People in the ICI Community need to be more supportive and less judgmental of fellow sufferers

dawn breaking

I was dismayed, sad and shocked by recent posts in the Invisible Chronic Illness Community bashing, criticizing and cussing out another in the community that found a way out for “himself” and he posted and shared his experience because he was finally able to break free from the vicious pain cycle and find happiness. I thought in this community and in the midst of all this blogging we were to share our experiences w/o fear of repercussion from another in the same category. I thought we were to be supportive of one another and encourage each other on, and then rejoice if someone has a breakthrough and feels better. I’m shocked at the lack of support I found. If a person was diagnosed with cancer and then was found to be in remission and for the time being considered “cured” that person would be ecstatic and that person’s supporters and other cancer victims would cheer that person on now that they don’t have to fear cancer anymore. Cancer is an Invisible Illness and often misunderstood and stigmatized as well. So when a fellow Migraine sufferer finds a way out of the dark tunnel we bash him? That would be like telling the cancer survivor “you don’t deserve to be better and happy-suffer with the rest of us and be ill!” Now I’m sure if you all sit back and think about it you would agree-we would not wish for a cancer sufferer to regain their cancer, so why would we want a Migraine sufferer to continue to suffer?

I have blogged about my 25 year journey with Migraines and how in May 2010 they progressed to daily intractable Migraines for no apparent reason, and I was not misusing my medications either. My panic attacks also got out of control as well as the Deep Depression I was in over the years long battle with what I then called the Migraine Curse and then everything else piled up on top. I felt like I was drowning in a deep dark abyss of pain and suffering. I had heart surgery Sept 11, 2009 for my long battle with an arrhythmia problem called SVT and by May 2010 I felt my whole world was caving in because one thing after another seemed to go wrong. I was battling Hypoglycemia and non-stop pain. I don’t have to tell all you Migraine sufferers out there how debilitating a Migraine is. You know all too well. But to recount my spells I can have them for 2-3 days at a time, get barely a break for a day and here comes another cycle. I have bad Aura’s prior and during an attack. I’ll  get a partial blind spot in 1 eye and very dizzy and easily confused and lose my balance often. I was already clumsy to begin with but the balance issue just gets worse with a Migraine attack. I get those lovey Icepick Migraines which I renamed Jackhammer Migraines-the stabbing pain behind and in the eyeball was so intense I’d think it would fall out if I bent over, or actually the pressure increased when I did bend over. I think whoever penned the name Icepick never had one in his/her life or they would not have labeled it with such a lame term. That temple on the same side hurts like heck and the skin will be sore to the touch all over my scalp. In fact after I get one of these Migraines I cannot not wash my hair until the pain subsides and even then it’s often too sore to wash-my scalp has always remained tender and sore to the touch and I’d lose more hair than I would have normally pre-2010. If I come into contact with anything artificially scented-someone wearing cologne, scented lotion, hairspray, cleaning supplies, candles, soaps-it will set me off. I am so hypersensitive to smells. Even the smell of Bacon is evil and I cannot tolerate it, but still my husband and daughter love for me to cook bacon, and I suffer afterwards.

I get very nauseous as a result and sometimes if I didn’t hurl into the porcelain throne I’d dry heave, which is worse than the actually vomiting. And I will often get chills or break out in a clammy sweat-it all depends I guess on how my internal thermometer wants to operate on any given day. If I get chills they seem to be deep to the bone and I put on my electric blanket for a couple of hours before I will stop shivering, yet my skin would feel normal if my husband or daughter would touch my forehead. Explain that phenomenon if you can. I cannot tolerate bright light or those artificial fluorescent lights. My husband will come home from work and complain the house is always dark because I live like a vampire-the curtains and shades will be closed and I will not turn a table lamp on unless I absolutely have to and I make sure it’s not too close to me. I have yet to find a dark enough pair of sunglasses to block the sun, that is how much the bright light hurts my eyes and adds to the pain. I cannot watch TV for long or read a good book, oh how I miss reading my books, because of the constant pain, the lack of visual focus and the side effects of the migraines is that I cannot comprehend what I’m reading most of the time because the confusion sets in. I have a ton of books and I love to re-read them but I have a lot of new ones I cannot even crack open and start and it’s like they are just begging me to pick them up, and I so miss my reading. I cannot stay on the computer long because the screen glare (even with the additional anti-glare applied to it) makes my eyes water, burn and adds still to the pain. How I’d love to go to the Movies when a new one comes out-but the noise and the moving screen would be too much. At home I can walk away every 5-10 minutes to recover and come back.

