reimagining life

[AnneNeville]

Do you have any suggestions for good resources on how to structure your life around an illness like Sjogren's?

For the last five years, I've had my whole life on hold trying to cure crippling "anxiety" with "psychosomatic" symptoms. However, no matter how I tried it seemed to resist treatment. Everything fell apart, and since then I've been trying to pull it together again, with the idea that if I could just fix the anxiety, I would be all better, like I was before. There would be no mysterious sick periods, no crushing exhaustion mid-day . . . it felt like it took every single bit of energy I had to drag myself to doctors and psychiatrists and meditation and the gym, just so I could try to be normal.

Now, on prednisone (and prozac and wellbutrin, but I had those before), the anxiety is suddenly almost gone. The fatigue, however, is not. I am only 37, and my career has been moving at a crawl since I was 32 (when I started to change fields and got sick).

I am struggling to figure out how to reconceptualize my life. I've thought of myself as temporarily indisposed for so long, it's hard for me to believe this might be a new normal. How do you all cope with the reality of a chronic illness? Balancing work with fatigue? Hopefully I have a long and productive life ahead of me. I'd like to get out of the rut of thinking of myself as ill and unable to live my life fully (until some time in the future when I am well).

I am fortunate that my husband (who is younger than me!) has a good job with good insurance. I, unfortunately, had a career in theatre before, and I freelance write/edit now. I worry about us depending solely on hubby's job, but don't know how to get something similar without giving up on our quality of life (due to me being too exhausted to do anything but work, which was my life before five years ago).

Any advice or pointers or readings would be much appreciated.

[WhatYouSjo]

Hi AnneNeville. Welcome to the forums.

Many of us have gone through experiences similar to yours. I know I hated the term 'new normal' when my symptoms first flared. At this point, I have gone through the stages of grief into acceptance. That doesn't mean that I will give up on my hunt to find the best treatments I can so I can get as close to the old normal as possible.

Many of us use a variety of strategies to deal with our disease. These range from pharmaceutical drugs to supplements and alternative therapies, as well as lifestyle changes like exercise, diet, meditation, and counseling. I have a personal website documenting my own journey and treatment; you can see it in my signature below. My site also links to other resources around treatment options, such as LDN, helminthic therapy, and more. Several other members of this forum maintain blogs as well, and it can be a good way to empathize (virtually) with others facing similar issues.

Good luck in your own treatment! Unfortunately, doctors have few tools and often poor experience in treating Sjogren's Syndrome, but there are many people on this forum who can help with specific questions.

[Joe S.]

Survival. First bring your anxiety under control. I do this with Cognitive Behavioral Therapy (CBT). when that is under control you will experience less pain. "Feeling Good" by  David Burns is a good how to book with good exercises to help.

Your theater comment resonated with me as I have two daughters with AI diseases that are in theater. The oldest with degrees in acting, directing, and stage management went back to school for book keeping and works in a box office. The youngest majored in fine arts, and technical theater. with two masters under he belt she designs sets, lighting, and exhibits for Museums. What would you do if money were not an object? Look at this as an opportunity.

[Carolina]

Hi Anne,   We often call this 'the new normal', and this is how we begin to refashion our lives.

At least NOW you know: it's not all in your head, it is NOT your fault, it is NOT your weakness.  You have a chronic condition and there are treatments, supplements, that can help you.

Many of us find that: early mornings are difficult (sometimes the worst part of the day), BUT then we begin to feel better by late morning and have energy into the late afternoon, when we run down and must go to bed early.  Sometimes the nights are very difficult, and then the morning is hard.

But once I know that I will feel better as the day progresses, I can have hope.   Even in elementary school I finally figured out that I didn't need to stay home 'sick' because I could get going and feel better later.   As an adult, at a night Board Meeting, I would be feeling OK, and then at 9 pm 'I hit the wall' and was completely out of energy.

I used to say "I'm not a morning person or a night person, I'm an AFTERNOON person.  Little did I know that this is because of my Immune Disorder.   It affected my entire life, and I had no idea how much harder everything was for me than for 'most people'. 

And yet, I had two children, managed an MBA at 41 (while completely POST menopausal) and entered the work world of corporate America, and then a major medical complex, and finally a university where I worked in my professional capacity and then as a faculty/administrator.  I started the School of Business at our satellite campus.

At 57 I had major coronary artery disease (due to the inflammation of my Immune Disorder, I'm sure), and had three angioplasties and two stents.  Due to other problems I went into surgery 6 times in 10 months, and decided to retire early at 58.

