|Posted: 3/30/2013 2:47:33 PM|
I don't know if any of you remember me... I wasn't one to post much on these boards; yet I was here every day.... Last June I received a devastating diagnosis of MS... Then, in September I had a horrible relapse. I couldn't walk, use my hands... really I couldn't do anything at all.
I am now back in control of my body (sort of); but have been left with vision issues and massive levels of pain (everything hurts, even sitting still), and the doctor's aren't sure if any of is coming back.
It kills me to go by my scrapbook room, seeing it exactly as I left is all those months ago. (I have attempted a few pages, but the pain gets to me every time). I want to scrap... I want to create! That is what I was made for and what made my life worth living.
I guess my question is, have any of you gone through anything like this, and how do/did you scrap through the pain and the fact that your old methods of creating just don't work for you anymore? I want to get back something that I love... but the pain makes it so hard. Any advice would be welcome.
|Myblog: Odd Bird Out
"My art.... My art keeps me sane." - scanners (1981)
I'm just a pea:)
Loc: *Sunny Southern California*
|Posted: 3/30/2013 2:55:47 PM|
Can you switch to digi?
I know it's not the same, but at least you could still create.
Have you looked at the digi gallery? They have the most beautiful pages there
Loc: manheim, pa
|Posted: 3/30/2013 3:01:57 PM|
If not scrapping perhaps Art Journaling... You can combine scrapping but maybe that will be less pain and still creative.
|Posted: 3/30/2013 3:02:47 PM|
So sorry that you are going through this. I remember watching an episode of Scrapbook Memories t.v. Show a while ago and there was a woman on and she was showing scrapbook products that she uses since she had MS. Things that were easier for her hands, and things like that. She had some sort of scrapbook group or products, but I can't find the name. I have been looking,but have not found it. Maybe if someone else knows of it or can find it, it may be of some help. I will keep trying to see if I can find it later. I just thought that it may give you ideas to make scrapbooking less painful for you.
|Posted: 3/30/2013 3:14:32 PM|
Okay, it is Season 12, Episode 1 of Scrapbook Memories, scrapbook products for people with disabilities. The lady was a guest and it was a segment on the show.
likes shiny things
Loc: Ontario, Canada
|Posted: 3/30/2013 3:24:11 PM|I'm so sorry. Living with chronic pain must be so draining and difficult.
I have sciatica and sometimes standing at my desk scrapping causes a horrible flair-up. I had a really bad episode last night, and kept having to call DH to come and rescue me, because I was "stuck" in pain and couldn't move or do anything to relieve the pain. You just can't scrap like that.
Is there any type of desk or chair set up you could arrange to make working easier? Do you have good days, when you feel better? Maybe you could Pin and digital scrap/plan when you aren't able to work, and do actual scrapping when you can?
Love the idea of finding accessible tools! How nice to know there are products like that out there.
|Posted: 3/30/2013 3:41:28 PM|So sorry you are dealing with this. i think being able to come and post here at the board will at least give you some measure of support from your pea-friends.
I would contact ( if you haven't already) an Occupational Therapist. That's who would help you find ways to perform your daily activities and hobbies in a manner that might help. take good care, and keep coming here....and posting!
|STAMPIN' UP demonstrator! Peamail me!
Silhouette Cameo lover!!
|Posted: 3/30/2013 5:03:49 PM|
My mom has arthritis and has special scissors that are supposed to reduce pain from Fiskers. She has major issues with cutting causing pain.
|Go confidently in the direction of your dreams! Live the life you've imagined.
Henry David Thoreau
|Posted: 3/30/2013 5:20:54 PM|
I have fibro and chronic migraines. I also have a weekly scrap date via Skype with my sister. When it's just too much for me to scrap with her, I pull papers to go with photos or choose sketches to go with photos while we chat. On days when I am feeling better, I know that I can make some real progress when the time consuming process (for me!) of choosing papers and design ideas is already done.
|Posted: 3/30/2013 6:47:27 PM|Wow, I sympathize with you and am sorry for what yout are going through.
I have tendonitis flair ups in my elbows, which effects my scrapbooking when I overdo it. I understand you just want to create and it is soo frustrating to not be able to. My advice to you would just be to do a little bit at a time and try to relax about it. Tension causes a lot of problems for me, cuz I tighten up my shoulders, etc. Doing just a little is better than nothing and that bit of happiness will make you feel better and them maybe over time you can do a little more.
To see that others have pain issues makes me feel not so alone and hopefully it will do the same for you. I thank you for starting this thread and hope you feel a little better everyday!
Artful Scrapbooking and other fun stuff.
Loc: Cheshire, UK
|Posted: 3/30/2013 8:05:19 PM|
I'm sorry to hear of the pain you're in.
I can sort of empathise - I have severe RA, and have finally accepted that I'm stuck with it.
