So, you guys have already been a great help to me but here goes.
I've just been for my blood tests - so many, and on the way there I allowed myself to get really miserable and it was not nice. I am not going to live like that, Sjogren's or whatever else it may be. I have 2 beautiful children, a 3 yr old girl and an 18 month old boy, a fantastic sexy husband ;-) and I live in a country where I can be treated free of cost (UK), so all together life is good.
What I wanted to know from you is what things in life do you really enjoy? Do you have children? and if it's not to rude to ask how old you are?
Thanks in advance
Gem x
I like this.
Sometimes it is too easy to dwell on what's bad and forget all that is good in our life- I'm very guilty of this myself.
I am 43, have four biological children ( ages 23,21,18,and 15) and two step children ( 16,13) who keep me busy and grateful.
I love living on our active 150 acre farm. We have 8 horses,a large dog , 60 odd chickens and too many cats to count. The routine of feeding and caring for them gives me purpose and makes me feel needed. Free range eggs are the best.
I am an organic market gardener and love to run, hike and cycle.In my day job I am a nurse , co-ordinating perinatal nutrition programs for First Nations, Metis and Inuit ( I live in Canada). It makes me feel needed and helps me support our family.
I also love to knit. somewhat obsessively.
I also live in a country where all tests, specialists and doctors visits are free so I don't have concerns about those issues and am very grateful for that gift.
Gem, I am a 59 yo grandfather. I was in so much pain when my children were young that they referred to me as the "bear in the basement". Our youngest had night terrors so she slept with mom and I moved to the room in the basement. After the auto accident and severe damage to my spine with herniation and broken vertebra. The migraines were extreme and I could not stand light, sound, or cold. It took a couple of years for me to bring that under management. Then Fibromyalgia struck.
I would spend time with the girls when they were young watching TV programs that they wanted to watch. I would explain things that their programs would show to help them understand what was going on. Together we made videos of the plays that they were in. we created animated graphics for titles. I made videos with a brain trainer and fractal images to stimulate their creativity and that of their friends. We had to manage our finances tighter than friends of our girls.
The most important thing is to be there for them. Understand what they are into and doing. Know their friends. Listen to their problems. Gently help them when they allow you. Have fun times with them doing things that they like to do. They come to me for certain things and to my wife for others.
Even with these diseases, I have a great life - I can't complain.
I have an amazing husband I have been with for almost 25 years, the best 14-year-old daughter anybody could ever dream of, a comfortable home in a city I adore, a beloved mutt, and a horse who keeps me going even on my worst days, as well as a part-time career working with other people's horses, which is what I have wanted to do since I was 3 years old. Both parents are alive and well, and I have great friends. Oh - and a bookstore/coffee shop one block away! :D
Those are the things that keep me going, and support me when I am not doing well. I am so grateful every single day for them....well, them and my health insurance, LOL...
I love everyone's positive attitudes. I am going to be really honest and it's not a pretty picture.
The things I love to do I can no longer do. Love teaching, nursing, working, decorating the house, Thanksgiving, Christmas, and being with my wonderful kids.
I am barely able to hold my hands up to type for about a week now so I'll be glad when this passes.
One thing I try to do is get out of the house. I do the full makeup and hair thing, put on my most stylish clothes and show up to lunch with other empty nesters. They always say I look great, which is very nice to hear. WHen they ask how I'm feeling I lie and say "just fine, and how are you?"
So, I get out twice a week or so, just to feel normal. And that's a good feeling.
It's hard to be positive right now cause I recently found out I have osteoporosis. I was in the drugstore over the wkend and squatted down to look at something and fell over backwards...shocking! I lost my balance and couldn't recover. no injuries as I was already close to the floor.
So, right now, there is little to really enjoy. I did make plans to go to NY to see a basketball game with my son (big bucket list) and was frightened to fly alone half way across the US, but I made the plans just the same. Bucket list....wanna make memories with my son. And then we had to cancel it all due to the hurricane.
I am desperately seeking some enjoyment in life, but it is curtailed by my health. It's so true that when you have your health you have everything. I am comfortable, have a great husband and family, doggie, nice house, car, but it means little if you can't share it much.
I felt it is important to be honest. There must be others out there who are trying hard to find the enjoyment in life. Right now, it's mostly sadness. But I'm still making plans and not giving up.
I am thankful for what I do have. It could be a lot worse so I know I shouldn't complain.
We are hosting thanksgiving
I am a 69 year old grandmother and wife of 48 years with a chronically ill hubby. He has many health issues and he is also an autoimmune patient. We are certainly the pair!!!
I have had health issues that were undiagnosed since about age 20 and learned to live "on the edge" sort of. I never knew how I would feel and had to rest a lot. I didn't realize how much my health dictated my lifestyle until I got much older and looked back.
