Hey doll hey! How’s your day/night going? Great I hope. Today I am not doing so well. I am in a world of pain, did not sleep well at all last night because I was up with pain most of the night, and I have absolutely zero energy.
Sometimes my walk with fibromyalgia leaves me feeling defeated. This is how I feel today. Very much like I’ll never be normal again.
All of my muscles are killing me …. it feels like I had a high impact leg and arm day at the gym on the same day and then got hit by a bus coming out of the gym.
My joints in my hands and the knees are so sore and making it very unable to do simple things such as hold my coffee cup and brush my teeth, not to mention walking hurt like a 1,000 knives being stabbed into them.
The fatigue I am feeling isn’t like a normal, didn’t get enough rest, fatigue. It’s like having a 103 fever, sick with mono, and haven’t slept in 3 days fatigue.
It’s days like this that leave me feeling angry at the world and angry at the traumas of my past that cause my brain to snap and create this damn illness.
I know I’ll never be rid of this illness (not unless they are able to come up with #1 a way to detect fibromyalgia, #2 a cure for fibromyalgia, and #3 a real defined reason that fibromyalgia suffers have contracted it) but it would be nice to just have 1 day …. just ONE that would be pain free (not low pain like most of my days are … I’m never without pain …. everyday (24 hours….1140 minutes …. 86,400 seconds of pain EVERYDAY)…. It’s just some days the pain intensity is much lower and I’m able to do things.
On day’s like today the pain is so intense that I really should check into hospital and get a pain infusion and Myers Cocktail (it’s a vitamin therapy treatment which enhances immune system, reduces fatigue, helps with seasonal allergies, reduces symptoms of fibromyalgia and asthma and contains magnesium chloride, calcium gluconate, thiamine, vitamin B6, vitamin B12, calcium pantothenate, vitamin B complex, vitamin C, and dilute hydro- chloric acid.) but I don’t because let’s face it the treatments are very fleeting and then I’m left with the side effects of cotton mouth and a nasty little head ache… not to mention an astronomical hospital bill.
So all I can do is keep bundled up with a warm cozy blanket, try not to move too much, and remind myself to breath until the pain levels come down some. For the fatigue all I can do is fight the need for sleep (since sleeping in the day only leads to more pain and the less likelihood of being able to fall asleep tonight) and limit my activities to the bare necessities: a simple shower… no washing of or fixing up my hair… no makeup for me… brush my teeth… fix my mother and myself something for breakfast…. probably skipping lunch to store up what little energy I can for to fix dinner…. and since I’m in pain it will be a laying down day for me.
It’s very hard to deal with on days like today but the part that crushes me the most is the isolation I feel on days like today, not that I’m very social these days because of Covid -19 (since I have an auto-immune illness I have to stay away from the world to keep myself healthy), but on days like today I realize just how much I have to do that I can’t do because I’m in a horrible flare.
I always try to remind my fellow spoonies to save a bit of energy for themselves … to be able to do something for themselves everyday to just give them a bit of spirit boost … it’s so important not to loose ourselves in the service of our loved ones because of these auto-immune diseases…. but we also have to know when to surrender to the illness so as to not cause our illnesses to progress further.
It’s just that on days like today it feels like I’ve thrown in the towel, like I’ve rolled over and given up, like I’ve laid down and surrendered for good.
I pride myself on always being able to do for myself… but on days like today there is NO way I can…. and unfortunately, ever since hubby’s hours changed, there is no one that I can rely on. I feel defeated today.
Well dolls. I’m sorry to write such a Debbie Downer post… I’m just so frustrated and so over whelmed that there is just no way for me to put a happy spin on today.
I’m grateful for my speech to text software because at least I’m able to still blog for the day … but I have this amazing makeup look I really wanted to do today and new products that arrived today that I really want to dive into … and I have to table table it until this flare ends.
Well, that’s all for now dolls … hopefully I’ll be better by tomorrow, in the meantime I hope and pray that you have a great rest of your day/night and that you are in good spirits and health.
Remember dolls … it’s OK to not have any spoons for the day … but on the days where you have some spoons …. remember to save one for a bit of lipstick.
Hey doll hey. How’s your day/night going? Great I hope.
I’m not able to do a Face of the Day post today. I awoke feeling extremely exhausted and in a world of pain.
