What is that about

[ruby52]

I see the Rheumy again next week and I need some fresh insight on this.The printouts on Fibromyalgia and Sjogren's all end with statements about these illnesses not preventing you from having a normal life.Everything I read says that I've noticed.Am I wrong to feel insulted by that statement?It makes me resentful and angry and sometimes guilty that I am preventing myself from leading this "normal"life.Is it normal to dread family visits because I'll go into a flare,or to stop attending church with DH because the lights and people with perfumes and scents set my asthma off,or I can't walk very far before I become exhausted,balance problems and back and leg pain with weakness.Those are just a few of the symptoms we seem to have and when I read normal life it just is not true in my opinion.Why not restricted life or challenging life?Something besides such an untrue statement that makes me think I can get up and go about my business routinely.I was thinking of venting this to my doc about her pamphlets but maybe I should check myself and look at it differently.
                                                             Ruby

[Linda196]

First thing is to determine what a "normal" life is to you. Does that mean you can pick up and do whatever you want, whenever you want, with no repercussions or planning and be completely pain free always and forever? If that's the case, I don't know any "normal" people.

If it means you can work, earn your living, manage all your chores and still feel well and not tired, again, not many people fit that role.

For me, "normal" means I can get through my day, doing the necessary things but sometimes having to plan so that not too many "necessaries" land on the same day, planning so that I get a rest day between days that require effort, and, unfortunately, giving up my job...and when I think about it now, 4 or 5 12-16 hours shifts every week, often with less than 8 hours between them (and travel time was 2 1/2 hours leaving 5 1/2 hours for family, chores and rest) really wasn't "normal" and shouldn't have been something I expected of myself.

With every illness, there are degrees, and if those pamphlets state categorically that everyone with SjS or Fibro can continue their lives unchanged, then the pamphlets need to be reviewed and redone. See if you can find out who produced them, and if it was your doctor himself, by all means confront him. If it was a publication from an association, write to them and let them know that their information is misleading and wrong, and is a disservice to patients who have these diseases because they are held up to suspicion and ridicule when people believe them.

Most importantly...don't feel guilty! You aren't holding yourself back from a "normal" life, SjS is!

[wednesday mc haggis]

ive not seen any leaflets if it werent for the ent and buyign books and here id see nothign about it.

  i dont know i guess maybe with 2 kids and a house to run and feeling poorly to sat least i dont have the energy to think much about it, maybe i should .
I guess im lucky ( weird thing to say considering)  one of my friend sis being tested for lupus and other AI`s, one is hypothyroid and at 34 they keep saying we will just wait till it drops to blah blah and we will treat it, meanwhile she is 4 stone heavier and no energy and depressed. One of my friends has crohns but is stable , and one has endometriosis , so i dont feel that abnormal, beginning to think everyone is lol.

  I do miss my old life, where i worked and seen to kids and ran an ebay shop and travelled to see friends, now dinner and rounding kids up whacks me .

    Normal , is like to know what that is, is normal starving in africa?? is normal tibet being occupied ? , is normal lads stuck in forces being away from family weeks, months on end?

I tend to think normal is as individual as SJS , as linda said depends on what it means to us all, ourselves.

  I dont get as angry with this illness as i do ppl thinking i am my old manic self and can run after them like i did, id just like to swap bodies with some ppl i know for a day, wouldnt that be a thrill ??  well possibly not for them lol

  I do understand that you are angry to be clumped in with an attitude that says your washed up , were not each of us has something to teach the ppl in our lives, nothing happens for ne reason in my opinion, there is always a bigger plan

T x

[genko_b]

There are some folks whose pace of life is not slowed even when they are diagnosed with Sjogren's. We often hear from folks on here that they have stabilized on medications and have had a long stretch without difficulties, and plenty of energy. We usually hear from them when they have flared again and come back here needing support and understanding; otherwise they do not spend time here. There are probably many people who fall into this category of being able to live "normal" (that is, meets expectations) lives - we just don't hear from them here.

I spent a good twelve years after my rheumatoid arthritis diagnosis quite stable on medication, and didn't think of myself much as sick. It was only after I had to change meds that my long run of good days stopped. And for a long time after my Sjogren's diagnosis I mostly had only dry eyes to deal with, and drops kept that under control. I feel very fortunate that I was able to keep going with a full-time job and young children, and have only had to really slow down once my kids were grown.

Now by most standards I am pretty disabled. However, it does not keep me from enjoying my life as it is. This is "normal" for me now. The problem is that word, "normal." It immediately sets us up to think in terms of "ideal" - that kind of picture-perfect life on TV that no one really has.

Your life is your life, that's all. Sometimes we can cope with it and sometimes we can't, and have to adjust our activities to make it manageable again. The main thing is to do what we can, not to do more than we can manage, and help each other out when possible. When we label ourselves we short-change ourselves.

Genko

[Scottietottie]

Hi Ruby 

I certainly found the leaflet given to me the day I was dxd was misleading. It made it sound as though SjS was a minor inconvenience. This was an official NHS leaflet.

I think it was trying to be reassuring but what really bugged me is that the hospital doctors appear to believe their own leaflets. Now that's scary!

I also think that 'normal' is a difficult word though. I'm not sure what normal is at all. I know that every time I had a child I had a whole new 'normal' to contend with. There are also age related 'normals'.

If you ask people how normal they are - most people are a bit unsure!

Take care - Scottie 

[ruby52]

Yes Scottie that's exactly the right words for what I read,minor inconvenience.That is what I had a problem with.If my Dr. can understand why that bothers me she's a keeper for sure.I do try and accept this new normal for me and I do well enough when not in a flare.I just don't agree these illnesses don't effect your life enough to mention it in printouts.

[Scottietottie]

Hi Ruby 

I hope your doctor is a keeper! I'm not sure about mine. I liked him to begin with but I'm not sure that he 'joins up the dots' and I also think he believes his own leaflets too much!

Take care - Scottie