I turned my bedroom into a dark cavern I call my Fortress. Window darkening blinds, cark foam backed curtains, dark walls, dark floor, dark sheets-everything dark. My husband is not too happy it’s so dark but that one room is my Fortress-to slink away, curl up in bed with my ice packs and heating pads, turn on the fan and ride out the storm. I have my Migraine Survivalist Kit on my bedside table. A kit I put together over the past couple of years based on what I found were my essential needs during an attack to make it easier on me, and some various tips from other bloggers. So I only have to get out of bed to go to the bathroom or get more ice packs-everything else is within arms reach. I have an emergency kit in my purse for when I got out with my rescue meds and Migraine essentials. It makes my purse weight a ton and it’s a burden and my husband always loves to rag me about my “suitcase” but hey, I’m prepared.

And the noise. When I’m home alone during the day the TV is off! But when my husband and daughter come home the 1st thing they do is turn it on and ramp up the volume like they are deaf. OUCH! When I can get control of the remote (yep, good luck on that one) I will turn it down. Way down. When I use my iPod for meditation with my soothing meditation and Binaural Beats tones to relax and meditate during the pain I have it turned as low as possible where I can barely hear it. But then when my husband drags me out to his “playhouse” which is the Pole Barn to help him with his car project the noise is horrific and I must wear those noise reduction ear muffs. But the sound still comes through them. In the house when someone comes to the door the dogs bark like crazy and the one will howl like he’s on the hunt (he has Beagle in him) so imagine hearing that when your head is in excruciating pain along with everything else. Or when a major project is going on in the house and the spouse rips out the saws, electric drills, mini-compact air compressor, nail gun-HORENDOUS!! And then he likes to think I’m part male with as much testosterone as he and haul a monstrous humongous frig through the front door that barely fit through the doorway! Just to name one of many, many times I’ve been called upon during my Migraine pain the tasks to help him perform! But I’m not allowed to say “no” because he has no one else that can help him and then he rampages and goes on a tirade. Best to tough it out and suffer more later.

So I know all too well what goes into having Migraine Disease. And I was in such a dark hole of despair, anger and resentment I seriously considered ending it all. Yep, I actually considered suicide. Not once, or twice but a few times. My best friend intervened twice to stop me. The other times I  just chickened out and could not go through with it. But I was in the planning stages the other two times and I was so close to going through with it and I think that is why I told my friend so she could intervene and stop me. I was in such a dark hole of despair and thought I wanted to die to get away from it all, but deep down inside a voice told me NO. So that is why I believe I told my friend, so she could stop me.

