Migraines Suck

Warning: this post may contain whining, feeling sorry for myself, and just plain complaining, but most of it is simply the way things are right now….it sucks, I accept that, but no I don’t like it and I wish it were different.

The last two weeks I have experienced some of the worst symptoms I can recall in many years. I woke up one day a couple of weeks ago now, feeling pain creeping up the left side of my head, it felt like my brain was hurting, inside my skull, my brain was being squeezed. It started on the left side and crept up over my head until it covered my whole brain, I could not help but cry out. I woke Stuart and he could only hold me. The intense feeling of motion, the pressure in my skull, the extreme nausea…it was horrible. Finally it eased to the point that I was able to simply pass out. Then it came back! This happened three more times. I decided sleep was not going to help, so I got up. It continued to happen throughout the day, no matter how much medication I took. Nothing worked. That was the beginning of my walk deeper into hell.

I’ve barely been out of the dark, the light sensitivity has been more intense than I’ve ever experienced it. Often I have not been able to get out of the dark at all. For days on end I couldn’t look at my phone or computer. I’ve been having the feeling of intense movement all day, with visual vertigo on and off. My vision will tilt, double, and is constantly blurry. For 2 solid days I could not focus enough to see much of anything, I just sat in my chair curled up in a ball, with sun glasses on, a towel on my head to further help block out light, an ice pack on top of that, staring at the TV watching shows that I’d seen over and over, just so I knew what was going on, since I couldn’t really focus enough to read the captions and often couldn’t even see what was going on at all. It’s bad enough to be in severe pain and dizzy, but to be forced to have nothing to distract you from that is torture. I tried to meditate, I tried to make up stories in my head, I tried to think of nice places, nothing worked. I was trapped sitting in a chair with my pain, confusion, and vertigo with nothing to help relieve it. I knew at that moment, if I had to live like this forever, I wanted to die.

I continue to fight this. My baseline headache never gets below a 5 now (I have daily headache all the time that normally hovers around a 3 or a 4). Every day the pain gets to at least an 8 for a few hours, and will spike to a 10 on and off. I continue to have all the other symptoms, sometimes they are worse than others, but they are always there. The nasal spray (Zomig) she gave me to try did not work. It’s kind of obvious that triptans have stopped working for some reason. I believe my head has gone crazy because it has gotten no relief. Normally I do get some relief from triptans, so the nerves have some time to reset, a little at least. (my 10 precious days a month when I can take meds gave me a few hours) Now there has been no relief so the nerves are constantly firing and just going crazy. My neurological and vestibular system are on over drive, what is triggering me this much, I have no idea, all I know is that my head is a mess, and I’m miserable.

Now my doctor is out of the country until June 12th, and she has jury duty the first week of July, so she had to reschedule my appointment to July 26th. I admit when I heard this I had a complete break down. I sobbed and sobbed, which of course caused more pain…ugh. But them I thought, I’ve lived with this for so long, a couple more months will not kill me, and I can go to the ER if I absolutely have to. I must admit though, I’m afraid to go to the ER, they treat migraine patients like drug seekers or fakers, the bright lights and noise there is torture, the stress of waiting hours….it makes me worse before they make it better. It’s so scary.

The good news is, her office did get the sphenopaltine ganglion block approved, so I will be getting that when I see her. It’s very interesting, she will actually be teaching me how to do it so I can do it at home. They are also working to get the Migranal approved, it is the Dihydroergotamine (DHE) in nasal spray. I have DHE injectables at home. I haven’t used it because you can’t use it in the same day that you use a triptan, and I had gone over the amount of days I can take meds for the month. When I’ve had intractable migraines in the past, not with the extreme symptoms I’ve been having lately, my previous doctor prescribed a DHE protocol of having 3 shots a day for 3 days to try to knock it out. We are going to start that today. Hopefully I’ll get some relief.

This has taken me two days to write and I’m sure it doesn’t read quite right because my brain is mush, and I know there are things I’ve left out, but I really tried. I even put in a couple of links. Woot!



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Quick update…much more to come

I’m tired.

