Chronicles of Life with Multiple Sclerosis
Number one change I’ve been aware of after #MS diagnosis thats not pain related (excluding my blind periods) is my growing inability to read normally/ at all sometimes. I can’t process words properly, need to make font 100x larger, and read really slowly & repeatedly to process at all. Big difference for someone whose essentially been reading for a living for her whole life.
Noticed a big change right before the optic neuritis incident #1 (that lead to my official diagnosis of MS and acknowledgement that I did not have lupus) and has gone on since then. It has made me afraid to pick up a hard copy book or read anything too substantive longer than 5-6 pages. The moment of frustration when you should have read the whole paper but are still on the second paragraph of a front page story is emotionally painful as well.. thus the avoidance.. which is in and of itself detrimental to cognitive ability. Regardless, I still refuse to get rid of my books and & built myself a small library in my studio apt (which I then color coordinated haha) #silly
couldn’t have said it better. This is a campaign worth starting
Chronic illness doesn’t have one face. I have both severe Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and Postural Orthostatic Tachycardia Syndrome (POTS) plus a few related conditions brought on by these. When I’m able to leave my house (which is about once a month for a few hours), I get perceived by the general public as a healthy, capable young adult, and many people will judge me for using a handicap spot at a store, or for excusing myself from a conversation to go sit down. “Invisible” illnesses are real. You never know what challenges someone is facing just by looking at them or interacting with them for a short amount of time. Please don’t judge those of us who don’t “look sick” to you if we ask for accommodations an able-bodied person wouldn’t need. We need them. We exist. Don’t make us invisible.
Things have gotten pretty bad around here both health wise and financially. I put in my preliminary SSI application and received the followup questionnaire this past week. The form came already 10 days past the date on the form while demanding I get it back to them in ten days. It’s getting to me today. After 5 days of working on it on and off, wanting to provide the most accurate details of my condition and ability to function, I’m exhausted and kind of depressed.
I appreciate that they want details about how my disease has changed my life. I think its important that they hear these things when deciding if I’ll get any help getting on with my life or not. I want them to really understand what things are like for me now. What I think is forgotten (on top of the massive number of questions and intense time and energy it takes to fill this thing out) is that you are asking me to sit down and write pages and pages about every thing that I can no longer do. They want me to describe every part of my life that sucks and exactly how much more it sucks due to the illness than it ever sucked before. I’m to detail every ache and pain, every anxiety attack, all the new found embarrassing moment, everything I’ve had to quit because of this illness and how people around me have reacted and how many people have left my life because of it. Please tell us how your hopes and dreams have been crushed by this. Tell us why you’re failing at functioning and need help from the state because you can’t do things by yourself. Tell us how much pain you’re in and how long it lasts and if you can just drug yourself to get over it or if that doesn’t help. Tell us all this, in detail, in 6 different ways, and let us decide then if you are disabled or just lazy. Don’t worry we’ll get back to you by December.
As a younger person my fear of this application is intense. Representatives say I’m not old enough, don’t appear broken enough, have had too much education I couldn’t finish, to need help. Never mind that I’ve never been able to ask for help in my life. I’ve always the helper, fixer, therapist for those around me… that people have started resenting me for not being able to do that anymore. Never mind that I worked for years on a PhD that I will likely never finish because my ability to read and process has declined so much I can’t remember what I read when reading the abstract of an article. Oh and not to mention that the people I helped are graduating and I can’t lift the boxes of articles I intended to use. Now I think about being able to get to the grocery store since I’m alone and if I get stressed I can’t see, now I think about if I can keep smiling so as to not bring down my friends and family. I don’t know.
I think this post is really just my needing to say, nothing feels like taking a hot bath in salt water after having your skin ripped off like sitting down for 5 days and detailing everything thats gone wrong with your mind body and social life since you were giving a diagnosis thats precursor was also decline. It hurts. I can only do so much at once… and I’m worried I’ll miss a deadline (the one they already missed for me)
I know I’m whining here. Please don’t get me wrong. I am grateful that resources exist that I might even maybe be able to take advantage to help me try and get my life back on track. I know this is nothing in comparison to so much else happening in the world, to people every second of the day, that this is just a hurdle I need to jump through. That I was so lucky to begin with that I should be glad I had this far to fall. I know these things. I believe them. I really do. I’m angry at myself for letting this get to me so much. Sometimes, though, even when we know we are lucky it doesn’t stop the emotional exhaustion that it causes. Because the food stamps I was just able to get are a miracle but they don’t pay the rent. I just found a neurologist that could actually run the proper tests and will take my insurance and I still haven’t found a treatment plan that works for me.
This is not a unique story! Mine is mild to say the least. This is the story of so many people suffering from chronic illness, whose children or parents are suffering from chronic illness. Contemplating treatment options with high risks, getting tests run every other day, all while wondering if you’ll be able to pay the bills this month is painful, literally and figuratively. I’m sure you all understand that with chronic illness exhaustion doesn’t just stay in your head… we are the mind body connection personified.
Blerg. So I suppose I’m giving up on finishing this paper work for tonight. I slacked on it today. I should have finished this faster. I just can’t do it anymore today. I hope this doesn’t end up screwing things up more than they are now. I’m just so damn tired.