I have made some positive changes for my health at work and wanted to share in case this could help anyone else. I submitted my FMLA paperwork and I really started thinking about this condition; more specifically how unpredictable it is. I asked my boss for a few changes and it has really helped improve my well-being at work.
1. I requested a new chair at work to help support my back and posture. I had my Chiropractor and PCP write a letter stating the chair would be beneficial, especially since I have to sit at a desk for long periods of the day and make/return phone calls.
2. I turned off the Fluorescent lights and got a dim lamp to use instead. Without the glaring fluorescent lights, I'm able to focus better and don't get as many headaches.
3. I packed a "work emergency kit" which includes: extra strength Tylenol, a blanket to wrap around me when I'm in pain, Icy/Hot cream, healthy snacks like nuts and crackers for when I have those extreme energy crashes, my I-Pod to play light music throughout the day and listen to on my breaks, and my massage pillow for my back.
I've tried the "emergency kit" before but I really had to personalize it to what I need and what is appropriate for a work setting.
Hi Sara. Believe it or not, this is the first time I have seen or heard of anything about an FMS “emergency kit”! What a fantastic idea! Thank you so much for posting this!
Gentle hugs,
Elaine
I wish I had been diagnoised before they made me quit. I also had a mostly sitting job that was very mind taxing. So glad that you wrote this post, I am sure it will help many. Good Luck with your job, I miss mine but know now that with the condition I am now in, I could never do it again.
Sara, good for you! I'm learning a lot from so many of you - and I am especially appreciative of your support. I work part-time from home (I'm 68 years old) so I have the advantage of taking a break most days for lunch with my moist heat pads. When I do go out it is always with fresh cut up fruit and lots of water. I limit my errands and outings. I like the idea of taking a warm blanket since i am unable to heat my pads. Happy to hear you have a good supportive work environment. Thanks for sharing.
I need extra Potassium so always carry that in my purse. It has been shown that fibro is partly caused by an inbalance of potassium/sodium. I find that when I start to feel nauseous and tired and dizzy that means I need potassium.
I too have an FMS Kit, though I use mine for visiting my sister, which is always a two-night stay as the driving (2 1/2 hr round trip) is just too much for me. Unfortunately, my sister won’t go out of her way to provide anything special for me (doesn’t acknowledge my fibromyalgia) so I need to bring all my comfort items with me. I am on total disability, I’ve had severe fibro for 17 years. This FMS Kit would work for staying at hotels or most short trips.
All of my fibro meds, including ones for IBS flares (Levsin & Imodium). Controlled meds in labeled bottles, rest in pill boxes. Take enough for a few extra days.
Muscle Relief Lotion (Village Natural Therapy, has menthol and eucalyptus). Also their body wash for hot showers.
Low-light lamp bulb (40 watt) for the too-bright bedside lamp.
Sleep sound machine
Sleep eye mask, earplugs
Back massager acupressure machine (bulky but essential,)
Kindle tablet with eBooks for “pain distraction”
Tempur-pedic mini-pillows
Fiber Gummies to prevent IBS
Car disability hanger (I have plates, but need to use this if I’m in someone else’s car.)
Cane to get up & down stairs from guest room on 2nd floor.
Special foods- dark chocolate, high fiber cereal, protein bars; nonfat milk (the fat in 1-2% milk flares up my IBS.)
Ice pack for migraine. Water bottles.
Whew! Now I’m exhausted from listing all that! But it is really essential to take care of yourself. My final tip…?
Plan at least 5 days recovery after returning home! Unpack car a bit at a time. It’s ok if it takes 2 weeks to get everything unpacked!
Thank you Starr! This is quite a list and I will utilize the ones that are applicable for me. I find a sense of relief when I know that I have the essentials with me whenever I leave my home. Blessings!
Actually any person who works so many hours on a computer or even desk must have a chair that is adjustable as well as desk that is...if the chair is not. Here is Ca, Ca OSHEA is the dept that over sees employees rights but each state as well as federal government has depts to enforce these laws.
I believe the office has to be so many people...over 50 i think but not sure...having a chair you can adjust helps greatly as well as for some having foot rest...just a box will do or footstool. Remember to get up and move at the very most every hour but ideally half hour. Look away at distance spot if on computers a great deal of the time.
You also can get those wrist supports if your hands or wrists are starting to hurt either while at work or after it. If you stand a lot they must have soft matts for you to stand on....those socks for varicose veins can help and decent pair of shoes...i did not care about style i cared about pain.