I’ve decided to have a bed rest day so that I can curb this Fibro Flare.
A flare is when someone with Fibromyalgia has their symptoms increase in intensity and also has more symptoms all at 1 time. These increase in symptoms and intensity can last anywhere from a few day to even a few months. I once had a flair that lasted well over a year.
Because of the year long flare when I have a new flare I take care to make sure I don’t end up with a long term flare, many times this entails bed rest, extra hydration (I’ll typically increase my water in take by 1/2), I make sure to take every pill in my Fibro regimen, and (because I typically get nauseous during a flare) I adjust my food intake to bland soft foods that wont aggravate my tummy.
So today I attempted to wake up around 7:45 Am but I was too weak to get out of bed so I went back to sleep for an hour. When I got up the at the next alarm I was able to get out of bed, however I felt exhausted and kept nodding off whilst making my coffee so I laid back down and decided to just wait this flare out and I ended up nodding back off, with Fibro flares I tend to sleep extended on and off the whole day …. as is the case today.
So here is the face of a fibro warrior ….
Let’s talk about the extreme exhaustion (called FIbro Fatigue) is not the same as plainly being sleepy… it’s not having enough energy to do something as simple as take a shower or brush your hair.
More times than not the feeling of exhaustion is that of the exhaustion one suffers with worst flu they’ve ever had …. this is how someone with Fibro feels and while it’s important for us spoonies not to over do ourselves.
We often have to cherry pick things to do for the day so as to have enough energy to accomplish everything that is needed and knowing that, more often then not, tasks will have to be left at the way side.
Imagine if you will, getting up in the morning to take a shower and having to choose between giving your hair a much needed shampoo and shaving your legs (which you hadn’t been able to do is a few weeks do to being in extreme pain and exhaustion)…. knowing full well that either activity is going to cause your body to go through a huge energy depletion.
You see … something as simple as raising your hands above your head (say like when you wash your hair) or bending over of any length of time (say like when you shave your legs or sort the laundry) will cause someone with Fibromyalgia exhaustion.
I can’t tell you how many times I have had to lay down in bed for a little while as I recover from just choosing to wash my hair in the midst of my shower. See I never choose to shave my legs while showering because that option always leave me depleted so quickly that I almost always have to call for my hubby to help finish the task of shaving…. I’ve actually adapted and on the days I want to choose to shave rather than wash my hair I actually sit on the bedroom floor with a dish pan full of warm water, my shaving cream, a razor, and a towel and then I shave whilst sitting on the bedroom floor … see this reduces the amount of time I’m spent bending over which means in turn it is less of an energy drain … there still have been times when I needed hubby’s help to finish shaving, but I typically can get through most of the shaving on my own.
So this type of exhaustion is what I am feeling today … an extreme case of the flu with no sore throat or fever but complete with body pain. (bare in mind that Fibro spoonies do get sore throats out of the blue … it’s just one of those things that happen as our immune system systematically attacks our body).
I’m in currently using my Cortana from my computer to dictate this blog post. This helps me save some of my energy and allows me to stay laying down as I recuperate. It’s not full proof, I do have to go in and correct some of the spelling and punctuation and of course I do have to manually enter my pictures. But at least I have away to still be able to blog when I want to.
Aw yes … the dreaded Fibro headaches.
Now I’m a migraine sufferer but the migraines I get as a direct cause of my Fibromyalgia are vastly different.
IT feels like I have a white hot poker in the back of my eyes, and this type of migraine isn’t alleviated with my current migraine medication.
The Fibromyalgia headaches that I get are so bad that I often find myself vomiting uncontrollably.
With no alleviation I just have to wait it out and hope that this migraine passes quickly.
So now let’s talk wide spread pain. The most common symptoms a fibromyalgia is widespread pain of the muscles and nerve endings.
A typical pain day is just a dull pain around the body that never goes away. Pain for fibromyalgia is constant and consistent I never lets up. The only change is the pain level. There are days where the pain level is what we call baseline ( this is the pain intensity that our body typically field on a daily basis). Basically a baseline pain day is the normal amount of pain someone with fibromyalgia feels on average. For instance my baseline pain level is around a 5. This means as long as my pain level is at or below a level 5 I am able to function normally, or as close to normal as someone with fibromyalgia can get. Anything higher then a level 5 pain start to make daily activity and basic human daily life different for me.
