Pretending I do not have Sjogrens

[Tryfan]

All week since visiting the Rheumatologist I have been half congratulating myself that I was right about an auto-immune diagnosis and half not wanting to face it.  In fact, the same day as I visited the Rheumatologist, my youngest broke her collar bone, then last week the trains went up the spout and my husband couldn't get home, then my middle child started having prolific nose bleeds and my Asperger son is about to his exams and is under huge pressure.  I haven't got time to think about me and yet I think I need to.  I am worried that if I tell people, they won't understand and will give me buckets of sympathy which I do not really want.  It is only just hitting me that I have something I have to live with.  Any advice for these early days gratefully received...thanks.

[Linda196]

It seems like you're one who copes and deals with things, and this is just one more thing for you to do that with. It's very natural to go through the phases of grief when given a diagnosis of any chronic illness...denial, anger, bargaining, depression, and acceptance. They don't necessarily follow that order, and it's common and acceptable to step back and ahead, perhaps feeling you've finally reached acceptance only to "slip back" to bargaining or depression.

I hope you find comfort and help in the posts here, as you see how others deal with this, and read that sometimes it's OK not to deal with it for a while, or to pretend it's just not there, if you need a break. Just don't ignore your needs if you take a vacation from being a "sjoggie"...look after yourself, and you will be better able to look after everyone else.

[Tryfan]

Linda, thank you so much for that...you are very wise.  I do need reminding to look after myself and now I've found this site, I am sure I'll get support from reading posts.  Just needed the universe to acknowledge me!  Thanks again.

[Scottietottie]

Hi Tryfan 

Welcome to Sjogren's world.  I remember being round about where you are. Not long after being dxd with Hashimotos, my son went down with glandular fever, which developed into brain inflammation which left him incapacitated for 7 months. It was scary. There was lots to sort out like sick pay, college entry that had to be deferred and stupid beurocrats wanting things signed when he couldn't see to read or hold a pen steady at all. During the same period I picked up the SjS dx. Then my daughter got ill. She also got mono but again there were complications. She ended up in a heart ward overnight and when she came home developed jaundice, a UTI and infections in both ears and they couldn't give her painkillers or antibiotics because she was so jaundiced.

I really struggled to cope. Then it dawned on me that they were really ill but I felt that I wasn't that ill. I have a condition I am always going to have, which is not likely to get better - but I still am not ill like they were. Both of them had points where they may not have made it, as it were. OK - they're better now but both still suffer bouts of fatigue and I sometimes wonder what is round their next corner.

You do need to find some 'you' time though. You need some time to be able to really chill out - and time to sleep if that's what you need. It takes everyone different timescales to get to 'acceptance' - but it will happen.

Take care - Scottie 

[jonnell]

Hi I can relate to your son my son Michael has pervasive developemental disorder which is similar.  That in itself can take the tar right out of you,   Then my youngest jenna is 4 has sjs.   I cant imagine being sick on top of that.   You definetly need a bubble bath or a massiage.  Do you have anyone to help you or let you vent to.    Thinking of you   Hugs and Kisses  Jonnell and Jenna

[irish]

I am going to make one statement that I hope you will not take as being rude or smart alecky.



Do not worry about people fussing over you and giving you a lot of sympathy because they will not understand one bit that you are suffering. They will also not understand that you are suffering because "you don't look sick".



Everyone on here can relate to this statement at one time or another I think. It is extremely hard to explain to people what you have and how it affects you. Reason being, if you are so darn sick why are you standing here in the store buying groceries, or how can you take your kids to all their sports events??

The easiest thing I have found to explain to them is that I have an autoimmune disease that is a kissing cousin to lupus. This is a disease that you will read about in the womens magazines on occasion. Also, explain that it makes me feel like I got run over by a truck or a bad case of the flu and on a better day a mild to moderate case of the flu.

Just be sure to take care of yourself in between all the children's events. Been there-done that myself years ago when kids were young and I was almost too sick to take them to ER but hubby was gone. We sjoggies are tough people. We just keep on doing what we do best----surviving in spite of hardships. We have learned that we can do pretty much anything and everything because in spite of being so ill at times we have learned to "keep on trucking".

Now, make sure that you sit down and rest or even take a short nap every day if possible. Lay down and set an egg timer and get 30 minutes. It really can make a difference. Good luck and let us know how you get along. Irish

[harrigan]

Tryfan, totally understand where you're coming from.  I went to the Rheumy last month fully expecting the SS diagnosis, so came out thinking it was no big deal.  A couple of days later it really hit home and like you, I didn't know how to explain to people what I've got.   I ended up playing it down and pretending I was ok with it all.

But on here, none of us need to pretend.  We can post with how we really feel and all the insecurities about living with something that no-one inderstands.  This is the place to say 'How do I cope with this, as well as all that?' and find out that no-one copes with everything all the time.  But amongst us all, we have ways of helping out and sharing the simple and the profound!  Finding some quiet spaces for yourself each day is so important, especially with a hectic family life!  Looking forward to getting to know you better.  xx Ailsa

PS where are you from?  Tryfan is my favourite mountain in Snowdonia, thoughit's many years since I climbed it now

[Tryfan]

Thank you all.  I can relate to all you say. 

Harrigan, I was born in Llangollen and come from Welsh stock but don't live there now.  Think it's funny that I have spent many years trying to understand autism and raising awareness in the community and now I have something that I think I won't bother explaining to people....!  Hey ho!  I am a writer so maybe I could do it that way!
Positive day today!

Thanks again...

[jonnell]

Tryfan,  I did the same thing with autism, Michael is now 13,  and its very frustrating because now my daughter has a disease so rare in children there is not information or parents to talk to.  But Jenna and I have this site and all the wonderful people here.   Hugs and Kisses