I haven’t had any alcohol at all in weeks. I didn’t eat the bread or the fries that came with last night’s burger. I’m hydrated.
This is just my fibromyalgia being a complete jerk.
By the time I get to work, I will have drawn on every acting skill I have— and that’s quite a few— to present as ‘normal’. I will do my job with absolute professionalism: my students will never know how dreadful My body feels.
After work, I will complete the errands on my to-do list. Those things don’t go away because I feel rotten.
Only when I come home again can I give in to the pain, the sluggishness, and the desire to just go to bed and moan a bit.
But they’re right. I don’t “look sick”. That’s because I am 100% accomplished at making it look like I’m not.
Because the weekend was difficult, I stayed home from work on Monday, which was the third day after the procedure. I returned to school on Tuesday, and after spending most of the day on my feet, I was absolutely exhausted by the end of it. An early dinner and spending the evening lying down was a good strategy, as it gave relief to both my lower back and everything else that was hurting.
The injection site was progressively less tender as the week wore on, so was able to lie down and sleep on my back. As the steroids started to do their thing, I began to experience a lot less sciatic pain. I continued to have the consistent pain related to my fibromyalgia, but at least my butt and legs were no longer on fire.
That I began to see improvement on Monday and Tuesday was right on schedule for the time frame the doctor gave me – the injections would start working in 2-3 days and build up effect over the next couple of weeks. So far so good. Now, we wait to see how long that lasts.
The ESI hasn’t made any difference to my lower back pain – that’s not what the treatment was meant to do – but having the sciatic pain diminished makes a huge difference. I know how to manage my lower back and fibromyalgia pain. I can lie down comfortably for rest and sleep – and what a blessing that is!
The one-week verdict is positive. Despite the initial pain and discomfort, the procedure appears to have done what it was intended to do. If the sciatic pain returns, I’ll definitely have the treatment again.
Epidural Spinal Injection: One Week Later #spinalhealth #BackPain
I wrote yesterday about waiting to receive a CT guided epidural spinal injection to treat the constant lower lumbar and sciatic pain I have been suffering due to further degeneration of the disks on my spine.
I am sincerely touched and thankful for every message of support and encouragement that I have received since publishing that post.
In the light of the fact that there are some good medical sites available but relatively few “this is what it was like for me” posts to be found, this post is intended to address that imbalance.
When I got to the treatment room, I was provided a hospital gown and asked to change. I was able to leave my underwear on, so I wasn’t completely exposed.
I was then invited to lie face down/on my stomach on the Ct scanner table. The nurse and radiologist helped me to get as comfortable as I could, reminding me that I wouldn’t be able to move during the scans and injections.
Once I was settled, they did some test scans to give the doctor initial images to work with.
When the doctor came in and introductions were done, he proceeded to wash my lower back with iodine and prepare the injection site.
That was all completely fine until we got to the initial local anaesthetics. Knowing I couldn’t move, I gritted my teeth and made some indiscriminate grungy noises that communicated more than “ouch”.
Then came the insertion, at a precise location in my lower back, of the needle and cannula for the delivery of the rest of the injections.
“Just a scratch now,” said the doctor.
In response, I laid very still but made more ugly noises.
“How is that?” he asked me.
Showing significant restraint, I responded with “I’m not sure what scratches you, but it’s very different than anything that usually scratches me.”
He didn’t say anything, but the nurse and radiologist laughed at that, which I found rather satisfying: I may be lying prone and vulnerable while a very clever person with a tendency toward understatement sticks sharp, pointy things into my spine, but I’m still hilarious.
The radiologist scanned my back again to make sure the needle and cannula were in the right place, and the doctor proceeded to administer the prescribed anaesthetic and steroids.
In the course of the procedure, counting anaesthetics and steroids, the doctor made multiple injections . It wasn’t unbearable but it definitely wasn’t painless. I wouldn’t have wanted it to happen without the local anaesthetics, but I could still feel the injections.
After the procedure, I had to lie down with my upper body elevated for about 90 minutes before being declared able to go home.
The advice given to me before being allowed to leave was as follows:
Do not lie flat for 12 hours as nobody wants the anaesthetic heading north instead of south, which could cause significant complications.
When the local anaesthetics wear off, I would probably not feel both my original pain and some pain around the injection site. .
The injection usually takes 2-3 days to start taking effect. Full effect is generally reached after 10 days to 2weeks.
Rest for a couple of days to give things the best chance of healing.
The injection deals with the symptoms, not the actual degeneration in my back. I will still have the same limitations as before, but hopefully with a lot less pain.
I came home feeling quite tender and a bit jelly-legs, which I am told is normal.
I spent the afternoon and evening in my recliner with my feet up, changing the angle of the chair every now and then. I made sure I drank plenty of water, and that I got up regularly for necessary short walks.
I have experienced an increase in my fibromyalgia pain — which is a different kind of pain altogether from my back and sciatic pain, so it is easily distinguishable. Such pain flares are totally standard whenever my body experience stress or trauma. It’s fair to say that’s not helpful in the sleep department m, either.