I sat down to write this and all I can think is, “I’m tired”.  Hell, I’d say I’m pretty exhausted, and I still have so much to do.  Just praying I can accomplish much more before I completely collapse.

On the 23rd the movers came and packed up our house to move us from North Carolina to Arizona.  We started our trek across the country the next day.  We had planned to take it slow, drive about 4-5 hours a day, as long as we got there sometime this week we thought that would be fine.  After the second day we got word that our stuff would be arriving in Tucson on Tuesday (the 29th), if we drove 8 hours a day for the next couple of days we would be there in time.  It wasn’t a huge deal if we weren’t there when everything arrived, we had people who could take care of it for us, but I could tell that the thought of us not being there when they unloaded was stressing Stuart a little, so we decided to make it happen.  We arrived the afternoon of the 28th, and our stuff arrived at 8:30am the next day.

The trip here was pretty uneventful, just a few little things bare mentioning.  For most of the trip I had a stomach ache.  Gastritis was hitting me hard.  I could only handle bland food.  That’s a little challenging when you are driving across the country with a little dog and have an allergy to wheat.  I ate a lot of oatmeal and baked potatoes.  One night I did venture out and had steamed chicken and broccoli with rice…no sauce, and I did okay with it.  I’m happy to say that my stomach calmed down now after we got here, I even had a piece of pizza.  The pain in my stomach was so bad the first day that I seriously considered going to the ER, but I just had an endoscopy done and it only showed gastritis, so I was pretty sure it was just flaring.  (Gastritis is a general term for a group of conditions with one thing in common: inflammation of the lining of the stomach.)  I have been wondering why my stomach hurt so much on this trip and the only thing that I can think of that was different was that I stopped taking turmeric last week.  (I know you are all thinking, stress, but I have been under a lot of stress the past month and I haven’t had a stomach ache)  I’d been taking tumeric for months (maybe a year) for inflammation, but I wasn’t sure it was doing much.  Now I’m beginning to think it was reducing the inflammation in my stomach.  I started taking it again last weekend, and I haven’t had issues since.

I must admit the pain caused me to be one irritable cranky bi…umm…witch.  Things that normally wouldn’t phase me in the slightest were suddenly getting on my nerves something awful.  Yes, the stress of moving did not help.  I was feeling a bit emotional about leaving the Southeast.  It just seems a bit final.  I simply don’t know if I’ll see some of those people ever again, I’m not dwelling on it, but it makes me sad.  And not knowing what to expect with Stuart’s stepmom was also probably contributing to the stress.  I really hate that word.  I hate that just normal day things that we have to deal with can cause so many physical symptoms. Stress is not always a bad thing, but it can do havoc on your body.  And I hate it when a doctor tells me that “it’s stress”, argh!

So the trip was good except for my tummy ache and being a grump.

On the 29th the movers delivered our stuff and I saw the house for the first time.

When I walked up to the house a hummingbird came right up to me, I took it as a sign that this is a good place. (both my and Stuart’s mom loved hummingbirds, I have a couple of meaningful hummingbird encounters, I may share those on another day)  The house has a good feeling about it.  The house is old and small, but it’s well taken care of, and it has an amazing yard.  Not the kind of yard you have in the Southeast, but a cool Southwest yard.  It also has a pool.  I’m so excited about that!  Oh, I’ll post pictures soon, I’ll show you everything!

After the movers left we went and had lunch with Stuart’s dad and Margaret.  It was the first time I’ve seen her since the accident.  I wasn’t sure what to expect so I prepared myself for the worst.  She is still a dear sweet woman whom I adore; but she had no recollection of meeting me before, or knowing anything about me.  I didn’t expect her to, so I wasn’t disappointed.  I was pleased that she remembered Stuart was here last month, that was nice.  She may not remember that tomorrow, but she remembered it today.  We had a pleasant lunch, then it was time for us to leave and she became agitated.  She is convinced they are trying to poison her.  You see, she doesn’t like to take her medication, so they put it in applesauce to give it to her, but she tasted it.  It was that taste that made her start believing they were trying to poison her.  I’m told she calms down fast and she won’t remember that, but it affected me.  She was very happy for the rest of the visit, she talked and talked. She made the comment that she likes everything.  When I simply smiled when she said, “No really, I just like everything.  Well, I don’t like someone right up in my face waving their hand, but mostly I like everything.”  (this was before the poisoning episode)