I've just re-started scrapping after a 5 year break. All my creativity disappeared initially, and then when it came back I was constrained by having useless hands.
Digi scrapping would be an option, as would really researching products like scissors that are designed for those of us who don't have hands/arms that work properly.
I've had to change my style a bit - my LOs are much simpler now, as I can't do the hand cutting, writing or drawing that I could do previously. Are there any tools (like the machine-thingy that cuts out letters, my mind's gone blank!) that would help?
You're still in the early days of absorbing the change to how you see yourself. It helped me to just create a LO, even though I wasn't particularly pleased with it,and it takes me so much longer as I have to stop and start depending on pain.
It sucks but I find that the creative outlet is worth the extra pain, I hope you find a way forward that works for you.
Sleeping with a Serial Killer
Loc: Big Bottom Valley
|Posted: 3/30/2013 11:31:20 PM|
No advice, other than what has been given up thread, but I wanted to offer my encouragement and support.
And a gentle ((hug))
|*********Sue Who? *******
Reality is made up of words.-Ferdinando Buscema
Words are hard.-Hannah Kelly
NSBR: "We're like a big damn disfunctional family. We'll beat the crap out of each other, and it's ok, but dammit, if an outsider turns on one of ours, we circle the wagons." -Free~Bird
Used with permission & with 9% royality fee paid annually. Starting next year. Honest.
Cat E. Clysm
Loc: Northern California
|Posted: 3/30/2013 11:57:57 PM|
I am so sorry that you are having to deal with pain, learning to live with it and work around it. I understand your frustration, and probably anger (why me?) because I too have chronic pain, from RA, Lupus, carpal tunnel, degenerative joints, and some other problems. It has been terribly difficult for me to ACCEPT my disabilities. I just recently "graduated" from a cane to a walker, so I do understand something of what you're going through.
While I still want to scrapbook, mostly I don't have the energy to attempt it. My Cricut is a big help, and it sounds like there are other tools that might help you. When I cannot scrapbook, what I do enjoy is making page kits. Then when I can scrapbook for a few minutes, I'm ready to go instead of wasting my little energy pulling supplies together. Maybe there are simple parts of scrapbooking that you can do, that will be enjoyable, like digital journaling, or exploring digi scrapping.
Hopefully the moral support and suggestions from the Peas will be helpful, and I sincerely hope you will be able to resume scrapping in some form,a nd that it give you enjoyment.
|Posted: 3/31/2013 1:48:18 AM|
I found this link about the lady who scrapbooks with MS that was on the show.
|Posted: 3/31/2013 5:25:16 AM|
hi, i was diagnosed with spinal tumours and given 12 months to live, thankfully i have survived, but i have had several surgeries and now live with chronic pain
firstly, get a pain specialist who can prescribe the best meds for you anf for you to be able to function
next - speak with an OT or physio about modifications
lastly - get and scrap, maybe not the way before, but in short bursts, use a cutting machine, get family tp do fiddly stuff, but do it... you will feel better for it
for me, i tend to lose myself and forget i have so much pain
goodluck with your scrapping and stay positive
|Posted: 3/31/2013 6:16:18 AM|I'm so sorry OP. I have PsA ( psoriatic arthritis) ,fibromyalgia and some other issues and although my arthritis is pretty "good" right now , there's been times when I couldn't scrap and have felt exactly how you described!
Going digi would "get 'er done" and there are some beautiful pages but I have always gotten more satisfaction out of paper and glue!
I don't know if these would help but I use the Fiskars squeeze punches for my corner rounder and tab punches. I don't "fussy cut" anymore because my hands go numb and my LO's are simpler . I also do PL and that can be as simple or as creative as you want but I still get that "scrapping high" from my weekly spreads.
I hope this flare slows down for you some more and you find some relief. It is SO depressing to be in chronic pain! Hang in there
|Posted: 3/31/2013 10:46:57 AM|
My relative deals with chronic pain and I've seen how it alters every facet of life, including beloved hobbies. I'm sorry you are going through this.
When writing is difficult check out dictation software. Dragonsoft is available as an app so it can be tried on the cheap. It takes some practice and sometimes a little editing to correct but helps with journaling. The have specials often for PC version, I think I paid less than $75. You can put the text from it into word or other software.
Loc: Spring Hill, KS
|Posted: 3/31/2013 11:50:50 AM|
Project Life is a good place to start. Keep journaling cards with you so if you feel like doing a little memory keeping, you can. If you don't have a smart phone yet - get one! If you get a wireless Selphy you can print from your phone and then it is just a matter of sliding pics into pockets and adding the journaling cards.
Good luck. With some modifications to your routine you will be back to scrapping in no time!
|Posted: 3/31/2013 12:30:40 PM|I'm so sorry you have to deal with that
I have arthritis, and am waiting on my "official" Fibromyalgia diagnosis, but I know I have it. Some days it's super tough, and I find I just have to make the time when I'm able to.
