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.

 

 

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What You Shouldn’t Say To Someone Who Is Chronically Ill…and why you shouldn’t say them to me.

Shhh... photo by w. holcombe

Shhh…
photo by w. holcombe

I found a wonderful blog called Indisposed and Undiagnosed. (actually she found me first…and I’m so very happy she did!) She wrote a wonderful article about What You Shouldn’t Say To Someone Who Is Chronically Ill.  She has GREAT answers to her questions, and I think everyone should jump right over there and read her post!  She’s a fantastic writer and you will love her answers and suggestions on how to really talk to someone who is chronically ill.

Here’s her suggestions on what not to say….I wanted to list my reasons for why….

10. “It’s just a bad day”

I do have worse days than others….but it’s never, “just a bad day”.  I live with this every single day.  Even on the days I can do more, I live in constant fear that it will be stripped away.  I have to be aware that a severe vertigo attack could hit at any moment, I have to be prepared for the worse.  I know a cluster headache too could take over and have me writhing in pain, praying for death over that pain.  (they aren’t called suicide headaches for nothing!)  I also live with a chronic persistent headache that never goes away.  I’m very grateful for my better days and try to take full advantage of them…but I never have “just a bad day”.

My bad days are severe.  I can’t focus on anything.  The world spins violently.  I throw up…a lot.  I’m often in pain at a level of 9 or10 on a scale of 0-10. My bad days often end up in the ER.  These are not the days I show many people.

9. “Have you tried…” // “You should try…”

Unless you have what I have….please try not to go here.   When you do have what I have, we can compare notes, but normally I’ve tried all of that too.  However, I don’t mind talking about it….unless you are trying to sell me something, or really think what you are telling me is going to “cure” me.  There is no cure.  If you think it might relieve some of my suffering, by all means talk to me…but don’t talk down to me.

I’ve tried so much, you have no idea.  I’ve also had many reactions to things I’ve tried.  And yet, I’m still searching and trying new things.  I have to be careful, I have a lot going on, I am not going to compromise my health by trying something that my doctors don’t okay first.

8. “Come out with me and you’ll feel so much better”

This may be said with the best intentions, but I won’t feel so much better.  I might end up feeling worse. But that isn’t to say that some days I might want to get out.  Some days I really want to go out.  However, you have to be understanding if I say I have to go home…NOW!  And we would only be able to do the most gentle of outings.  In a quiet place…unless you can be very understanding about my hearing.

The thing that I’d much rather hear is…..”Would it make you feel better to get out for a while with me?”

I normally can’t go out and do much.  A visit would often be better, just sitting with me and telling me about your life would be great.

7. “At least you don’t have…”

I used to think like this, but I can’t compare how I am to others.  I am very compassionate to everyone who has any kind of illness….they have their fight…and I have mine.   I was told by my doctor when he diagnosed my vestibular illness… “I think this is one of the worst diseases that I know of that will not kill you.  However, sometimes you will probably wish it would.”   I’m not saying that for pity, it is just the way it is.  No I don’t have certain diseases that can be much worse….and I am very grateful for that.  If I sat around and only thought about…at least I don’t have ______.  It would drive me crazy with guilt for feeling any suffering over my illness, and that would be impossible.  Yet, my illness has made me much more empathetic toward others who are ill.

I must be gentle with myself, I know this is a hard road to live on, and carry on the best I can.

6. “You need to stop being so negative”

I try SO HARD not to be negative.  I try to keep…not so much a positive outlook, but a realistic outlook….and I do not sit around feeling sorry for myself.  I accept how my life is, and try to make the best of it.  Sometimes that is damn hard, and yes I can be a bit negative, I get depressed, and overwhelmed.  Wouldn’t anyone?

I don’t have many people to talk to, my dear hubby is the only person who really hears it all.  When I see friends and they ask about things, they may hear more than they want.  I don’t mean to sound negative, I’m really just telling things the way they are…just the facts.  And unfortunately, when you asked, I thought you wanted to hear about it.

Imagine if you had a stomach bug and a bad headache for over a year….wouldn’t you feel a bit negative sometimes, and need to complain to someone every now and then?  Well I’ve had a lot more than a stomach bug for and for longer than a year…understand a little?

5. “You got this because…”

I’ve heard this one a few times….I think I kind of ignore it.  I mainly hear things like this from people who are trying to sell me something to “fix” me.  Other people, I think….really?  I’ve been to how many specialist who can’t figure it out…what makes you think you know?  Now, I do hear it from people who have diseases, trying hard to figure out why they have it.  I went through that.  Why me?  Then I realized…Why not me?

