#HAWMC Day 28 – 5 Challenges & 5 Victories

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

5 Challenges & 5 Small Victories.
Make a list of the 5 most difficult parts of your health focus.
Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges5 most difficult parts of my health focus:

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  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

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  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC Day 9 – Ideal Place

Today is Day 9 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Happy Hump Day! No denying life can get hectic, but let’s take a mid-week break to fantasize our ideal day! Would you go somewhere? Who would you spend it with? Have you had this day? If not – how could you make it happen?

 

There would be a lot of steps to creating my 100% ideal day.  Any one part alone would be a pretty darn good day, but put them all together and I’d have the day to end all days.

Wait!  There are 2 different kind of days that I dream about. Both require the same beginning requirements:

First I’d wake up with no pain, then I’d notice that my head did not feel the slightest bit off balance.  After I got over the initial shock of this, I’d dance around the room a bit, doing a pirouette for the first time in years.   Suddenly I could hear better with my cochlear implants.  I could understand a group of people if I wanted.  I could talk on the phone.  Speaking of which, on my ideal day, I’d call my best friend and talk for an hour or so.  (I’d sneak in a visit, but I only have one day, sorry love.)

Okay right now I’m just marveling at the fact that my head doesn’t hurt.  My head has hurt every day since I was 11 years old.  My neck doesn’t hurt, the degenerative discs have made just holding my head up a challenge some days.  All my aches and pains, gone!  What a day!

Turning my head I don’t have to brace myself because I don’t feel dizzy.  I don’t remember not feeling dizzy.  Suddenly I’m not afraid.  I know I have this day.

This is where my 2 days diverge.

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photo by jenn dorff

One day is spent on a beach with my husband, just relaxing, building sand castles, riding bikes, walking, swimming, riding the waves, and drinking tropical drinks.  Heck, just lying there drinking tropical drinks would be a dream.  I’d love to end that day in my husband’s arms making love, without pain.  That would be my ideal day.

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click here for source

My other ideal day would be spent cleaning my house and cooking.  On my ideal day I would not get tired I’d be able to really clean my house and cook a fantastic meal.  I really miss being able to do these things.  I know it sounds silly.  Why would I want to spend my ideal day scrubbing my house?   It’s something I can’t do now that I really want to do, that’s why.  But I’d end the day the same way I ended the first day.  Making love with my husband, without pain.  Something I haven’t ever done.

Either of those would be ideal days for me.

What would be your ideal day?  Would it be anything like mine?

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC- Day 1 What Drives You?

hawmc_background_coverToday marks the beginning of WEGO’s Health Activist Writers Month Challenge.  I will attempt to follow each prompt every day to bring awareness to chronic illnesses.  Be sure to check out WEGO’s Facebook Page for more blog posts during this month.  Don’t forget you can always follow my posts on my Facebook Page too!

Today’s #HAWMC prompt is:  First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!

What drives me to write about my health?  Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.

I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with.  I’ve found support through my blog and I hope I give the same.

I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.

I also have other illnesses that I mention along the way.  Like Degenerative Disc, Hypothyroidism and others.  I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.

What drives me is my illnesses and my love for others.  My compassion for others and myself.  I write because it helps me and in turn I hope it helps others.

What do I want others to know about my conditions and activism?

Well there’s an awful lot to know about my conditions, as there is more than one condition to cover.  I’ll pick just talk and see what comes out.

Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it.  The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus.  If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease.  The progression of the disease can be different for different people.  It is normally only in one ear, it can attack both ears. I have it in both ears.   It used to be thought that the disease would “burn” itself out.  As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo.  As can be seen with me that is not necessarily the case.  I am deaf now and still have vertigo often.  There is not sign of a “burn out” for me.   I do want everyone to know that this disease does not progress the same for everyone.  just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will.  I’m in a very small minority.

