Deep fear of getting better....or something else?

After leaving yet another doctors office yesterday, armed with blood request slips and diagrams of Krebbs cycles, lists of symptoms, allergy testing and my heart on my sleeve, I break down on my partners shoulder and sob. I want to run as far away from myself as possible and I briefly, but intensely, think of a quote "It is fear of fear itself". I have just been dx with fibromyalgia/CFS, we just need the blood to prove it. I know the blood will come back negative, as it always has in the past, and my legs will react with fire and pain, rendering me immobile for the next couple of days and the brain fog will make me feel like the planet has plastic over it, but the symptoms are enough, this doctor says. He just wants a clearer picture of what is happening inside. I am not surprised. I have done a partial science degree and know the symptoms of this disease.....but my mind still revolts and I react with a feeling closely relating to complete disgust.....and terrible fear. So, why can't the logic marry the reality? Why can't I just accept that this is happening? Surely I have fought such big battles in the past, even if they are of the mental health kind.

Meanwhile, my Aspergers brain works frantically to process the data, while it prepares for an appointment with an AS specialist psychologist next week. I haven't even gotten used to that yet. It has only been 4 months since official dx with my primary T. I still find myself scoffing at the idea of having AS, while my partner kindly points out that my hand flapping, foot shaking, atom loving eccentricities have gone up tenfold with all the stress of feeling so ill. That my repetitive use of my "word of the week" even when the word is not applicable, goes into every sentence and I am caught often, saying the word over and over like tasting a new delicacy. That I am found rocking absently in front of the fridge staring blankly at the fridge door. Gosh, talk about going downhill. So, yeah. Acceptance comes very difficultly to me.

I am also preparing myself for psychometric testing for ADHD(inattentive type). Just what I need at the moment. This hyper brain, no focus, plus the brain fog of CFS/Fibro, and the battle of hyper focus with the AS has got me running around like something out of the primordial ooze, foaming at the mouth and trying to bite the legs off chairs. Everyday I get up and I tell myself "Today will be different. Today you will focus on tasks and you will feel better about the chaos in your environment. C'mon Michah, Think, girl, THINK!!". But it never happens. Good intentions without the operating system to perform the stupid functions and I am left with hours of staring mutely into space, or trying to play solitaire or learn software programming as a hobby, and wondering with despairing breath "Where on earth did I go?". Enter, sobbing uncontrollably, which distresses me as well. I am not a cryer.

Yesterday, I thought to myself "Do you WANT to get better, woman? Do you WANT to stay this way FOREVER? Have you become so cynical that you have no HOPE?". And my answer is no, I want to get better with every fibre of my being. I want to run and climb again. I want to feel vital. I want to embrace my authentic self and live with moments of amazing joy, but I am completely overwhelmed. I have been feeling unwell for so long that I simply cannot perform more than one task at one time. That I have barely processed what was discussed in therapy 2 months ago, to be taking on doctor fatigue and people touching me and sticking more needles in me, more tests to have done after the last 6 years of them. I am so incredibly tired that I don't even really know what I look like anymore.

So as I wrap this little story up, I look inside and see deep fear and objective loathing at this insidious foe, and I seek forgiveness from my brain for just not being able to provide a platform for it to function properly, and forgive my primordial ooze alter ego, for destroying my furniture with its tiny bite marks and raging fury at the treachery of its own body. It is amazing just how powerful our primal selves can be when feeling vulnerable or threatened. At the end of the day, it is not hope or optimism that will pull me through this, it will be my primal self, my will, my "You couldn't beat me in the past and you can't beat me now" mantra of primal existence. Just got to get it directed properly. In the meantime, I will rage around my house, and cry at silly songs and flap my hands as much as I want. I will tell people to stick their plans for me where the sun don't shine, and do what is good for ME. I will follow what is the path of least resistance and love anyway, and doubt myself the whole way. At least I will be true.......to me.

In stillness,

Michah

How heartwrenching, Michah. You are in my prayers.

Michah,

How can you manage with so much, you surely are a saint! I just want you to know that I read this and was truly astounded! Not only at the amount of pain and suffering you have endured but at the beautiful writing. Here is hoping this pain is not the cost. May I suggest you post this in a couple of other Forums as it just completely describes the eduring ability of the human spirit notwithstanding you do not feel this way. I am sure it would be inspirational for others as it is to me. I hope your humble spirit will not miss up this opportunity to share this ability to endure with others, elsewhere on PC and even into the larger community.