She is so in love with John (Dad).  When he walks in she lights up, and runs over to him and hugs him and kisses him.  It’s so wonderful.  They are still so much in love.  He is a very good husband.  Tonight Stuart was telling me that they don’t know if she’ll continue to remember him.  She has lost most of her short term memory and it keeps encroaching on every day.  She will start forgetting those she has not for the least amount of time; Dad and she have only been married for 7 years so she could start forgetting him in the not too distant future.  The longer she has known someone the longer she will remember them, she may not remember their correct age; for example she may think her son is her husband, because if fits with she is in her memory.  It makes me sad.  They are so much in love.  Dad once told Stuart that as much as he loved Stuart’s mom, Margaret was his soulmate; it breaks my heart that they had so little time together.

Margaret does seem to enjoy the time we spend together.  She just talks and talks, about anything and nothing, but some of her stories are quite entertaining.  I enjoy talking with her, my only problem with that is that I can’t hear a lot of what she says; I follow her body language and mimic it, that seems to be enough for her, but I really wish I could hear her better.  I don’t know if I can be with her alone if I can’t hear it well, I may not understand that she needs assistance before she gets agitated.

I started writing this last week, but we had a time getting out internet connected, the cable company isn’t in much of a hurry to send technicians out to a house to get them turned on so I couldn’t finish it.  For some reason, the WordPress app wouldn’t let me do anything on my own blog.  I couldn’t even comment of a post.  And the last reason I haven’t been able to post is that I haven’t been able to type very easily.

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getting the steroid injection in my wrist….at least my doctor was super cute.

Right before we left my right wrist started hurting and my thumb was partially numb.  Just exactly like how the De Quervain’s tendinosis in my left wrist.  That is pretty strange; it’s not acutually that strange for people who have had it, but it’s alson normally found in women who have babies.  The act of repeatedly picking up a child can cause it, but me?  Why am I getting this?  I have no idea what I’m doing, I thought I’d figured out what cause it in my left wrist, but now I’m not too sure.  Well, I got a shot in it on Wednesday, crossing fingers it works and I don’t have to have further treatment.  So that’s the reason’s I haven’t been posting about this adventure.  Well those and being incredibly busy.

I’ll write more about where we are living now soon.,,,With more pictures.

yeah, I didn’t get that done…

You may recall my post back in December where I talked about my fear of gaining weight.  I felt like I was handling that better, and things were going well.  I was trying to focus on nutrition and not on weight.  I have been trying to eat more mindfully, more intentionally (appreciating the food, accepting it’s nourishment, paying attention to my hunger cues….)

I say try on all of these because I haven’t been doing a very good job recently.

I promised I’d write a post about mindful eating last week, and well….. yeah, I didn’t get that done.  I started getting very obsessed with food this week.

The fight with food is strong in this one (ha, I sound like Obi Wan..or Yoda).

I was doing well when the scale was staying the same, and even went down a little.  Yes I still want to lose that last 10 pounds.  I think I’m more anxious about my weight because  I still have not gotten to the weight I want to be at, if I can get there I think I can keep it off, but why will these last few pounds not go away?  yeah, I know there’s more to it than that, but it’s very hard to voice what I’m feeling.

I know it’s not healthy to be so obsessed with my weight, but I also feel like if I’m not very diligent I will end up back where I was.  I really don’t want that.  I feel better about myself now (no, really I do!!).  I’m more confident when I meet people.  I have more stamina…..  I know how bad I feel when I’m bigger, both physically and mentally, and this is better.  Even though I’m obsessing about weight gain, it’s better than beating myself up over being fat all the time.  Hiding my body, not wanting to wear clothes that show skin, not wanting to be intimate, avoiding looking at myself in the mirror, cringing when I’d catch sight of myself in a store window…these are not healthy things.  My fear of gaining weight is part of that.  I don’t want to feel so out of control any more.

