What are your Passions, hobbies and distractions?

General
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Here's the thing

We no doubt all have days where we want to do absolutely nothing. And I mean nothing. Sleep, or chill out in front of mindless television programs and there is nothing wrong with it! Sometimes it's what we need.

Other times, there are things we want to do.

In my case it's photography and gardening. Both have their challenges in the face of my limitiations, but it's equally important to me and my mental and physical health to keep doing them. I've had to find ways to overcome and cope with the symptoms of this condition to keep doing what I love, but where there is a will, there is a way.

I can't do the mountain climbs or long treks loaded up with backpacks of heavy gear anymore, but that's okay. It's given me a chance to discover the hidden gems and beauty of my local region.

What you find that inspires you or gives you joy doesn't matter, as long as you keep doing it. I'd love to hear from others about what you do for soul food and healing.

Tog

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Pebbly Beach, Forster, New South Wales, Australia, dawn. *sigh*

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I used to knit but my fingers will no longer tolerate holding two needles. I used to know the basics of crochet and maybe should explore that. I love being able to see my finished work and feel real pride.

I just joined a book club because I used to love to read. My mother was like that too and I would always read her books after she finished. The last year has left me with too little energy and focus but now I am starting to do better and think it’s time to dust off the books.

Thanks for the topic.

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Listening to music and singing. There is nothing better than singing as loud as you can to some great songs from the 70's and 80's!! Looking through photo albums is also a great way to spend a couple hours of a rough day.

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I like to sit outside before the sun comes up and just enjoy every thing around me.

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Hey Tog,

Nice pic! You must have a fantastic camera to catch that raptor in flight! Reminds me that there was a huge buzzard circling the house this afternoon when I went out to the car! There's my sign!

The beach photo is breathtaking! What a magical place! I long for the beach, but it's too far to ride, so this is good for my soul!

I spend a great deal of time volunteering on various Ben's Friends groups, I always encourage visits from the grand kids, they are surely good for my soul, even though they quickly wear out the body!

I have a tough time riding in the car, even with the anesthetic spray, but I love to be on the go, love to shop, in stores, flea markets, yard sales, fabric stores, antique stores, junk shops...I adore old furniture, clocks, dishes, hand painted porcelain, crocks, bottles, hand blown glass, cut glass, art glass, textiles, and am always drawn to the unusual.

I like to sew, nothing complicated, just curtains, table runners, and used to make halloween costumes. My grand sons have tampered with the knobs of both machines, so there are projects unfinished. I have to be in an extremely patient mood to attempt to straighten them out, still working on that!

I love to decorate, but my moving furniture around days are certainly over!

I have collected books all of my life, and though I've had to thin them out over the years, I am very proud of them, and though I have a problem retaining information these days, still love to spend a day, a week or sleepless nights visiting them. Most are dry history on ancient civilizations. Of course I love all of the TV specials involving that topic.

Love to hit the couch and watch good movies with my mom. I used to love to cook and throw huge dinners Martha style with the linens, crystal, china and lots of good food, but lack the endurance these days, so I've simplified things, and have learned that it's okay to use paper plates too, beautiful ones, of course! I keep an eye out for the lovely paper napkins too!

I love spending time with my best friend, and am over due for that, we've been tight since the seventh grade! She suffers from MS, and has 5 grand kids, so it's not as often as we would like, but when we're together it's like we never missed a beat!

Great post Tog, thanks for adding this!

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I still can use my hands so I knit, sew and am a beginners weaver. Love to read. My concentration is so bad I jump from one thing to another though.

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You don't know how lovely it is to see all the responses to this post, and the amazing and beautiful variety of things you all like to do that give you enjoyment and satisfaction. We all know that there will be things we can't do anymore, but it shouldn't stop us from exploring other options.

Why? Because we are whole people, not a painful joint, or a dry mouth. We should have our own way of seeking or creating more balance in our lives - a life that shouldn't be defined by our conditions. I know from personal experince how easy it is to be overwhelmed by this condition and everything awful that goes with it.

I am not embarassed or ashamed to tell you that I suffer from (and have for quite some time), clinical depression. I have been working very hard to recover from my most recent descent into darkness, and I am happy to say that the past three months or so I have felt better mentally and emotionally than I have in many many years.

There are several reasons I wanted to share this with you. Firstly Sjogrens patients are frequently known to have depression as an aspect of their condition. I personally don't know which creates which, and in truth it makes no difference. What matters is that if you have depression the first step is to recognise it for what it is, accept it has happened, and seek help from people properly trained in dealing with it. We have all these doctors, dentists, pain specialists, etc etc. but I rarely hear anyone speaking about their mental health carers - have you noticed that too?