Twelve hours later, the injection site is fairly painful , so lying on my back and trying to sleep isn’t much of an option right now. Some bruising is coming out, but I haven’t had any bleeding from the injection site. There is no significant swelling, redness or heat in the area, so I am assuming this is just par for the course and not anything I need to follow up.
It was a great relief to get into bed and lie down, albeit with an extra pillow, but even with my usual pain medication, sleep seems unlikely at this point. Not only am I a rubbish sleeper at the best of times, I have to lie on my back to sleep — I can’t ever sleep on my side or stomach because it’s just too uncomfortable for my back. So, 2.43am seemed like an opportune time to write an update post.
I am really hoping that I do see some improvement over the next couple of days, and that some consistent relief from pain is imminent,
I wrote this poem a while ago, but it seems so relevant at this point of 2020. Every time my Christmas fairy lights flick on lately, I think of this poem.
It’s the time of year when people want me to attend parties and end of year gatherings for work or other groups. They want me to sparkle, but I feel as though I am still so tangled and frayed and broken, I just can’t.
Yet again, I find myself ‘faking normal’ and smiling and nodding while wishing I could go home and go to bed instead. It’s a well-practised skill that, quite honestly, I wish I had never had to learn in the first place.
Hence my choice of new Christmas decoration, hung lovingly on my tree in honour of the mess that 2020 has been.
Just like a bundle of fairy lights, stowed carelessly,
I am a mess of entangled emotions
A jumbled catastrophe, knotted and messy,
Some parts are missing, some coloured glass broken;
I, too, suffer from chronic, invisible illnesses.
I have fibromyalgia. I have a permanent back injury. I have depression and anxiety, and I work hard to keep those under control. I strive to take good care of myself, and to manage my conditions. I avoid aggravating them. I also make every possible effort to stay positive and to do the things in life that I enjoy doing.
The fact is, though, no matter what good care I take care of myself or how positive and proactive I am, I cannot heal or cast off my invisible disabilities.
The debilitation is real.
The exhaustion is real.
The misconceptions are real.
And the judgement? Many people would not be willing to believe how real, and how consistent, and how very, very toxic that is.
The critics are only right about one thing: I don’t look sick.
That’s because I’ve been faking being well for years.
This year Invisible Disability Awareness Week falls on October 18th to 24th.
According to the Invisible Disabilities Association, the term invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunction, brain injuries, learning differences, mental health disorders, as well as hearing and visual impairments. They are not always obvious to the onlooker, but can sometimes or always limit daily activities range from mild challenges to severe limitations and vary from person to person
Because Invisible Disabilities are not visible to the eye it can cause issues. Some of these issues are judgments when we use disabled parking or disabled bathroom stalls and others feel the need to make an issue out of it… because we do not Look disabled.
1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) have a severe disability, while only…
Uhtcare translates to ‘dawn care’ and relates to the anxiety of lying in bed worrying about the coming day before it has even really started. It comes from the OE words uht meaning before dawn and cearu/caru meaning anxiety.
It wasn’t just the beauty of the word that struck me, but also the timeliness of hearing it today. Completely forwallowed after a night of very little sleep courtesy of painsomnia, I could totally relate to that feeling! I was lying in bed before dawn this morning wondering if it were at all possible for me to actually make it to work today. I thought about the lessons I wanted to teach, and how much effort it always takes to ensure that a substitute teacher has everything they need to deliver my lessons effectively.I also felt incredibly guilty about the fact that we have only just returned to face to face teaching, and there I was thinking about staying home.
Still, I knew I wouldn’t be a safe driver today, and I also knew there was very little likelihood of me teaching anything effectively at all.
So, I got up at 5.45 am and made sure all my lessons, material and extra notes for my replacement for the day were loaded in the school’s system and ready to go.
Given that we don’t really have an adequate alternative for such a useful and expressive word in today’s English, It is a shame that this word has fallen out of use. Maybe it’s time to bring it back.
Uhtcare: lying awake before dawn, worrying about the day. Anglo-Saxon/Old English #English #words #blogpost
It’s been a rough week, both emotionally and physically. Sleep has been patchy, which isn’t unusual for me, and my back pain has been relentless.
Naturally, my fibromyalgia decided to join the pain party with some extra bass beats and neon flares of its own.
Yesterday I chose to work through it. I’m a teacher working from home and my students are depending on me. It’s not that easy for substitute teachers to step into a remote learning classroom and make things happen the way I want them to. And, you know, I didn’t have to drive to school, which helps when you wake up in crushing pain. My classes were great, and spending ninety minutes with Genghis Khan in my Year 8 History class was a good distraction.
When my classes finished, I had to go to town to pick up my much needed new glasses, I’ve been struggling with eye fatigue while doing so much remote teaching, and it’s fair to say that the curriculum planning and lesson preparation don’t stop just because we’re working off campus. It was a 45 minute drive, but I just went there, got my glasses, and came home. I am not interested in shopping or spending any more time around people than I need to right now.
When I got home, I rested. Dinner was easy – the soup was already made, and just waiting for us to enjoy it with a spinach and feta bread twist.