What really bothers me is when I have a vertigo attack, severe migraine or really bad day and people say….”What caused it?”   Really?  Do you think if I knew that I wouldn’t avoid it?

Or they try and figure out what caused it…..Okay, yes these things can have triggers, but most of the time, I have no idea.  The only thing I have figured out that really bothers me is the weather and we sure can’t control that.

4. “So, what’s wrong again?” // “You’re still sick?”

This tells me you don’t think I really have a chronic illness that is not going away.  It tells me you don’t believe me.  It also tells me that you think I would play the “sick card” to get out of doing things with you.

Well, I am sick.  Yes, I am still sick, chronic means it is not going away.  I wish it would.  I want it to be something that I could just take a pill for and it would get better.  You probably get sick and it goes away in a little while, you have no idea what it is like to be sick all the time….and I am so very grateful that you never have to feel this way.

I hate being sick all the time.  I never know what may happen in the future, everything changes, maybe this will change, but the prognosis is that it isn’t going away.  I had to get used to it, I hope you can.

3. “You’re just exaggerating/making excuses/want attention”

I’ve never heard anyone say this to me….but I’ve been told it has been said behind my back.   Sad huh?

Well…..It hasn’t worked has it?  I’m alone most of the time.  I’m lonely.  I miss people.  If you are reading this and you think I ever did this….I promise I haven’t.  I really don’t want the kind of attention I get by being sick.  I don’t want attention from doctors, or platitudes from people.  I want to be able to have relationships where everyone feels I give as much as they do.  I want to work and play and live……just like everyone else.   But my life is different now.   It’s much different.   Some days, I’m okay with that.  Other days, it tears me apart.

Just know…..everything I say about my how I feel and about my illnesses are true.  I do not want special attention because of them.  I only want a life.

2. “But, you don’t look sick”

What exactly does sick look like?  No…really…think hard.  Of all the people you have known, all the movies you have seen with sick people, all the times you have been sick….did they all look the same?  Sick people look different.  We don’t all have sicknesses that show on the outside, all the time.

I try not to let people see me at my worst.  It scares me.  When I have a vertigo attack I am terrified, I do not want anyone near me who isn’t my husband or medically trained to see that.  I hide my pain as much as I can, if I can’t I need to be away from people.  Understand, when I’m at my worst you won’t see me, so of course, I don’t look sick when you see me.  You also have to understand, I may be gripping everything bit of will I have in my body to hold it together just so I can look good in front of you, so I can be as normal as possible for a moment, I don’t want to scare you away by looking as sick as I often feel.  I’m afraid you will never come back if I look too sick…..yet if I don’t look sick then you think I’m not…..it’s very hard to know what to do.

I usually get…..”You look so good!”  or “I’m so happy, You look Great!”  or worst  “You look like you feel so good”  ….. Most of the time this doesn’t bother me.  I don’t let a lot of people know how bad I feel.  It bothers me when someone close to me, who knows I have been having a very hard time, sees a photo of me and says one of these things….I suddenly think….Really?  You too?  You think just because I look good for this posed shot that I feel good?

1. “It’s all in your head”

I’m lucky, no one has ever said this to me.  Of course, I’m not sure if anyone has ever said it about me.

I love the answer that Indisposed and Undiagnosed gave….it is so true:
“The only thing I can say to the people who have used this line before is;

Yes, it is all in my head.

I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).”

Be sure to go to  Indisposed and Undiagnosed and read her suggestions thing you CAN do for people with Chronic Illnesses.

I’ve decided to make that a separate post….I have a lot to say…haha

** Please note**  I do not blame any person for dropping out of my life.  It is hard to stay in touch with a chronically ill person.  Especially in the beginning when they are so hurt and it is so consuming.  After that, it is even harder to come back in.  Life changes, I understand that.  For those who may want to communicate with me on any level, I welcome you.  Being chronically ill and mostly housebound is a lonely life sometimes.

Good – Bad – Ugly…. Sometimes it’s Pretty, isn’t it?

Thank you all for the outpouring of support and encouragement about my blog and writing and well just me being me.

The comments here and on Facebook, emails….well, everywhere…I was overwhelmed by the love!

I’m sorry I haven’t posted before now….I’ve had some bad and ugly days recently….there’s been come good and pretty times in there too, maybe not whole days, but I’ll take it!!

First right before I went to the appointment I’m about to talk about, I broke my pinky toe.  Yep, I mean within the hour before, I caught my toe on my nightstand and OUCH!!  I saw stars and everything.  Pretty little stars.  *snort*  It’s been a while now…it is still slightly sore, but it has all healed, finally!!  It did mess up walking on my hip a bit though….same leg.  But I didn’t fall!!  Good thing!!!