Depression and anxiety should no longer taboo subjects in our society. We should be able to freely and openly talk about it, and receive and give support. I recognise and accept that there are people who simply don't want to engage in discussing it on any level, and there are also people including some friends and family who simply won't /can't accept or understand it. We all know the attitude of 'Oh just get over it' with our medical problems, so it's easy to see how that kind of thinking and attitude is given to psychological ones. It's not helpful.

What does this have to do with my original post of hobbies and passions?

The short answer is - the mind body link.

Creating and experiencing pleasure and happiness (even the smallest things) in your every day life will not cure you or necessarily improve or ease your symptoms (though you would be surprised how little discomfort you feel when you are singing a bopping tune at the top of your lungs in the shower), but the feel good chemicals your body produces when you are in a 'happy state' can go a long way towards helping you cope.

I'm not sure whether what I have written is coherent and will make sense to you, but if it is/does, I am suggesting that you be kind to yourself, give yourself permission to enjoy things, find something to do on a regular basis that engages and brightens your day. A part of looking after the whole of you, for your own sake.

Love

Tog

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Ps I apologise for the formatting of my post above, for some reason my paragraph breaks won't work.

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Hi Jude, thank you and good on you for having the courage to express what you are going through. I know how hard it is to say it out loud even in this very supportive and closed environment.

Firstly, I am glad you have been diagnosed. That is a big step in the journey, and in a really weird way it gives us a sense of justification for all the (for want of a better word) crud we have had to go through to reach that point and to get appropriate treatment and care. Like for many of us, you probably now understand a lot of your symptoms from before your diagnosis, it helps to make sense of it all.

I would love to tell you that the frustrations and fears will go away, but I don't think I can. I can say we tend to get better at coping with them, they ease and change. And in a strange way it makes us better, kinder and more adaptable people. I do know with certainty, that having people around us who understand (as much as someone who doesn't experience it can) and support us is very important. Not everyone will probably be able to give the emotional and mental support you need but each in their own way can contribute - sometimes all you need is someone to listen to you have a self-pity session to let it out, and that's all they need to do.

I hope you have talked to your doctor about the anxiety and depression - they can be very helpful and understanding in getting you in touch with the appropriate people. It can take a few tries and 'try outs' (some people you don't always gel with, so it's perfectly valid to consider trying another).

As for coping one day at a time - there is nothing wrong with that. One step at a time. You can only do what you can do, nobody would ask any more of you than that. The people here and the message boards are a great thing. So hang in there and be kind to yourself.

Cheers

Tog

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Nice to meet so many people on here who know what you are going through. I was diagnosed with Fibromyalgia about 20 years ago and last year was diagnosed with Sjorgrens, reynaulds, and UCD with possible lupus. I used to own an art gallery and gift shop and taught beginner art to adults and kids but had to give it all up as my health got worse. I still love to draw and paint and when I get the chance I am thinking about giving personal at lessons in my home. I enjoy working on puzzle games on my kindle and visit Facebook. On my off days I enjoy a good movie or two. I’m very blessed to have a very understanding and supportive husband of 44 years.

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Thank you Tog for helping us all remember that small pleasures need to enjoyed or remembered. I used to embroider beautiful baby quilts but have not been able to do that for many years. However, I can still make jewelry, it just takes me much longer, and that is OK with me. I love to sing and enjoy listening to music from parents' era (40s) through the 80s. Nothing can lift your spirits like a Frank Sinatra croon or a remake of delicious Michael Buble!!!!! I do believe I am drooling all over myself!!! I enjoy reading and always have, I got in trouble in 7th grade for reading Hawaii under my sheet until my Mom discovered me at 2:00 AM. Now I use a Kindle and prop it up with this nifty triangle pillow I bought online for $15. Thanks for making us remember the 'good stuff'

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Tog, you are so right!

I have been dealing with anxiety, panic and depression for years - long before my Sjogren's symptoms began. And in many ways these psychological issues are just another "invisible illness" that others just don't "get" because there are no outward signs. A double whammy so to speak. . .

And since I have been out of work on disability - and have lost that sense of accomplishment and positive feedback that came with my job - it's hard not to become overwhelmed and overly-focused on this disease. Still, I try hard to fill my free time with the things I am passionate about - reading, writing, and music are my top three - and have found that meditation (in my case I use a "centering prayer" method) has helped in a big way. Luckily for me, these just happen to be sedentary hobbies which I can still continue despite joint pain and fatigue!

I am also very interested in directing some of my energy to Sjogren's support and advocacy. Just haven't figured out how or what path to take yet.

Thanks for this discussion. It's good to be reminded that we are more than out illnesses!

Liz

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Great discussion, Tog. I like art, dance, birds, bugs, and plants. :)