Yesterday, evening, around 4:00 pm, I started to feel anxious, irritable and my nose became very stuffy, and I knew then that I was in trouble. It was happening again,…my migraine-headache pain is breaking through my medications and I felt it would hit me hard overnight. I went to bed and just asked God to please let this one pass….
I took a Maxalt, Phenergan (for nausea), 2 pain pills and 2 Ibuprofen. Ibuprofen is my go-to anti-inflammation OTC medication. I am also given Toradol and will take that after a small dose Ibuprofen wears off if the Ibuprofen hasn’t helped. Sometimes Ibuprofen and pain pills will do the trick. I take a probiotic every day and surly each time I take an NSIAD, to protect my stomach lining. I also take Prednisone when my pain is at a #6/7 as my first line of defense to see if it takes the migraine away and if not-that is when I go to the hospital. I normally go to the hospital when my pain level is a #7. I am too afraid to wait for until my pain rises higher. It takes time to check in to ER and get back into the room and wait for the nurses, then the doctor. So usually by the time I am given medications, my pain is at an 8 or 9.
I have been bad.
There is something called ‘Self-sabotage’ where one can think, ”I’ve done so well, I deserve a little more, or I deserve to be bad or I deserve a treat” …these are the type of tricks that your brain will play on you. And it got me this time.
I was doing so well, and posted about it in previous posts! I have done exactly what get’s a lot of people in trouble…and that is I felt so good, I stopped doing the things that keep me from having break-through pain and was living life like I do not have Migraine disease. And damn that felt awesome for the last week! Not to have to worry about the maintenance my life takes just to have a some-what of a normal day (normal for me). Looking back on this past week, I went about my business if I was not sick at all and f&*k it has felt great! I have not worn Celafy in a week, only have done yoga once in the last two weeks, have not been meditating intentionally (although I’ve been writing and creating a lot recently and that is a form of meditation for me) and have not been sleeping well at all.
I do have a support system, here in AZ and back home in MI. I lack support from 2 of the most important people in my life, or rather they are tired of supporting me (it has been 11 years for peets-sake, I sort of get it). My Brother does not ask how I am feeling. I don’t even tell my family when I am having an episode much less when I have to the hospital. They have no idea how sick I am, how many down days I have and how often I have to seek urgent medical care. They are men and perhaps they can’t be bothered. My Brother pretty much told me he “could not be on this roller coaster with me”…sad but true. Thinking back I am really hurt he said that to me. That conversation broke my heart. That was 1.5 years ago and I’ve not said anything about my migraines since. My Dad, his wife, and my brother and his family came to visit last year and my conversations with my Brother were very shallow like or I guess you could call it “small talk”. I feel so far away from my Brother. We are very different and I hurt him when I moved out west when he was 18. Our Mother had recently passed and I think he felt abandoned. So there’s that.
My BFF is sick with alcoholism. And I feel like I am giving and giving. Yes, she is a great person and I love her like a sister, but she has a disease she does not want to cure. Lots of drama and I find myself carrying her secret and making excuses for her when she behaves irrationally or stupidly. Her choices have led me to develop space between us and I have made new friends who have values and likes similar to mine. I needed too to bring joy into my life.
I have lost a few of my close friends because they either can’t handle loving me when once after I got sick than did not get better or have moved on because I am not on the same page (I am referring to income mostly) nor do I have the connections or even cool stories about my old career anymore. Or they don’t agree with the medications I am taking…it’s an endless list. My friend told me I was using “drugs” to mask my pain so why should it be any different from her using alcohol to soothe hers…but sadly she is a full-blown, life falling apart, about to hit rock bottom, alcoholic and it kills me to see her like this. I don’t particularly like smoking medical cannabis. I like it because it has taken my pain patch doses down from 275 mcgs-50 mcg to date since I started smoking the flower. I have gone off the patch before and my pain is quickly there to show it’s ugly face. I don’t like how it makes me feel (sometimes like a Zombie and I can get silly). Medical cannabis compliments my medical and alternative care routine that I and my doctors have all agreed on and have prescribed. This medication is helping me feel less stressed and have fewer episodes and also have less headache-migraine pain. Medical Cannabis helps to keep me out of the emergency room.
Have you lost people you cared about or thought they’d be there for you or you thought they were a good friend,..then one day…poof…they are not in your life as often, then even less and less?
Any disease is hard for an outsider to understand much yet be around. It scares people about the possibilities of what can happen to them. Some people are confused and will need help as to how to help you. Explain to your tribe how you’d like to be treated when you are ill and how to support you…even if that means them leaving you alone. They need to know how to help or else they will feel helpless and will create distance from you.
“When someone is ill you feel sorry for them. But we’re all busy,” Dr. Feinberg says. “We say we care and things like that but the reality is, except for our immediate family, we don’t want to be reminded of our own mortality.” Source health.com
Migraines are not an aging disease, it attacks people of all ages in various degrees. You don’t get older and get migraines unless you do. And God be with you if you do. My point being, you can get sick with chronic migraines at any age. No one is protected a100%.