Bipolar Disorder – I want people to know that people aren’t crazy when they have this.  Being Bipolar doesn’t stop me from living a normal life.  I want people to know that not everyone is the same with this too.  I am lucky.  With medication and therapy I am doing very well, and have been for years.   Others are not so lucky.  Medication does not work for everyone. Everyone with this disorder has to work hard.

Chronic Migraines – I want people to know that migraines are not just a headache.  They are so much more than that.  They make you sick all over.  Having a migraine for more days during the month than not can put a huge damper on life.

It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.

This is some of what I want you to know about me and my illnesses and why I write.  I hope you will join me on this month long journey.  Wish me luck that I can accomplish this goal of posting every day this month!

Thoughts on Migraine Hypersensitivity

Thoughts on migraine hypersensitivity

I found a post on Hearing Health and Technology Matters that I felt would be of interest to many of you.

Thoughts on Migraine Hypersensitivity By On July 18, 2016

“As the director of a balance and vestibular clinic, I see many patients with complaints of dizziness, disorientation, and motion sensitivity related to migraine. We work closely with our neurology colleagues in managing these patients. The International Headache Society has an official classification of “vestibular migraine.”

to continue reading this article please follow this link: http://hearinghealthmatters.org/dizzinessdepot/2016/thoughts-migraine-hypersensitivity/

Update 5.10.2016

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It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

Migraine Madness

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My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.

Winners of The Fay Farm Warming CBD Rub and Discount Code

(remember – This is a sponsored post for The Fay Farm Warming CBD Rub. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.”)

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I’m happy to announce the winners of the Giveaway for The Fay Farm Warming CBD Rub.

To pick the winners I assigned everyone a number in the order you entered and entered the number in the Random Generator on Random.org.  The winning numbers are 1 and 10!

Ann Cluck and Elizabeth Neal you are the winners of .5 oz Warming CBD Muscle Rub, valued at $15 each.

I will contact the winners by email.  If for some reason either cannon claim their prize I will pick another name.

***The Fay Farm are now providing their CBD products through a third party, the products are available on https://www.cannatreehouse.com/  Therefore the coupon offered is no longer available.

Don’t forget since you are one of my readers you can receive 10% off your entire order and free shipping (in the U.S. only) by mentioning “Picnic” or “Ants” in the comments when you order you products!  (When you add everything you want in your basket, just add ‘picnic’ or ‘ants’ in the comment section of the order form and you will get 10% off.)  Yes, you get to take 10% off your whole order, not just CBD products, and the offer doesn’t expire.

Thank you to all who entered and the interest in this product.  I’m still using it and happy with it.  I hope everyone likes it as much, or more, than I do.

The Fay Farm CBD Muscle Rub – Review and Give Away!

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“This is a sponsored post for The Fay Farm CBD Warming Muscle Rub. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company.”

I’ve never had a review or give away on my blog before, but when The Fay Farm asked me to try their Warming CBD Muscle Rub I thought, “Hey, that sounds really interesting!  I bet my readers would love it.”

The rub was created by the co-owner for his mother who has Rheumatoid Arthritis, he told me that has allowed her to sleep through the night.  I thought that was pretty cool, and so very nice.

I received my package a little over a month ago and I’ve been giving the Warming CBD Muscle Rub a try.  I had been out for a bit the day I got the package and my neck was causing me a lot of pain, so I decided to try it out right away.  I was very shocked when I put it on and the pain got better.  Did it go away?  No.  But it got better!  That’s a big thing for me.

I have degenerative discs in my neck, it has really been acting up lately and the pain from it has been more intense than normal.  The pain is sharp, burning, stinging; all kinds of fun.  It also causes the muscles surrounding that area to become very tense, of course intensifying the pain.  The rub worked very well on the muscle pain, the pain right at the discs bit.

