Tag Archives: Pain

Zombie life

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Zombie in car

Sometimes, well actually a lot lately, I feel like I’m floating through life in some semi conscious state, not really focused on anything. Dazed and confused and not able to concentrate. Like a zombie. I even just thought what if I am dead and I haven’t worked it out yet?

Can zombies drive cars and pump fuel and eat McDonalds? Maybe.

Miracle Drug Day 9

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Sick in bed

My poor body still doesn’t know whether it is sick with a particular type of sick like a virus or infection, or just the normal fibro sick, or having difficulty with new meds sick.

I can’t tolerate the pain without either 1. Taking a lot of masking medication that makes me act loopy, or 2. Sitting and resting.

Activity makes me crash, the urge to go to sleep coming over me like an unstoppable wave as soon as I sit down. Many afternoons in the last week have involved me sleeping after work, waking up with extremely poor concentration and not being able to do the administrative work at home that I need to do in order to keep up deadlines at work. The worst thing about this is that other teachers are relying on me doing my tasks in a timely manner so that their lives run easier as well.

Today I decided to stay home from work. This is a difficult decision for me every time I have to make it. Fortunately I have not had to do this many days this year. Last week on the Tuesday I was so vague and unwell for most of the day, trying to ignore my pain and rickety body while also trying to engage my students in quality learning. Today I thought I would go see my GP and see what he thinks about my current level of symptoms.

 

My GP  was impressed that we have a new diagnosis from the rheumatologist, although neither a record of that nor my results from the MRIs have arrived at my GPs office yet. He is worried that I am coming down with something as well and with my immune system at 0 he said I need to stay home and rest for a few days. He also told me to cut back on the anti inflammatories (whoops).

I am always happy for rest days, especially when their timing is most helpful. However missing work means I miss a lot of the life of the school. The goings on at work keep me inspired and motivated in daily life. We are starting to plan out next year. That is exciting and challenging. We are finalising reports. That is arduous, but engaging. I have a lot of difficulty explaining why I am having the time off, even though it is Dr directed and I need it. I work unwell way too many times, many people don’t really get that and I don’t communicate my needs very well.

Knowing I have the next couple of days off takes the pressure off me for a short while and I am sure that will help. I just have to resist the urge to try to do things in that time that are not restful. Except tonight, tonight I have some work things that have to be finished by tomorrow morning. It might be a long night.

Methotrexate

Crossing crawling

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What sort of chance do I have of never walking across a pedestrian crossing ever again? The ones at lighted intersections I can probably do, but not the unlighted ones.

People in their cars are impatient with me. I look like I should be able to walk faster, so do they think that I am just being stupid dawdling on purpose?  I don’t use any mobility aids (even though there are days I probably should). Do they see the limp and think I have a minor issue or injury, not that I am personally struggling with every step that I take? Do I look ridiculously pathetic? Is someone going to jump out of the car and assist me across the road out of desperation to try to minimise the amount of time being wasted waiting for me? Am I in danger of triggering some sort of driver rage, especially with Christmas shopping starting?

I am impatient with me. I take double the time I used to, my pace seems like a crawl and my stride is a definite limp I can’t hide of late. It hurts more the more I push myself to cross fast, even though I try to get out of there as fast as I can. My mind works 1000 times faster than my body right now.

I hate the pain. I hate every moment of those strangers’ eyes watching me. Or even worse, the car people may be people who recognise me and I don’t know they are in the car because I’m too busy trying to disappear into thin air. Being a teacher I regularly run into people who recognise me in the local shopping areas. Out of the comfort of my work environment, my physical issues may become noticed and then I would have to answer questions. I hate questions.

Therefore, I am going to avoid using pedestrian crossings at all costs from now on. Except, as I said, the ones with the lights. I will instead have to dodge around bushes and cars to find a safe crossing point where I can have time and privacy. That shouldn’t be too hard, should it?

Rachel Bello tries to guide a stranded turtle to safety, Great Falls, Virginia. REUTERS/Hyungwon Kang

Rachel Bello tries to guide a stranded turtle to safety, Great Falls, Virginia.
REUTERS/Hyungwon Kang

Solo trip to Struggletown

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Struggletown

Being an independent person is starting to feel like a problem. Being an independent person has got me used to relying on myself and used to not needing or asking anyone for help. I like being independent. Actually, it is all I know. This is a good trait, yes?

No. Because when you have a chronic illness your body makes it very difficult for you to stay independent. With an unlimited budget, you could do it. But the fact that illness leads to difficulty working means that money is not in abundance. Eventually there will be times when you will need help. With a caring and supportive spouse or family, you could do it. However, many people with chronic illnesses report that their families do not support them how they need, that their illnesses are not trusted as real or that they are spoken about behind their back and called names such as lazy.

Probably even worse is the position that single people with illnesses find themselves in. They need help but don’t know what to do about it. Probably don’t know what to ask for help with and possibly don’t even have anyone to ask.

