Tag: chronic pain

I am doing good enough

Bones

green-chameleon-21532-unsplash (1)

I find this notion of “I am doing good enough” incredibly difficult to define and accept.  As someone who has had chronic fatigue and chronic pain for over half her life, I don’t know what it’s like to not have it.  So, when I look at everyone else zooming around, doing so much, having all this energy, I think to myself how do they do that? why can’t I?  I still can’t tell myself I have a chronic illness that reduces my ability to do everything.  Not I have a chronic illness that stops me from doing things, because I am as stubborn as a mule and will chop my own nose off to spite my face, and if someone, even myself, tells me I cannot do a thing, damnit I will do the thing.

I still can’t tell myself it’s okay, I am doing as much as I can, and I am still doing well.  This is because I am comparing my achievements to able-bodied people.  Not only am I comparing my achievements to able-bodied people, but I am in a course where my achievements are compared to able-bodied people.

I am in one of the most difficult and gruelling degrees in the world, one that is hard for even able bodied people to undertake.  I am allowed to be doing not as well as them.

But I don’t see that.  I don’t think that.  I’ve gone my entire life thinking, and being told, that I’m normal, that I’m just lazy, that I just need to try harder, work harder, do more.  It’s a mentality I’m struggling to shift.

I suspect it’s a mentality many people with chronic illnesses and/or disabilities have difficulty with.

Sometimes I manage to remind myself.  Sometimes I even manage to feel it in my heart, instead of just in my head, but that goes away with so much as a stiff breeze or an assignment.  I try to keep up with my more able-bodied class-mates.  Sometimes I succeed.  Sometimes I struggle.

But at the end of the day, I am passing.  I would like to be getting ‘average’ marks, and each time I think that, I tell myself I am doing good enough.

Tegretol – Day 4

Bones

anastasiia-ostapovych-1627028-unsplash

Whoa, I have been through such a variety of side effects with Tegretol, almost a new one each day!

The first day was fine, just a bit of dizziness and loss of balance, nothing unusual.

Day two was worse, I was high and euphoric and so intensely itchy.  I was very careful not to itch anything and to only rub the areas that were itchy, but it drove me mildly insane.  The only benefit was, well … I was high.  So it bothered me, but not that much.

The itchiness began on my neck and shoulders and spread down my arms.  I couldn’t wear anything on my arms, because it went beyond itching into pain.  My legs itched, my back itched, my waist itched, even my breasts, and under them, itched!

When I lay down to nap that night, I noticed sharp stabbing pains up my arms and legs.  It wasn’t overly bad, more like the sensation of a decent sized needle, only in a larger area.  I still fell asleep.  Boy does the Tegretol help with sleep!

Day three I was high as a fucking kite, I was euphoric and joyous and I could have sat and watched the tree outside move in the wind all day.  I was dizzy, had difficulty focusing my eyes, and my balance was gone.  It was only through intense strength of will that I could walk straight.

Day four I’m still pretty high and euphoric and my balance is still out of it.  My tinnitus is louder.  My hearing is hypersensitive and I’m more reactive to sounds.  My skin is hypersensitive to texture, and even my usually comfortable clothing is a bit too much.  It would be a problem if I weren’t so chill and happy about everything.

Now one very important thing of note, if anyone is reading this blog specifically for the side effects I have been experiencing, Tegretol can induce some very serious and potentially fatal skin reactions.  If you, or someone you know who is taking Tegretol, are experiencing any itching, rashes, blisters (this includes in your mouth, on your tongue, or on your lips), or skin discolouration, THIS IS A MEDICAL EMERGENCY, PLEASE SEEK MEDICAL TREATMENT IMMEDIATELY.  These are symptoms that your skin is possibly going to begin to necrose.

I and my amazing human are monitoring me very closely for any rashes or skin discolouration in light of my itching.  Hopefully my skin decides to stay alive and in one piece!

Setbacks

Bones

nathan-anderson-110509-unsplash

Sometimes things keep piling up and all you want is a break.

It’s been one of those months.

One of my beloved animals became very ill.  We spent a lot of time going to and from the emergency after hours.  She was admitted for a few days.  Fortunately she is now well on her way to recovery and back to shouting at me through the door as soon as my alarm goes off (“FEED ME, FEED ME HUMAN”).

Then my face started to hurt.  Just one side, around the temple, spreading to my zygomatic arch and down my jaw.  I went to the doctor, who discovered a red tympanic membrane (ear drum), so put me on antibiotics and NSAIDs with a recheck in 48 hours if the pain hadn’t gone away.

You guessed it, the pain hadn’t gone away.

Revisited and now I’m being treated for shingles (chicken pox take two) and trigeminal neuralgia.

Unfortunately I suspect it’s likely to be trigeminal neuralgia.  The tympanic membrane is looking much better.  I have no rash or blistering associated with shingles, and the pain is progressing from a tooth ache to stabby stabby.