I always managed to keep track of the 3 boys and get them places plus worked, had a big garden and all that stuff, but I suffered a lot along the way and didn't sleep well either. I don't know how I got through all those years, but when we are young we can do anything.
Make sure that you don't worry about the house. Concentrate on the hubby and kids, meals, laundry, etc and teach the kids to help. They need to know that you are there for them and that they need to be there for you. You can read to them and get them to their activities. I used to take a book with me and sit in the car and wait. I sometimes took an eggtimer along with me to set in order to grab a quick nap.
Sleep and rest is so important. I always made sure to take a nap every day when I could. In fact, by noon many days I could hardly stand up to get lunch. Those short naps of even 30=45 minutes are life savers. When the kids are young you can lay down with them and nap.
You say no to outside activities and really don't have much of a social life in order to save the energy for the important things in life. Keep a few things that give you joy. Reading and Going to the library and crocheting are my enjoyment. Couldn't do that much until later years, but don't forget to nuture yourself in some way.
These autoimmune diseases can cause a lot of upset with our lives and my kids grew up thinking that I was always sick---well, it turned out I was. I felt so bad about laying around so much but at the same time I got a lot of stuff done when I was sick also. You sort of learn to put yourself on automatic pilot and just keep on keeping on. Good luck with this journey. Irish
Well as far an enjoyment - lots find something just to take their mind off pain and other medical stuff.
I have a small kitty crew that demand me feed them at a special time every morning, get in the way and frequently impede my typing ability BUT I wouldn't trade them for a million bucks. They give me purpose and enjoyment. AND as I kiddingly say "they are cheaper than prozac". LOL
I am age 55 and over the years I have learned to enjoy the little stuff. You work so much and run yourself ragged from piller to post that you miss a lot of things.
I just turned 42. I have a husband and two boys (14 &11). Working as a teacher keeps me going everyday, although I can't say I truely enjoy it anymore. I love to ride bikes, walk and spend time with my mom who is my rock. She is divorced and 76. She is more active than anyone that I know.
I also like to read and cross stitch. I enjoy my friends although some have wandered away since I have not been well. I have learned to enjoy "me" time - resting, painting my nails, cooking, yoga and watching the Young and the Restless.
I believe that if I focused more on me about ten years ago, things may have looked differently now.
Take Care
Winnie :)
Sadly it does depend on if I'm in a bad flare or not, but tight now I'm not and today thats what matters. I'm 50 and have 5 grown sons, 1 grandson 10 months old, a nephew who lives with me that I adore as much as my own children. A 2.2 lb skinny guy that loves to sleep with me named Sammy, (chihuahua), my brother whom I have grown so much closer to in the last year as well as his other sons.
We recently moved out of the boon dox back to the city where if I do have some extra energy I have lots more to choose from. Although ELO concert n chunky cheese have been rough, I think light and noise effect me negatively but only I knew :)
Most importantly I have a husband who is as close to perfect as he can be without making me mad. LOL no seriously he is awesome, even when I take life out on him. He doesn't always know what to do haha like any of us do? right. He loves me even when the brain fog gets everything wrong, oh ok occasionally I secretly loathe him for a sec or two but then I go right back to thanking my blessings.
I used to run, ski, play almost any sport even though I had osteogenesis imperfecta, no one told me not to...:) At 30 OI started catching up, no more skiing, basketball or running. Somewhere around 42 no more working, no many bad breaks.
I still love my life even though I miss parts of my past. I'm still trying to accept fibro n SjS, part of me is still in denial somewhat, but I'm working on it.
I get mad, angry, I pick fights with my husband, I stop and berate myself because so many others are worse off then I try to balance. I'm allowed to have bad times, mad moments as long as I remember how blessed I truly am!
XOXOXO
I am 59, and use to keep a tidy house, go everywhere even late at night if it struck me too.
Married to a wonderful understanding, but also sick man, and I have one grown son, and daughter in law. My son is a blessing from my first marriage.
My rock is Jesus. I now only go to dr. appointments, to visit son and daughter in law, other family, grocery store, drug store, well, you get the idea. lol....
I hurt most days, and have no energy. I started awhile back sewing/quilting, in summer tend to a few flowers, and count each day as a blessing just being here to be with my husband, son, and daughter in law.
I wasn't diagnosed with lupus until much later, and just keep on keeping on. My social involvements in life now are mostly being involved in sewing/craft swaps online. I do enjoy it though.
I did work as a special education teacher, and it was a very demanding job both physically and mentally. I loved working with the children, and still see this one family of children. Two twin boys are getting ready to graduate 8th grade, and I had them when they were in kindergarten through 6th grade.
Well, I hope we are all on here discussing this for many years to come.
susanep :)
When I am well enough I love a LOOOONG walk in the park with my dog. Especially when he gets to play with loads of other dogs. In summer before IBD hit I would quite often spend 3-4 hours chilling with my pup at the park, it was a great way to waste the days.
