On Friendships~ again.

Don’t worry, this one is not a bash one or the other kind of post. A pity party post? Maybe. A what the hell am I supposed to do- post? Yes.

So here it is… Raw & unedited!

I suck at friendships! I really suck at everyday friendships, honestly, they exhaust me. I know it sounds horrible, but sometimes (okay most of the time) it’s easier to be alone than absorb someone else’s everyday issues (and the issues that constantly repeat themselves in someone else’s life) no matter how much I love them.

I’m very empathic and no matter how hard I try I cannot help but absorb their stuff, especially if we are everyday friends.

I suck at trying to make plans or travel for said plans. I am getting more confident about driving, but that doesn’t mean I don’t stress myself sick over it, so seriously, I don’t want to ruin what could’ve been a good time by me arriving to sick to participate. And that doesn’t even include the effort being at any sort of social gathering uses up. So you see, I’m not a good friend for this either.

Online, okay I’m not to bad here except I am horrible at responding to long IM’s, the information gets lost before I can respond! Actually the same goes for reading/commenting on other people’s posts! Yes I can post okay, I write it in notepad, edit, reorganize the thought, the copy and paste.

I really appreciate the “just checking in” posts, but I apologize for not having much to say most of the time. Again, its responses.

First of all my brain is all wonky- worse than normal the last couple of months.

Second, I’ve drastically changed what I have energy for as far as conversations. Small talk and he said-she said used to feed my drama dragons and I loved it but I just cannot handle the drain of energy anymore. Hence the reason many dynamics of current friendships are changing.

Now that I have been raw about what a crappy friend I am, I also must say that friendships are what I crave most.

It’s hard to make new friends for all of the reasons above, sometimes I just look at my dogs and say “I don’t need any friends anyway!” But then I roll through Facebook and see pictures of active/healthier friends out with friends having fun, enjoying friendships, having girls day, nails, tea, lunch whatever (i am so happy for you who gets to do this, I truly am!) but my heart shatters! That used to be me, having fun, laughing, girls day, having friends!

Then I beat myself up for being unable, then I wonder why I have to keep going through this.

Then..

Then…

Then…

It just goes round and round!

I miss the companionship of a face to face friendship!

I also miss having the energy to be the kind of friend I want to have.

(Yes I am at a disadvantage being “new” to town and not knowing anyone- but to meet people here I have to get out and — who has energy for that?)

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I love the Moon~ Moon Face, not so much

I am a lover of the moon, I am that “isn’t the moon beautiful!” every night- kind of woman! However moon face is a whole other story.

Tomorrow I up my hydrocortisone dosage from 30 to 35mgs as per doctors orders!

I know it sounds vain considering I take the steroids to stay alive, but I do not want the moon face.

I have always been self conscious of my round face! Now because my dosage is being upped even more, I expect Moon-face is in my near future.

If it makes me feel better, I will gladly accept moon face, but if I still feel like crap, if I still have messed up sleep- it is not a worthy trade off.

Anyway, just a bit of a vanity rant.

*image from Healthline on google search.

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.

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!