CBD oil is a key ingredient in cannabis (marijuana). Unlike THC (the ingredient in cannabis that gets you “high”), CBD does not cause a ‘high’. While this makes CBD a poor choice for recreational users, it gives the chemical a significant advantage as a medicine.  CBD can come from regular cannabis plants or plants harvested for hemp.  The CBD oil that comes from hemp is legal. The CBD oil that comes from regular cannabis plants is not legal in most states.  The CBD oil found in The Fay Farm Warming Muscle Rub is hemp oil.  Read more about Hemp Oil, here.

The organic ingredients are Sunflower, castor, herb- infused olive oil, beeswax, shea butter, menthol, camphor, 50mg CBD oil, cayenne pepper, arnica, essntial oils of rosemary, eucalyptus, peppermint, ginger, cassia, and clove.

From the ingredients I saw that most have some properties that can help relieve pain, like arnica and the cayenne pepper, ect.  I’ve tried Arnica and things like Icy Hot, Capsacium cream or Tiger Balm… and thought they didn’t help as much as this CBD Muscle Rub..  During the past month I’ve tried Arnica and Tiger Balm again just to make sure, and yes The Fay Farm’s Warming CBD Muscle Rub does help me more than either of those.  I even tried my prescription Voltaren Gel and felt the warming CBD rub helped more. I can really smell the cloves and other essential oils.  Some might find the smell a bit strong, but I found it much more pleasant than things like Icy Hot.  (I have to note here, I’m very sensitive to smells, this is a bit strong to me, but it isn’t artificial or really stinky, I haven’t had a problem with it.  Hubby says it’s a light sent, he also agrees it’s not offensive.  We both kinda like the smell.)

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The rub is softer in viscosity than I thought it would be just looking at it. I thought it would have the consistency of petroleum jelly, but it is softer, smoother.  When I first got it I put my fingers in to get some and I got a lot more than I intended.    Now that I know the consistency it is very easy for me to use.  I’m glad it doesn’t come in a tube because I never feel like I get all of the ingredients out of a tube, and if I happen to get too much on my finger I just scrape my finger over the side and put it back in the tin.  You can’t do that with a tube.

Will it work for you, well only you can decide that, and since you are one of my readers you can receive 10% off your entire order and free shipping (in the U.S. only) by mentioning “Picnic” or “Ants” in the comments when you order you products!  (When you add everything you want in your basket, just add ‘picnic’ or ‘ants’ in the comment section of the order form and you will get 10% off.)  Yes, you get to take 10% off your whole order, not just CBD products, and the offer doesn’t expire.  How cool is that??

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They sent me a normal size and 2 sample sizes so I thought I’d share with 2 of you.  I’m giving away two (2) .5 oz sample containers of The Fay Farm’s Warming CBD Muscle Rub.  If you’d like to receive one of them, just leave me a comment and I’ll randomly pick the 2 names. (if you’d like to leave a comment but don’t want to enter, please let me know) That’s all there is to it.  You have until April 29th to enter and I’ll announce the winner on May 1st.  (sorry but this give away is only available to those in the continental US.)

I’ll also send the winners an email.  Do not leave your email in your comment, I will get it from the information you supplied the first time you made a comment.  If you don’t get an email, you can always check back here.

If I do not hear from the winners by May  6th, alternate winners will be picked.

I hope you enjoy the rub as much as I have, or more!

 

I didn’t expect…

Sometimes you wake up and think it’s going to be a great day, and it isn’t.  Sunday was that kind of day for me.

First thing I cuddled with hubby when I woke and had a silly dog jumping on us all excited and playing, so waking up was loving and fun.  Soon that changed.

I’m not sure what the first thing was but the day became full of petty little arguments and bad feelings.  We would disagree, apologize then something else would happen and we’d disagree again, or we were just very short with each other.  I know I spent most of the day in a huff, or tears.

