There were two days last week that came and went without my headache showing up, and I’m scared. It doesn’t make any sense to be scared, I should be happy that I might be getting better. Actually, I should be way more than happy, I should be ecstatic! But I’m not. And I’m trying to figure out why.
I’ve waited for this day for so long, for a day that’s headache-free. It’s been over two years since I’ve had one. Every single freakin’ day I have pain. There’s really no exception. But I’ve been on a new treatment plan, made up of three components: a concoction of herb extracts (nicknamed “potion”) taken twice a day, acupuncture, and a gluten-free, dairy-free, processed-free diet. I was told that if I follow the plan, I should be feeling much better after three months. To say I had full faith in it would be a gross exaggeration. I’ve been told that many times before. In fact, two and a half years ago I was told my recovery time frame will be two-three months.
But because I had two days without a headache, everyone around me asked me if I’m feeling better. Actually, I was told by other people that I’m feeling better, based on my behavior, apparently. So I started to really believe it. Excited, I happily shared the news with just about everyone that I might be getting better.
But now I know what I’m scared of. What if this is a fluke? What if this week is just a hiccup, and I go back to my sorry state and stay sick for many more years to come? And now everyone thinks I’m getting better, everyone is going to expect me to act healthy and be happy and yadda yadda yadda. I’m going to have to play the thankful survivor who made it out of the darkest time in her life. But I don’t want to! First of all I don’t want to do that even if I do keep getting better, and I especially don’t want to if I don’t keep getting better.
It’s like suddenly there’s all this pressure.
What if I don’t know how to be healthy? Oh great, I’m crying again. I hate when this happens. But seriously, what if I don’t? It’s been so long. Being healthy is something I dream about, not something realistic. I’m so used to being sick by now. It’s just my life, and it has been for a while. All this time I’ve viewed fibro as something that’s holding me back. But how much of it is ingrained in me already? How much of the sick person will disappear once I’m no longer sick? This isn’t just a blip in my medical history, it’s become (unfortunately) a part of who I am. So that’s it? If it even goes away, everyone will just expect it to disappear from me. They’ll think, why is that girl so ungrateful? It’s gone, why is she so caught up in the past?
But… But… I don’t know what to do with myself. I’m still working my hardest to get better, following the plan, exercising, not over-doing myself. And I’m training myself to see the positive in getting better (which is ridiculous, because it’s literally been my dream and goal for years and I’ve just been yearning for it, but now it feels like some impending doom, which probably means there’s something wrong with me and I’m ruined for life), but it’s scary.
It’s scary because I also don’t want to let myself believe it’s happening. What if it doesn’t? Then it’s just this tempting tasting of what I need and it’ll be taken away from me once I stop being scared of it.
Do I even make any sense? My tears are blocking the screen, I can barely follow what I’m writing.
Yours truly,
Ella
Song Quote:
Seems to me like I’m just scared of never feeling it again. –High Hopes, Kodaline
P.s. Cameron Von St. James sent me an email the other day, letting me know about a beautiful tradition his family has started since his wife got sick with cancer and needed to have a lung removed. They created a beautiful website (you only get the full experience if you view it on a desktop), and I’d like to share it with all of you:
http://www.mesothelioma.com/heather/lungleavinday/#.UuTHdf3g7u0
Sick and Sick of It 
I have had all of these thoughts many times. A good day, a good hour, a good moment. And then the fear. This must be a common thought process for people dealing with chronic illness. Take care.
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You’re using herb extracts, acupuncture, and a gluten-free, dairy-free, processed-free diet? That’s 100% snake oil! What about ibuprofen, a powerful and TRUE miracle drug? What about even MORE powerful and effective opiates?
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I’m way too sensitive! I experience all of the side effects.
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The key is to use the lowest effective dose. That may work. Sometimes when I have a tooth ache a single pill of ibuprofen makes it tingle and weaken, but two pills makes the pain go away completely. I’ve heard oxycodone, heroin, etc. work the same.
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I used to tell people that my normal was 25 seizures a day. On the rare (we’re talking once every 9 months) occasion I didn’t have a seizure till after noon, I’d freK out just because I didn’t understand that a seizure-free day was a good thing.
Then, after my 3 surgeries and another pacemaker implant, the seizures became less and less and life took on a new normal. Was I as scared as hell that they’d come back just as they had dry time before? You better believe it. But then the “actual normal” days started being less terrifying and more freeing.
Give yourself time- it does get easy, but it’s totally ok to be scared.
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Babysteps, babysteps… That is what I try to remind me of on days like yours…
The best support you can get is from people who know by experience what you are going through. Sending you warm thoughts of support!
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I am so sorry to read about your headaches. I will be checking back to see how you are doing and what treatments are working for you. I have a young daughter who constantly suffers from headaches, we have done all the major testing, MRI and such, all of that is good. Yet constantly, daily headaches. Thinking about trying a non dairy diet first, move to gluten free after that. Hope you stay headache free!
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I have a colleague who’s going into hospital tomorrow for a 12 hour procedure to remove brain tumours. I have no doubt he’ll be fine, just no idea what to say when I know he worries… How do you go about supporting someone without sounding like you’re churning out cliches?
I like HopeSpirit’s approach of just looking to today – baby steps, most definitely!
