I missed yesterday so I'm going to post day 12 and 13:
12 how to explain the pain to another person? I normally say something like this " do you know the feeling when you've been sitting with your legs crossed and your legs go numbed? ...yeah? Then you most have felt the tingling when you extend your legs, right? Well, that tingling is what I feel 24/7 With variation of the intensity, additional soreness and annoying pinching in the leg I don't have...
13 how has affected my mental health? My confidence and self steem took a huge beating, my depression intensified, I have PTSD, I'm almost agoraphobic, I have panic attacks among other things I don't remember right now.
So, in general you could say it did affect me.
Day 13: Has your physical illness had any effect on your mental health? Explain.
Definitely, in more ways than one.
I think my illnesses have at least made my feelings of inadequacy worse. Because I've had health issues for as long as I can remember, it's hard to seperate what I can't do due to my health from what I couldn't do--period. I'm still adapting to the fact that I won't be able to live the life I hoped to live, so that's definitely influencing the depression/emptiness issues. I currently don't know what to do with my life or what I even can do with my life at this point. I trust that I'll figure it out at some point, though.
Just as importantly, mental health issues are more symptoms of my physical health issues, so I guess they influence my mental health chemically, too. POTS is known to cause anxiety because the nervous system is constantly in fight-or-flight mode, and MCAS is known to affect the brain in complicated ways. I guess the body is one system, and when one part is out of balance, it's hard to keep the other parts in balance.
Day 14...
5 things I'm grateful for...
My family
My friends
The amazing people here in @7cups
Being able to draw
Art and beauty
Day 4 (late) Friends and family
The friend who found accepting my diagnosis hardest is me. Today, I choose to forgive myself for being too tired to post yesterday.
My partner and daughter were both relieved that its treatable and that I am now getting the help I need. They have both been endless and amazing support and I love them immensely.
I haven't told any other family members. I predict their reaction based on the way they have treated my invisible illness when it had no diagnosis and choose not to subject myself to that. I doubt one medical opinion against the many that supported their view that I am 'imagining this' and 'just lazy' would change their world views.
Friends have tended to respond with 'me too'. I think this is because, over the years I have surrounded myself with friends whose energy levels are a match for mine, so many of them also have chronic conditions.
Work is the place where its made the biggest difference. Having a diagnosis and a better understanding of how it affects me has strengthened my resolve. I am now far more likely to insist on a part time contract and to refuse to do extra hours. I want to do my best work for my clients and colleagues. That starts with taking care of me.
Day 14: Give 5 things you are grateful for.
Okay, this isn't in any particular order, and probably won't be a list of the five most important things because I'll probably forget something important. Here we go.
1) My partner for being understanding and supportive through everything
2) My parents for their support and help
3) The doctors who were friendly and helped figure out what's going on with my body
4) Kind people I've met online
5) My cats for always making me feel better
Day 5
My hearing loss is either completely ignorable (in situations where my hearing aids perform well) or really frustrating and tiring (in situations where they don't). There is no middle ground.
JHS feels like having flu, every single day. I don't want to dwell on that thought, so that's all for today
Day 15: What would you say to people newly diagnosed with this illness?
Oh boy, here we go. I'll split it up and say something for each illness (though I probably won't write about all of them). That sounds a little simpler. Plus I'd always say, "Let me know if you need to vent or talk to someone" because it's important to have someone to talk to when a lot of people don't understand.
-POTS: "A lot of doctors won't be too informed about POTS, so be careful who you rely on. Also, it's important to strengthen your muscles--especially your leg muscles--before the illness gets worse. This will keep your blood from pooling too much. And don't be afraid to take medication, as it can really boost your quality of life, and that's important. Oh, make sure you drink lots of water and consume a lot of salt--and take vitamins/minerals if you need them! Compression garmets are great, but I heard overusing them might make your body preform more poorly on its own, so you might want to watch out for that. Importantly, POTS can be different depending on the person, so try not to compare yourself to others or doubt yourself in anyway. No matter what you do to take care of yourself, I'm sure you're doing your best. One of the most important things is learning your body and limitations, and that naturally takes time, so please don't rush yourself, either."
-Ehlers Danlos III: "#1: Take care of yourself, and don't put your joints under too much pressure. With EDS, it's easier to permanently harm your joints, which can make your condition worse overall. #2: Muscle strengthening is important if you can do it. A EDS-informed physical therapist may be hard to find, but if you can find one, it's a great resource to have. If you can't find one, there might be some resources/guides online on how to specially strengthen muscles when you have EDS. You just have to be very careful with it. Also, I've heard positive things about swimming and palates for EDS. #3: Braces are great, but they can weaken your muscles and cause your body to be worse at supporting itself on its own. It's good to find a balance when it comes to bracing, but if you feel like you should brace something to get rid of pain, don't beat yourself up for it. #4: Don't be afraid to take pain medications, request accomidations, or use mobility aids! Many people turn ability aids into a fashion statement. There are endless possibilities, and your life isn't over!!"
-MCAS or other mast cell disease: "#1: You're going to have to do a lot of research on your own. Doctors are going to be really uninformed about this one, and it's often misrepresented as an 'allergic disease.' It's much more than that. Mast cell diseases can cause basically any type of bodily inflammation, and is often mistaken for other conditions and can even cause other conditions. After all, mast cells are a huge part of the immune system. #2: FIND YOUR TRIGGERS. This is really important, though it definitely is difficult. You may have to go on an ellimination diet or live out in the middle of the desert, but knowing what sets you off gives you more control over how you feel. Be aware that your triggers can change, so if it feels like this is happening, you're not crazy. #3: There will also be a lot of experimenting with medications. Being a newly researched disease, this isn't an exact science yet. We basically have to study ourselves. #4: You may never feel 'normal' again, but with the right medications, you can greatly increase your quality of life. Don't give up."
-Narcolepsy: "Okay, narcolepsy is different for everyone, and even if you're not getting hallucinations, sleep paralysis, cataplexy, etc., your experience with it is valid. You're going to be sleepy all the time, but on the bright side, with the right medication(s), you quality of life can greatly increase. It's something to look forward to. Also, those with narcolepsy, even if they sleep soundly at night, could actually be having disturbed sleep without realizing it. This is from the abnormal sleep cycles narcolepts experience. Your doctor(s) may not bring this up, so you might have to ask them about it. Plus there are quite a few lifestyle changes known to help some people, so those are worth looking in to! And even if being sleepy all the time becomes the norm for you, you still have to carry a load many people don't have to carry. Don't beat yourself up for doing poorly at school/work; other people complain about sleep deprivation effecting their preformance, so your preformance is always effected! You're doing the best you can."
-Small intestinal bacterial overgrowth: "The diet is probably going to be the hardest part, but you can definitely look forward to feeling better! Even if you have to stick with the diet for the rest of your life, you have the power to make yourself feel better. If you mess up on the diet, that's okay. We all make mistakes."
@huggerofcats
I have EDS and POTs!
Day 15.
What do I say to people diagnosed...?
I say that they're entitled to feel everything they want. I also tell them that don't need to fulfill anyone's expectations but their own... And that they can survive it.
Day 6 What would you have told yourself?
Hearing loss - Insist on the help you need at work. Its a given for me now, but in the early days, I made too many compromises.
JHS - Stop stretching and work on strength and endurance instead.
Day 16...
I have two quotes
1. Good can come from broken - Lana Parrilla.
2. There's nothing in a caterpillar that tells you it will be a butterfly.
both are reminders that no matter how bad the situation is there's hope.. And I like that.