I tried to talk about what was discussed in my last therapy session….loss….and I got very emotional (read sobbing like a baby).  He did not react like I wanted.  Notice what I said, I felt he was in the wrong because he didn’t behave like I wanted, like I expected him to.  So who’s at fault there?  I think that would be me.  We aren’t hurt by people, we are hurt by our expectations of people.  And I think that is how the rest of day kind of played out.  We didn’t act the way the other person wanted, or expected and that caused bad feelings.

equanimity 6

This can happen with anyone.  If I admit it, that is what happened when I felt abandoned by my friends when I got sick.  I was so hurt, so angry, they didn’t react the way I expected.  This caused all my unhappiness.  That is why I was so hurt.  My friends did not react the way I expected.  What did I expect?  Visits, talks, help, I expected this and more.  People aren’t always going to do what we expect.  It doesn’t make them bad people.  We don’t know the reasons.  Perhaps my illness brought back bad memories, or fear over their own health,   Some people simply don’t know how to be a friend during these times or they don’t really want to be.  We have to accept this.  More than anything we need to understand that the hurt comes from our expectations, not from the people.  Does that make it hurt less?  Sometimes.  When a person I’ve loved for years and years disappeared after I got sick, it hurt.  It hurts more when I know I was there for the person when they needed me.  However, their need ended, there is no end in sight for my needs.  I will always be different than I used to be.  That’s a hard thing for any relationship to endure.  We loose relationships for a number of reasons, we fight, we move, we change jobs….  Not all relationships stay in our lives.  Things change.  We can look at friends we’ve lost since our illness took hold and think, “they showed their true colors”, “they weren’t real friends”… The truth is, they aren’t what we expected them to be and it is that expectation that causes us pain.

I can hear some of you saying, “They abandoned me, shouldn’t I be hurt?”  I’m not saying it won’t hurt, what I’m saying is, we often bring more hurt upon ourselves than is needed.  We have to let it go.  Did the fact that they are no longer in our lives negate all the good times we had?  I hope not.  It changes how we will interact with them in the future.  We’ve changed, they have changed, the relationship changed.  That change may be that it is over.  It may be that the relationship becomes something different from what it was before, we have to decide if it is worth it.  We can have bad feelings about this, but it is our decision whether to hold on to these feelings or let them go.  I try hard to let them go, to find equanimity.  Do I always succeed?  NO.  Sometimes the hurt comes back to the surface, I think that’s a part of grief.  But now I can sit back and think, why is this bothering me so much?  I always come back to the same thing, I want it to be different than it is.  My wants are causing me harm.

Not everyone has to understand what I’m going through, and not everyone has to be there for me.  It is a great feat to be able to accept a person for how they are, even when they let you down.  I’ve decided to let go of the past relationships that didn’t work.  I work on relationships with people who understand my limitations and are willing to work on our relationship the way it is now.  I don’t have many friends from before.  I have made a number of friends on-line since I’ve gotten sick, and lost my hearing.  Due to my limitations, I haven’t been able to make friends outside of the house, maybe that will happen in the future, but I’m okay with that.  I will continue to nurture the relationships I have and focus on these things.

When I got sick most of my friends were starting a family.  I had many friends who were pregnant at the same time the year before I got really sick.  Keeping up with me kind of went by the wayside.  They had a new life, one that would have been new if I were sick or not.  Our friendships would have changed.  Would they have survived if I hadn’t gotten sick?  Probably, at least for longer than they did.  Things changed.  I could no longer nurture the relationships the way I had before, my friends couldn’t find a way to bend to my new limitations.  Is there hard feelings?  I’d lie if I said they aren’t ever there, but for the most part, I’ve found peace with this.  Realizing that my pain comes from me, makes it easier to have equanimity in this situation.