I wonder how many people I have become acquaintances with or I’ve met a friend of a friend and have wanted to get to know that person more, have not been interested in being my friend due to me having a chronic disease…
On the other hand, I do have much support in my life and I know I am very lucky. I am not wealthy money speaking, but I have a wealthy life including an amazingly awesome husband and a well trained cuddly soft doggy, both bring me comfort and support. And I love where I live.
My clients and friends and some of my family are all always there for me,…without judgment. People share with me an article they read that could be helpful to migraineurs or a new drug that helped a migraineur they know or a new technique or therapy. This could happen a few times a week to once every couple of weeks and to be CLEAR…I am grateful for everyone’s input and suggestions or sharing their stories with me. I feel very loved. 🙂
Who do you desire support from the most? Is it possible for them to give you what you need? Can you make revisions of your requests if needed, could you spread out the support you need and get it from several people, so it’s not on all one person? A church or religious or spiritual organization, specialized groups (card clubs, book clubs, hike with friends who are on your level) are great ways to get involved with the people in your community and meet some nice supportive friends. Usually, people want to help and groups want to help. I participate in online bulletins and blogs for migraineurs to talk to each other, no matter the location. I also attend a church and a yoga class that is very supportive and it’s social time which his very important for people with an invisible disease. Always share your experience so others can learn from it, good or bad, we all need help and we should be open to that. I listen to stories and read stories of other’s sufferings and people’s success with chronic disease, especially those with migraines.
I am not grateful for how some of my family is still punishing me from moving away when I was twenty-two (24 years ago). As I said above, my Mother passed and she was loved by so many. She was an Angel and surely is one after death, wherever she may be. When I moved away it was another loss for my family, quickly after she passed. I moved to Colorado where my BFF lives and she had also just lost her Mom. I moved in with her and her fiancé and we all supported each other dealing with grief. I needed to get away from my family which leaves me feeling g overwhelmed. I felt immense guilt about that leaving but I was figuring out who I wanted to be and also trying to meet my own needs..trying to live and heal, where I felt the best. I think I still have a lot of guilt. But I needed to go where I could grow, plant roots and create a life for myself as a young woman. I moved back to Arizona about a year later and have been here for 19 years. I found my peace here and I very much enjoyed backpacking in the backcountry or finding new adventures and experiences. I knew I needed to be in AZ, I could/can feel it in my heart and soul. This place is beautiful…far from what Detroit could offer.
I am so glad I traveled and took risks in my youth because I am restricted now. It’s too late for anyone to do the things they love and if it doesn’t happen perfectly, as you play it out in your head, it can be uniquely perfect for you! You have the power to be who you want to be, be creative,… be British for a day and have an accent (I have done this and it’s great fun!).
We lose people throughout life. There’s that saying…friends are for reasons, seasons or for a lifetime. Remember that …it’s not always about you and what you did wrong. And changes like this to happen in our lives on the regular.
I found that my tribe (my supportive friends and family) better supported me once they understood my limitations, and it is truly imperative to tell your support group what you need when you’re in chronic pain. Tell them what type of support you need. Be clear and sincere that “this” is what you need. “People want to help, but when it comes to the relationship between the non-sick and sick can divide you if the non-sick is confused or even afraid of knowing someone with a chronic illness.” Dr. Feinberg says. Source Health.com
My friends and I plan things to do earlier in the day because they understand I run out of energy early in the day. They have no problem with that. They know I am asleep around 2:00 p.m. so they don’t call, and I am grateful for that. They know I can’t go to loud places and I am afraid of sunlight (I love the sun and how it makes me feel, but only for a short time). We will go for morning hikes and walks, meet for coffee, turbo shop at thrift stores, we create things and do projects such as Vision Boards or setting goals and creating accountability. They don’t expect more than I can handle.
“Many people with chronic pain, myself included, look to others for validation and understanding,” says Rebecca Rengo, 52, a St. Charles, Mo., resident who suffers from several pain conditions, including fibromyalgia, and is the author of Beyond Chronic Pain. Source Health.com
Most people are caring and giving but if they are not sick they cannot understand what it is like to be chronically ill. It takes a lot of energy to get people to understand and that is very tiring. If you don’t have the support you need from others, turn that around and give the support you need to yourself! Give yourself credit, validation, support, empathy, and strength. Hug yourself and tell yourself “I love myself” Be your own cheerleader (I am always cheering myself on!).
Be kind to yourself, find your tribe. Invisible illness does not have to be isolating.
Be the best you, you can be and you will be richly respected…we all can be someone who seeks opportunity, remains joy-full, fighting for love and life and start living life on YOUR TERMS!
Thank you for sharing this sacred space with me.
With love and care for all those suffering…
Note* I usually post my new blog entries every Tuesday/Wednesday, so I apologize it’s Friday and I am just getting this one out. I was a busy week but I will focus on being consistent. :
Note* I usually post my new blog entries every Tuesday/Wednesday, so I apologize it’s Friday and I am just getting this one out. It was a busy week but I will focus on being consistent. 🙂