Some friends would go take naps in their cars during breaks or lunch...and listening to music is always a great idea as it relaxes you plus takes your mind off pain. Your brain can really only focus deeply on one thing at a time so music can help!!
i think emergency kit is excellent idea...i would add rescue remedy..by Bach remedies. I was not believer in Bach and not sure if any other product works though it is used often in england and europe...but Rescue remedy does work!! plus you can give to pets if stressed or hurt as well. You can get it now in grocery stores, Amazon has it and sure drug stores might carry it...use to be only health food stores had it.
What it does is if you are suddenly very exhausted and not even sure you can drive home...gives you a boost to allow you to make it through tough time...does not make you feel more energy just not so wiped out.
I also remind people to drink constantly...keep yourself hydrated so means not just coffee.
i think that is excellent suggestion..my purse is my emergency kit..i tend to only use small wallet when i shop but my purse has all possible meds i might need in it!!
This post makes me realise I have been doing this to go away for a long time despite only being diagnosed in December. For years I have taken
1. A memory foam mattress topper
2. My massager
3. Pain killlers and migraine tablets
4. My own pillows
5. A home made quilt so I can adjust the number of covers I have to regulate my temperature.
6. Wheat bags both for warmth when I go to bed and for any aches and pains
In January I had to do a 5 hour round trip with my dh as we took my dd back to college. I was expecting it to cause problems but had not realised quite how bad I would be and for how long afterwards. That was without even doing any of the driving as dd drove there (first time doing that distance after passing her test in the summer) and dh drove back. I'll know another time.
Nail polish - because sometimes, feeling pretty helps me feel better
Wet-wipes (for sweats)
Deodorant (in case I smell like sweat)
Imodium
Chocolate (different kinds)
The Martian Chronicles (a favorite collection of short stories)
Ice packs and a space heater and a fan - because you never know what temperature your body wants to be from one minute to the next.
Netflix (on iPad) and headphone to 'zone out'
Smelly-good lotion
But most importantly - PEAK - an app like Luminosity that trains your brain and gives you goals and stuff. You can see your increases and decreases (and with a pain journal) you can see when the best times of your month (based on cycle, day of the week, weather... ) It has games to play and quantifies brain activity.
I find these things help, but I also know that your emergency kit needs to reflect who you are and how you handle FMS.
So glad you posted this!!! Everyone should have a kit, but we NEED them!
My emergency kit is Tylenol and ibuprofen,easy to cook meals, cold/hot pack,music and watching funny tv shows to distract me.it's fun to see what everyone has in theirs.I might add some of them to mine.thanks for the wonderful posting!
I ask your doctor this kind of question as some do not think you should be even taking it since it is not anti inflammatory drug as ibuprofen is or other reasons. Some told me even though you can mix them at otc dosage they do not like patients with lupus do it. They rather prescribe ibuprofen at RX levels.
Plus it can damage your liver at high dosages but ibuprofen can damage your kidneys..but seems after studies at much higher levels than tylenol can hurt one's liver. Another reason why some doctors encourage their patients to avoid tylenol except at otc dose.
So hope you ask your lupus doctor what they think especially since lupus can affect us each so differently.
WOW, I am overjoyed about the thoughtful and amazing support and responses to this discussion. I definitely have some great new ideas that I will add to my "emergency kit".
I love reading everyones ideas. I have to take my horse shoe shaped travel pillow with me everywhere I go as I need it for sleeping. I started using it about a year ago and it helps me with neck pain. I also make sure I have my meds and reuseable icepack. and I do go from ice to heat depending on the pain. I also alway carry muscle rubs and sprays. I'm currently using a roll on and spray on bio freeze. Also I do have to plan at least a 3 day rest period for recovery! Wow it feels great not to be the only one. Thanks for sharing everyone!! I love this site!! Hugs and blessings to everyone.
My problem is that I travel all over the place for work. I really need a bag like this to throw in the car. My thing is that certain clothing can really hurt me after a while. (Usually dress clothes or form fitting stuff). I have to have a change of comfortable clothes in case I get bad and have to leave work early and drive home. I could be over an hour away from home at that time. Also, I get so nauseous sometimes and I get headaches. It has happened when I’m trying to get home. There have been times I barely make it home safely. I have perceptions for both, but they don’t fully work. Any thoughts?