At 60 I was diagnosed with Sjogren's, and after that I had one condition after another.  However, I still had a very rich life, doing volunteer work, active in a book group, bridge group, dinner group, political activity, etc.  And my French grandchildren spent 6 weeks every summer for 9 years with us, learning the American life and perfect English.

But finally the toll was too great, and I had some very difficult years, to say the least.  Now I have been diagnosed with an Immune Deficiency Disorder and have IVIG every four weeks.  This saves me from constant infections.  I am on low dose medrol, only 2 mg daily for two weeks, then 2 mg every other day for two weeks.  It makes a difference.  I also take 2400 mg of Gabapentin for my neuropathies, and that reduces my pain significantly.

Only the mornings are difficult as I wake up with myalgia (overall body pain). I turned 75 on March 2.

Anne, you WILL find your way,  you WILL find joy, you WILL find professional success, and you will find personal pride and accomplishment.

Here many of us have had the worst possible expression of Immune Disorders, but we are the exception.  Most people who have only Sjogren's Syndrome manage their disorder and have no increase of symptoms and no major difficulties.

The average person with Sjogren's takes seven years to find out what the problem is.  I hope that newer doctors may be more aware of the possibility of Sjogren's and act sooner.

You are young, but I doubt if you know it.  You have years in which to manage your life around this chronic but manageable condition. 

Please keep us posted on your progress.

Hugs,  Elaine

[AnneNeville]

The rhythms of life . . . I've always found that my mind works best in the early morning (though my body hates getting up early), and by noon or 1 pm, I collapse and am mentally and physically drained for the next four or five hours. I tend to get alert again around 6:30 or 7 pm and can go until midnight or later . . . probably how I survived in theatre . . . This made it really hard when I was in college writing papers AND doing theatre, because I would get up at 4 or 5 in the morning to write my papers, but I'd be in rehearsals until late at night! Fortunately, post-college gave me more flexibility with how I spent my days . . .

[Carolina]

So interesting Anne!  One very important reason why I did NOT choose a life in the theater was my inability to stay up past 10 pm.

Others were: I'm 5'10" and so would have had to play only 'character roles', and I never had the ego (yes me, with a big ego) to make it in theater.  And of course, there is way more talent in this world than there are places to actually be paid for that talent.

So your daily rhythm is so different from mine.  And that shows that we are all different, even with similar Immune Disorders.

You will find your way, and you already have been doing.

Hugs,  Elaine

[AnneNeville]

It helps that I worked backstage . . . never on stage . . . so the rhythms of rehearsal and performance suited me well. Rehearsals, requiring more brain-power, research, problem-solving could be done earlier in the day when my mind was fresh, while running shows was executing a routine accurately night after night, or responding to what I was seeing and taking notes, but the tasks did not require a great deal of original/creative thought.

Looking over the list of suggestions, my feelings are mixed. CBT, meditation, exercise . . . these are all the sorts of things I have been trying for the last five to ten years, to little avail. My anxiety (that monster) was just too out of control, and every time I got on an even keel again and felt I was making progress, I would get sick and knocked down and have to start over. I'd have months of achieving really well, then months of terrible fatigue and angst (because I thought the fatigue and illness was not real).

That said, the anxiety has been the real monster for me. If the prednisone and plaquenil continues to hold that at bay, I have a lot more hope for significant improvement.

Do you find that routine helps you? Do you stick to a rigid one, or are you more flexible? I have always avoided routine like the plague, mainly because if I didn't feel up to sticking with it, the backlash anxiety was so terrible. Yet I think that structure would help me.

[Pete0211]

I've found routine to be a two edged sword. One side certainly provides an easy-to-follow-ordering to life that helps you get through, but the other can couple with the anxiety monster to lock you into that routine and make you anxious if you perceive variations from the routine. I'd say it's good when things get bad and you need that ordered routine to get through the bad times, but at some point you have to start (in my opinion, at least) stretching beyond the routine to continue the fight against that anxiety monster. These are likely battles you are used to by now as it is.

[AnneNeville]

It certainly is, though I feel more hope now!

[SjoDry]

Anne,

You can try a routine. The problem is that we live with roller coaster days, up & down and you never know which day your're going to have. I just go with the flow pretty much.

I am trying to be more positive in not focusing ( or I should probably say hyper-focusing ) on how badly I feel. I started blogging about my journey with Sjogren's and found the writing to be therapeutic (mainly because I pretty much have a sense of humor about everything including my chronic illness).

My husband & I own a business. I keep a lawn chair cushion in my office for the days/moments I need to have some brief rests.

