It’s not a Self Harm Statement, it is a Real Question~

I may not be speaking for all of us, but as someone with multiple chronic illnesses I think it is safe to assume that most of us have at least thought “why keep fighting this loosing battle?”

I have thought it, cried it, screamed it, and posted about it a bajillion times.

More than once people have thought it was a self-harm statement, a plea for attention, overly dramatic.

I’m writing this post to let you know that when I question why I should keep fighting this battle it is none of the above. So what is it? It is a real question!

It is…

Painsomnia nights.

Pain filled days.

More doctors appointments.

More diagnosis.

More medications.

Isolation.

Loneliness.

Depression.

Feeling worthless.

Feeling a burden.

It is facing this EVERY SINGLE DAY FOR THE REST OF MY LIFE.

I will not get better! It is not treatments that clear me of then I become a survivor of. It is not 10 days of rest and pills and I will be cured. It is not a diet change. It is NOT EVER GOING TO GO AWAY!

So then becomes the question…

“What am I fighting for?” Another day of fighting? Always fighting. No end in sight. No relief in sight.

An improved quality of life on some days, yes. But it’s so hard to make those days worth the fight.

We wonder why we fight when there is no goal to work toward. Our social life is pretty much no existent, we cannot work, we just lay here and fight another day- just to do it again tomorrow

And the next day

And the next

And the next

Days become weeks

Weeks become months

Months become years

Yet we fight.

For most of us the question is just that, a question. Not a self harm statement. So when we ask it, feel free to remind us of the reasons to keep fighting.

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A Bit of Bragging and a Bit of Blue Toes~

Lately life seems to be moving a hundred miles an hour. Jumping from one thing to the next without any time to absorb anything, down days follow every event out of the norm, then another event happens and then more down days. I’m spinning.

The events happening are not even bad, they are just energy required, therefore depleting.

Anyway, time for some bragging…

Monday was a huge milestone for me. To know me is to know that I fear driving, as my cognitive skills deteriorate my fears just increase. I’ll go for months without driving at all, when I do drive it is a short distance with a familiar route and it could take days to psych myself up enough to even make that trip. *By short distance I am talking 1.5 miles to the nearest Walmart or 2 miles to Walgreens.

Well, Monday I drove myself to the doctor, 45 minutes from our house. Thank you Siri! Siri tried taking me a different unfamiliar route on the way home so in my disagreement with her I did get a bit lost, but I didn’t have a panic attack.

However the stress depleted my Cortisol and I spent the rest of the day in bed.

But I made the trip! Alone. And survived!

So I guess that’s enough bragging! Now for the blue toes.

With the cooling temperatures outside means the Raynaud’s phenomenon is in high gear! I think it’s been years (if ever) since my toes were anywhere near this bad! I’ve tried socks and wrapping in blankets and yet the circulation is not there! A heating blanket helps, but that’s only after about an hour of cold sweating toes. My toes turn a grayish blue, and hurt- omg they hurt.

I’ll be mentioning this to the doctor on Monday when I go in for my most recent lab test results.

Oh speaking of tests. I’m really curious what my Cortisol will read because 3am Monday I forgot that I wasn’t supposed to have my morning meds (which always makes me sick) and I took 2.5 and went back to bed.

I will keep you updated.

I hope you are all doing well!

Ps- if you have a topic related to chronic illnesses you’d like to chat about please let me know.

If today is an indicator…

It is no secret that I do not handle the cold temperatures very well at all. I’m in Texas so I should be fine right? I thought so! It does get cold here, it’s not Oregon cold, but it’s cold.

Well this week we had a cold front front drop in. Last night I could feel the cold pain in my knees, but this morning, the cold has set in.

Yes, 62′ is the cold that is torturing me! You’d think it was below freezing with how my body is responding!

If today is any kind of indication of the winter I will have, I don’t wanna do this anymore.

The pain is so intense that walking is gut wrenching at times.

Sweat pant, a sweatshirt, socks, and bundled in blankets I could not get my knees or feet warm! I tried rubbing them~ I couldn’t get the painful ice- turning blue of Raynauds to ease.

My amazing hubby dug the electric blanket out, wrapped me up and plugged it in, it took about an hour to get my knees and feet back to a normal temperature.

I’m a little (okay a lot) scared of what’s to come as Autumn turns into Winter.

Fear.

I’m here, but not, Kinda, maybe~ SPINNING

Imagine a Merry-Go-Round; round and round you ride. Spinning, seeing bits and pieces of that surroundings that are not spinning. You can think, but the images move faster that words can be produced. You just spin. Round and round. You may see the same image enough that a sentence or response can be formulated, but probably not a full conversation.

And the spinning stops.

You didn’t realize how out of it you were with the spinning until the spinning slows then stops, your head really spins, the surroundings are slowly coming into focus but now you cannot remember what you wanted to say about them.

I seem to go on this merry go round ride often! But only barley to I know I am on the ride until it’s at a stopping point.

Wait wait wait~ I’ll start over.

Sometimes I can post on Facebook or other social media all day long, sharing memes and other useful (lol) info.

Sometimes I cannot think straight and do not respond, do not actively participate in groups, do not even comment on friends posts. I am not ignoring anyone. I am not being anti-social. I am not doing it on purpose. I am spinning, round and round.

Sometimes I can read an article! Sometimes I cannot read who posted it.

I spin round and round.

It might be information overload on a short sensory string. It might be brain fog.

I do feel guilty because rarely do I respond to others, I never know if I am interpreting their words right, if I am responding intelligibly, or if I am spinning.