Sincerely,
Hunny

((((((Michah))))))

I'm so sorry that you are troubled and not feeling well. I hesitate to suggest this because what one person finds helpful, another person may not enjoy - but---iTunes has free podcasts. I have subscribed to the weekly podcasts by a psychologist named Tara Brach. This week's lecture is called "Beyond Small Self". I think she is very good. It might be something you would enjoy and find helpful. If you would like more information, just let me know. I'm thinking about you and sending you positive thoughts and gentle hugs. Please know we are wishing you well.

slow

You are going through a lot and I think that it is just going to continue to be difficult until little bits and pieces of the unknown begin to chip away as you make new discoveries. One thing I've learned in my own experience is that when something just begins to get sorted out, it feels as if other things begin to get better and fall into place. Before that, the body and mind can feel locked in pain, immobile and hopeless. Keep on keeping on and go to the appointments you need to go to and get the tests. I'm so sorry you are feeling in so much pain. It sounds as if your body and mind are scrunched up against the world at the moment but it hurts so much inside too that you have no rest, no peace. All the more reason to get help with these things.

- Claire

May you have a day of calm and growing optimism that although the challenge is great you are up for it.

((((((( Michah )))))))

Sweet ((((((((((((((((( Michah ))))))))))))))))))))

I so get where you are coming from. I'm sorry that it's all so jumbled and scary and painful both physically and mentally and emotionally. It is hard to get all those things seemingly on one page and in some way working together at the same pace.

I certainly can relate to the Fibro fog and pain. Seems mine has been getting worse lately and I may have to call my doc to either up my meds or change them. No insurance either....great LOL. But yeah, some days I go around saying "Who am I and why am I here???". Please be careful and take care of your dear self with the fibro/cfs. If you don't, it can have a nasty backlash affect that is at times, hard to get through.

Know you are in my thoughts and prayers hon. Keep writing.....you have a wonderful way of expressing yourself and it may just help you to "get it out"!!


sabby

Thanks so much everyone

Your kind, warm words were a good enough excuse to sit in front of my computer and have a good cry. I am quite pleased with myself. I seem to have this crying thing going strong at the moment and this may sound strange, but it is a GOOD thing, so I am going to exploit it while the going is good before it dries up again. My T has been trying to get me to cry for months, in the nicest possible way of course.

Well I trusted my instincts about this new doctor and emailed my primary GP about it last night. I asked my primary GP if he would treat me for it now that we have a dx. Without a new doctor, I already have 5 docs looking after various things. I don't want another one. I told my GP everything that happened, and that I didn't trust this new doc and wanted his advice.

He wrote me back saying that he would treat me, and he was sorry this new doc didn't listen to me and that I felt that I didn't have a voice. He asked me to make an appointment with him when I was ready so we could have a 45 min session and nut out my complete treatment. He also said he would help me through my treatment from beginning to end and beyond, if I wanted him to.

Enter(again), sobbing uncontrollably, but this time with immense relief and gratitude. My sinuses are going to fall out of my head, but at least my furniture is in tact this morning. No bite marks.

So, all your warmth and compassion crossed the Pacific ocean and helped me on my way........you wonderful people. I am always amazed at the collective power of the human spirit......

Much love to all and may your days move with stillness,

Michah

((((((( Michah )))))))

wow
Michah

((((((Michah))))))

I'm so glad you're feeling a little better. I sincerely hope that things continue to improve. You are such a wonderful person, and I wish only good things for you.

Sending positive thoughts and gentle hugs.

slow

Asked the higher power to get on this one.

Honestly, I can understand how you feel. When I was diagnosed with G.A.D. last year I was so afraid. It is very uncommon knowing that I'm 14. I was scared that something else was wrong with me too.. A few months later the news broke about my mother's breast cancer. We were all devistated. I was the only one in the 8th grade with a mother who had cancer. I was so afraid that I was going to get picked on in school because my mother began to loose her hair..My anxiety ate at me. And to make everything worse, she could of died. She currently still has it, but she's going through cemo and radiation. If you ever, need someone to lean on, im always here.

(((((Michah)))))

How are you doing? Has there been any progress with diagnosis or treatment? Did it help you to see your own doctor? How do you feel?

Please know that I'm thinking about you and hope you are well. Sending gentle hugs and positive thoughts for continued healing.

slow

How are you doing, Michah?

Michah,
You have a lot of pressure you're dealing with, some from your conditions, others from the fears you might have going along with this. All I can advise you is to stay strong and that this too will surely pass. I know you will be able to sort through this all and get better, or at least to a place where you can manage everything and lead/live a more normal/happier life. Good luck to you! =)

Hey Michah
I enjoyed reading your post. My heart goes out to you. I know how you feel with the pain and fibro. I did'nt know there was a blood test for it though. Guess you always learn new things Keep your head up hun, I know that's easier said than done. Lord knows I need to take my own advice. Huggs