It’s been a while since I’ve been able to write anything, but I’m not one to give up. So here I am again.
I have a new diagnosis to add to the mix, which I hope to write about soon because I know there are some people out there fighting to get their invisible illnesses diagnosed and I have some ideas on how to push that through faster.
Now that I know what it is, I’m just starting to learn how to cope and get back to a life I enjoy – which is specifically difficult for me when it comes to the Fibromyalgia brain fog symptoms I’ve been having – not that the deep tissue, bone and muscle pain, and the resulting depression and anxiety, aren’t at all concerning, as well.
Unfortunately, my mental capacity is worse than bad after spending all week talking to doctors and insurance agents, still working on finding “clinical proof” for my pain and suffering so I can be financially supported to get the medical treatment I need in order to get rid of it – believe it or not folks, having a diagnosis is not enough for most long-term disability companies, and it’s not enough for Metlife.
I was truly appalled when my insurance agent at Metlife told me that I did not purchase my insurance plan, the company I work for did – as if benefits packages aren’t a part of my compensation for working hard. But I get it, if they were in the business of helping you get your claim approved, they’d be out of business, I guess.
I find the system appalling and it has pretty much almost killed me a few times now. But if I can ever get the brain function together to share a proper story, maybe we can find some way to change it – I know that’s like pie in the sky a’ la mode in the current political climate of Americuh.
Anyway, I can barely think or string together a single sentence without feeling like I’ve run a marathon – so that’s why I haven’t been blogging at all. I got by for a while sharing things I had already written, while editing by listening to a docu-reader, but I just can’t do it anymore. It hurts too much to over exert myself.
I tried to start getting a YouTube channel going, thinking that maybe speaking words would be easier than writing words – it’s not. And trying to video yourself through a brain fog and a ton of pain is insane – but I’m still working on it. (Oh, the laughs we’d have if you could see all the pictures I’ve taken of myself when I thought I was recording – talking for a straight 20 minutes for absolutely no reason. Face palm.)
While I still want to continue that project, I’ve found that people really respond to positive content. It’s so much harder to be positive visually – in video or photos – than it is to hide behind my keyboard. Editing videos also takes 100 times more work than editing a blog post, so really not an improvement.
I’m miserable if I’m not sharing and continuing to express my passions – so here we go blogging again.
I think I can handle 20 minutes a day sitting down and writing whatever is on my mind. I won’t be able to reread or edit – I just can’t handle that right now – so you’re going to have to accept whatever I lay out here.
I’m not going to worry about grammar and spelling right now, I’m not going to judge myself either. And I’m definitely not going to worry about keywords and SEO – my brain fog can’t handle it.
But I think, for me, saying something is better than saying nothing. What do you think?
5 Ways I Cope with Fibromyalgia Symptoms
So here are some of the ways I have been coping with this nightmare while attempting to build up to being able to function “normally” again.
1. write it down
I kind of always thought I was a slightly forgetful person. I’d remember vague and random stuff, but I’d forget a lot of other stuff, or maybe I wasn’t paying attention. But with this brain fog, I find my short-term memory loss much, much worse.
Recently my husband was watching an episode of Parks and Rec (a show we’ve watched over and over again for years) and I had no recognition of what was happening or the people in it. Like, it was gone. I first wanted to ask if this was a new episode, but it didn’t make sense with how young everyone looked. I didn’t forget the entire program, I just forgot parts – but it was a kind of “forgetfulness” I have never experienced, like the pictures were simply gone and had never existed in my mind. I broke down completely.
But I had to accept that this is something that can happen when you are in constant pain and under the influence of wacky hormones.
Anyway, I’ve started carrying a book in which I simply write down every single important thing I care to write about, including but not limited to:
- symptoms – I cannot stress the importance of keeping a diary of your symptoms for doctor, diagnosis or insurance purposes
- what I eat
- important conversations
- phone calls
- important dates and appointments
- doctor visits
- ideas for things I want to do when I’m feeling up to it
This is not unlike the idea of having a bullet journal, except mine is so much more unorganized since I don’t have the energy or mental capacity for all that decorating – so if you already have a bullet journal, you’re a step ahead of the rest.
It might seem like a lot of work, but try to remember that you’re not writing an essay for school or an office memo. A word or two can be so helpful in reminding you of something important.
2. find support
There is nothing in my life that has made me feel more alone and isolated than having a disease that no one recognizes that has fully incapacitated me and kept me in my home afraid to leave except for emergencies.
For the first month that I was incapacitated, after a hormone treatment gone-wrong, I didn’t want to say anything to anyone unless I absolutely had to.
After months and months of struggling through this journey with just two people in my world (my mom and my husband) knowing what was happening, I felt more alone than I have ever felt in my life.
While you may feel the support of your spouse is enough, realize that they are also going through a life change when you get sick and to expect them to take all the good, bad, and the ugly with no reprise is unfair and could destroy even the best of marriages.
When I finally reached out both on social media and by phone, I found a supportive community of friends. At the same time, I found that continuously dumping my troubles on these friends started to have bad results, too.
People want to live their lives. They want to be supportive, but it’s really hard to be positive in your own life if you’re just listening to someone’s pain and problems.
But if you have pain and problems YOU NEED TO TALK TO SOMEONE. And if you’re dealing with something like Fibromyalgia, you need to talk to someone a lot and you really need people who are going to understand – I promise you, no one who hasn’t been through this truly understands.
I have personally found beautiful support in banding together with other women in the same boat through Instagram.
While I definitely agree that sharing a more positive outlook is so much better for relations, there will be times when you need to share the rough times – especially in the beginning when you’re getting over the hump of realizing you are incapacitated and need to adjust your life so you can function.