I am seeing a therapist about this.  After a friend shared that she had been seeing a therapist through an online counseling site, and she had a very positive experience.  With all the barriers I have trying to go to see a therapist face to face, I decided to give it a try.  I’m so glad I did.

I’ve been “seeing” my new therapist for a couple of weeks now, and by golly this woman has earned her money!  I was not in a good frame of mind this past week.  Food issues, anger, racing thoughts, insomnia…..mania.  Yep, I had a manic swing.  It wasn’t as strong as it has been, and I’m pretty proud of how I handled things, but it I was not my normal self.  I’m sure my new therapist didn’t think I was handling things very well when I bombarded her with emails for 2 days, but I just had a live chat session with her and it’s all good.   (by bombarding her, I mean that I wrote her 5 emails within about 3 hours, all of which were looooong.  If she weren’t my therapist I’d be embarrassed.  Okay, I’m still embarrassed)

I’m going to close for now.  I just wanted you all to know that, I’m not dead, I will eventually write a post about eating mindfully, and I am seeing someone about these issues of mine.

 

Have you ever thought about online counseling?

Would you try it, or not?  why?

I’ll share more of my experience soon…..no, really, I promise I will.

 

Some things are hard to talk about. Pocrescophobia

I’ve been struggling with something for a while and I’m not actually sure I feel comfortable talking about it, but there may be someone else out there struggling with the same thing who needs to know they aren’t alone.   I have an intense fear of gaining weight.

*****this post talks about eating disorders, this may be a trigger for some of you, please take care of yourself and read (or not) accordingly*********

As many of you may know, I lost 45 pounds in 2017.  This is something I have been trying to do for a long time.  I gained a lot of weight when I first got sick, on top of losing my independence, suddenly my body no longer felt like mine.  I weighed 225 pounds at my heaviest, and I didn’t recognize myself.  (I’m barely 5’5″ tall)  A few years ago I found out that I have Fructose Malabsorption and went on the appropriate diet to help with that, and at that time I lost 45 pounds, and kept it off.  However, I was not happy with my weight.  I was still overweight and it ate at my self esteem.  I tried and tried to lose weight over the last few years, but it just didn’t come off.  I had my yearly physical last year on December 30th, and at that time I weighed 182 pounds.  I was determined to lose weight, but I really wasn’t sure I could do it, and I was ashamed that I hadn’t been able to do it before.  Then I was put on a medication for my migraines that reduced my appetite.  Suddenly I was able eat much less and not feel hungry.  (Normally I feel hungry often.)  I lost weight, it came off slowly, but it steadily came off.  By the time I had my yearly physical last month I weighed 140 pounds.  (140 lbs at the doctor’s office, at home I weighed 135lbs)  The medication stopped curbing my appetite, now I’m fighting hard not to gain all that weight back.  I was able to bake for the holidays this year for the first time in many years, but I didn’t just bake, I ate, and I have been terrified that I’m going to gain….and gain…and gain, yet I can’t seem to stop eating.  I’ve gained about 5 pounds.  I know how quickly those 5 pounds could turn into 80+ pounds, and I’m desperate to not let that happen.  So many people will say that 5 pounds is nothing when you gain weight, they tell you not to worry about it, it’s really not that much, but those same people will tell you how great it is when you lose 5 pounds, how that’s a lot of weight to loose….  How can both of these be true?

When I lost the weight this year I found myself in love with my body for the first time since I can remember, if I ever felt that way at all.  I accepted that this body was not as I wished it would be.  Let’s face it, a 54 year old’s skin doesn’t really shrink back when you lose weight, but I was happy with what I saw, I loved all of me, saggy skin, cellulite, and all.  However, even though I felt that way, I was still terrified of gaining the weight back.  At one point, I went to the grocery store and started to buy some gluten free flat bread to make a pizza with, when I saw the amount of calories it had per serving I broke down in tears.  I was paralyzed with fear.  I simply stood there and cried.