Our widespread pain isn’t a basic pain. Fibromyalgia sufferers tend to get clusters of pain in the chest, neck, hip, knees, and elbows. We can also get a group of cluster pain. For example, today my pain is in my hips, my arms, and the muscles of my thighs. On top of that I also have pain associated with my rheumatoid arthritis.
Today my pain level is intense and I can’t get comfortable no matter how I lay or sit.
This is the reason I am unable to play with my makeup today. I feel bummed because makeup play is my own personal time to just dedicate some of my energy level to doing something that makes me happy.
Is a fibromyalgia suffer pain is constant an ever present, we are never without some type of pain we just get better at being able to deal with it.
Please understand that when I say we are able to deal with the pain that we feel on a daily basis it is not the same as someone without a chronic pain disability would feel. For someone with, let’s say, Fibromyalgia our pain levels are different than someone who does not have an autoimmune illness. We feel pain on a higher, more intense level than a non-sick person does.
I can’t tell you how often, When I tell someone I am having a high pain day, I get the response “Oh ya my lower back hurts pretty bad today too”. I can guarantee you that your back pain is nothing as painful as the pain I am in… I feel bad that you have pain, just stop diminishing the pain a spoonie is going through with this careless statement. We are in pain 24/7! We eat, sleep, and breath pain on the daily… It is ever present and never ending.
On a good pain day it feels like we’ve been punched in the arm or leg or back or hip repeatably and it feels like bruises are forming just below the skin’s surface.
On a bad day it feels like we’ve been dropped of the side of a very tall building and have hit every balcony along the way to the ground.
And these are just the muscle and joint pains we experience….
There are typically 7 types of pain a Fibromyalgia sufferer experiences …
The ones I just talked about at classified as hyperalgesia (an abnormally increased sensitivity to pain, which may be caused by damage to nociceptors or peripheral nerves and can cause hypersensitivity to stimulus).
Let’s talk Allodynia (the experience of pain from stimuli that isn’t normally painful). I currently am experiencing this type of pain.
Imagine, if you can, something as simple as the wind from a fan, brushing your hair, a tender kiss on the cheek, or just simply wearing clothing causing you intense pain. That is Allodynia.
I refer to it as razor skin because when I have an Allodynia episode 7 times out of 10 it’s sensory driven pain where my skin feels like I have the worst sun burn in history just bellow the surface of my skin. It hurts to have clothes against my skin, to have even the lightest of bed sheets against my skin, the feel of a pillow at the back of my head, I mean it even hurts to have the fan gently blowing over my skin.
Have you ever said something like “My hair hurts”? For someone experiencing Allodynia their hair actually does hurt. It’s tender to brush the hair, to try and put it up in a bun, to just simple have someone run their hands over the hair.
Another form of pain is closely familiar to Allodynia and that is Paresthesia (numbness or a burning feeling that occurs most often in the extremities, such as the hands, arms, legs, or feet, but that can happen elsewhere in the body as well).
This is the type of pain that often makes you super sensitive to climate changes … so for some examples … on a hot day I might feel cold instead but that feeling causes pain to the skin exposed to the temperature…. whilst showering the cold water might feel extremely hot and feel like it’s burning my skin…. I can’t tell you how often I have burned my hand on the stove because I just don’t feel it.
It is also the type of pain that leaves my arms and legs feeling like white hot pins and needles sticking out of my skin.
Then you have your garden variety muscle, joint, and abdominal pains associated with Fibromyalgia… and the aforementioned migraines.
Bare in mind that no 2 walks with Fibromyalgia are the same as are no 2 treatments.
There are also countless symptoms associated with Fibromyalgia (too many to list in 1 blog post).
The only thing that we all share in common is that we have a illness (a disorder if you will) that effects over 5 million adults in the US alone (not to mention our Juvenal counterparts and our sufferers outside the US) that has no cure and all we can do is manage the symptoms 1 at a time with medication, with self care, with a sort of hyper-vigilance that allows us to pay attention to what our bodies need.
Well that’s all for now dolls. Thanks for stopping by, I hope you enjoy the rest of your day/night and that you are in good spirits and health.