I’d been stable on my new bunch of meds for quite some time, and I was quite liking it.  I’m not entirely pleased with this new spanner in the works, or the new medication (which makes me really sleepy).  But it is what it is, and I’m just going to have to live with it.

Accepting Limitations

Bones

clint-mckoy-569175-unsplash

I’ve been feeling pretty darned good these last couple of weeks.

I’ve had more energy.  I’ve had more cheer.  I’ve been jogging (gasp) – very slowly and only for a very short amount of time.  I’ve been generally doing more.  The pain has been at a manageable level – never completely gone, but gone enough that a mild to moderate value distraction is enough to put it out of my mind.

Yesterday morning we had a start time of 7.00am.  I was up at 5 so I could get everything ready and be there by 6.45am.  It was early and I was stiff and sore already – not good considering I would be in a stressful situation and on my feet and moving constantly for the next 3 hours.

It was hard work – there was a lot going on, mostly things went well but we had a few panics, and I was well occupied.  I lasted until about 9.30 when the fatigue hit, and by the time we were wrapping it up at 10 I was in a lot of pain and just absolutely glazed.  We cleaned up and left for our lecture from 10.30am to 12.00pm, which I am fairly sure I slept through with my eyes open.  We had our one hour lunch break, and then were back in from 1-3.

By the time I got home at 4.30 I was barely capable of seeing straight.  I slept like the dead last night.

Today I’m still exhausted and in pain.  I’ve spent most of the morning lying down with my legs up on the back of the couch, which seems to be the most comfortable position for me when I’m in pain.

This has been a reminder that I have limitations, and my limitations are a lot closer than normal people’s limitations.  This has been a reminder that I have a chronic debilitating condition that causes fatigue and pain when I overreach myself.

This has also been a reminder that I need to communicate this to my team and the teaching staff more promptly so that I am still able to do what I need to do, but I don’t get to point of burnout like I did yesterday.

I still haven’t quite accepted that I can’t do everything other people do.  I still need to be reminded by my dear friend that I can’t just build a cabin on wheels in a week or two (that’s another story).  But I’m learning, and with each reminder I learn more.

Double the Pregabalin

Bones

oscar-sutton-719939-unsplash

I started taking pregabalin on the evening of my last day of work last year.  I did this specifically because we had a very busy period in the lead up to Christmas, and I did not want to be in any kind of vaguely altered state during this mad rush.

As it turns out, it was a good idea, as I experienced some fairly hefty dizziness during my first few days on pregabalin.  I was on the lowest therapeutic dose, 75mg twice daily.  My doctor advised that we had room to quadruple my dose, depending on how I responded, and we were

The week before last I had my first week of work experience, and so my first week of doing stuff, while on pregabalin.  75mg twice daily did not quite cut the mustard, and I found myself in quite a bit of pain by day two.  I also found myself with absolutely no energy by the end of each day, making it home as a zombie and crawling onto the couch to put my feet up.

Last weekend I doubled my dose.  This time the first couple of days involved some decent dizziness – nowhere near as dizzy as starting pregabalin, but definitely bad enough that I wasn’t keen to drive, but by the third day I was able to get around confidently.

It was immediately apparent that I had an increase in energy levels.  I have been able to do more during my days without exhaustion setting in.  On Thursday, I was up and moving / working / cleaning from 7am until 9.30pm, and while I was exhausted on Friday, I was no where near as achy and dead as I normally would have been.

I also have a much greater sense of peace and contentment.  Fluoxetine has worked very well for taking the edge of my anxiety and depression.  My resting heart rate gleefully sat at around 80-90, while my standing up and moving around heart rate would range from 95-115.  My heart rate, even lying down, would very rarely dip below 80.  My sleeping heart rate would be 50-60.  For me, these are pretty good values.  Before this I would usually have a resting heart rate somewhere in the 90s.

On amitrip (with fluoxetine), I’d have similar values, except for Tachycardia Monday, where my heart rate would consistently be over 100 (sometimes as high as 125) until about midday, and then it would go back to normal.

On 75mg twice daily pregabalin (with fluoxetine), I had fairly similar values as to fluoxetine only.  On 150mg twice daily pregabalin, my heart rate very rarely goes above 100 (even when I’m standing up and moving around) and typically sits around the 70s when I’m sitting and the 90s when I’m moving.  Sometimes it even goes as low as the 60s when I’m lying around!  Since beginning to wear my Apple Watch (specifically for this reason) almost a year ago, I have not recorded values as good as this.

So not only is there a clear physiological effect of lowering my heart rate (I suspect by some cool actions on my central nervous system), it also has the effect of relaxing me mentally, and giving me a sense of calm, contentment, and relaxed energy I have only really experienced when on a really good holiday.

I am hopeful that this continues for the long term and it’s not just my brain getting used to the increased amount of pregabalin.  If it does, I may have my life back!