I think the idea of pocket scrapbooking might be a good idea for you! Not even as strict as project life if you don't want that, but as simple as sliding pics and journaling cards into the pages might be great option for you to still tell the stories you want to.
Big HUGE (gentle) hugs to you.
Ancient Ancestor of Pea
|Posted: 3/31/2013 12:39:18 PM|Hi Nini! Welcome back to the Pod. I'm so sorry you are struggling - being in constant pain is incredibly debilitating. My heart goes out to you!
I went into heart failure when pregnant with our youngest and have been left with a rare heart syndrome that has me essentially bedridden, on oxygen and requiring morphine to deal with the angina. Frequent migraines have also become an issue as a result of living for so many yrs with this syndrome.
For me, scrapbooking is very therapeutic! I love the cheery colors of the papers, and I love thinking about combinations of patterns. But the very best part for me is going through old photos and deciding which ones have a story I want to tell.
As I look through the pictures of our lives, I feel so blessed! The pain and extreme exhaustion are still there, but I'm reminded that my "glass is still half-full"! I have an amazing husband, 3 incredible kids, and an extended family that are truly wonderful. Those pictures transport my mind away from the pain and let me remember times of my amazing childhood living in a 3rd world country. They take me to my wedding day, or to Christmas memories of excited little daughters and I look forward to making countless more beautiful memories for yrs to come with these people who so enrich my life!
I scrapbook from bed. I have a glass mat that I hold on my lap as a "desk" and the wall along my bed has shelves with baskets holding my supplies. In my healthier days I could make a layout in an hour or two tops, but now it almost always takes me several days.
I changed my paper cutter to one that I can handle easier - my old one was just too heavy for me to move around from the shelves to my lap table and back. I've also found it very helpful to helpful to have a desk drawer where I can just easily slide my work-in-progress out of the way. I work in short bursts of time unless I'm too tired to sit up in bed. It now takes close to 10yrs to finish a page that I used to create in 2 hrs, but that's ok. I'm still getting to create and I don't have a deadline. The page is done when it gets done.
I think you'll need to just figure out for yourself which tools are awkward now based on your unique preferences/limitations and ask here for alternate suggestions. You'd be surprised at how knowledgeable the Peas are about all sorts of stuff! For example, if a crank is a difficult motion to use (most manual die cut machines) Spellbinders old "Wizard" (sort of like a Big Shot) uses a ratchet motion - much easier for some people with hand muscle/strength issues. Or perhaps an electronic machine like Tim Holtz Vagabond is a better option? Both use most other companies' dies and embossing folders so they are quite versatile. There are even special companies devising attachments for sewing machines that let people with physical challenges use, for example, a mouth device rather than a foot pedal to control the machine. That's the kind of practical things I'm talking about - they will be unique to each disabled scrappers needs/style. I choose my paper trimmer based on Pea recommendations! I think it was just last wk that a Pea had a great idea for me to make a couple of larger lap work spaces then sliding them under our bed for storage when not in use. Dh and I are working on thinking that through now!
The other thing I've found that is very helpful to me when the pain is particularly tough - and that is using something to move my mind to a different place. It can be upbeat, catchy, familiar music, and audio book but for me it's more often a familiar movie on TV. If my mind can be distracted and "get lost" in a (non-depressing) storyline off in the background, it become easier for me to shut out the pain and scrap (or even just try to doze if that's all I can manage at the time).
On the many days when actually scrapping is just too much (like yesterday and this am) I spend time on my laptop Peaing, and enjoying technique and process videos. I may not be able to create but my mind keeps planning new things to try when I get the next small burst of energy.
It's hard to put into words the challenge of coming to terms with the "new normal" in everyday living when your physical world has just been turned upside down. My faith has made all the difference in the world for me in that aspect. I know He continues to have a purpose for my life even like this! I know there are many Peas who post or just lurk who are traveling similar life roads. It has helped me to change my expectations of myself, and then focus on what I still CAN do - worship my Heavenly Father, hug my husband and kids, and still record the memories of our blessed lives.
PEA-T-A-Mom's kitteh is a fraidy cat.
Loc: Wherever my little mind takes me
|Posted: 3/31/2013 12:59:57 PM|
Boy do I get it. Scrapping is my favorite hobby and I so rarely do it, because of my illness. Sometimes it's pain that keeps me from my hobby and other times it's just pure fatigue that is so extreme that I can't sit up for any length of time. It's very sad and disheartening to walk past my scrap room all the time, knowing that I don't have the energy to go inside and create. I hope that you'll check out the link above and that you'll be able to find a way to enjoy your crafting even if it's just in spurts here or there.