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You don’t need to talk to support someone. You just need to be there. Ask them questions, listen to the answers. Your presence shows that person you care.
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I know. I just sometimes feel like I should know exactly what to say, which I don’t. I guess it’s hard when the majority of the interaction is at work, so everything’s rushed because of the “needs of the business”. He knows I’m only a phone call or text away though. Thanks!
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I totally understand what you are going through. I too have had problems with autoimmune illnesses for the last 20 years on and off and it truly defines who you are on so many levels. Last few years have been pretty tough but I’ve started a new treatment and changed my diet totally (very similar to you) and have been seeing very positive results. But I’m always scared. Scared it’s going to come back and when it does it will come back with a vengeance. Lately I’ve been trying to push those thoughts away and just tell myself whatever happens, happens. Life keeps on going and if I’m cured (or in remission, or whatever they call it) then fabulous!!!! I have to keep telling myself to enjoy this moment like there’s no tomorrow : )
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You are on the right track with your diet. You may be interested in the techniques I use that work because they address you at the cellular level. I have had headaches which have been eliminated due to these techniques. You can find more info at pepperboywr.wordpress.com. There is hope and resources that result in real improvements. If you have any questions please feel free to ask. I am sorry that you suffer so much. I know how hard it is.
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Ella, many of us deal with what you are going through. We have good days and bad. And on the good, Just enjoy it and like Tamara above, said, Take one day at a time. I only know what’s going on in my life one day at a time, because I don’t know what tomorrow will bring. What pain level, where it’s going to be… So on the good days, I take comfort in that fact that I am having a good DAY. Just one. If another follows, it’s another good day. Don’t take inventory of how many days are good; just live in that one day.
I hope your continue on without your headache. I take an anti-migraine medication and sometimes it works and sometimes I just have a regular headache. Enjoy the clarity that it brings and do something fun while it lasts!
No one who does not suffer from this knows exactly what it’s like and their understanding of it as a lifelong issue is, at best, tolerated. They believe that at some point, we’ll “get better” or be healed of our problems. Do your best to educate them. And if their comments upset you, just say,” Yeah, sure, ok. Whatever you say, but I doubt it.” And when it rears it’s ugly head again, you can say, “I told you so.”
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Wow, I can so relate.
I think the hardest thing for me is the expectations of others. Sometimes I don’t want to even say I am having a “good” day because they seemed so relieved and then translate that into “oh, she’s finally getting better!” (ie: for good). But,alas, our disease don’t work that way. So what I now try to do, is constantly bring myself back to the present day, the present moment. “Phew. Today I actually feel headache free and that is a relief. I am going to embrace this day and not worry about tomorrow.” There are two simple (and sometimes trite sounding) old sayings that really work for me: “One day at a time” and “This too shall pass.” The pass one goes for both bad days and good days. And when family members start to talk about this being a turn of events in my illness, I remind them that I am practicing focusing on Just Today. And for today I feel well.
Hope that makes some sense and even helps.
I also agree that as much as we crave to get rid of our pain, it is the known. Our constant companion, and we are not sure who we are without it. But you don’t have to worry about that. If you just focus on one day/one step at a time, your feet, body and mind will take you where you are supposed to go.
Side note: I know it’s a big pain when people make unwarranted treatment suggestions. But I’m going to take a risk and make one: I’ve had horrific migraines since the start of my disease, but last year developed a “hemi=cranial continuum/ cluster headache” (ie: continuous, and cluster headaches are referred to as “suicide headaches”, they are that painful). Nothing was treating them (I did/do all of the above, too) until they started me on Botox injections. It has changed my life. I still get migraines, but not every day and they usually respond to meds. Phew! So just a thought?
But most of all, I am going to pause and send you healing white light & love, because you deserve a few moments of peace and serenity. And to know that your are NOT alone.
Sorry this is so lengthy!!!
Blessings, tamara
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I’m not surprised. Your pain is a constant companion, and while you welcome a reprieve, you also fear its return, and the possibility that the new regime you’re on will fail. I try very hard to live in the moment so I can appreciate, feel, be present to what’s around me. When we live in the past or the future we’re forgetting what’s right in front of us — this moment in time, never to be repeated. Take advantage of the times you feel better, and try to not project what will happen tomorrow. It’s hard to change reactions and way of thinking, but I hope you can find some peace, today.
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I just want o hug you and tell you that everything you shared makes perfect sense. All the fears, all the questions, all the what if’s are not only “normal”, (whatever that means), but to be expected. What is unique is your amazing ability to have that introspective and innate knowledge of these fears, and more so the skill and creativity to articulate and express it. As always, awe inspired, Ivy
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Thank you Ivy! As always, your comment made me think, and feel better about myself.
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Hi Ella, I found a post from last year that may help you feel less alone: http://moxyjen.wordpress.com/2013/01/17/a-rough-adjustment/
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Ella, this post gave me the chills. I makes me realize how connected I am to so many other people due to the experiences I’ve had.
You’re not crazy. It’s scary as hell! I also want to tell you, that even if it appears to be a “fluke” and you get sick again, it’s a great sign. Your body had a chance to remember what it’s like to be well. Best of luck,
MoxyJen
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