Now, I see myself as fat.  I can see that I’ve lost weight, but I also see where I’ve gained some, and how much more I need to lose.  (10 pounds seems to be as hard to lose as 50)  I see photos of me and I think I look pretty good, then I look in the mirror and know that isn’t true; it takes a lot of effort to look good for the photos, on a day to day basis, I don’t look like that.  I look down at my body when I’m sitting in the living room and I’m appalled by the rolls of fat on my stomach, the bulges I feel under my arms, (back fat is not attractive), and the drooping of my breast.

I feel better since I’ve lost the weight.  I can get up from the floor easily.  I can walk further than before.  I go out with more confidence (most days).  I love wearing smaller sizes.  I think I look good…..sometimes.  Other times…well I covered that haven’t I?

I’m scared.  I’m terrified of gaining weight.  This is an intense fear, yet I can’t seem to stop eating.  I’m hungry all the time.  I’ve had a love/hate relationship with food for a very long time, my whole life really, I don’t want to go into detail about my past, but I need to let you know this isn’t the first time I’ve struggled.  Now it is even more confusing.  My weight seems to always be in a state of flux.  Since I was able to keep most of the 45 pounds I lost, I was encouraged that I would be able to this time, I’m afraid that isn’t the case.  I’m afraid I will need to track every thing I eat to make sure I don’t over eat or under eat.  I’m afraid I’ll need to exercise as much as possible in order to keep the weight off, but that is physically impossible because of my health, and I hate myself because of it.  I’m afraid I’ll fail and the weight will come back.

I’ve been trying hard to not eat as much, and to eat nutritionally dense foods; this hasn’t happened, instead I’ve been going overboard on sweets and cereal, and I beat myself up over it.  The guilt and fear is so great that I have tried many times to make myself throw up. (I can put my finger all the way down my throat and not throw up.)  If I could just get it out when I eat too much, I know I would feel better, I would be back in control.  No, it wouldn’t take away the guilt (I’m sure it would cause more guilt), but the fear is stronger than the guilt.  I’ve exercised to the point of absolute exhaustion (not regularly).  I have taken laxatives when I feel I’ve over eaten (not often, but I have).  I suffer from chronic constipation and get obsessed with how much that makes me weigh (how much extra weight is in me), laxatives help.  I try hard not to have them in the house, so I won’t abuse them.  I’ve actually been happy when I’ve had intestinal distress, because it’s a sure way to lose weight.  I’ve wanted surgery to make me look better.  These actions and thoughts scare me.

I will work on these things.  I may go back into therapy, but first I am going to try to deal with it on my own.  As many of you know I can’t drive because of the sudden attacks of vertigo I have, this makes it very difficult to get to therapy sessions.  Stuart has to juggle his work schedule to drive me places so we try to keep my appointments to one a week, two at the most; if I have therapy every week how can I go to any other appointments?  I just want to handle this by myself if possible.

I don’t think I have a full fledged eating disorder, yet.  I do not avoid meals.  I eat when I’m hungry, even if I feel I shouldn’t be hungry.  I have not been tracking every calorie I put in my mouth. However, I do plan to, to make sure I’m not over or under eating, and I will admit, to loose a few pounds.  I’m not avoiding foods, I do plan to cut sugar out of my diet for a while, but that’s not a bad thing, right?).  I normally do not eat so much that others would find it unusual. (however, I feel it is)  I do not purge, but I do admit, sometimes I would if I could.  I have a lot of fears and I can see that my actions have been changing because of these fears.

I have Pocrescophobia (the fear of gaining weight); I know this fear could lead to serious health issues, I know it is causing extreme anxiety for me, and I know it is hurting the people who care about me.  I will get a handle on it, if I can’t do it alone, I will start seeing a therapist and talk to my doctor.  (I promise)  Right now, I’m simply trying to be open and honest about this.  I’m asking you to not judge, or worry about me, I simply ask you to be witness to my fear and support me while I deal with this.

I do wonder how many people who have a chronic illness struggle with these feelings.