That was a turning point for me. I realized that I had become so unhappy, bitter, angry, resentful, sad, lonely, lost, isolated and I blamed everyone including myself-even though I was doing everything right by avoiding all my triggers, trying to eat right, exercise and follow my doctors instructions and to not over-medicate to get caught in the rebound cycle. I was in such despair and mad at the world. I’d hear people make friendly suggestions to me on what they read or saw and I would blow up-I was so angry because I had done so much research all these years to learn what I could and even take info I found to the doctors to try out. I would think they were criticizing me for not doing enough when I was already doing more than my fare share. For someone to give me advice on a book to read because they just saw it online, but I had the book already a few years prior to their suggestion and I’m like “hey, I know this stuff already, so tell me something I haven’t tried cause I’m already doing it all”. I’ve done holistic, natural remedies, diet elimination and raw foods along with vitamins, supplements, massage, biofeedback, chiropractic, cupping, meditation, acupuncture, acupressure-the list goes on and on what I’ve tried to get these blasted things under control. And that’s not counting the traditional medical approaches. I’ve been to Diamond Headache Clinic in Chicago Illinois. All they did was experiment on me with drugs like the other doctors out here were doing. After a year of driving into Chicago with no improvement I quit going there. The drive was too much for me and would trigger a bigger migraine because my schedule would be so disrupted. I tried Botox in Dec 2010 a month or 2 after it was approved for Migraines. The insurance denied it because they were trying to argue it was NOT approved, then I had to have the doctor submit detailed documentation it was medically necessary due to the severity and duration of the migraines and to state even at that time I’ve tried everything else to no avail. The insurance company still found a way to deny it stating it was not covered under “preventive protocol” in their handbook and guidelines. So my husband had to fork out the THEN #1,500.00 out of pocket for the full cost and paid it monthly. I will never hear the end of that from him! I had written pre-certification from the insurance it would be covered, then they don’t and deny it. I fought the insurance and appealed, they still denied after all the documentation was submitted and I even went through the Board of Indiana Insurance appeals and they sided with the insurance company, of course.

So that added to the stresses mounting up on my marriage. I was unemployed and getting temp disability at that time. My husband puts a lot of importance on money and when he had to fork over that amount it just put a bigger strain. He could not understand for one how bad the migraines were even though he saw me in bed with ice packs and in a pitch black room, and all the doctors I’d been seeing and the new medications to try. Even telling him how much pain I was in with all the other effects of the Migraine, and still he doesn’t get it. Then I’m not working which is a big no-no with him. He kept railing on me to get another job so I can contribute. It was a sin to him that I was not bringing in a regular paycheck. When I applied for SSD he was against it saying I’d never get it and basically implying I’m not that sick. Yes I was denied the 1st time because they do that to discourage people. They don’t want to pay out anything unless they have to. So I was told “I told you so” too many times to remember. I appealed my denial and got an attorney that deals with SSD appeals. He would not take payment unless I won. He worked hard on my case and gathered my long extensive list of medical records from all my doctors over the last several years. He said I had a good case. My spouse was still not supportive and still ragging on me to get a job and give up on the appeals. When I had my appeal hearing my best friend drove me because again I was not safe to drive myself. At the hearing my therapist showed up to testify on my behalf, she felt so strongly for me. I did win my appeal and got my back pay and my monthly benefit. All my hubby said was that I was “lucky”. So that is the support I’m dealing with while I’m going through this ordeal-no support from the spouse I have to get it from other sources.

I was hospitalized in August of 2012 for a week. That was my turning point. With intense therapy I realized I could not let my negative feelings rule my life as they were making me more miserable and contributing to the pain, stress and suffering I was enduring. I realized through counseling that how you perceive things in your mind and how you process them effects the body as well. So if I’m all stressed out and negative it adds additional stress to the body and therefore increases the pain because that is all I’m focusing on. I was so intent on focusing on the pain and how miserable I was that I blocked everything else out. No wonder people would not listen to me anymore. Who wants to listen to someone complain all the time and being negative about this and that! I couldn’t blame them when I stepped back and took a good long look at everything. I realized attitude is part of the problem, but not all of it. I started to journal and then blog and interact more with people online who are going through the same thing. I began to realize if I started being more positive about things in my life and learn to accept the fact there is no cure for Migraine Disease and let go of my anger, hate and resentment over it, and just learn to accept it and that all I can do is find ways of managing it better. If I would meditate more during the painful cycles it would distract my mind from the intense pain and I would not feel it as much as I would if I was tuned into that only and all the negativity surrounding it. Yes, Migraine Disease sucks. It’s horrible. It’s terrible. It’s a curse I would not put on another person. The side effects from the countless medications suck. The cost of the medications suck. Going to the doctor all the times sucks. But you know what, if you just learn to go with the flow and accept it you can go with the flow a little easier and be a better person to be around. So I focus on that-being a better person and going with the flow because I cannot change what I cannot change. If that sentence makes sense to you. Why vent and rant and get all tied up in a knot over something you cannot change or cure? At the end of 2012 I was diagnosed with FM and CFS. I was a little deflated at first and almost got into that mind-set again of “oh great, another curse”. But with the support of a network I set up of people who provide positive influence and positive feedback I got back on track again.