I'd like to help you out. Which way did you come in?
|Posted: 3/31/2013 1:14:06 PM|
Thanks for all the suggestions so far... none have really clicked with me yet; but I am sure it has or can help someone. Most/all of my pain is in my upper body. Hands, neck, arms, shoulders and rib cage... it is so exhausting... Keep the suggestions coming. A Dr. finally RXed Physical Therapy... and I should get into a pain clinic soon. None of the pain meds they have tried have worked... even to lessen the pain just a little bit; and as I said, my vision is screwy too.. and I just wanna play.
|Myblog: Odd Bird Out
"My art.... My art keeps me sane." - scanners (1981)
& the Velcro dog
Loc: Somewhere over the Judgy-pants Rainbow
|Posted: 3/31/2013 4:38:09 PM|
I'm sorry for your pain.
Unfortunately, I know all too well how you feel, as I have Fibromyalgia. There are days I can't even hold a darned pen.
I've not tried modifying any tools or anything. Just scrapping whenever I can. Project Life has helped tremendously.
What usually happens is that I spend my good moments getting things accomplished around the house and the scrapping gets pushed to the back burner. I feel guilty scrapping when there is so much that needs done in the house.
The difference between genius and stupidity is genius has its limits. ~Albert Einstein
Make a Wish!
|Posted: 3/31/2013 4:45:27 PM|
So sorry for what you are dealing with, I can only imagine. My thoughts are with you! What about doing project life style scrapping? A lot of the kits seem so great and you could embellish as much or as little as you want ? Plus, it seems to me that you get a lot of pictures scrapped this way, I haven't done this myself but so many people are doing it that I am sure you could find tons of inspiration.
|Posted: 4/3/2013 3:05:58 PM|
Just want to bump this to the top in case anyone else has any ideas.
|Myblog: Odd Bird Out
"My art.... My art keeps me sane." - scanners (1981)
|Posted: 4/3/2013 3:49:37 PM|
Hoping you will have lots of good days without so much pain.
My mom has no use of one arm/hand due to surgery to remove a tumor from her spine. She isn't a big scrapbooker, but when she does, she now uses only precut items...for instance she used to trim 12x12 paper to 8.5x11, now she uses 12x12 or 6x6 - no extra cutting. She uses journaling cards or writes (briefly) straight on the paper. If that is still not enough to enable you, would you be able to put the supplies/pictures down on a table and then "supervise" someone else as to placement, and have them do the actual layout (it's still your creation/design.)
I hope someone comes up with some good solutions for you. Hugs.
Ancient Ancestor of Pea
Loc: South Florida
|Posted: 4/3/2013 7:54:07 PM|
I've read the responses and I had a hard time holding back the tears. I have fibromyalgia and osteoarthritis plus the additional bonus illnesses that always accompany the main illnesses.
Many people suffer severe depression-from the pain and loss of their old life when diagnosed.You've been into your scrap room. That's a step in the direction YOU want. I'm glad you can see it.
What time of day are you in the least amount of pain?
What helps reduce your pain?
What is the length of time you can sit in a chair before the pain makes you unable to scrap?
What scrapbooking tasks do you think would be the easiest for you to do?
What size item could you grasp before it was too painful for you?
What do you use for adhesive and a paper cutter/trimmer?
What size do you scrapbook? 12x12?
I'm not sure your financial situation. My scrapping budget severely decreased when I stopped working. I thought I could make my own embellishments. With fibromyaliga, the memory goes into a "fog" where the smallest task-like making your own embellishments-becomes too difficult.
Thank goodness for Project Life-although I wouldn't recommend trying to take a photo a day.
Does your scrap room need to be organized? Can anyone help you organize it? Can someone help you gather the supplies you have and make kits from your supplies and photos? I put mine in the large or XL ziploc bags. Even if you can close up the bag, would it be okay to put your kits in a box or another container where the items won't get smashed or damaged?
Lastly, have you tried digi? If you crave tactile, why not make cards from your supplies?
Your life has changed so much in the last year. Everything takes time. I hated hearing that statement. But, it's true. Little by little, you will hopefully have more control over your flare ups. If you need to talk or vent, please PM. I am a good listener.
|Cheers from Southeast Sunny Florida!
PEAring through my camera lens
|Posted: 4/3/2013 9:06:08 PM|
I am so sorry. It's got to be hard and discouraging at times.
My scrapbooking buddy has MS, and she was born with Cerebral Palsy, so she has a double whammy. She has her bad days when she can't do much of anything, let alone scrapbook, but sometimes she just amazes me with how she goes ahead and does what she wants in spite of her many challenges.
Think of it as therapy. You can't do everything, but you can still do some of the things you love. Why let the disease take that away from you?
After seeing my friend rise above her challenges, I have realized that I can do more than I think I can, in so many ways.
|My Scrapn' Blog
Photographers are violent people. First they frame you, then they shoot you, then they hang you on the wall; but if you're real good, they will scrapbook you!