I was very excited the beginning of June I saw a new neurologist here in Charlotte.  She runs the Carolinas Headache Clinic in Matthews, NC…so it really isn’t in Charlotte, but it is so close it may as well be.  The first appointment I had with her she spent over 2 1/2 hours with me.  I don’t know if that is her normal time for a new patient or not.  I know she sets aside a longer appointment for a new patient, but I was also her last patient for the day so she took her time.  She gave me a very thorough exam and we talked at length about my medical history.  She was very interested.  I was very impressed.  I love my neurologist at Duke, who also specializes in headache pain (my doctor at Duke recommended this doctor, they know each other well).

As much as I have loved my doctor at Duke, I think this doctor will be able to really concentrate on me more.  She won’t be so over whelmed with all the influx of patients from the system at Duke.  (I hope that makes sense)  The doctor here is very interested in my Chronic Persistent Daily Headaches.  (I have a headache all the time, it ranges from about a 3-5 on a scale of 0-10 pain scale, I have had this headache since I was 11 years old, right after my first migraine)  She believes if we can break this headache then we can break the migraines and cluster headaches.  Wouldn’t that be nice?

She started me on a new medication, it was to hopefully help with the daily pain of my head and my all over pain.  Unfortunately, it hasn’t worked.  However, I don’t think we can judge it fairly.  I am on a drug called Limbrel, this helps with inflammation and I had problems getting my prescription for over a month.  (long story short…the doctor faxed in the prescription but the pharmacy said they never got it…this happened over and over, finally they got it straight…why it took so long, well I have no idea, but I finally have it!  3 months worth, thank goodness.  I had no idea how much this was helping my joints and all over pain, I was having trouble typing my joints in one of my hands were hurting so much.)

The past month has been filled with the worst migraines.  Let me give you a little run down….Out of the last 25 days I’ve had 22 migraines, 1 cluster headache, and 15 attacks of vertigo.  On July 2nd a vertigo attack started around 3pm and lasted until after 3pm on July 3rd.  (July 2nd was my birthday…I will just have to celebrate 364 Un-birthdays!!  Want to have a Mad Hatter Tea Party with me??)

Can you guess why I haven’t been posting?  Or reading my dear friend’s blogs?

I admit the depression took hold of me and jerked me around a bit.  I think I had some reasons, even if I didn’t have Bipolar I disorder, but I admit my emotions do go a bit extreme because of my illness.  The demons didn’t knock on the door, they busted it down!  For a while there I thought I was lost.  I was drowning, big time.  I was having panic attacks, heck I’m still having a few of those.  I’ve been having trouble going out of the house again for few of having attacks.  I hadn’t been doing my mindfulness practice…except during vertigo attacks, and sometimes not then, sometimes I would completely freak out.  (however, I’m relieved to say that most of my vertigo attacks have been mild, by that I mean slow rotation, they haven’t been rapid spinning….but I won’t go into detail about what they were like.  Just know they aren’t as scary. However, I will just say….they are exhausting.)

I’ve been trying hard to pull myself out of the depression.  The odd thing about this, the medication that the neurologist put me on is actually an antidepressant.  I was really hoping it would help with this too.  However, I think the fact that I was in a lot of pain, and had so many headaches and vertigo when the medication I was taking was supposed to be helping…well this was making me more depressed.  Makes sense right?  Plus I have a few other things going on in life that are stressing me out too.

Recently I’ve been diving into my mindfulness studies again, and trying to meditate.  Meditation doesn’t fix things, but it just makes me be here.  I was so caught up in the fact that I was in pain, that is where I was, I was hurting, angry, sad, scared, did I mention angry…oh you would not believe the anger that was popping up!  wow!  I hate it for Stuart the past few weeks.  At least he couldn’t hear the even more snappy things I was saying in my head.  ewww.

something I need to remember

something I need to remember

So, I’m focusing on just being here.  I’m taking a lot of deep breaths, and I’m just trying to be me.

On a different note….I’m in physical therapy now to help my hip get a bit stronger and have more range of motion.  I have a day in the gym one day a week and a day in the pool one day a week.  The pool is wonderful.  However, I’ve had to miss a few sessions because of the pesky vertigo.  The last PT session, the therapist really showed me that I am not as strong as I thought I was, she kicked my butt!!  Whew!  However, I’m afraid that the new exercises that I have been doing have aggravated the back injury.  I have been in so much pain.  The sciatic nerve has been shouting at me.  It’s not just yelling on my left side now, it’s screaming on both sides.  I’ll talk to her at my next session tomorrow.  I may have to go see the spine doc again.

