Tag: fibromyalgia

Farewell 2018, Hello 2019

Bones

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It’s the last day of 2018 and I’m awake early, traumatised from my PTSD flashback last night and the subsequent nighmares.  My amazing human being had innocently put on a different show (because it was light and fun) after I had said what show I wanted, and I had spiraled into a panic attack and minor meltdown.  It was one of the first instances where I’ve spoken up and asked for the input to stop, and explained that I’m having a panic attack.

My amazing human being immediately stopped the show, grabbed my hand, and guided my other hand to my cat and stood with me until I was more settled, then provided chocolate.  Unquestioning support.

For me, 2018 has been a year of self discovery, self expression, and healing.  It has been hard, it has been upsetting, in some instances it has been straight up traumatising, but I come out the other end of 2018 a calmer, more balanced, and possibly even more confident person than I began 2018.

I must absolutely credit this back to my phenomenal friends, the closest of which have also (sadly) gone through narcissistic abuse, and who have been open and loving and who have shown me how to be open and compassionate with regards to my own mental health issues.  In one of my oldest friends I have found a role model for how to live with chronic illness, how to go through life unapologetic and dignified with disability, and how to allow yourself to be how and who you are.

In my amazing human being I have unquestioning support and consideration, and unending laughter.  He enables me in all things and throws his enthusiasm behind me, regardless of what direction I take.  He is constantly thinking of ways to make life easier and better, and reminds me that yes, I can do things the easier way, I don’t have to just suck it up and do it the hard way.

Yes, this year has been a hard one, but it has been a good one.  I am still glad to see it go, and look forward to what 2019 brings.

Pregabalin – Day Two

Bones

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My doctor has prescribed pregabalin for my fibromyalgia, at a low dose, for two months.  I waited until work was wrapped up for the hear, as side effects include dizziness and general space-cadet-ness, which wouldn’t be ideal for the last week of work.

I took my first dose of pregabalin on two nights ago.  I curled up in my favourite chair and knitted for a bit.  I found myself nodding off fairly promptly, so took myself off to bed and slept.  I woke up early.

That day I was dizzy and had visual disturbances – rather like the frame rate for my eyes wasn’t quite fast enough.  It was peculiar, to say the least, so I didn’t drive anywhere.  I felt drowsy all day and a wee bit spacey.

The second day, being today, was a lot better.  No dizziness and no frame rate peculiarities.  My pain levels have considerably decreased, but I’m not sure if that’s because I’m on holiday and so I’m pottering about more (because I don’t have to lie and rest for work), or if it’s already beginning to work.

So far it has been the least offensive drug I have ever begun to take.  There doesn’t seem to be any mental disturbances, and I don’t feel particularly spacey or dizzy anymore.  So far I’m impressed and vaguely optimistic this may work.

Workplace Bullying

Bones

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Specific words and responses in the past week have led me to understand that I am currently the target of an active bullying campaign from a colleague, and have been since I joined.

From the very beginning she made it clear through her body language, dismissive attitude, word usage and tone of voice that I am Not Welcome and she Does Not Like Me.  Which is fine, I’m quite happy to leave her be and do my own thing and not unnecessarily interact with her so she doesn’t get annoyed and I don’t get snapped at.  This is a simple solution.  I know I’m not everyone’s cuppa tea and I’m happy to leave people be.

Last week she commented in a meeting to the effect of “you’re not doing your job”, a comment she never would have made had she not been confident she would be backed up.  And, unsurprisingly, she was – three of my other colleagues jumped in with very pointed comments on the topic at hand directed solely at me, in a manner that made me feel very attacked (although I didn’t quite understand until after the fact).  She was elated after that display.  Positively beaming.  It made me realise a few things.

First, that I wasn’t going to let this slide.  Passive bullying, being an ass to me directly, not a problem.  I can just avoid that person and we’ll all go on our happy way, but this was active.  She was seeking people out and telling them I wasn’t able to do my job.  She was cultivating this belief in my incompetence among other colleagues.  No, this I will not tolerate.

Secondly, just how much the stress of bullying has affected my mental and physical health!

I’ve always had a peculiar disconnect between my mind and my body.  Prior to a few years ago, I just didn’t think, I didn’t contemplate, I didn’t look within and analyse my own thoughts, feelings, or behaviours.  I just did, and bottled it all up.  Super healthy, right?

Now I take the time to figure out what my body and mind are telling me, and everything is ringing stress bells.  My gastrointestinal tract became deeply upset.  My mind couldn’t settle.  I was restless and antsy.  My heart rate was high.  I had difficulties getting to sleep, maintaining a restful sleep, and staying asleep.  I genuinely did not think I would be this affected by bullying in the workplace, and yet here I am, my anxiety still twisting in my gut.

