although our situations are completely different (you are working, I had to take early retirement; you are female, I am male; etc) I almost became teary reading your note as, with minor changes to reflect the differences mentioned, I could have written the same sad story word for pathetic word.
SLE can truly be a spirit-breaker.
Hang in there. At least you are not alone.
May things improve for you quickly!
Douglas+

 

[elle-co]

(((mooks)))

First of all I want to send some gentle hugs your way.

Your post sums up just how horrible this disease can be, but please know that you are not alone in dealing with it. Your story is echo'd through this site and I am certain that almost everyone on here has experianced what you are going through right now. The most important thing to know is that it is NOT weakness. Us lupus are fighters but like all fighters we need a break sometimes!!!
Take care of yourself,

Elle x

 

[flutterbye]

(((Mooks)))

Just wanted to add hugs from me too.
I think we all understand exactly where you are coming from and can identify with your feelings.
Please be nice to you, it sounds like you are very tough on yourself, which I identify with, it is not a weakness to share with those close to you how you feel, and to seek help when you need it. I really do hope that things are looking a lot better for you soon, and that the Azathioprine will prove to be helpfull.

Much love xx