Something else I noticed, when I tried to attend a few gatherings with my friends after I’d been sick for a while, I realized, I had nothing to say.  I used to be a social butterfly, always being able to have conversations with anyone.  After getting sick my world shrank, I rarely go out other than go to the doctors.  My friends still worked, ran around with their kids, and had rich social lives; my life revolves around my health.  That doesn’t give us much to talk about.  I wanted to hear all about their lives, but I had nothing to contribute to the conversations.  I was uncomfortable, and I made others uncomfortable.  Conversations were forced.  We had changed.  The fact that our friendships didn’t survive doesn’t mean either of us are bad people, we grew apart, as many people do.  When you become chronically ill to the point that your life changes so dramatically, it forces all of your relationships to change in a very short period of time.  Suddenly I didn’t have hardly anything in common with my core group of friends.  Normally if relationships change it takes time,  If you lose a relationship it doesn’t normally come in a mass exodus.  That is exactly what happens to many who are chronically ill.  We don’t see this as a natural progression in a relationship, we see this as abandonment.  It hurts much more than when you lose one friend because of something, you are suddenly losing many friends.  When I realized things change no matter what, and I will never know just how they would have changed without me getting sick, it helps me accept these things.

I realize now how much relationships change no matter what, and how much we need to nurture a relationship to keep it alive.  I hope this helps me to be a better friend and find compassion for others and myself when dealing with changing relationships.

 

Can Cannabidol help the NFL?

I haven’t mentioned medical marijuana on my blog, mainly because it isn’t legal in my state.  However, cannabidiol (known as CBD) is legal in the US. (at least everywhere I know of)

The following quotes are from Win The Bright Lights Fade web page on Realm of Caring’s web site.

“CW Botanicals, a pioneer in hemp oil therapy, originally developed Charlotte’s Web (a hemp-based oil rich in cannabidiol, a non-euphoric cannabinoid) as a natural progenitor for overall brain health. Containing no more THC (the chemical that causes the psychotropic “high”) than the average hemp granola bar, their hemp oil delivers precise levels of cannabinoids, naturally occurring compounds that interact with neuroreceptors in the brain and the endocannabinoid system to regulate processes such as appetite, pain sensation, mood, and memory.”

“A recent study conducted by the Department of Veterans Affairs and Boston University shows 96% of former NFL players suffer from the neurodegenerative disease known as chronic traumatic encephalopathy (CTE). CTE is widely believed to stem from repetitive trauma to the head and can lead to conditions such as memory loss, depression and dementia.”  (this was brought to the public’s attention with the movie Concussion.)

“The Realm of Caring Foundation (RoC) is launching When the Bright Lights Fade, a campaign to raise funds for a series of studies exploring how the use of cannabinoids, specifically cannabidiol (known as CBD), can help treat and prevent the onset of symptoms associated with CTE and traumatic brain injury.”

About me and cannibus….I just ordered High CBD oil to use for pain control.  It takes a little while to get the full effect as soon as I know if it is going to work, I’ll post an update.  I have degenerative arthritis in my neck.  I can’t take traditional pain medications and most have undesirable side effects for almost everyone I know.  I am hoping this alternative will help with the pain and not cause me any ill effects.

Today I received a sample of The Fay Farm’s CBD Warming Muscle Rub.  I will write a review of this soon.  I’ve used it once and was surprised at how much it helped with my pain.  I want to give it more time before posting my review.

For the past year I’ve been using cannibus to control the nausea and vomiting during a vertigo attack.  I use it when I first feel the vertigo start and it has helped greatly.  Before using this I was taken to the ER a number of times because the vomiting was so severe I would become dehydrated and traditional antiemitics do not work for me during this time.  I feel this also helps to slow or stop a vertigo attack before it gets bad.  (yes, my doctors know I use this, I’ve had 2 say if it was legal in this state they would prescribe it, that’s why I started using it.)  I have do not use enough to get “high”, if I did I’m afraid I would have a vertigo attack because of it, therefore it does not help me with pain.  I am hoping as I start taking the cannabidiol it will help with the nausea and reducing my vertigo atacks all the time so I don’t have to use cannibus at all.  Again, something I will update on in the future.