Posts Tagged ‘Touch’

30 Facts!!

May 24, 2021

Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.

  1. Every morning is a tough morning.
  2. I can sleep all day and still feel like I just ran a marathon.
  3. If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
  4. When i’m tired, let me sleep.
  5. Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
  6. When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
  7. Yes, diet matters, but in flare mode, all bets are off.
  8. Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
  9. I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
  10. Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
  11. Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
  12. Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
  13. Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
  14. I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
  15. Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
  16. To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
  17. Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
  18. I can get moody. You would be too if you were in pain all the time, be patient with me.
  19. Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
  20. My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
  21. If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
  22. Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
  23. “You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
  24. Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
  25. There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
  26. Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
  27. Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
  28. if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
  29. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
  30. Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.

Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2

Be Cognizant of Your Behaviour.

May 3, 2021

I’ve mentioned this before and some may not be clear with what I mean. I’m not talking about being rude or nasty, but that is unacceptable aswell. I’m talking about the things you are not subconsciously aware of.

Touch.

Casual touch can be excruciating..

This is probably the biggest issue. People touch people. It happen. Even when sometimes you are trying not to. Like on a crowded buss or subway car, especially during rush hour. There’s also touching that you may not be aware of. An intended gentle affectionate touch like a hand on the shoulder could easily cause excruciating pain. While you can’t help the contact on a transit system, you can be aware of how you express affection to someone with Fibromyalgia or any other chronic pain condition. The easiest way to know is to simply ask.

There are times when you will forget. My mom forgets and I’ve had fibromyalgia for over 20 years & chronic pain for another 10 before that.. So if you forget, if you remember as your doing it or right after, apologize. If they mention it to you later, apologize. If they don’t accept your heartfelt apology, then they are just being jerks. But if they don’t comment, then either you likely had very little impact, or they just don’t feel comfortable to discuss it with you. Only you’d be able to tell.

Scent.

There are many scents people react to. Anything from expensive perfumes to little Jimmy’s upturned stomach. Many people with Fibromyalgia, Fibromites, do react to various smells may of them synthetic. As a result we generally can not be around the source of a scent.

Longing Perfume. My very first non-allergy reaction to a synthetic substance.

Perfume, even the expensive stuff is an excellent example. While you may think you are smelling like the bee’s knees, but in fact you could be harming someone else’s quality of life. Other examples include moisturizers, bath products, tobacco smoke and laundry soaps/fabric softeners. Reactions are similar to an allergic reaction and while not anaphylactic it can cause anxiety which could result into a panic attack. So if you must make yourself smell ‘pretty’, Please use a light hand cuz the person with fibro who rides up on the elevator with you at work, would very much appreciate it.

There are some more natural scents that tend to both us as well. I am fortunate that I don’t react poor to natural scents, except onions but that may have more to do with my aversion to onions.. 😆

Sight & Sound.

While not as much you can do about this, just be aware that many of those with fibro also have sensitivites to bright lights & loud noises. So no going into their room to wake them up with opening the blind & the window with a 20 piece band. That could severely thaumatize them – I know it would for me.

Taste.

Well there’s not a lot you can do suits you are not actually feeding them or forcing food down the throat.. lol.. You can simply be aware and take into consideration food sensitivities if you are aware of them. The last thing anybody wants is for someone to spend the evening in the bathroom, stinking it up.

General rule of thumb for me, the more natural, the better.

Who Do You Sleep With?

September 23, 2011

Who do you sleep with? A partner? A pet? Alone? Myself, I tend to sleep with a partner.. There are many advantages & disadvantages to sleep with a partner..

 

Disadvantages:
*(S)He may snore or talk while sleeping
*(S)He may be a restless sleeper and putting two together could be a nightmare
*(S)He may be used to having the whole bed and becomes a bed hog
*(S)He may not be used to sharing and becomes a blanket hog
*(S)He may like to cuddle and tho may consciously know not to cuddle, do so unconsciously while asleep
*(S)He may like to connect while asleep and reach out and touch you, but we know there are times when any unexpected touch hurts
*(S)He may have different sleep hours which could disrupt your sleep *(S)He may have a small bladder and needs to use the bathroom several times a night *(S)He may be more sexual and try to initiate some hanky-panky while still asleep
*(S)He may prefer a different room temperature or room darkness
*(S)He be a total morning person who wakes bright, cheerful and alert. To be honest, I don’t think *any* Fibromite wakes bright, cheerful or alert let alone all three! Advantages:
*You are not alone, and you *know* this. You know there is some there for you. You know that there is someone who cares and will be there for you. You know that (s)he loves you and will support you. You know that there is someone who ‘gets it’, or is at least understanding & compassionate, or if your are lucky, both. It’s this knowledge that, as a single advantage, easily outweighs the potential disadvantages. Do you agree with my conclusion? Can you think of any other advantages or disadvantages?