Social Life Impact
I thought I saw an article on migraines and how they impact people’s social life.
What I wish friends and family would understand
I see my siblings and friends going out socially, to work, or taking a vacation. Am I jealous? Yes, I am. But I am sincerely happy for them that they can so effortlessly do so without the worries I have.
For instance, currently, my sister is on vacation with her daughter and boyfriend. I talk to her and see her posts on where they went and so forth, so I see what she is doing. They are driving around to various places to site see.
I so wish I could do those things also. I can’t even think about going up to the state my brother and sister live in to visit them. It’s a two-day drive and the reason I would drive is so I can take my dog.
I’m on disability and work when I can, but I am mostly at home. Why? Various reasons.
Migraines every day is the main one, one is that because I am on disability I am on a fixed income and really don’t have the extra money to travel. My dog is very attached to me because I am home all the time, and I don’t think he would take being away from me very well.
A few weeks ago, I scratched my cornea and was unable to take him to the dog park or even really walk him (I could not see very well out of that eye, it was very light sensitive, so the house was closed up tight and it worsened my migraines). I felt so bad for him, he’s only just 2 years old. Dogs don’t understand.
One of my dog park friends offered to take him for the day so he wouldn’t be sitting in the house with me all day. It lasted 2 hours, he whined and wouldn’t settle or play with her dog the entire time. I had to go and pick him up. I really shouldn’t have been driving but I felt terrible that she would have to have him until her neighbor came home because her husband was at work, and he had the car.
I feel guilt that I am upsetting the balance of other’s life with my problems and issues. So, I drove to her house with an eye patch on, got pulled over by the cops because a back break light was out (I had no idea), was given a warning (thankfully), and was able to pick him up and get us both home safely.
I wasn’t able to drive for about 2 weeks afterward and had to have my food delivered, I had to get Lyfts to my eye doctor and had to put that on credit because I live disability check to check and now have a big balance I have to pay off when my eye does heal enough, I am comfortable enough to do my self-employment work. Thankfully a neighbor was able to take my dog out a few times during the day to go potty.
The impact on my wallet
As it is, I only usually make about $60-80 a good week which pays for gas and groceries. I have migraines every day varying in intensity from week to week. I can go weeks with being somewhat OK or weeks with not being able to do anything. No warnings, either way, it’s going to go.
What I don’t think most of my family and friends don’t understand is the economic impact of this disability and all the other health problems I have developed due to them.
The impact on my independence
I have always been very independent, not because I want to it’s because I don’t know any other way. I don’t know how to ask for help without feeling guilty for intruding on other people’s time. Every time I do ask for help, I feel the person I’m asking hesitating and not wanting to really-really help. They will sometimes but the guilt eats me up.
For instance, my desktop computer has been having problems for the last 2 years. My nephew helped me install and format a new hard drive a few months ago over the phone, but when it recently had other problems, he showed he did not want to help. So, I bought a refurbished one (because a new one is too expensive). The one I got didn’t do what I needed it to do because I don’t know much about the internal working of a computer and what the requirements I would need. I returned it.
I somehow got in touch with a sales rep that would build me a refurbished computer in my price range and send it to me. It took 7 days to ship to me and when I went to set it up it didn’t work right. I had to call customer support and in the end, they said it wasn’t configured right on their end and I would have to send it back and then they would send out a new one.
This is not something I can just do; I have to have enough energy to do each of these things. i.e. – setting it up, calling customer support, then packaging and returning it via the FedEx office. For most they could do this within a day, it took me one day to do each task and I had to push myself to get it done in that time because each task takes energy I really don’t have (i.e. – the Spoon Theory).
Yes, I would love to work and be able to support myself on my income. I was on schedule to do that and going to get my bachelor’s degree when I was hit for the first time with my daily migraines. I do think of where I could be if I wasn’t side-lined by them. My income would be very much enough to support the lifestyle I wanted. I might have bought my own home by now or gotten a boyfriend or married even…the possibilities are hard to think about so mostly I push them aside because thinking about what could have been doesn’t help.
It took 20 years of going to various doctor after doctor to first get diagnosed, then told by many different specialists after they tried everything in their arsenal to get approved for disability. My case ended up in a federal court after being denied three times. You see, I don’t LOOK disabled.
I have to give up on specialists every now and again because I have tired everything and when I do all I hear is “Don’t give up”, and I have to explain why I have and that it may take a year or more for me to try again with any new treatments that have come out. The disappointment is devastating to me, mentally and physically draining. And it’s not just the disappointment from not getting any help or relief from the doctors it’s the disappointment I feel from family and friends that “I’m just not trying”.
But now not only physically can I not work, but it has cause mental imparities that make me forget things quickly, unable to retain things, easily confused, and make a lot of simple mistakes (that if I was like I was before I wouldn’t have missed).
Back to the topic of “Migraines and Social Life”
I attended a funeral for one of my best friend’s mother last week. Thankfully, I could see a bit better in order to drive. She lives about an hour away from me. I grew up with her, we have been friends for over 40 years, I almost lived in their home for a while when we were younger, so I thought of her parents as sort of second family.
The day of the service comes and all I want to do is go to bed!!! I drive down, go to the service and then I go to the after the get-together. I enjoyed myself at the time and am proud of myself for going. But then comes the time I have to drive home and then take care of my dog. Ugh, exhausting. Then it takes about two days after that to recover enough to do most things.
My boring "life"
The only social life I have now is going to the dog park in the mornings with my dogs and interacting with one of my neighbors and her boys. That is all I can handle.
I wish more people understood the economic impact of having migraines and being unable to work and having to live off of what disability provides. It’s the stupid day-to-day things that get expensive.
Also, boredom. What do I do with myself when I am not lying down? There is only so much TV and reading that interests me. I am not crafty and have no time-consuming mindless hobbies to keep me busy.
Toilet paper, tissues, clothes, gas, and sometimes groceries – those are my challenging ones now. I can’t even think about what it would cost to go on a “vacation” for me.
My dark room: