Tag Archives: Fatigue

Creativity lost (again)

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There is a lot of advice out there about unlocking creativity, breaking down the blockers, etc., and I’ve read some, it’s not currently working. I just keep falling through the hours until there is nothing to give except sit and feel tired. I have so many creative ideas throughout the day but then they pass.

These are my pathetic excuses:

I don’t want to start anything because then I have to commit to it and I can’t deal with commitment right now. Half the time I can’t concentrate enough to make a cup of tea without stuffing it up, so I don’t know how acting out creativity would go.

I think that my work won’t come out like I visualise it, with my mind so all over the place, so I don’t start.

No energy. That no energy thing really gets in the way of a lot of things.

No time. Actually, when I do have time, like at the end of the day, I have no energy and my ideas don’t seem so good anymore, even if I wrote them down. I think it will take me a really long time. I don’t seem to make the time- to prioritise a day for example.

What I did do tonight, that is good, is I read some more children’s books. They all have lovely illustrations and that is what I have been focusing on, how different types of illustrations are featured in picture books.  All these books are created by writer/illustrators. Three completely different styles of illustration…

1. Hasel and Rose

Written and illustrated by Caroline Magerl

(Scratchy, sketchy line pictures with watercolour)

Hasel and Rose

The author with her finished art for the book.

Caroline Magerl with her finished art for the book. Click here to go to the author’s website.

2. How long is a piece of String

Illustrated by Madeleine Meyer (no words)

(Black ink drawings with lots of cross hatching and pattern, with some bright coloured ink highlights and shading)

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3. Draw me a Star

Written and illustrated by Eric Carle

(Collage of painted papers cut into shapes)

Draw me a Star

Eric Carle at work painting. Click here to go to his author page.

Eric Carle at work painting.
Click here to go to his author page.

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

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.

Mental fatigue

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Mental fatigue

There are days when my mental health seems to be slipping from my grip. These are mostly days when my body and my mind are exhausted. The roller coaster of feeling good and feeling bad of feeling capable and of feeling useless wears me down. Some days I forget that there are good days, I forget what they feel like and I dismiss the possibility of ever having one again. On weak days I envisage a life become worthless with no way to improve. On weak days I wonder who will be there for me when I cannot be there for myself?

Girl thinking in bed

Every day is different. Yesterday I felt as if I was falling victim to a virus, but I suspect it was my immune system flaring at me. I needed rest. Today I am on a rest day. I don’t feel rested yet. I still feel sick actually. I wish the day had nothing in it and I could sleep and wander and draw and read and I might feel rested. Instead, I have jobs waiting for me that I carry around like a dead weight. I don’t know why I feel like that but it is probably making my health even worse to be thinking that way. The “normal” me is passionate and inspired and an ideas person. The “tired” me dislikes any commitment or any call to do anything.

I’m still not sure what is troubling me right now, fibromyalgia, arthritis, medication, tiredness, pain, sore throat, mouth ulcers, blocked sinuses, not being able to walk properly, the thing that isn’t right in my eye, real sickness, chronic sickness, being sad, having to work? How can I keep my sanity with all these issues that never go away?

All of this madness in my mind needs calm and rest.

Meditation

Last night I ordered a book, Women Work and Autoimmune Disease. The book may help me work out how to control my health better. The problem is, every time I get my life at a good pace and my symptoms under control, something rattles it all and I am spiralling out of control again. I suspect I need to work it out for myself. Maybe I should work it all out and then write my own book. (Not like anyone ever did that before.)

Women Work and Autoimmune Disease

Crazy brain moments

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Stone lady thinking

Some days I have a crazy frustrating circular fight going on in my head and I am sick of all the to-ing and fro-ing. A lot of these thoughts aren’t even that accurate, they are somehow twisted according to my mood or how stressed I feel or how fatigued I am or how much pain I am in. It might go like this:

There’s all these things to do.

I have to do something, now!

But, it’s such a lovely day to relax.

I need to relax for my health.

And there’s nice things to do like drawing.

But I have other things I should be doing.

Oh, I just noticed something else that needs doing.

So many things are being neglected.

I don’t like the way the things look.

I don’t have time to do them all.

Because I have to rest all the time so little gets done.

I hate that I feel like lead and that my body hurts as soon as I move to do something.

I shouldn’t do the lovely things I have waiting to do like drawing and reading and writing and art.

Because of all the things I have waiting to do that have to be done.

And I’m just sitting here debating what to do.

And doing nothing.

But I must have got some things done.

Because they are done and I have moved on to new things.

I ‘d better just decide what to do and start doing it.

I know, I’ll get a cup of tea and a chocolate biscuit.

Then I’ll start something.