Illness tends to drive people away. You cannot be relied on anymore, you’re always sleeping or sick or staying home to rest. You aren’t fun anymore, you stopped taking risks and staying out late and being energetic. Pain is a boring topic. A future with you started to look sad and boring and way too much hard work.

There is a cycle happening here. Before you know it you are ill, isolated, lonely and depressed. There’s no surprise then that the chronically ill account for a large percentage of suicides.

Some American stats to ponder, from invisibleillnessweek.com:

– The divorce rate among the chronically ill is over 75 percent.

– Depression is 15-20% higher for the chronically ill than for the average person.

– Physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

What does pain feel like?

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I often wonder how what I feel as pain compares to what others feel as pain.

Other people and myself use similar words to describe different types of pain, such as “a thin sharp knife piercing my hand” and “a gnawing grinding pain in my chest” so I know the pain I have is the same types of pains others have. Putting words to pain is helpful in this way, as doctors can get a sense of what could be going on according to the types of pain felt and where.

I am also getting better at categorising my own pains. Thudding pain, dull heavy ache and sparks of nerve pain are all very different in feeling and in how demanding they are of my attention.

However, the intensity of pain according to my own head’s reading of that pain is a lot harder to compare to how others interpret pain.

Pain scale

When someone else says they are in terrible pain and are at an 8, are they at 8 on my 1-10 scale of pain?

or would I call that a 6? or a 10?

Am I weak and basically a hypochondriac with all my whinging about pain?

or

Am I bearing a lot of severe pain, more than most would get up and go to work with?

or maybe somewhere in the middle?

Apparently my body perceives more pain that it should. That is part of fibromyalgia. I know that to be true because sometimes a child grabs me on the arm to gain attention and it hurts enough to make me wince and tell them not to, when it’s really an innocent action that is probably done to other teachers without this reaction. I bruise easily too, so I see the physical sign of that child’s grab as well.

Today the pain was bad, especially in my legs and hands. I think it really was bad and I perceived it as even badder. Double whammy. Maybe some of the worse pain I’ve had while at work and walking around. Like always, I didn’t explain it to anyone and I didn’t go home. I started walking more like a hip swinging waddling duck this evening. Feeling like I couldn’t cover it up started getting me down and made me feel small and unimportant.

The worst part of this is, the pain in my legs is becoming unbearable and I have no choice but to push through it and try to cover it up all over again tomorrow.

Hope is what gets me through. Hope that my current tests are going to show something. Hope that my Dr tells me something I can bear and hope he can give me some medication that helps. One thing is for certain, after tomorrow I have 5 days to recover and work all this diagnosis stuff out before I have to work again.

fibro and pain perception

What does pain look like?

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When in pain, I may:

-look ok

-dress well

-participate like normal

-say relevant things

-sound intelligent

-have good ideas

-provide constructive feedback

-do my job

-tell a joke

-help out others

-take on responsibilities

-look active

-refuse help

Pain man

When in pain, I may also:

-be worried inside

-be focused on just getting through

-feel overwhelmed

-take time away

-choose an easier way

-conserve energy

-simplify tasks

-sit down a while

-walk slowly or shuffle

-breathe heavily

-ask for assistance

-lose my words

-lose concentration

I can’t tell you how to read it, you just have to be observant and aware that pain looks like many things. I would hold up a flashing sign for you but I couldn’t keep my arms above my head for even half a minute.

Banana

Today’s summary of living (and working) with fibro

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Energy gone

The issues that presented themselves today are thus:

– I woke and got up easy enough at 6am but then crashed again at 7am after a full bowl of sugary breakfast

– My body wanted to sleep, my boss needed me to work

– I had too much stuff in my car to carry into work, especially heavy things and it took 3 trips with help

– I had to ask people (including children) to do things for me that I should have done myself

– I needed to do two or even three roles all at once (and I wasn’t doing well at any one of them)

– I was doing something for the first time which meant I didn’t know how to organise or run it properly

– Everything took longer than I thought it would

– Children acted like children (easily forgiven due to contrasting positives below)

– My body wanted to rest all the time

– I ended the day with an unfinished job that should have been finished

– I had a serious conversation with my boss, but not about any of the above mentioned issues (surprise, surprise, they had all been forgotten at 5.00 except the last one)

– I didn’t have the energy to do any jobs after work except go to the cheesecake shop

Fatigue

The positives that presented themselves today are thus:

– I survived another workday

– Teaching is fun

– Laughing while working happens regularly on Fridays

– Children with manners

– Children who are helpful

– Children who show appreciation

– Children who verbalise their positive feelings and growth

– The gift of a yummy sticky date pudding with sauce that filled me with sugar at recess time

– Colleagues who are flexible

– Adults who are compassionate

– Adults who are helpful

– Adults who give good conversation

– A boss who listens

– I never took any extra meds the whole day

– A cup of tea and a piece of chocolate chip cheesecake after work

– I got to sit on my couch again and watch an episode of Silent Witness (it’s been a few days, too busy)

– My dog came in and licked my toe

– Interesting conversation with my son

– My son made a simple dinner

– My bed is a warm and comfy nest

Tea mugChoc chip cheesecake