If you are into Instagram, try following some of these hashtags, and maybe using them to gain some attention and followers:
#spoonie #spoonielife #fibromyalgia #fibrowarriers #fibrosisters #chronicpain
Comment and like any posts that give you ideas for how to cope, or that you can find agreement with – you’d be surprised at the hundreds of thousands of women in the world who are suffering just like we are.
If you’re not into Instagram, there are support groups everywhere online – find the one that will help you understand more about what you are going through and where you can talk to people who are in or have been in the same boat.
Therapy and group sessions are also good if you can find the right ones, but that’s contingent on being able to leave your home for the most part. I’m already overloaded with doctors, so adding a weekly therapist or group feels like trying to climb Mount Vesuvius mid-explosion.
Anyway, I’m happy to share in what you’re going through, hit me up or follow me on Instagram and I’ll get back to you whenever I feel up to it: @jaimetalks
How’s this for invisible? Maybe if I went to the doctor like this they would stop noting in my file that I look “unremarkable,” despite my incessant bawling and curling up on the floor, and maybe I’d stop hearing the word “psychosomatic “ from my insurance companies. I’m happy to finally have my diagnosis, but why am I still fighting to be understood? 😭 #fibrowarriors keep on fighting for your right to be believed as a patient. I can’t wait to see my newly recommended doctor in a few weeks. 🤞🌈🥄
3. get up and get out
As hard as that sounds – oh, boy do I know how hard that is – you have to do it.
While I can’t always make it downstairs from my second floor apartment, I have a nice little balcony surrounded by pretty trees that serves as my sanctuary.
The longer you just lie in bed and be in pain, the harder it is.
People will keep trying to motivate you and it’s going to feel like crap – there is nothing more aggravating than being told about everyone’s personal diet and exercise successes when I can barely eat or move, so ignore it.
I have a list of all the things people have suggested and every once in a while I’ll try something new – but you really can’t do it all, so ignore it if you have to.
Find what motivation DOES work for you and stick to it.
Your mood may change daily, but if you can find a way to be consistent (and I don’t mean just sitting in the same spot on the couch for 24 hours) you can find some peace.
Every morning I get up (which may be at a different time every day depending on how I slept), I take the first hour for myself NO MATTER WHAT, and I do the following:
- Meditation and Affirmations – clearing my mind and focusing on what’s in the present, not worrying about the past or the future, and verbally confirming a positive outlook on the day: “Today is going to be a good day.” Whether I believe it or not, if I say it enough I forget what I want to tell myself when I wake up with my stupid brain fog and pain, “Today is going to suck,” and I commit to waiting to see what happens with a positive outlook.
- Prioritizing – Before starting the day, I list out the things I want to accomplish and put them in order of importance. If I can accomplish one thing, I give myself a pat on the back and a reward of some kind. I have learned to adjust my list according to what I can do, and not worry if I can’t complete everything – sometimes getting out of bed can be an accomplishment early on.
The more you push yourself to get up and move around, the better you will feel. It doesn’t seem like it at first, but I promise it’s true.
Today I took a walk for the very first time in over 6 months. It wasn’t a long walk, but it was more than going to get the mail, so I am super rewarding myself today.
4. treat yo’self
While I’m fairly certain that phrase doesn’t usually apply to this type of situation, it’s as important as ever.
I sort of touched on this in the last, but it deserves special mention because it’s so helpful.
It’s really easy to beat yourself up for the things you can’t achieve that you used to be able to. Try instead to realize what you’ve achieved just now that you weren’t able to achieve last week, and then reward yourself with a treat.
Sometimes treating myself can be as simple as allowing myself to go back to bed after having gotten up and accomplished something small. And sometimes it’s insisting my husband take me out for chicken & waffles – when my stomach is up for it.
Putting on make-up might feel like a chore to some, but if you haven’t seen yourself pretty in a while it can be a nice treat. I like to treat myself to hair, make-up and a photo shoot when I’m capable – keep in mind that includes a few minutes of foundation, mascara, eyeliner and lip gloss, a quick up-do, and a couple photos on the balcony. The pictures are a fun reward and make me feel like a human again.
5. learn to forgive and forget
I put this last, but it’s the most important lesson I’ve ever learned for how to let go of the past and forgive myself and others.
Worrying about the past and future is pointless. Being in the present is the best way to cope, but that’s really hard when you’re in constant pain and worry.
I have personally found a great way to let go of the past and take strength away from the mental demons is forgiveness.
Nothing that happens to you is your fault – there is a huge difference between fault and responsibility.
When responsibility gets pushed too hard, you start to feel like you deserved this pain and then it sticks to you like glue and becomes more concentrated.
We are all technically responsible for the choices we make in life, but you didn’t choose to be sick or in pain.
When you can’t take responsibility for something, you might then turn to blame – blame the doctor, the pharmaceutical companies, Americuh, insurance companies, employers – and this does NOT help, I promise.
Of course, when you’re up to it, you should absolutely find your voice raise it – but that is a more proactive approach and does not fall under blame.
Blame just keeps you stuck on past regrets and keeps you from moving forward.
And if you do need to vent, go back to step 2 and find your support, get your vent on and then get over it.
If you need someone to talk to, I’m here and you’re worth it – we all are.
Don’t give up.
Flashback to when I wanted to do modeling on Insta (#plussize #notplussize), but got shut down by pain. 🌈 It helped to talk to some friends today and rekindle some motivation. 💕 When I’m truly down, sometimes social media isn’t enough. I get so isolated. It’s good to know there are others out there who feel what I’m going through, but nothing beats a live voice when you got the ugly cries. 😭🌈❤ I am #grateful. #friends #instamodeling