This has been a very trying week to say the least. I don't know why, but this has been a very difficult week full of lots of tears.
I am not giving up hope nor will I ever. I am determined to make a difference in this world. Why am I so open and share so much about my life? Do I do it for attention? NO, not in the least. I decided a while ago that in order for others to understand how truly horrific migraines can be, they needed to see the good, the bad and the ugly. I felt that if I were only sharing the happy moments of my life, it would appear as though my life is all sunshine and lollipops. Of course we don't like others to see us at our worse, but I gave up on that a while ago. If they don't see migraineurs suffering at their worst, the stigma will live on. It was very hard to open myself up and share all the details of my medical issues. Sharing my story has been very therapeutic for me. I am able to educate others, as well connect with so many people that suffer with migraines and other comorbid illnesses as well,
Throughout this journey, I have learned a lot. I don't take the little things for granted. I try to spend as much time with my family as possible. Before I was diagnosed with Chronic Migraines, I had no idea that migraines could be chronic. I thought there was no way that I will have that many migraines a month (15+ ). I thought I was just having a few horrendous months, but they would pass and I could get on with my life. Boy, was I ever wrong. I have migraines every single day. My baseline pain in 5/6, but I can function through it. I push myself. I am determined not to be a couch potato and do nothing with my life. That isn't me. So, I have found a few things to help occupy my time and learn at the same time.
I started "Making the Invisible Illness, Visible" on Facebook, because my daughters highly encouraged me to do so. They were like, having your own FB page will help boost awareness. My oldest daughter told me that it would be very beneficial, because my personal page wouldn't bombard all the people that didn't want to read about my migraines and such. Creating that page has helped me so much. I share personal things I have gone through, I provide educational links so people can learn more about a specific illness, I post inspirational memes, and whatever else I feel like. I think it helps me to talk about it and share my experience with others.
I would like to update my blog every day, but I am too sick or too exhausted to think of a sentence, let alone several sentences.
I am very depressed right now, basically because I'm stressing about finances. I am also grieving the Amber that I once was. I fight. I am determined to get to the root of all of this. I refuse to let the chronic illnesses define who I am. I want to have as much control of my life, that I possibly can. I use up all of my spoons in a day and I have to borrow from other days, just so I can spend quality time with my family. There are days that I know I am going to pay for it later, but that's ok. I want my family to remember happy smiles and positive outlook can make a big difference.
Living with a migraine every day, can be challenging. I don't do anything for my migraine until the pain starts to escalate beyond by baseline pain level, which is a 5/6. There are trigger I can avoid, but there are several I have no control over, such as weather/shifts in barometric pressure, full moons and other environmental factors.
I do my best to just keep dancing it out, but some days my body wins. I do need love and support, every chronic illness person needs love and support. Thank you for reading. Hope y'all have a good day, free from pain.
1 comment:
Amber, thank you so much for your courage and selflessness to share yourstory. So many things rang true for me, I don't know where to begin.
I have had a debilitating chronic pain syndrome that started in 2003 at the height of my personal and professional life. After going to doctors, healers, acupuncturist and pain clinics over this span of years has provided few if any real ideas as to the cause (s) of my illness. It has left, in it's wake, a path of destruction of failing relationships within my immediate family and the loss of my career as an RN educator.
When you mentioned that no one wants others to see you at your worse, it hit me like a bolt of lightening! This is just one of many fears I have which has left me somewhat agoraphobic for the past couple of years, to site one effect.
If you like, I would be willing to share more of this if you feel it would be beneficial. Thanks again, you are a warrior! John P.
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