I used to love cycling and skiing but have had to give that up (for now, at least!) I also love photography but that's on hiatus.
At the moment my favourite hobby would probably be sticking on my big amazing headphones and listening to music on the couch. Keeps me going.
There isn't a lot I can do at the moment but hopefully soon I'll be back on my feet.
Hi!
I'm new to Sjogren's World Forums. I'm 30 years old, diagnosed with Primary Sjogren's a year and a half ago after several years of low immune system problems resulting in a lot of doctor visits and a ridiculous number of tests. Due to other complications, I am currently being tested for fibromyalgia also. Basically that means that I have good days and I have bad days. On my good days, I feel like I can take on the world (at least for a few hours). On my bad days, my entire existence is excrutiating pain and nothing else.
What do I really enjoy in life?! Being able to get out of the house, at least for a little while!! I have a desk job and try very hard to go to work every day just so I feel like I'm still a contributing member of society. I also have three Shih Tzus and make a point of walking them at least four times a day. I live in a very safe and secluded area with plenty of space to let them off the leash and just let them run. On days when I'm really hurting, I still make a point of going out with them only they run free and I mosey along behind at my own pace. This does wonders for my moods, for my self-confidence and sense of self worth, allows me to enjoy watching my dogs run and explore happily, and reminds me that I exist for someone other than myself!
I also enjoy quiet time. Snuggled up on the sofa with a really good book and my Tzus is very relaxing and de-stressing. They are fabulous lap dogs who love to cuddle and snuggle and snore contentedly for hours while I relax and read.
I've always been more of an introvert and socializing has never really been my thing. Yet surprisingly since my diagnosis and the worsening of my condition, I have often found myself a little sad if my family and friends are going out and I can't go with them. Despite my loneliness, I have also discovered that the extra stress of making myself get ready and go on days that I don't feel well only makes things worse. I am learning to accept those times and try to find peace in them.
Hoping one day, someone will find a cure for this and I'll be able to live again a day without pain! :)
Kidibelle, pets can be life-savers, no? So glad that you have that in your life. My husband throws a fit if my pets (dog and cats) are in the house. He sucks. :)
What I really enjoy in life are my sweet little girls. I love planning things to do that make their little eyes light up--art projects, fishing, swimming, reading, playing outside.
For myself, I love tennis. I love being really good at something and the thrill of competition and a little bit of exercise that doesn't feel like exercise. I hope and pray that I can get a good treatment going so that I can play again in the upcoming season that starts in February. Right now, I cannot play due to too many flares.
I also love intellectual challenges, word games, etc. My favorite topic of study is epidemiology and disease history. I have a soft spot for the plight of women and children in developing nations and like to keep abreast of human rights issues around the world.
Good day to everyone! Peace and hugs.
Quietdynamics...hmmm?
I like Quiet; in terms of a non-drama lifestyle, mentality. I have an artistic/ analytical mind...everyday is an adventure, with something to learn and ways to grow. From an early age I believed "life is a smorgasbord, with unfamiliar things for me to sample"..this is what I told my children. Since early childhood I have a compassionate soul, that is solution oriented, rather than commiserate. Thus, the "Dynamics", in a Quiet tone. I loved working with ADD students,and yes even the ones in the Juvenile Facility.
Yesterday I met a bank employee who needs info on ADD/Special Ed,for a product he is developing. I will send him some of my research papers, which are macro as well as micro in socioeconomic scope, psychology, etc.
I am a bibliophile, reading 3-4 books a week,(internet) a mixture of one or two fiction/doc, philosophy, global economics, lightweight quantum physics, art, sociopolitical ( Chomsky ) ...and I used to quilt (toyed with using fractals ..Joe ;) ).
* was really upset when I could not read (1 book a month SJS), comprehend ( almost 4 years of that..groan). Infinitely better now :D
love, love, love music...used to do Modern Interpretive Dance and taught Ballroom, esp Latin, when I was in college. Adaptation: sometimes at concerts I seat dance or stand and shake my now "flat asset". Enjoy finding ethnic festivals to attend,music, foods,people, language.
I did try a small online venture..and hope to restart in a few weeks..now that mental acuity is back; at least to rid home of stock.
So I am 57...mentally around 32, wisdom age 90s' ..lol
Today the sun is shining, I am sharing with you ...and life is good. May take granddaughter to story-time.
I am 59. Been living with this autoimmune since 98. Used to be type A personality I guess- worked full time once kids were in middle school, kept the house up, socialized, etc. Had to learn to let go and concentrate on most important things like family and my health.
I no longer work; collect Soc sec disability and take each day as it comes. I do what I can and feel up to each day. A positive attitude is my best advice of all.
I love to read; I make paper crafts like cards, journals, calendars etc. My faith is strong. I volunteer when my health permits.
I have a wonderful supportive husband of 37 years; two amazing married adult children( son & daughter); and three grandsons 18 months;12 yrs; and 15 yrs.