Now I’m in NO WAY preaching to people that you need to be more positive to “cure” Migraines. Heck no!!! I know there is no cure for one thing, and what works for me may not work for everyone else! I know that. I get that. I am only blogging about what works for ME and I am in NO WAY telling everyone out there that suffers with ICI MUST follow my thought process and my routine. NO. You can disagree with how I handle migraines or my thought process to make it through a bad cycle all you want to. It will not change the new way I’ve come to handle them. I found that for ME being positive and focusing on what I can do instead of what I can’t do is a big help. And I did use my positive reinforcements this past weekend when I had a horrible 3-day Migraine attack when I had to use my Imitrex Injections. I tapped into my friend “hotline” I call it for a moral boost and it helped. It didn’t take away my pain, but it helped me to battle through it with no anger, bitterness, resentment, malice or being mean. I stayed positive which is a day to day, hour by hour process. I have to be constantly conscious of it and work on it for it to work for me. And I state “work for me”, not a “work for everyone else”. I do not profess to be a doctor and have the answers for everyone but I can go by my own experience and what works for me. Period.

So if someone writes a post about how they found a way that works for them and that they found happiness in the middle the deep dark abyss, I am happy for them. I will not resort to being angry, bitter, resentful nor criticize them or curse them. If someone finds some kind of relief from this horrible pain I say “all the more power to you” and that will be it. And if I see a post that I don’t agree on I just pass it by and I don’t let it phase me because you know what? It’s not worth the extra energy your putting into bashing that person when you could be putting the energy into yourself. Now if I do come across a site that states “guaranteed cure” I will speak up because I know enough that a statement like that is a bunch of bunk! BS if you prefer. So I’m happy someone could find a way to be happy in spite of suffering from a horrible disease like Migraine. Yes, I know it’s a neurological disorder that has genetic factors to it. I had 2 parents that suffered from it years ago when there were no medications for Migraines. My sister suffers from it and has told of many terrible, horrific ER stories. Which in fact I’d rather roll around in my bathroom floor in extreme pain like this last weekend-a pain level 8-9 and deal with it on my own than go to an ER, thank you very much!

I feel sorry for those who are bitter and angry over someone that has found a way out. Someone who can be happy in spite of it all. I don’t envy the contempt this person is facing and which I might face as well after this post. But life goes on and you get out of it what you put into it. And for me I will put in positive attitude and deal with this my own way. I do not force anyone to read my blogs or agree with what I’m saying. But we can agree to disagree in an agreeable fashion. There is no need to curse or be vile over it. That is an attitude I cannot accept. That is nothing short of Cyber-Bullying. Have we stooped that low?

For that I will sign off wishing you all better health, peace, harmony and good will. Try to have as pain free a day as possible and I wish I could make it all go away for everyone, but that is not in my power. Instead sending you all good wishes to be Happy, Healthy and Be Well.