Anyway- speaking of spinning…

ROUND

ROUND

ROUND

SPINNING

SPINNING

SPINN…

Not even worth it~

On the days I have doctor appointments I just know to be fasting and not to take Morning medication (including hydrocortisone) in case of whatever blood draw is done. Today the only difference was a 10am appointment versus my usual 8am appointments.

Our son was picking me up at about 8am, his appointment was for 8:30 and it was pointless to make two trips to town! I slept late, therefore had to hurry getting ready. Hurry!?!? Yeah right, it take so long for my body to function, much less to do so without the HC medication an hour before I even got out of bed. But I managed.

And the low Cortisol headache started…

And it got worse…

And worse…

We went to his appointment first, luckily just a blood draw. Then we had an hour and half to wait. We all (his fiancée and and our bonus son was with us) went to IHOP for breakfast (no I didn’t eat, still fasting) the smell of food was nauseating.

Then back for my appointment.

Oh my appointment.

Now by this point I am really not feeling! Not thinking straight.

We talk, he does his exams and then…

He shrugs his shoulders and says “I really don’t know what to do with you!” We laugh at the honesty.

I’m not to have any dairy.

I’m to return immediately the next time a joint is doing what it does.

No blood draw.

No blood draw.

Now ordinarily I’d be thrilled about this, but omg I’m suffering because of the lack of meds and today you don’t want my blood? Hahahaha.

Usually I don’t do nearly this bad without the delay in meds, for some reason today is bad.

The plans we had in town for after the appointment were cancelled JUST TAKE ME HOME!

In the parking lot I took my morning meds plus an updose. COME ON MEDICATION KICK IN BEFORE I PUKE ALL OVER MY SONS TRUCKS.

I just keep feeling worse.

We stop and get me some food. When I eat I call it renting food, because I never get to keep it for very long. As is usual, my body rejected the food.

I crawl into bed and sleep takes me quickly and deeply for a few hours.

I wake up, slowly scanning for pain, praying it went away while I slept— no such luck.

More updose.

Omg the pain.

Today’s appointment… NOT EVEN WORTH IT!

Back to the Doctor~

I was just talking earlier today about tests, testing never seems to end, well I guess when new symptoms are always popping up that is to be expected.

So off I go tomorrow, going to see if we can figure out what they New symptoms are caused from and to see why the old ones have intensified.

I should be used to the tests, I should be used to the appointments, I should be used to all of this- but I’m not. Each appointment still scares me, what will be found this time? how painful is this test going to be? can we just do this test here and now so I’m done with it? what new medicine will I be on and for how long? is the doctor really listening or just hearing what fits his idea of what might be wrong?

Blah

Blah

Blah

I don’t think anyone ever gets used to being poked and prodded like a human pin cushion.

Anyway, I guess there is not point in being scared; whatever these new symptoms are, already are so it’s just answers (hopefully) that will be new.

*i hate when the symptom goes away the night before the appointment. My right elbow seems fine tonight! Haha.

Well, wish me luck,

Blessings.

A New Perspective on Friendships~

I have posted many many times about the friends who disappear, the friends who stop being friends after illness sets in. I have cried so many tears out of loneliness. I’m sure most of you understand this well!

Recently I was given the gift of a new perspective on this topic! I’m thankful for the lesson, but oh it’s hard to admit I learned it the way I did. But true to Chronic Gypsy fashion I will tell it like it is. raw.

One of the few friends that has stuck by me through getting sick, who would drive an hour just to sit with me even if I slept through it, the friend who surprised me with gifts, the friend who listened to hours on end of symptoms and doctor visits, who never told me to “be more positive,” she suffers Migraines, migraines that in the last year had gotten significantly worse. Do you know what I did?

  1. I researched! A lot!
  2. I had a billion “try this” suggestions.
  3. I even tried the “be more positive!”

Notice the bold print, what do we as Spoonies hate? Those exact things! Yet I did them. Oh yes, it gets worse…

I went through a period of if she is so sick how can she do _________? Yes, shame on me, I went there! Oh I didn’t stop there, it still gets worse!

I got angry! I couldn’t fix her, I tried. I did everything I could, nothing worked. I suggested a billion things and she didn’t try them All. and she kept getting worse.

Without realizing what I was doing or why I had pushed her away. I couldn’t stand to see/hear her suffer, it broke my heart! She needed to try harder to be well, I didn’t want her living the isolated Spoonie life like me, I didn’t want her to hurt like I do. She had to get better and she wasn’t and I was both mad and scared.

I had become one of those disappearing friends who couldn’t handle illness. I wasn’t there for her like she was for me.

Lesson learned! Apologies made!

I do have a new perspective of friendships! This lesson has opened my eyes in so many ways. I have this to say to my remaining friends…

I know you love me!

I know seeing me go through this hard for you.

I know it makes you feel so helpless.

I know it is scary for you.

I want you to know that just you being there for me to laugh or cry, to distract me from my illness or to validate a symptom, I just need you. I don’t expect you to fix it.

I don’t expect you to make me better on bad days.

I appreciate your research and guidance, but I am going to do what my doctors tell me too.

I’m here for you too, when you want to talk, even if it’s just an ear about what you go through because of what I am going through.

There is so much more I would say! This brings me to tears to even write. All of this time I thought the friends left because they didn’t care, when in reality, they did care but just didn’t know what to do anymore. Maybe.

Anyway, this has been an interesting life lesson, and I’m glad I learned it before I lost her as my friend.