Friday, 4 August 2006

Tired, tired or tired ?

Tiredness, fatigue, whatever, is a feature of the lives of many people with chronic health problems. Today I was asked, by someone genuinely interested, and for all the right reasons, what sort of tiredness do I have, what is fatigue and what makes it different to extreme tiredness ?

We discussed feeling tired, feeling drained, feeling heavy; the tiredness from physical exertion like power-walking, swimming, completing (37 years ago) a 24 mile all night Oxfam fund-raising walk; the muscle tiredness from standing all day, gardening, hedge-clipping, ironing; sleepy tiredness and limb tiredness and tiredness from being bored. The other person described the extreme physical tiredness from building cob walls, winching in sails, lambing, the things that person has done.

None of those things, that I have done, that that person has done, are quite like my daily fatigue. My fatigue, and perhaps yours, is profound. Some days it is quietly next to me or profoundly accompanying me, other days it is sat on top of me and I cannot move without dragging it along with me. When it is exacerbated by systemic inflammation it is the weight of a cape draped from my shoulders and a skirt hung from the hips, made of lead, heavy lead, hot molten lead, leaden. When it is masked by a systemic steroid injection, for two months it is merely a pain, that does not stop me from doing too much, and it just hurts.

Synchronistically, that question to me today about my tiredness, linked with The Goldfish's post I read yesterday. Relevant now, is that if I stop to recall how to put in the link to The Goldfish's post, I will loose the thread I am currently pulling out from my brain and, lost forever, it will not be recoverable. That is why I sometimes do not do things that I can do, and have done before. I cannot do them again without going back to them to revise, or even sometimes, to re-learn them.

Many people with Systemic Lupus have 'brain fog', and those are the Lupus patients who do not have Central Nervous System Lupus. We keep detailed reminder diaries, carry Filofaxes, rely on laptops, post-it notes, lists. We write explanations for ourselves of how we did something today in case we do not know how to do it tomorrow. We have a folder with the title: My How To Do. We have visual reminders because our brains do not always retain the memory of what we have, what we know. We continue to be who we are if we were originally able, creative, intelligent, capable, because we make these extra efforts to continue to be ourselves. We consider ourselves fortunate to be able to do so.

Physical fatigue creates brain fatigue. Physical tiredness renders me unable to speak coherently. Sometimes I am in the middle of something, and know it is about to happen, so I can take time out briefly, to recover, to stop getting to that stage. Sometimes I have reached that stage but, because I live alone, I do not know I have reached that stage until I answer the phone, or the door, and the words the other speaks make no sense to me, they flow into my brain, where they do not get sorted into sentences, but remain a sense-less jumble of sounds. Or sometimes my words don't flow from my brain to my mouth, or the wrong words flow, or the words flow from the brain (I am thinking I know what I am saying) but my mouth doesn't say it as I am thinking it, or does not keep up and my speech is slurred. So, in those situations I just say: I am sorry, I am tired.

People understand; often they get tired. They can relate to my explanation. It is enough for the few minutes I am in contact with them, that they understand that. Others that are in contact with me for longer, need the longer explanation. Also, I need the longer explanation, to remind me on down days why I am like this, that it is real, that I have this reason, this excuse. This is written now, in the real time, fixed time, of a post on my blog, for those times in the future when I need something concrete and real outside of me, to tell me where I am. I can come back and re-visit, revise, where I am, what I am.

Its late, many people went to bed ages ago, why don't I go to bed and be sensible then I won't be so tired ? I go to bed late at night, I sleep late in the morning. At this late hour it is quiet, the world outside my immediate space is empty. There is no noise outside my room, my cottage. Just the owl. Just the creature in the loft or in the cavity wall having a good scratch, its elbow banging against a hard surface. You would not hear it, my Meniere's related hyper sensitive hearing does. It really is quiet. The tinnitus is subsiding. So I can think straight without outer, or inner, noises jumbling my brain. In the daytime the world is busy. The milk, the post, the farm vehicles, the birds, the neighbours, the commuters, the dog walkers; all make a noise, all increase the tinnitus white noise, many have the potential of entering my world, through my door, through my window, all take up energy, take away energy from my brain. At this late hour its just me and you via my laptop.

Two days a week the transient Lupus related brain fog gets denser with the neuro-toxic effects of the weekly drug that manages Lupus, and then I go deep; the me inside my head is negative. The world is a different place that is dark, has the potential never to get lighter, and I really ought to take notice of the dangers and dark facts that I only know, that only I know, on those two days every week, and act accordingly. I am usually too physically tired, drained, to act, so it passes.

Your drug sheet may say: do not operate machinery if affected; my memo to self says: try to take no notice, it will pass.

Additionally, any day when I am physically very tired (as opposed to averagely knackered) I am depressed in spirit, in outlook. Physical health related tiredness dampens my mood in all aspects, dampens down the jolly te-he-ness that comes naturally to me. I become older than I am, rather than my usual sense of feeling younger than I am.