I hope to be back to playing in my makeup tomorrow… no promises though as I don’t know if I will be feeling better by then.
Remember spoonies … save a spoon for a bit of lipstick …. (this is a metaphorical lipstick of course … This lipstick represents 1 thing … 1 item… 1 something that you save some energy to do that makes you happy and puts you first and just helps you maintain some self care for YOURSELF first … today my lipstick is laying here writing this blog … even though typically my metaphorical lipstick is an actual lipstick because makeup makes me happy).
Hey doll hey!!! How’s your day/night going?? Great I hope.
I have a lot of people ask me why I always say “Save a spoon for a bit of lipstick”. The reason I say this is that as a spoonie over the years I hadn’t always left spoons for self care. I would spend all my spoons, or energy for those of you who don’t know what that means. We who suffer from autoimmune illnesses call ourselves spoonies…. why you ask? Because we identify with an article by a fellow spoonie named Christine Miserandino who wrote an article entitled Spoon Theory where she explained to her friend who wanted to know what it was like to deal with an autoimmune illness. She used spoons in her explanation to symbolize the amount of energy someone with autoimmune illnesses has when they start their day and how each little thing we do takes away from this spoon supply.
Well for many years I would waste all my spoons before I got to doing anything for myself and this caused me to suffer horrible depression and caused me to have very low self esteem. After a few years of always feeling horrible about myself I realized the things I loved doing such as home spa days, painting my nails, playing in my makeup, getting dressed in actual clothes (I would take a shower and than immediately pop myself into a fresh pair of pajamas), and simply just wearing some perfume (I thought why bother I’m stuck in the house because of this stupid illness and why waste perfume on myself when I’m only staring at the same 4 damn walls). I finally remembered that I have value and I have the right to pamper myself even if I’m only going to be resting or just being around the house. So I started to limit myself to the things I do in a day. Instead of getting up and cleaning the full house everyday (yes I use to dust and mop and vacuum and the wash, and rearrange the whole house everyday on top of all of my normal responsibilities such as cooking and dishes). I started taking some of the energy and poured it into self care… I would take my shower and then do something for myself such as my hair (instead of just pushing a brush through my hair and pulling it into a bun) or giving myself a pedicure or spending time doing a face mask…. slowly this morphed into me wanting to do more beauty related things for my blog …. this led to me doing my makeup every day which in turn helped with my depression …. when you look put together, you just feel better. This led me to want to dress up more, instead of just living in pjs or a pair of my husband’s sweatpants.
I conclude every post with the tag line “Remember… Save a spoon for a little lipstick” as a way to remind my fellow spoonies to save time and energy for themselves.
This is so important for all spoonies to do. We tend to put the needs of everyone else before ourselves… we then get lost in all the daily coming and goings and before you know it we are a bit sadder, a bit more frustrated, a bit more hopeless….. this effects our self esteem and our mental health.
Now I’m not saying applying lipstick will instantly get rid of our depression and boost our self esteem… but it starts to help… just taking a few minutes and a spoon or two out of our days to get do something as simple as giving ourselves a face mask treatment or giving ourselves a new hair style or just simply popping on some makeup starts to make us feel happier and more put together…. this can lead to not wanting to wear pjs or sweats all day …. it starts to boost your self confidence and in turn improves your mood.
Now, this wont be a “first time you try it you’ll be all better” type approach to better mental health…. this is a “taking time out for me, because I’m worth it” type approach.
See when I first got sick …. I was down all the time. I felt useless and as if I was a burden. I couldn’t even shower on my own … my husband had to help me shower because I was so weak and in so much pain that just getting into the tub was a huge feat. By the time I was done soaping my body up and had no energy left to wash my hair.
On day hubby came home with a shower chair and said we were going to do this together…. he would hop in the shower with me…. help me lather up and whilst I was sitting on the shower chair he would take the responsibility to wash my hair. I still only wore buns for most of the time… except for on moderately good days where I could do my hair and makeup…. even though it took a long time to do the makeup portion of my day…. with tons of starts and stops.
I would get so frustrated because I would cook dinner and not have enough energy to do the dishes.. or get to the wash… or even make my bed (on the good days where I was able to get out of bed).
