To create awareness I have to keep blogging about the subject. ?
The past two weeks it went amazingly well, what always gives me the hope that I am “cured”. ?
I have to be careful I don’t do too much, because I want to catch up all lost time, which is impossible.
A mistake I tend to keep making. ?
Being chronically ill has a huge impact on your life, your mental health, but also your social life.
I lost a lot of people in my life, because they didn’t understand me.
Many people only see the outside, but what lies beyond can be so much different. ?
I am often seen as a hysteric bounce-ball, which isn’t really untrue, in the presence of others. ?
I used to try being my ‘best version’, at the expense of my energy.
Although I am naturally a bit vibrant, nowadays when I don’t feel good it shows. I don’t pretend to be different anymore. ?
I used to have a friend, we’ve got to know each other in high school and the friendship continued for years afterward, until the following happened;
She criticized a lot about me being sick. “Are you sick again?”
Yes! I’m sorry I don’t do it for fun. ?
When she got married a few years ago things went wrong.
She was a proud bride-to-be and she kept me telling me, or more insisted, not to have migraine on her big day.
I warned her, because stress can trigger migraines. ? And as if I could have a say in it.. ?
There would be a bachelorette party and I was invited.
At that time I had more health problems, unfortunately migraine is not my only disease. I was scheduled for surgery, nothing big, but big enough for me.
In the end the surgery was canceled, my doctor thought it wasn’t necessary anymore.
When I received the call for the bachelorette party, I made clear planning isn’t easy because of my illness and that there would be a chance I had to cancel.
The lady in question, who threw the party, was very understanding and even offered to me to pick up. (I had no car at the time and not even a driver’s license yet, I think. ?)
I have never heard anything about the bachelorette party again and I was surprised to see the photos on social media. ?
The bride was not-amused and showed me. In her eyes, my explanation was not good enough and I was looking for excuses.
She then told me again to be present at her wedding, her literal words were; “Otherwise I’ll grab you by the hair and drag you to it.”
It’s awesome that a friend really likes to have you in her wedding, but it gave me a lot of stress. ?
At that time I was pretty down about my life, especially due to my health problems and I had difficulties dealing with crowds.
The day of the wedding arrived and during the day I felt a migraine coming, I took medication. I even dressed myself and put on my make-up, but unfortunately the meds did nothing and the migraine got worse, so I decided to lie down for ‘a while’. ?
In retrospect, I often think, if only I had … But you don’t help yourself thinking like that.
After what should have been a nap, I went into a deep sleep, thanks to the medication. Hubby didn’t wake me up, because he knew it wouldn’t make a difference, he knows how sick you can be from migraine.
In the end, I woke up a bit past midnight with a terrible feeling of guilt. ?
I immediately texted my friend and explained what happened, but the harm was already done.
After various failed attempts to tell my story, that was the end of our friendship.
I thought I just learned my lesson, but it happened again.
Another friend was getting married. (What is it with me and weddings? ?)
Once again there was a bachelorette party and I was invited, which I quite liked because this time it was a group of friends.
I had a little luck that the communication about the party was in writing, so I could check later on if I really was wrong.
As I always did, and still do, I made the appointment cautious and explained again that I am sick. Unfortunately, diseases don’t disappear for fun things. ?
I told them to not count on me being there, but I asked if they could ask me again a day before, maybe I would know more then and I could still attent.
Unfortunately this was misunderstood and I got a few days in advance a message to transfer €100,- for the party. ?
I was shocked, I told them I didn’t know whether I was coming.
Apparently they counted me in and now I had to pay €50,- because of a booking they already made, it was the cancellation fee.
I had told them to don’t rely on me and my finances were a bit tight at the time, so €50,- was a lot of money for a party I wasn’t sure of attending.
These sort of things could make me pretty upset and it did. ?
The day of the party I, of course had a migraine, was lying in bed for already a day and was hardly approachable.
I was at my mother in law’s place, which fortunately has a spare room where I could sleep in peace. ?
My phone kept ringing and in the end, my mother in law answered and told them I was lying in bed with migraine.
This was not accepted and I was being told it was childish to let my mother in law pick up the phone.
The fact that migraine is so severe that lifting your arm can be too much, often know only people who have experienced it themselves.
These friendships are also never recovered, though I have these girls on Facebook, so that’s something. ?
Because of these experiences and more, my social life has changed.
Always explaining myself, being cautious about making appointments and explaining why I really need rest after a busy day is exhausting. ?
Now that I have come to terms with my limitations (although this depends on the day and my mood) I am more selective in my social contacts.
I know a lot of people and making contact is easy for me, although I like to visit someone every week, it’s not feasible for me.
Besides blogging I’m also writing a book, I’m busy with two studies (which got very little attention lately. ?) I have to run a household and also would like to give Hubby some attention.
With my energy level that’s already too much, so to also keep everyone happy, would be at the expense of myself, even though I want to ?
The people I now have in my life are awesome, all of them. ?
They know my situation and make no demands, something I don’t do as well.
Friendship need to be voluntarily and free and above all exist on mutual acceptance.
We’re not all the same and that’s what’s beautiful, this way we can learn from each other. ?
Try to sympathize with another, especially when someone says that he/she/it is ill.
Not everything is visible, you never know what someone is dealing with it. ?