Julie

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

So

41 thoughts on “People in the ICI Community need to be more supportive and less judgmental of fellow sufferers

  1. Pingback: When Are We Not Responsible? | terry1954

  2. Pingback: People in the ICI Community need to be more supportive and less judgmental of fellow sufferers

  3. Attractive section of content. I just stumbled upon your site and in accession capital to assert that I get in fact enjoyed account your blog posts.
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  4. I have had migraines since 1975 and have had some serious challenges to my ways of dealing with them. I once had a woman who ran headache “clinics’ tell me that “as soon as I was ready to let go of my migraines” to come talk to her. Ready to let go??!! Huh? It was all I could do to not throw her out of my business, a healing center of all places! People are foolish about what others suffer and don’t realize we know best what to do for ourselves. Good for you for standing up to this abuse. And it is abuse and from a source where we should expect kindness and support. I wish you well and thank you for visiting my site. I hope you continue to deal well with your migraines and that someday they get better for you.
    In migraine sufferers solidarity,
    Steve

    • Steve. Thank you so much for visiting my site. I am so very sorry to hear you suffer from Migraines as well. That woman you came upon in that “headache clinic” sounds like she needs “her” head examined. I don’t know really how you kept it together and kept your cool. Migraine Disease is so stigmatized it makes it doubly hard to deal with not just the disease but in trying to justify their illness to others and to verify it is indeed a real disease. I thank you so much for your support and words of encouragement. I will keep you in prayer that your migraines will get better as well. Please stay safe, be well and happy. But most of all wishing you more pain free days. Blessings.

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  6. Your style is really unique compared to other people I
    have read stuff from. Thanks for posting when you’ve got the opportunity, Guess I’ll just book mark this
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    • Thank you for visiting my site and for the encouraging words. You can subscribe by email and when I make my new post you should receive it. Sending you Blessings and prayers for a pain free day.

  7. Hi Julie,
    My dad suffered from Cluster Migraines. The headache would come 1- once as week and 2- the next week, till it was a whole month of headaches. He would have compresses his head, and lay in the dark in the living room with tears streaming down his face. I don’t know how he worked. After his heart by-pass surgery after suffering for 20 years in adulthood with these headaches, they are gone! It’s been 20 years now and I still can’t mention the word ‘migrane’ in front of him, for fear of causing one. I had only 2 migrane’s in my life, and won’t forget them….like how one would remember seeing the Eiffel Tower! I am sorry you are living like this, and remember how sad this was for my dad. I read your blog, and can’t believe, that there isn’t anything that can prevent them…till the day I expire, if I feel the hint of a headache coming on, I know I can’t delay taking an aspirin, cause if you wait to long, nothing helps. Sending you well wishes for better days.
    KS from New Jersey

    • KS. I don’t know which is worse, daily chronic migraines or cluster headaches. I’d have to say cluster headaches are a step above the migraines. How horrible your dad suffered from those. They can last from 24 hrs to a year straight! They are beyond painful. I pray they never come back. I hope and pray you never have another either. Migraine, like cluster> I have always said in the past I would never wish one of those monstrous things on my worse enemy. Although I have on an occasion or 2 wished them on a few people for just ONE day so then they’d realize how horrible they are. Thank you so much for your kind words and for vising my site. Blessings to you and your father. Julie

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    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

  10. I just want to say I’m very new to blogs and actually enjoyed you’re blog site. Probably I’m want to bookmark your blog post . You actually come with really good article content. Many thanks for revealing your website.

    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

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    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

  12. Hrmm that was bizarre, my comment obtained eaten. Anyway I wished to say that it is nice to know that another person additionally talked about this as I had trouble finding the identical data elsewhere. This was the first place that informed me the answer. Thanks.

    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

  13. Thank you so much for your positive feedback, your kind words and for visiting my page. I am still in the process of learning to Blog but I plan to write more as it comes to me. Blessings to you for a pain free day. Julie

  14. This is the right website for anyone who wants to find out about this topic. You realize so much its almost tough to argue with you (not that I really will need to…HaHa). You certainly put a brand new spin on a subject which has been discussed for years. Excellent stuff, just excellent!

    • Thank you very much for your positive feedback and kind words. That means a lot to me. Blessings being sent to you for a pain free day. Julie

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