For further information, or help, I’ve listed a few organizations that deal with eating disorders:

 

It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

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I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

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/

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.

 

Mindfulness Quotes

Mindfulness practice has helped me get through some of the roughest patches of my life.  I haven’t been practicing as much as I want and would like to resume, I thought a good way to start would be to post a few of my favorite quotes on mindfulness.  I hope you enjoy them too.  (all photos were taken either by me or Stuart)

“Mindfulness is simply being aware of what is happening right now without wishing it were different;

enjoying the pleasant without holding on when it changes (which it will);

being with the unpleasant without fearing it will always be this way (which it won’t).” ~James Baraz

palm tree palm springs

“In the end, just three things matter:

How well we have lived.

How well we have loved.

How well we have learned to let go” ~Jack Kornfield

butterfly on flower

“Be kind whenever possible. It is always possible.” ~Dalai Lama

“Realize that this very body, with its aches and its pleasures,

is exactly what we need to be fully human, fully awake, fully alive.” – Pema Chodron

road runner porch palm springs

“If you want others to be happy, practice compassion.

If you want to be happy, practice compassion.” ~Dalai Lama

“Be happy in the moment, that’s enough.

Each moment is all we need, not more.” ~ Mother Teresa

** One reason I haven’t been keeping up my mindfulness practice like I used to is that the depression side of my Bipolar Disorder has been taking over my desire to do many things.  I started seeing a new psychiatrist on Monday.  It was a very in-depth appointment.  I took a lot of psychiatric tests before I saw him.  They mainly showed that I have a bit of a hard time concentrating.  Two of them weren’t really fair because they are exactly like a “game” on Luminostity that I play a lot, if I hadn’t been playing that for a while I would never have been able to do as well on those tests.  We discussed my past treatments, what’s going on, all kinds of stuff.  He is adjusting some of my medications, and referring me to a therapist he thinks would be good for me to see.  I will go back in a month.  I’m feeling better just knowing that I am much more comfortable with my care provider and think this is a very positive move.

 

Creativity As A Way To Cope

As you look around the chronic illness community you will often find that we use creativity as a coping mechanism.  There is science to back up our intuition that creativity is a good thing for us.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

This quote comes from a much larger article on this subject I found on CNN’s site.  I thought it extremely interesting, perhaps you will too.  This is Your Brain On Crafting.

Today I thought I’d share with you some things I’ve been doing recently to spark my creativity.  I received a tablet for Christmas, it comes with a stylus so I can draw right on the screen.  I love it.  It’s hard when I have very little space, and I often have to stop working very quickly to bring out a lot of art supplies, so learning how to create art on the computer has been wonderful.  I’ve been using an app called Sketchbook. They post challenges that you can take on if you like.  This has been perfect for me.  I have had a very hard time creating art in the past year, deciding on what to do has been too hard.  The challenges give me a focus.  It’s like having an assignment back in school.  I get so involved in these projects that times goes by without me noticing.

 

 

If you would like to see the photos larger just click on one and you can see a slide show that will show them in a larger size.

The assignments were:

  • Upper left – Biggest Fear – Title “The Monster Within”
  • Top Right – Female Human Animal Hybrid – “Butterfly Woman”
  • Middle Right – Modern Mythical Creature – Loch Ness Monster “Nessie”
  • Bottom Left – Person I’d most like to meet – “Siddhārtha Gautama” (Buddha)
  • Middle Bottom – Abstract Tree
  • Bottom Right – Dream Home

Do you have a creative outlet?  You don’t stress thinking you are good at it or not, just do something.  No one else ever has to see it.  Coloring books are really popular right now, this is a great way to get your creative juices flowing.  Is there something you have always wanted to try?  Photography?  Learning how to crochet?  Knit?  Cook?  Stamping? Paper Crafts? Jewelry?  Poetry? Writing?  So much to try, so little time!!

After decades of research by Professor Mihaly Csikszentmihalyi he found getting involved in something creative produces the same effects as meditation.  Something he calls flow.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

If you’ve been reading my blog for long, you know I’m very into mindfulness and the benefits of it and meditation.  So learning this made me very happy, especially since I just haven’t been able to meditate recently.