Brain technical difficulties

The upside downs

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Life has a habit of turning everything upside down periodically. For many people, this happens way too many times. The types of events that may turn your life upside down may be things like separation, death, illness, accident, disappointment, loss of job, and all manner of things really. These are things that make your life zag off the line of trajectory which you thought you were following.

Finding out you have an illness and that you will be ill probably for the rest of your life is obviously life changing. In fact, this illness may have been affecting your life long before you knew it existed. Looking back, big events may have, in some way, been influenced by this hidden illness and you never knew it.

For example, there are times I knew I was tired in my late twenties and thirties. I mean really tired. I felt unable to keep up with the demands of work and home and I just needed to escape. Most of the time my escape was sleep. There was one time this tired took over beyond what I could manage. I was sure I was going to come down with the flu or something. But the flu never come. The Dr didn’t look very far, he said it might be “mild depression” and “stress”. Hmmm. It might have been. But now, years later, I wonder if that was an early fatigue episode. An early warning sign of what was to come. The only thing is, after that illness, I was never the same. I felt trapped. I was flat and needed an oomph. Not long after that my world upside downed and I eventually separated from my husband of 15 yrs. As with all break ups there were a lot of elements involved, but I think illness was there and I didn’t know it. In fact I wouldn’t know it was there until about five years later.

When I found out about having fibromyalgia, my life upside downed again. It upside downed due to the illness being a reality and it upside downed because my then partner decided that would be the perfect time to end our five year relationship. Since then I have enjoyed living the single life. I actually am loving being single right now.

Some people who have partners and a chronic illness can have a lot of issues because of the illness. It is not for me to tell you because it is not my experience, but from what I am told, lack of understanding of the illness is at the heart of many of these couple problems. An illness like fibromyalgia (and also illnesses like lupus, Lyme disease, all the different arthritises, and many many others, too many to list), are pretty difficult to understand if you have the problem, so it’s even harder to understand, maybe impossible to understand, if you do not have the illness. Being a close watcher of the illness gives you some insight, but only if you attend to it and have an open mind about what an illness can do to a person. Add in the problem that no two people experience the same pattern of symptoms and progression of these illnesses and you may as well say give up on trying to understand it. In my experience, all others can really do is accept, give you space and support when needed, and be gentle with you.

So then, I have the problem of whether to seek a partner, who will then become inflicted with this roller coaster lifestyle of good/bad days and engaging/flat Lisa. Even if I was to find someone who fits my personality, I’m not sure I want to do that to anyone. I also would have to work out how to keep the happiness I have now found and integrate that with another person. I guess I have to find someone special first.

Couple hugging

Where writing and art collide (or is it collude?)

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I’m too tired to think. This applies to the whole last four days and possibly the rest of the week as well. When my mind is beaten and it can not create constructive thought or inspiration on cue, I am sure it hibernates like a bear in its winter burrow. My mind hibernates while I drive, while I work, while I eat, etc. Every now and then it wakes and roars out something interesting and worth following up on, but unless someone else picks up the idea and the work of making the idea reality, the passion is brief and the idea is lost. When my mind is like this I find I can’t write, I can’t do assignments and so far I haven’t been able to do art either. Maybe it is beginning to wake up because this blog post is going ok and it is the first personal writing I have done in many days.

The Invention of Hugo Cabret

Story and hand drawn pencil illustrations intertwine to create a unique reading experience. By Brian Selznick.

Due to my mind hibernating, I have been reading some beautiful children’s books. “Read what you want to write” the expert advice says. Except, I don’t know what I want to write and my mind can’t engage in thinking about it. So, in the absence of thinking that actually leads somewhere, I have read what I see every day and have chosen individual books that I am drawn to.  It is funny that the word drawn also refers to art and I am currently missing my ability to create art.

How ironic would it be if this book was titled Lisa Loves Art? Simple, cute illustrations encourage young readers to show their imagination in their art and persist with what they love.

How ironic would it be if this book was titled Lisa Loves Art? Simple, cute illustrations encourage young readers to show their imagination and persist with what they love. By Kelly Light.

Art and writing and literature are all mixing in my mind as the things I love. I love teaching them and looking at them and producing them. Lately I have been drawn to books that contain reference to art. There are quite a few. They will be very useful when teaching in the future. Here are three that recently came in front of my eyes and magnetically attracted my attention. These are the types of books that I love. Books with beautiful illustrations that inspire creativity and celebrate art as an endeavour. If you think this is you as well, then I encourage you to seek them out.

Gorgeous illustrations of bird parts and instructions on how to construct a bird. Creative juices flow. By Kate Samworth.

Gorgeous illustrations of bird parts and instructions on how to construct a bird. Creative juices flow. By Kate Samworth.

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