I’ve lodged a complaint, and I’ll pursue this.  I think I’ll let the higher ups handle it – I don’t think it will be good for my health to interact with her myself in any way, especially as I am very confident she will simply gaslight me and I will end up getting nowhere.  I’m only there for a couple more months, and if I really need to, I will leave.  Although that’d have to be pretty dire for me to leave, I often have a hard time doing what’s best for myself when it comes to work.

But I’ve got to look after my health first.

Amitriptyline – That’s a No Go From Me

Bones

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I’ve been on 10mg Amitriptyline every evening (along with 20mg fluoxetine every morning), and it has finally settled in enough for me to say, no, this is not working.

It’s one of the more difficult things to do, stop and admit to yourself that this medication that should be helping you (and oh god don’t you wish it was) actually isn’t.  I mean, it sort of is, and sort of isn’t, but the positives are outweighed by the negatives.  Then you have to go back to your doctor and say ‘this isn’t working’ and they pry for reasons why and sometimes it’s hard to put the reasons into words.

Fortunately for me, it wasn’t.  My negative side effects included, but were not limited to:

  • Tachycardia Monday (I wish it was on Tuesday because that would have sounded cooler) – where my heart rate was consistently 100-130bpm for the majority of the morning, every Monday.
  • Consistently higher heart rates across all activities.
  • Intention tremors when I’m tired.
  • Increased anxiety and depression.
  • Increased headaches and visual disturbances.

So I told my doctor and he suggested we halve my dose (I’m already on the lowest dose tablet) and re-visit in a few weeks when he’s had an opportunity to read up on what else might treat fibromyalgia.  I’m pushing fairly hard to try a different medication.

I’ve been on 5mg Amitriptyline for the last week and the change is huge.  I feel excited about things again, I’m happier, more relaxed, and generally more positive.  I don’t have tremors anymore, woohoo!  Everything’s coming up Milhouse!

Except with the lower dose of medication that was managing my pain, I’m now in more pain, which I’m not quite so keen on.  My arms, which haven’t ambiently ached (for no reason) since starting on amitrip are flaring up again.  Usually the aches are confined to my hips, thighs, and lower back.  I’m having random spots on my skin where touch there is excruciating – something as simple as a cable brushing against my arm feels like a fire brand.  Sometimes where I like to sit the sleeves of my cardigan is overly sensitive.  I haven’t been able to wear my watch because it’s been too painful.

You win some, you lose some.  At this point I’d rather this level of pain than trembling so hard I can’t even do up a button.  When I see my doctor next I’ll be pushing for a new script to try, and for a referral to the frightfully expensive (private) pain management specialist he mentioned.  It’s time to get this ball rolling faster!

The Reality of Fibromyalgia

Bones

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I’ve had a fairly packed few weeks, and I’m looking at a full schedule until … probably mid February.  My anxiety is considerably higher than normal, as there’s a lot to get done over the next few weeks.  I’m physically doing considerably more and resting less.  This has a lot of consequences for me.

First being that my fibro is flaring up.  Which, yeah, go figure.  It means random parts of my body hurt.  On Friday, the middle knuckle on my right hand hurt.  Yesterday, an old injury on my left foot started hurting (and still does).  Bits of my leg hurt, and then stop hurting at random.  My knees ache more, my right elbow started hurting … you get the picture.

Today I experienced a new symptom.  I had a shower, which was all well and good.  I was drying myself off when I felt pain running down my left arm.  I quickly turned my arm over.  It was a water droplet running down my arm.

I felt some not inconsiderable pain from a water droplet.

I briefly panicked and then bottled it up.  I didn’t have the time to panic about it, so I didn’t.  It’s only now, in the later hours, that I’m sitting down to process this new facet.

Pain from a water droplet.

I’m used to abnormal pain after an injury, or additional pain after physical exertion, but this is new.  This is normal sensory input being processed as pain.  This is something I cannot excuse away as ‘a bit rough’ or ‘a bit sharp’, it’s a water droplet.

Realistically I’ve experienced this before.  Sometimes when my amazing human rubs my head or my arm, it hurts.  I’ve had days where pillows hurt to lie on.  But I have always rationalised them away – my amazing human was being unintentionally rough, or his nails were too long, and I just had a really bad headache so I was sensitive.

This is the first experience I can’t rationalise away.  This is clear proof that I have an issue with sensory input, where either my nerves are sending the wrong signals, or my brain is interpreting the signals wrong.

Today it really hit me.  I’m still not sure what to do with this information.  I’m probably going to bury it for a while and bring it out to examine at inopportune times (such as during an exam, or when I’m trying to read).  But for now, honestly?  I’m scared.  This is scary.  And I really don’t like it.