Mainly I have a determination about not allowing chronic illness to become my identity. I am meditating and learning how to be more mindful.

I think that the combination of meds, mindfulness and medication is about the best I can do. I would add that connecting with other Sjoggies helps. I facilitate a SS group where I live and follow this and one other forum.

It is journey of trying to balance chronic illness and making life as normal as we can.

Good luck in finding your balance.
SjoDry

[A Mom on Spin]

Anne,

I, too have suffered from debilitating anxiety.  Aside from medications, like Xanax, which I don't know if you use for situational anxiety, I have found that the workbook (and I do mean work) "the Anxiety  and Phobia Workbok" has been a big help for me.  I have also found that many many mindfulness  techniques help me through difficult situations.  I have never specifically connected my Sjogren's with my anxiety - more so with my depression which I also take meds for. 

Mindfulness teaches you to be grounded in the moment, without negatives thoughts and images getting in the way.

Wishing al, the best for you,

Liz

[AnneNeville]

Liz, I actually used "The Anxiety and Worry Workbook" which is, I think, the same series but geared towards General Anxiety Disorder. It's a good book--but at the time I was using it, I was trying to avoid additional medication and CBT alone was not enough (I was too anxious! The worksheets overwhelmed me!).

Prozac has been great for the anxiety, but it is somewhat drying. Probably just a price I have to pay.

SjoDry, thank you for the encouraging words. I am glad that you are finding a way to work things out with your business. I freelance from home, but very part time. I had assumed at some point I would be OK again, and would end up in a more regular job, but now I'm reconsidering. Perhaps I can find a way to write and research for $$, but on my own schedule somewhat.

[Carolina]

Hi Anne, and all.

I want to say this again:

INFLAMMATION causes PAIN, DEPRESSION, and PROFOUND FATIGUE.

Sjogren's causes Inflammation.

Therefore, if you have Sjogren's, to some extent you will have pain, depression and fatigue.

These are the result of inflammation.

Of course we can have Pain and Depression and even fatigue for other reasons, but inflammation is a direct cause of the three conditions.

This is why Prednisone will often have a 'miraculous effect' because it is a strong anti-inflammatory.

So are the NSAIDS, tho' not nearly as purely strong.

So often we have anxiety or depression, and it is so hard to separate it out from ourselves.  It seems like it is who we are when it strikes.  And yet, I have seen depression come and go directly related to inflammatory events.  And I saw that is is external to my core self..it is caused by the inflammation.

Be gentle with yourself.  And kind.

Hugs,  Elaine

[AnneNeville]

Thanks, Elaine. I had a chat with my rheumatologist on the phone yesterday. She sounded a bit surprised by the immense relief I have reported in terms of anxiety. I guess the connection is not well understood.

Of course, my psychiatrist was also rather baffled a year or so ago when I told her that I really, really thought there was a connection between my anxiety and my worsening allergies. And my allergist was likewise unsure, even when I reported having had a huuuuuge anxiety response to one of my immunotherapy shots.

We really do have to learn to advocate for ourselves, don't we?

[irish]

I am totally astounded that your doctors do not understand that depression and anxiety are part of the autoimmune process. Sjogrens is well known for causing anxiety and with anxiety is the depression. They travel together. I am 74 years old and have had symptoms since I was 21 years old. One of the first symptom I got besides fatigue and weakness was severe anxiety and the accompanying depression.

Sjogrens patients seem to have more severe anxiety than even lupus patients according to all the research I have done. The good thing is that with all the counseling, etc that one can get there are also antidepressants these days that can treat the anxiety more specifically. Zoloft is one of these drugs.

One of the main things that helps with a lot with any chronic disease is acceptance. The struggle that one goes through to accept an illness is different for every patient and the process depends a lot on our personality and our expectations of ourselves. If anything, chronic illness will stop a person in our tracks and bring us down to earth in a hurry. It makes us evaluate every aspect of our life and makes us decide what things are the most realistic for our circumstances.

We have to plan these life changes with our spouse as it can affect finances and way of living. The best thing I advise people is to pay down the bills inand even change how one lives in order to have a less stressful existence. This way the health insurance is there hopefully, the income whether one oe the spouse and a part time job for the chonically ill person. If you don't set yolationr expectations too high you will not fail as often.

The main thing is to stay as healthy as possible as one of your goals and have a work experience that enriches you but doesn't sap your energy and ruin your relationships. It is better to live frugally to some extent and enjoy family and friends. Money helps but doesn't cause happiness. Good luck. Irish