I feel shame (Shame and Chronic Illness)

I’ve been trying to write a post for weeks now, but I just haven’t been able to get the words to come out. I had a CTA scan of my head and neck on July 26th, that’s a CT scan that shows your arteries. I had planned to post about it, to show you the awful bruise the contrast caused, and tell you how I freaked out when the contrast hit me, but I was actually ashamed that I felt that way. They had a hard time finding my veins, as usual, and I, once again, felt ashamed that I’m difficult. I had a bit of a reaction to the contrast and had a very debilitating migraine and nausea for days. I couldn’t write, I couldn’t do anything. Lorraine was nice enough to do a Mindfulness Monday. I’m ashamed I haven’t written since then.

I feel that I have needed to write and tell you how I’m still struggling with the migraines, how the medication isn’t working, and how I can’t accomplish anything really. But I’m ashamed that I’m not better. I’m ashamed that I keep trying different medications and they don’t work on me. I feel like I’m failing. In our culture we are expected to take a drug when we get sick and get better, if we don’t get better then we aren’t trying hard enough. We should change our diet, exercise more…. You see the stories all the time, how someone beat this or that disease by doing these things. We are expected to fight our illnesses and get better, when we don’t we often feel shame. Or at least, I know I do.

With my migraines everyone has a solution. So many people have or know someone with migraine, it isn’t rare, but chances are it’s episodic migraine not chronic migraine. I’m asked so often, “Do you take medication?” and it’s followed by, “I take (or so and so takes)______ and it works!” I want to scream, “Of course I take medication! I take preventatives, and abortives, and supplements, and I use alternative treatments! Nothing is working but I’m afraid to stop any of them for fear it will get worse!” But instead I feel ashamed that I’m defective. Not only do I have migraines, I have migraines that won’t respond to treatment.

Weekend before last we went out for breakfast with Stuart’s father at our usual place. I ordered a gluten free pancake, when it came I suspected it was wrong, but they have never gotten my order wrong before, so I took a bite. I knew immediately it was wrong. I was poisoned. I called the waitress over and asked and sure enough, it wasn’t gluten free. She apologized and I smiled and just ordered a new one. I looked at Stuart with huge eyes and he just said, there was nothing that could be done now. His father said, “it was only one bite” Stuart explained that it only takes a crumb. I should have told the waitress that I didn’t want anything else and told Stuart and his dad we needed to go home, but instead I was too ashamed. I ate that new pancake knowing that I would be sick within an hour or two. I sat there listening to them talk, while my head pounded, my stomach started to ache and get tight and my bowels started to rumble. I ended up having to rush to the bathroom there and it was obvious my stomach was distended by the time we left. I felt even more shame that I could not hide it.

I’ve never been one who is ashamed of my cochlear implants, I know a lot of people like to hide them, but I like for people to understand that I have hearing loss, because I do get ashamed when I have trouble understanding people. I sit and “listen” to conversations, but I often don’t “hear” them, and I’m too ashamed to keep asking for people to repeat what they say. After you are told over and over that it’s not important, you start to believe it, so I don’t worry about it. Then I get more ashamed when I miss things that I needed to hear.

Yesterday I had a very bad day. I woke in so much pain, but more than that when I’d stand I would see stars and I’d start to black out. I asked Stuart if he could work from home, but before he could answer I told him no, I’d be okay, because I was way too ashamed that I needed him. I was not safe, but I was too ashamed to admit that. Last night was the first time I told him how I felt. Now he is afraid he has done something to make me feel ashamed, and I feel shame that I’ve made him feel this way. I’ve explained to him that it’s complicated.

I’m just coming to terms with these feelings. I’ve tried to put a label on this before and called it guilt, but that wasn’t right, it’s shame. Guilt is feeling that you’ve done something bad. Shame is feeling that you are something bad. So, yes I feel guilty about asking him to work from home because I don’t want to take him away from work (doing something bad), but I also feel shame about it because I am ill and have to ask in the first place (am something bad).

Do you have these feelings? This will be a major discussion coming up with my therapist. Shame is not a healthy emotion, this is something we need to battle sooner rather than later.

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Relief. The Importance of Keeping a Medication Diary

Tucson night sky

If you’ve been following my blog you know that I’ve been battling a severe migraine flare since April 20th, I’m so happy to share that I’m finally back to my baseline for my migraines and my rescue medications are once again working so I’m having sweet, sweet relief!! How did this come about? Well let me tell you, this was an ordeal! And it could probably have been sorted sooner if I had noticed something earlier, in the end, I’m glad I wrote about when I started new medications here.