Well….I can’t think of much more to say today.

I don’t know if I’ve covered good, bad, ugly…and a little pretty, or not.   But there is some of all in my life.

Good….focusing more on mindfulness again.

Bad….vertigo, migraines, back pain…being really mad there for a while.

Ugly…umm, vertigo sometimes, and you don’t want to see my face when she’s kicking my butt in PT.  hahaha

Pretty….My new headache doctor, she’s really pretty – but not as pretty as my Physical Therapist, oh my!  The feelings I get from both my new headache doc and my PT.

Gratitudes 3 – A Pretty Darn Good Week!

by w. holcombe

by w. holcombe

Things haven’t been perfect this week.  I did have a night filled with cluster headaches.  But I got through it, and since then I’ve been feeling, well, pretty darn good.  Until I got this little virus, but I already wrote about that, and I’m grateful that it will run it’s course and I’ll be done with it!  Plus I’m very Grateful that it really hasn’t been that bad, a couple of icky days, but that’s about it.

I am so very GRATEFUL that I found something that is helping me with my tummy issues!  I found a book that addresses the food issues that I have, but I plan to write a whole post about this, it’s so exciting! And I think it could help others with dietary issues.

I am GRATEFUL:

  • that I have a new psychiatrist!  She is so professional.  I’ve only seen her once, but she took a very detailed patient history, discussed all my medications in detail, discussed my concerns, and our future plans.  I was very impressed.  After the last fiasco with my previous doctor, it is such a relief to find a doctor who is not only professional but enjoys her job.
  • that I have been on more regular sleep schedule.  This is something I haven’t had for a very long time.
  • I am waking up with more energy.  Of course, this is probably because I am on a more regular sleep schedule, but it sure is nice.
  • I’ve been able to go down stairs every day this week. Most people probably don’t know just how disabled I have been, but tackling the stairs have been a huge task for a long time.  Most weeks I’ve been lucky if I’ve made it downstairs one or two days.  So making it down stairs every day for a week, that is a great accomplishment!
  • I have gotten out of the house many times this week!  Not only have I made it downstairs every day, but many days I’ve gone out.  I went to the grocery store….a HUGE accomplishment!  I went for a ride with the top off of the car!  I went to the Thrift store and got a new pair of pants.  I went and looked at glasses.  (I have an eye doctor’s appointment tomorrow, and will need new glasses.)  I even went out to eat, this is hard because of all the noise.  I’m also proud I went out to eat and stayed true to my diet, I didn’t eat anything that would make my tummy unhappy.
  • yoga pose 1yoga pose 2I exercised a little this week….a very, very little…but I did something!  Not only did I do a lot more in general, and you can call that a lot more exercise…I know my body is!  I did a few yoga poses almost every morning.  Just a few.  I’m trying to learn to balance more with my eyes instead of relying on my ears so much.  So I’m doing some of the standing yoga poses while focusing on a focal point.  Maybe it will help.   By going out an doing more I’m also working on increasing my stamina.
  • I didn’t let a virus ruin my week.  I was having a really great week, then I caught a virus and suddenly I felt crappy.  I thought, am I going to start feeling really bad again?  Then I caught myself….Stop thinking like that.  I can’t predict the future.  And what has been happening has been great, but it doesn’t mean it will continue.  I  will live in this moment.  and I’ll enjoy it.  If it’s a bad moment, I know it’s a moment.  It’s my moment.  And it’s OK.  (A note to Laurie at HibernationNow….Yes, I did over do it…You were right!  so I’m very tired today…but it was worth it, yesterday I had a a very fun day!)
  • I realized that even having a virus I still don’t feel as bad as I have felt.  No I don’t want to live in the past, but it was a bit of an eye opener when I realized I was lying here sick and I didn’t feel as bad as I have for a lot of the time this past year….heck the past couple of years.
  • My head hasn’t hurt much at all!  As I mentioned above, I had a night of cluster headaches, but since then….my head has been so good to me.  There’s a couple of reasons I think this may be, but I’m just grateful that it has happened!  I’m sure I’ll have headaches in the future, but to have the relief I feel now….so GRATEFUL.
  • I made my lunch today all by myself.  I cut up my own chicken today, and warmed up my own lunch.  Because of my balance issues and sudden vertigo I haven’t trusted myself to use a knife in a long time, at least without supervision.  Today I made my lunch with Stuart upstairs.
  • To hear my husband say, “It’s so nice to be able to do things with you.”   Remembering to be in this moment…..

