Distraction Technique - Smile and Pretend You Don't Have a Migraine

It's been 6 months since my diagnoses.

8 months since I've worked at home in solitude.

16 months since daily symptoms began.

It has been the shittiest year ever. The end of my 30s has been epic in such a lonely, sad, deflating, and defeating way.

I don't even feel sorry for myself. I just feel spent and done. Forgotten and left at the side of the road.

That's what happens when you have severe Chronic Vestibular Migraines.

Sure, I can turn on my game face - I've done it all of my life. Look cheery on the outside, and feel utter despair on the inside.

I cry most days.

I lost my Unicorn.

Any jab taken at me verbally, I take to heart and it just eats away at me - even if it's not meant to be harmful.

I'm tired of feeling so utterly alone and sad all the time.

I've asked my general doctor and even Neurologist # 1 (twice!) for anti depressants. I've gotten nowhere. and I just need some help.

Anyone close to me is or has lost patience.

How can I explain how I physically feel to someone when they haven't experienced it? Lived it? Breathed it in every breath?

I barely hear from my friends  - even with a text or a message. One or two people actually seem to give me hope that I'm not alone and forgotten.

I don't really blame people. I'm not really fun for me to hang out with. I don't socialize enough to know what to say, I have so little drive to go anywhere, and I'm just not a happy person anymore.

This disease is winning, and I don't want it to. I just mentally cannot do it alone anymore.

The headaches are SO much better...but the vestibular issues still remain quite intact.

My VEstibular Neurologist suspects the medicine I'm on for the "headache" part is causing the depression (yup - she also denied me antidepressants), and I'm just holding out to see my "Headache" Neurologist this Friday.

I can't leave without a prescription for some sort of "happy," pill so I can get back on track.

Outside of Husband, I don't have a best friend, or a friend I would think would just talk with me, listen...and Husband is at his wits end.

I don't blame him either. I have no interest in anything (I don't know why). He is also depressed and so without me being positive Polly most of the time, it's just draining.

Migraines are just the root of all evil.

I did go into the office the first time this month - for a half day. Two anti-migraine Triptans, half my face being numb, and feeling nauseous half the time, I made it until lunch - my goal.

I received several hugs, chatted with people. Even happy people!  It was nice to see humans.

I also saw a few people actively avoid me - ones I used to chat with regularly and spent enough time with in the past, that it slighted me a bit.

...I've been crying non stop for about an hour now. I just can't stop. I just need to get my thoughts out. I just wish I had a friend who understood what I'm going through - or tried to understand. I am just so tired of feeling like I'm going through this all alone.

Hello Darkness, My Old Friend - Migraine Update

My life has become: 

- Wake up
- Crawl into shower
- Hope the spinning subsides
- Drive Husband to work (who can afford $20 parking a day??)
- Drive home
- Make coffee
- Work in my basement office
- If I'm lucky I get to talk with one or two people throughout the day - like use my voice, not just instant messaging
- Lunch with the dogs
- Work in basement office
- Work out or make dinner and then work out (always modified...but it's something to help me heal)
- Time with Jamie or crafting of some sort of escape activity
- Sleep
- Repeat

Weekends are at our camp. 50/50 chance I even want to go and be social with our neighbours.

I'm just too used to being alone now. 

I think I cry almost every day. 

Every day just runs into the next. 

I feel lost and forgotten. 

I may see non-weekend camp friends once every 2? 3? months. I don't remember the last time I did. Likely I've just scared everyone away...so I don't matter anymore. 

Out of sight out of mind. 

If I'm lucky, I'm an afterthought. 

I don't generally complain to Husband how I am feeling. It's various levels of vertigo, jello legs, brain fog, head clamp headaches, and so on (as per my original migraine post).

I saw my first neurologist again in August, and am due again in a month. He doubled my Beta Blockers dosage. 

I don't know - I think it may have made me sink deeper into my depression. 

Neither him nor Neurologist # 2 (whom I met last week) will prescribe me anti depressants. They say it's side effects of the meds. 

I told them I need something. The loneliness is becoming unbearable and I'm just closing up more and more. 

Not only is the migraine in my head - but I'm also in my head. And not in a good way. 

Neuro #2 is now in charge of my vestibular issues, and sent me to the hospital for more testing to confirm the Vestibular Migraine diagnoses. I find out next week for sure. Vestibular issues are my main downfall currently, and I'd rather have just the headache part of the migraine than my other symptoms. 

Now, not only does my body feel like it's spinning constantly, but I can actually feel my eyes spinning separately. It's actually really happening and confirmed by my newest Doctor on my medical team - an Optometrist specializing in the relationship between the eyes and Brain. 

He said there's a lot going on in my head - and there's definitely a major disconnect between my brain and eyes that we need to resolve. We have a baby step game plan, and meet up again in 6 weeks. 

Both him and Neuro #2 suggested I see a Vestibular Therapist and essentially start physio for my vestibular (inner ear/brain) system. 

But I had to choose which symptoms to relieve first.  Eyes (light sensitivity, dissassociation, double vision, etc.) or vestibular (the vertigo and related issues). Both cost me out of pocket. 

Benefits cover next to nothing - it's barely worth making a claim. 

So I'm "excited" to go more in the hole for more tests, diagnoses, treatments, etc. *sigh* 

I'm going for my vision issues first, and hopefully that's a good starting point. 

That, and as i type, my right eye is totally circling like a clock - I don't feel my left eye is following suit. FML.  It seems to have gotten worse over the last few weeks. 

Nothing the doctors tell me is a surprise. I've researched, know my body, and am logical. 

It's been over a year. 

Countless Doctors visits.

Not enough answers.

Who knew the end of my 30's would be so spectacularly shitty? At this point, I don't even care to do anything for my 40th birthday. I just don't have the smiles or energy to give to anyone who would care to show up anyhow. 

I really need a Unicorn to come out of the shadows right now. I need to believe something good will come from all of this. 

I just want to curl up into a ball and close my eyes until I am better.

 I am just so tired of appearing all right to the outside world. 

And even though I may smile and laugh on the outside, try not to complain to others, and am always busy doing something...it just hides the defeat, frustration, loneliness, and sadness that is constantly with me now. 

I wish I could be all roses and sparkles again. 

I just need life to give me a break so I can find myself again. 

I feel so forgotten and lost. Out of sight out of mind. 

In the words of Amy Lee:

You won't cry for my absence, I know
You forgot me long ago
Am I that unimportant?
Am I so insignificant?
Isn't something missing?
Isn't someone missing me?