(shh, I’ll share a little secret with you, I’ve been really depressed for a long time now.  The antidepressants I’m on simply aren’t working.  Things need to change.  I’ve had a psychiatric nurse practitioner here who writes my prescriptions, but she isn’t very good at working with me since things have changed.  I’m bipolar, I’m having a severe mood change, I need help. So I’m searching for someone I can really work with, and I think it’s time for me to go back into therapy.  I’m working on it, but it is taking a bit of time.  While I’m finding the right doctor and therapist that click with me, I’ll be trying to do as much work as I can to help myself.   Including, being a lot more creative.  I plan to post  much more about my days, to see just how I’m doing, the good days, the bad days, and all the days in between.  I hope you will join me on this journey.  I might even post more of my challenges.)

Keep Calm and Create

 

 

ER – ICU – 3121 – Home

I got home from the hospital on Sunday afternoon.  I just read the post I wrote while in the hospital.  I’m so sorry, I had no idea that it was like that.  I would have let you know I’m alive before now!  You should have seen the status I put on Facebook!  It completely blows my mind that at the time I read these things after I wrote them and thought they said what I meant to write.  Yep…*Swoosh* MIND BLOWN!!

Here’s what has happened….I’ll refresh your memory from the last post, as if you could understand it.

I’ve been having these little muscle twitchy things.  Sometimes just minor, sometimes more pronounced, it always happened on the right side and it coincided with long days of vertigo, or migraines.  When I was exhausted, stressed…ect.  On Wednesday it happened without these being present.  It happened 3 times at home each time getting worse.  We decided to go to the ER.  As soon as I walked ….wobbled…in to the ER, it happened again.  The first thing they did was have me pee in a cup (check my electrolytes), and then a CT scan. The CT technician was great.  When it was over he stepped in the office to do the paperwork and it started, I remember thinking, “Where is he”…and then I screamed when the elevator hit the bottom floor and I was in motion…and scared, really scared, and crying…I didn’t know why I was but I couldn’t help it.  The CT tech was leaning over me, telling me I was OK, that I was in the hospital, we were going back to the ER, and he just kept saying that.  That was the first of many for days….some better, some worse.

At first they put me in a normal room, it was just to be for a little bit, until they could get me on the 5th floor, it has cameras, they wanted to observe me all the time….seizure watch.  But there was no room on the 5th floor, so I was put in ICU.  I could not be left alone….or far from help.  Stuart was there, but he had to go home to take care of our pets, and gosh he does have to sleep.  Luckily, my sister came soon and helped, thank goodness.

While I was in the ICU I had a 24 hour EEG, actually it only lasted about 15 hours because I had more than 6 seizures during that time so they didn’t need the whole time.  It came back clear.  I was sent to a regular room.

The doctor came in and told me that I am having non epileptic seizures.  He said they had a theory…  At that moment, I had a seizure.  He told my husband that, no, what he was thinking would not cause anything like that.  He was thinking something much less violent.  There are theories, but I don’t even know right now.  I will be seeing  my neurologist today.  I see my PCP next week.  We’ll see.

Since I’ve been home the seizures have calmed down.  They aren’t as intense.  I don’t know if it will stay that way.

Strange thing, while I’ve been having the intense seizures I did not have vertigo.  I would have small little swirls, that lasted just seconds, but that’s all.  Yesterday when I had severe rotational vertigo for hours.  I didn’t have a seizure until it was over for a while.

But I was in the hospital from Wednesday night to Sunday afternoon without having any real vertigo?  Don’t get me wrong, I don’t want seizures instead.  I just think it’s weird.  Now that I’ve said that, oh lordy please don’t let me have both at the same time!

I think I’ve told you all I know for now.

So far…another mystery in this crazy world of mine.

I’ll talk more about this soon….but….I’m having a Pity Party, and I’m not ashamed to say it!

I hope this makes a bit more sense….I’m really too tired to proof read it, not like it did much good the last time.  🙂