I am having a new manifestation of a symptom of Ehlers Danlos Sydrome. My saying I always say is “there’s always something”. I am having weird muscle spasms/twitching in my face and arm and legs. They aren’t painful but they seem to almost confuse me and make me forget what I am doing and where I am. I’m worried as thy are becoming more frequent happens 3 to 5 times a day.
What no one told me about having Ehlers-Danlos Syndrome is that sometimes it’s easier to smile through your pain rather than try explaining what hurts or what’s bothering you.
No one told me that was going to wake up feeling like old person every day. No one told me that pain was going to be a part of my life for the rest of my life everyday.
No one told me I would have to lie about how I feel on a day to day basis because trying to explain how you’re feeling or why you’re feeling a way seems to come back and bite me in the ass.
No one told me that because I am young people who are older than me would pass judgement on me and my issues.
No one told me that I would have to constantly be on the lookout for places to sit because my joints can’t handle standing for longer than a certain period of time.
I felt that when I made this page I would not get any followers but I’d begin to make sense of Ehlers-Danlos Syndrome and how I can fit that into my life as well as going to college and maintaining friendships and family relations. While I am aware I don’t have a lot of followers those who do follow me do so because we want to feel like we aren’t so alone in this battle that is invisible.
But I want to make my page more welcoming even to the point of giving advice and just making friends. So I am going to try to do things about me.
- I love dogs
- I love going to the beach with my mom and sister every year.
- I love jewelry mostly rings. I have like a huge amount of rings for any occasion.
- I love salty foods like french fries and potato chips.
- I love iced tea especially Starbucks venti iced tea lemonade mango. It’s especially good if you’re like me and forget to drink water and get migraines or headaches. But when I do hydrate more than normally I will get an iced coffee from dunkin donuts because coffee is dehydrating and I have severe IBS-D.
- I love painting nails and I am going to nail tech school in the fall
- I am finally really happy right now
I haven’t posted for a while. And while I apologize I have some excellent news. I am no longer in my splint and I don’t have to do physical therapy for my wrist as having EDS has given me my whole range of motion back already.
I also haven’t posted for a while because I have started my nail Instagram where I post everything nail related. And while currently I am attempting to grow my nails out which is working I still have been putting a lot of my focus and energy into that.
I also have been trying to get back into the groove of school of taking notes with my hand and i took my first test last week by myself and wrote it all on my own. I was really proud and stressed out even though I knew the material really well.
I will be going from this class to two summer classes which I am oddly excited about. They are my general education classes. But like there is something very satisfying about being like yes I am doing all this stuff even with all my limitations and constant exhaustion.
Then in the fall I am going to nail tech school!!! I am soooo excited about it. But let me explain. While yes my goal in the end is to be a teacher paying out of pocket for ccac has proven to be slightly straining but satisfying all the same. But I have found such a love for something I have always deeply loved. It’s a four month program and I would likely go right into working at a salon which there are a ton of around where I live. And I would make side cash that would help pay for college and possible better rent able place for my mom and I to live in.
So yes I am going to be a teacher eventually. In the meantime I am going to focus on getting my nail license and eventually do people’s nails and make money.
Happy Saturday! Sorry I haven’t posted I’ve been busy with school and the other day i did something kinda crazy for me. I made and instagram for nails. I love nail polish and glue on nails and trying new nail products and polishes. If ya wanna follow me on Instagram its @nailsbyemmexo1198. I just wanna do stuff and be like ya i got eds but here’s something i did.
Havea good day all!! Xoxo
So story to time and rant time. I am apart of this group on Facebook and lately I’ve been realizing people are really just dragging everyone down. It’s an Ehlers-Danlos support group and at first I got support then people started going at each other for petty things. And then began the “who’s left-handed and has HEDS?” and I can’t quite begin to explain my anger and frustration of this post. Because simple things like being left-handed doesn’t make your EDS more real than someone who’s right-handed or ambidextrous. So why does this frustrate me? I guess it’s because while no one knows what gene specifically is the reason we all have EDS but I don’t think it has anything to do with what hand you write with or what color your eyes are or what your favorite ice cream is.
And then this happened I got surgery on 2/8/17 and last night I realized my splint looks like a butterfly cocoon. So I created this picture and posted it to the group and said how the resemblance is uncanny. And someone was like “that’s funny but your picture will be deleted because it doesn’t follow the rules”. And so at this point I am thinking are they suggesting my splint is too graphic and I go comment back well it’s not graphic or bloody so I can’t see why. Well they said all pictures must be posted in comment section it’s the rule. Well let me tell you I have been apart oft his group not for a long while but when I joined it was never a rule. The only rule we had been if it is a graphic picture like rash or blood or something post it in comment section. So then this morning I see someone had posted a picture and everyone on there was commenting something good and nice and not saying it will be deleted etc.
I just feel that we all have EDS and a lot of other health issues too. So I don’t fit into society already but suggesting that I have to further fit into a mold of what EDS is because of my handedness and also by not posting a picture except in comments I feel that It’s really petty and almost like me having EDS isn’t fitting into this mold of this support group.
We are all in this fight together why make it harder than it has to be to fit into a diagnoses you already have and affects your day-to-day life.
There are certain times or events in your life that you must be like I am putting myself first and that’s it. While I know it’s easier said than done. When it comes to dealing with selfish people in my life who take what is happening to me and turn it into “woe me” for them well let’s just say I tend to lose my temper even with all that deep breathing.
Not everyone understands that you don’t want to sit there and listen to all about them while you’re dealing with say a looming future surgery. For me anytime I say I feel nervous or anxious about my future surgery I get the typical response of them twisting it into something else like “oh she misses me so much” or “I’m so upset about it too” which believe me I might miss you and believe me I know you might also be upset too but that’s not the point of me saying “I’m nervous.”The point of me saying
“I’m nervous about my surgery”, is that I am not sure how to handle my bad nervous energy and I need emotional support. Not the other way around where yes “I’m nervous” but that doesn’t mean I have the mental ability to help support you emotionally. While I know that I am strong because I’ve had six other surgeries that doesn’t mean I want to hear you complain about how you feel about my surgery and make it about yourself.
When someone like me who is on to their seventh surgery I want emotional support from people and not me giving you emotional support.
More importantly the lesson with having a chronic illness is that you have to be okay with putting yourself first emotionally and physically. It’s hard because I’m constantly seeing other’s around me need me but I can’t even really support myself emotionally right now so supporting someone else is such a far fetch idea sometimes. While there is no easy way to put yourself first without risking losing other people in the process if those people are good they will be willing to try to understand your situation and try to stick around and help you.
Only when you feel that yes you can help your friend or family member without hurting yourself is when you know you’re okay. Helping someone can be good but if it stresses you out it can hurt you more than help the other person in the long run.
Helping yourself isn’t being selfish it’s putting your priories in order and realizing that if you help someone else with an issue they are having you may be risking your own health both physically and mentally when really all you can offer that person is just being there for them.
Because sometimes all a person truly needs is to know that you’re there for them and willing to stick around for a long time.