I really hoped the evening of rest would be enough to make the pain flare back off.
So, by necessity, this weekend has to be a quiet one.
My new glasses are great, but I’m not going to be spending much time on screen. I’d love to read a book, but my hands hurt too much to hold one for long.
So, I will do what needs doing, and that’s it. I have a couple of new podcasts to road test, and then I’m going to indulge in an audiobook. I’ve got my recliner, my quilt, my cat, and the sound of rain falling outside.
Choosing my content is important for my mental and emotional wellbeing. I’m taking care to exclude anything negative, so I’m avoiding the news and social media. Throughout the whole Covid-19 pandemic and working from home experience, I have found that to be a good strategy for keeping my mental and physical spaces positive and healthy.
I’ve also got my pain medications handy in the drawer just beside me, because those things are my friends. It’s all well and good to be idealistic about managing pain and not relying on drugs, but on flare-up days, there is absolutely zero chance of that happening. A girl has to do what a girl has to do.
Today’s professional development day at school focused on Positive Education and how we can help our students and our communities to flourish.
One of the aspects I found most thought-provoking was the discussion about positive or comfortable emotions and negative or uncomfortable emotions. It was particularly relevant to many of the things I have been experiencing and observing about life in recent weeks, and I want to share my observations and reflections on those things with you here.
Before I go any further, though, I want to make it absolutely clear that I am not a medical or psychological expert or professional. I am, however, a high school teacher of 30 years’ experience, so I have had time and opportunity to make some observations about the things that happen in life and how we deal with them.
More personally, as someone who experiences chronic physical issues and mental health challenges, and who has experienced many conflicting emotions recently due to profound personal loss, I’m confident I know at least a little bit about dealing with adversity, and I’ve learned a few things about the importance of balancing negative emotions with positive ones.
Both positive and negative emotions can be powerfully motivating. Fear of failure or embarrassment is as strong, or stronger, in some people as desire for success is in others.
Negative or uncomfortable emotions can motivate and fuel positive outcomes such as creativity, empathy, and relationship building.
Positive and negative emotions can actually be highly effective ‘companion emotions‘. I don’t expect that this is a scientific term at all, but it seems to me a useful term that describes how contrasting emotions experienced at the same time can provide some healthy balance and perspective.
I can testify from the past few weeks that gratitude can moderate grief, and enjoying a few quiet moments in the beauty of nature can transform abject misery into much gentler sadness.
In different contexts, fear can be a healthy addition to awe or wonder – think of a child at the zoo, for example, for whom interest and desire to engage with the animals should always be balanced with both respect and a little fear or mistrust, so that the child and the animals all remain safe. In yet another situation, a little anxiety or nervousness can actually heighten deliberate preparation and performance if it is paired with intentional and thoughtful preparation, because it can stop one from making rushed or careless errors, or from taking success for granted.
Life is not about always avoiding the feelings that make us uncomfortable or sad. Hoping to do so isn’t realistic at all, given that there are many situations that we can neither actually control or entirely avoid.
Instead, it’s crucial that each of us learns to manage those negative or uncomfortable feelings and use the situations in which we encounter them to develop and consolidate our personal strengths and resilience. Learning to look for the positives in life and choosing to find a balance for the negative experiences or emotions we encounter is how we grow and move forward in life.
“Whether dealing with a major lifeshattering event or a small bump in the road, we can use gratitude to help boost our happiness and change our outlook. While gratitude won’t change our circumstances, experts say gratitude can change how we feel about them.”
That’s certainly what I’m seeking to do while working through my grief. It’s okay to take the time to mourn my losses, but I can’t afford to unpack and live there. Finding a constructive way through my pain will enable me to heal, and come out stronger at the other end.
In being honest about how I feel and what I’m thinking in my posts on this blog, my hope is that my words will help and encourage someone else get through their personal challenges, whatever they are, and to deal with both their circumstances and their feelings.
I have no doubt that knowing we are not the only ones going through grief or pain or whatever trial it is that is burdening us actually helps us to start to heal. That’s why empathy and compassion are so powerful. That’s why the support and love of family and friends is what we yearn for and seek out when things are hard.
Tonight, as I reflected on these ideas and considered the fact that I had no evidence for my inexpert assertions, I did find a number of articles that show my conclusions are consistent with current science and research surrounding emotional and mental health.
One of my most consistent problems with sleeplessness is that I can be totally exhausted, but still unable to actually drop off to sleep.
That’s mostly because of my fibromyalgia, but it is complicated by back pain on those nights when my pain relief medication fails to cut the mustard, as it sometimes does.
Because I know from past experience that prescription sleeping medication causes my whole system to lag, and because of the strong pain killers I need to take for my back as well as my fibro, I feel very strongly about not having those other drugs in my regime.
So,I recently visited my friendly local alternative health practitioner and asked, “What can you suggest to help me sleep?”
She suggested Vetiver Oil, diluted in fractionated coconut oil. The instructions say to apply it under both big toes and to the wrists, to inhale deeply on going to…