My Head Hurts

Headache  by Sinornis

Headache by Sinornis

I haven’t talked much about my headaches in a long time.  I wrote a post about 10 weeks ago about my last Botox treatment for my migraines.  I was thrilled at how well this treatment had been working.  I SPOKE TOO SOON.

After the treatment I started having migraines that did not stop.  I had a month-long migraine.  After calling my doctor I was prescribed a short course of high dose steroids, this helped the migraines, but ended in a horrendous Vertigo attack, that caused me to be put on a month-long course of low dose steroids.  Through out the month I was still having headaches.  The break in headaches during the short course of high dose steroids didn’t last long.

I have been having not only migraines, but a lot of different kinds of head pain.  The one headache my doctor agrees I’m not having is Rebound Headaches. also know as Medication Overuse Headaches.  There are certain medications that you take on a regular basis that cause you to have rebound headaches, I do not take most of these medications, and the ones I do take I do not take on a regular basis.  I am extremely cautious about this.  I am very afraid of getting rebound headaches.

For weeks, months now, I have been having severe pain.   It wakes me up at night, screaming, often yelling NO, NO, NO….with tears running down my face.  I’ve been studying Mindfulness Based Stress Reduction to help with chronic pain and this has helped, but I can’t control the pain when I’m asleep.  I dream about being in pain.  I’m nauseous.   I wake up so exhausted and I have no idea how to stop this pain.   There have been two different types of headaches I’ve been getting that are different from the migraines.  One is a sharp pain that feels like a poker stabbing me in the eye, my eye waters and I can’t open it all the way.  It’s only on one side. It is the most intense pain I’ve ever felt.  I have a much greater appreciation for the song Maxwell’s Silver Hammer by the Beetles, however I wish he would make sure I was dead at the time. (this is only the pain talking)  I can only rock back and forth and pull my hair, I scream….it came at the same time each day for 5 days, it would last for about an hour or so, stop then return in about an hour…this would have for 4-5 times each day.  Then they stopped, for 5 days, and started again, for 3 more days.  To date, they haven’t come back so far…..Yesterday I was seen at Duke’s Pain Clinic, I saw my Neurologist’s (who is a Headache and Facial Pain Specialist) Nurse Practitioner, since this was an emergency appointment.  I now have a new diagnosis.  CLUSTER HEADACHES.

Cluster Headaches (have been called suicide headaches) occur in cyclical patterns or clusters, which gives the condition its name. Cluster headache is one of the most painful types of headache. Here’s a link to find out more about them at the Mayo Clinic site. Cluster Headaches via Mayo Clinic   There are many other good resources on the internet too.    Cluster headaches can go away for weeks, months, even years.  They often return with seasons.  I hope mine never return.  If they do, I know they will end, and that will get me through it.

I’m also experiencing a lot of pain in my neck, this pain also comes on while I’m sleeping.  It rarely happens when I’m awake.  It does cause some of my muscles to tighten, but the main pain does not feel muscular.  I must have a CT scan to try to find out more information.  This pain started after the Walmart expedition.  When I was in the car I was not in a very good position, my head and neck were at an odd angle.  I don’t know, but I think this may have attributed to this pain.

So every night at 4 am I wake up in pain.  EVERY NIGHT.  I try to help it, change position, meditate, massage, anything…. and it will feel better, I will go back to sleep, and about 15 – 20 minutes later I’m awake again…..OH it hurts!  and we start again….it goes like this until I give up.  I try so hard not to wake Stuart.  No need for both of us to lose sleep.  I’m exhausted.  Sleep deprived. Some days I can nap a little.  Sometimes during these naps I will wake up screaming.  It is terrifying to wake up screaming and crying.  I know my husband is so frightened for me.  I hope the CT scan will give us some answers.  I also hope it is something that can be easily fixed.

Why suddenly am I having headaches that wake me up with so much pain?  Why am I having headaches that are so different from headaches I’ve had before?  We don’t know.   There is no known reason why Cluster Headaches start, some studies suggest certain things, but there are no conclusive answers.  My other headaches?  We are working on finding that out.   My CT scan is schedule for June 16th, and my return visit to the Pain Clinic is on the 19th.  Hopefully, I’ll have some news then.  How I’m going to sleep until then, that is a mystery……but one I’m sure I will unravel.

Bang! Bang! Maxwell’s silver hammer
Came down upon her head
Bang! Bang! Maxwell’s silver hammer
Made sure that she was dead