I started to get depressed because I hadn’t the spoons to visit friends or go to a movie, or even go out for dinner. We had Disney season passes … and I had no energy to even attempt to go to the happiest place on earth. I started to beat myself up because I no longer could tackle all of the house work in 1 go.
I never liked going out because I hadn’t the energy to put myself together … I hated leaving the house in pjs or sweats and hated that I always wore my hair in a bun with no makeup…. makeup was always a big part of my soul …. I am seriously passionate about makeup …. it’s my favorite hobby.
As time went on I started to adjust to the medications and treatments for Fibromyalgia and Rheumatoid Arthritis and was able to do more… but I still wasn’t able to get to do things for myself …. this is when I realized I had to figuratively die to my old life and begin to accept and improve my new life as a spoonie.
This is when I took time to see just how much I could do before my spoons were gone and learned to adjust life so that there was enough spoons for both myself and my household.
I learned it’s ok to do the wash and not fold it or put it away until the next day (although there are some times that when I do the wash I end up in a flair and have to put off putting the clothes away for a few day …. and I have learned over the years that this is OK… it’s OK to need to rest …. allow yourself to rest …. you deserve to rest). I learned that I could ask for help with the cooking and washing up afterward. I also learned to take short cuts … such as purchasing paper plates and cups and disposable utensils to make washing up quicker and easier for me. I learned to accept that it’s OK to serve left overs the next day if I am having a spoon shortage. I learned that it’s OK to dust biweekly instead of everyday … I learned it’s OK to wash my hair every 2 to 3 days instead of everyday …. in fact my hair has never been better …. apparently forgoing washing my hair for a few days (even though I still brush it and put it together nicely) actually leaves my hair softer and easier to manage.
I still longed for my old life but set out to find life hacks to help me get back to as close to my old life as I could.
One of those things was implementing more self care things into my daily routine.
I started to do the wash weekly instead of daily…. vacuuming weekly instead of daily …. I learned that I could make my bed daily without having to furnish the bed with all the extra decorative pillows and duvets , that just simply fixing up the bed with the bed sheets and cover where OK. I learned that not every meal has to be a 4 course extravaganza … that just a simple steak and mash potatoes was good enough. That dessert didn’t have to be homemade every night….. dessert could be a weekend adventure and that I didn’t need to make it from scratch if I didn’t have the extra spoons for it. I learned that if I needed to soak the pots and pans (since we now were using paper plates and cups and disposable utensils) for the night …. this was OK ….
I simply learned to let go of my super structured life and just relax into the new life of needing to watch my spoon count for the day ….
Before I knew it I had extra spoons that I could use for my own self worth. I was able to take time to do hair styles for myself … take time to sit down and play in my makeup and feel good about that ….. before I knew it I was waiting to wear outfits instead of PJs (even thought there are still days where I just don’t have the spoon count to get dressed up … and that still is OK …. I allow myself the bummy days when I need them). I was wanting to take the time to sit down a blog more … I found myself feeling confident again, happy again, more put together again.
This is the reason I tag line each post with “Remember save a spoon for a bit of lipstick”. It’s to remind my fellow spoonies to save some energy for something for themselves …. To save a spoon to do something for their own well being … not just whatever one else needs. To take the time to practice self care …. even if it’s just a simple pedicure or manicure …. it’s 1 thing out of all the things you do that is simply just for you …. you DESERVE to do something for yourself too. I chose to do my makeup for myself because it makes me happy and I love playing around with looks …. that’s the thing I choose to save my special spoon for …. so even if you don’t like makeup save a special spoon for YOURSELF….. or are just starting out with makeup use that special spoon to practice and hone your makeup skills ….. it could be anything …. you could use that spoon to crochet or knit …. to do a puzzle or read a book …. you could use it to shave your legs or color your hair …. use that special spoon to go for coffee with a friend or go see a movie, or pop into the mall for a bit of retail therapy….the possibilities are endless … the important take away is that you save a special spoon for an activity that is just for you …. So when I use my tag line …. I am in no way trying to down play that we have limited energy as an autoimmune person … I’m simply reminding you to save some of that energy to treat yourself well.
Well…. that’s all for this post dolls…. I hope an pray you are having a good day/night …. that you are low in pain and are in good spirits….
Remember dolls …. Save a spoon for a bit of lipstick.