One of the first things I did when all of this started was try to figure out if I anything had changed, had I started a new medication, was I eating differently, sleeping differently….anything? Well I had started Emgality, a migraine preventative, but I started it a month before this started and I was insured that it would not cause migraines. I had also started Viibryd, an antidepressant, but I (thought) I started it in March. Finally after my hospital stay in June, I went through my blog posts and found this post on April 27th that said I started an antidepressant the week before. https://picnicwithants.com/2019/04/27/little-update-from-travels-to-depression/ That was the week the intractable migraine started. The post also talks about how much better my migraines were in March after I started Emgality on February 28th. Ding! Ding! Ding! Could it be that this drug was contributing to this migraine flare? I was going to find out! I looked up the side effects for Viibryd and sure enough, one of the common side effects is “headache” (15%) and one of the lesser side effects is “migraine”. I put a call in to my psychiatrist and a message in to my migraine doctor. Wouldn’t you know it, my psychiatrist was out of the country! Ha! Glad to know my doctors had a good time traveling this summer! So, everyone knows what I did with my migraine doctor, if you missed it, you can check out my post on SPG Blocks here, but keep in mind that I was still on the Viibryd at the time. I got a message from my psychiatrist PA and they said that migraine wasn’t a side effect of Viibryd (Can you see me rolling my eyes?? I read the prescribing information handout that comes from the manufacturer, where did she get her information?) In the call I’d also asked about a couple of other antidepressants that are used at migraine preventatives to see what they thought, I was told that they didn’t go with Viibryd. Umm, I’m not going to stay on Viibryd! But she couldn’t seem to understand that. I can’t say it is all her fault, the front office there is awful! I love my psychiatrist, but it is horrible to try to get messages through, so I decided to slowly taper off of it by myself, and just wait for my appointment which is next week to discuss the rest. And guess what?! After being totally off Viibryd for about a week my migraines dropped to about my baseline, or below.

Since my birthday, I’ve taken a rescue medication once! Don’t get me wrong, I have had more than one migraine, but they haven’t been severe and I haven’t felt the need to take medication for them. At the first sign of a migraine I’ve been taking 500mg of Ginger and it has been helping (this is a great article about the efficacy of ginger in helping migraines). As I’ve mentioned before, I can’t take rescue meds more than 2 days a week, so unless a migraine is bad I normally don’t take it since I often have migraines an average of 5 – 6 days a week. I save those 2 days for days I have something planned, or days when it is very severe.

I just noticed that today is the 15th and I haven’t taken migraine meds since the 5th! Wow! Perhaps the Emgality is doing something too? I’m really thinking that the Viibryd was messing me up big time. And so far I haven’t noticed my moods dropping since I’ve been off of it. You know, I’ve been fighting a migraine today, but I think I’m going to take something for it. This is great! Maybe I won’t have to save my medication for worse days? Do I dare hope?

To close I’d just like to say that this has taught me to always mark on my calendar when I start and stop medications, and pay close attention to how my body changes. I really thought I was on top of these things, but obviously it can slip by you, especially during busy times and times of high stress. If I had been able to put together that this had been a side effect earlier I might not have suffered for so long.

Me and My Migraine

TX360 nasal applicator for SPG blocks for headache disorders

I’m happy to say I was able to get into see my doctor on the 18th, I’m sorry to say I still have this migraine. I’m happy to say I have had some relief, I’m sorry to say it has been very short lived.

When I saw my doctor we started the SPG ( Sphenopalatine Ganglion) blocks. You can see the device in the photo above. When they first started doing these blocks the procedure was much more invasive, now I can do it by myself. I’ll show you:

First you get the anesthetic in the syringe
Then you put the device together and place it in your nose (note the long tube that is shown in the main photo is up in the device at this point, not up in my nose)
Fist you just let the plunger fall, that releases the little tubing, then you press the plunger end and that releases the medication, and that’s it. Then you repeat it on the other side.

For the sake of time and because I’m feeling mighty lazy and hurting, here’s a link to an article about how SPG blocks are supposed to work: Sphenopalatine Ganglion Blocks in Headache Disorders

To break this migraine flare that has been going on since April 20th, I am to do these blocks every day for 10 to 14 days. Today is day 9, I’ve had a few hours of relief, but that’s all. I feel that as soon as the anesthetic wears off the pain returns. Sometimes it is within a few minutes, sometimes I get an hour or two, but never longer than that. I had hoped that the time would build up and up as the treatment progressed, I’m losing that hope now. There have been times that the pain has been so severe that I have considered going back to the Emergency Department, but why? I know it would do no good.

This has become very hard to talk about. People ask me how I’m doing and I find myself lying. I don’t want to tell anyone that I’m still in so much pain. I don’t want to keep avoiding social activities. I’ve forced myself to do things, but I did have to excuse myself because I was getting too sick. I’m embarrassed. I know people do not understand. I know they are tired of hearing it. I’m tired of living it. I’m tired of saying it. I’m tired of hearing people say they are sorry. How long can they continue to feel bad for me. I don’t want pity. I know they can’t understand. If this is my new normal I will have to learn to live with it. I have to learn to push through it. To be able to say, “I’m fine” when people ask, and somehow mean it. I have to be able to put on the face and be okay with that. No one wants to be around someone who is consumed by pain all the time. How do I answer these questions? No I’m not better, but I’m okay…..some days, some days I’m not okay, but that’s okay too.

I can hear it….. It’s just a headache. Is she ever going to get better? Can’t she just take something? Why doesn’t she get a better doctor? She exaggerates. It can’t hurt THAT much. She’s ALWAYS sick. I’d do this or that if I were her….massage, integrative medicine, acupuncture, chiropractic, this or that supplement, this or that diet, this or that exercise, a certain pillow, essential oils, TMJ treatments….believe me I’ve tried so much my head spins from it all and I’m still considering more!!

Can you understand why I would lie about how I’m feeling? Why it’s getting so hard to talk about it? I am just so tired.

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!



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.

20180606_163102-collage
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.

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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.