When very very tired, I cannot let anything from outside, in, because I don't react to it naturally, as me. Music, television, books of words, books of pictures, friends, companions, letters, blogs; I cannot rely on reacting to them safely. Then the only thing I can safely take in is looking outside, through the window, or being outside, in the air, looking at or being in, calming nature - which is safe, consists of colours that are good for the mood; blues, greens, and which does not intrude on me, or ask anything of me. It just is. Outside in the world the inhabitants of nature ask nothing of me, they just are.

7 Comments:

Blogger Charlesdawson said...

I really think there ought to be a specific term for the kind of fatigue symptoms you experience. "Chronic fatigue" doesn't convey anything useful.

There is, as you say, the fatigue engendered by prolonged and/or violent physical activity. There is, next, the fatigue experienced by all physically impaired people, simply because we have to make extra efforts to do things, like getting up out of a chair, for instance, or cooking a meal, or even turning over in bed, which able-bodied people take for granted.

But then there's the third type, which you describe. I think the nearest you could come to conveying this to the un-initiated is to ask if they remember what it was like the first day or so getting up after a bad attack of flu. And then imagine it arriving without warning and going on and on.

I would call this malingnant fatigue, myself, by analogy with malignant hypertension.

Saturday, 5 August 2006 at 08:57:00 BST  
Blogger Sally's Life said...

Yes Charles, you have it exactly and as a medic, you have taken my description and given it a name. This is very useful.

Your second paragraph; I often have to explain that just sitting upright in an ordinary chair takes so much energy, so I will only have the energy to also do that which I enjoy best - talking - if I can recline.

Your third paragraph; I have said to my OT, if I was fit and healthy and then woke up one morning feeling like this, I would go back to bed and call the doctor. I have asked another enquirer: what is the most tired you have ever felt; and they have described a physically exhausting thing they have done and I have said - now imagine waking up every day feeling like that and never recovering.

You may be the inventor of a new medical term of malignant fatigue.
We could call it 'Dawson's Fatigue'. The Frenchman Prosper Meniere is forever remembered. Thank you.

Saturday, 5 August 2006 at 09:57:00 BST  
Blogger The Goldfish said...

After ten years, I'm not sure I find the concept of fatigue terribly useful any more. I'm not even sure I am tired all the time, since I'm so used to a certain level of fatigue. What I do talk about is cognitive dysfunction; poor concentration, no stamina, confusion, short-term memory lapses etc (this week I even forgot my own name whilst ordering a repeat prescription). If I think about it like this, I find it easier to explain to people and I find it less frustrating when others complain of tiredness.

For example, my sister has been more than usually tired during her pregnancy. And she has found this frustrating. One day, that I had spent in bed, she was complaining about it to me whilst on the motorway, on her way home from work. She had got up at seven and driven 90 minutes into work, stood in front of a classroom of teenagers all day and was now driving back whilst speaking on the phone. She mentioned that that evening she was hoping to mow the lawn before she cooked dinner. But God, was she tired!

And it is really unfair for me to find this irritating, because she was having unpleasant levels of tiredness. Just because it was nothing relative to what I experience on a daily basis, that doesn't invalidate her experience.

However, if you think about the ways in which her cognitive capacity were effected, then you talk about more objective differences; she was able to drive; she trusted her reflexes, she was able to pay attention to what was going on around her and react to it whilst talking on the phone. If I separate that stuff out from her complaint about tiredness, then it's not longer a problem. Because she's certainly not making a comparison; all she is doing is complaining about her own experience.

Does that make any sense at all? I find it easier to think and talk about the objective effects as opposed to the feeling, if you see what I mean? Sorry, this now makes far less sense than when I started writing this comment...

Saturday, 5 August 2006 at 21:36:00 BST  
Blogger Sally's Life said...

Thank you Goldfish. Everything that is said from the heart, from experience, to expand and explain what this is we live with, is valuable. Each of us has our own specialised variation, degree, scope of dysfunction, disease.

It takes a great deal of patience, of giving of one's self, to accept quietly, kindly, our relative's or friend's complaints of their tirednesses, their descriptions of tiredness that may not even register in the bottom 10 per cent on our scale of dysfunction where we regular hit the 95 per cent but not dead yet !

I see that I was writing about 'feeling' tired, explaining what I feel when I am in profound fatigue and not functioning, and those feelings are subjective, whereas to talk about cognitive dysfunction, which is factual, scientific, proveable (supposedly), measurable, is to use objective language.

The blog came from being asked what it 'felt' like, by someone significant, trustworthy who I was able to explore it with in safety, whereas I seem to spend my life explaining my symptoms factually, having to prove myself, my situation, to the professionals, under the names the professionals recognise, (even if I have to explain it to them) and the recognised phrases for Lupus are profound fatigue and cognitive dysfunction.

Someone who knows me well asked me what it FELT like. That opened a flood gate for me; rather, that pushed the river through the flood gates that, perhaps, your recent post had nudged open.

Here in this blogosphere, I have the luxury of time and also the sense of safety; I am able to say and describe how I feel. Out there, I have to explain how I don't function. Explain in words 'they' can use in their records, the recorded assessments, recording objective facts.

Sunday, 6 August 2006 at 00:12:00 BST  
Blogger spotted elephant said...

I like the idea of focusing on objective effects, and giving a name to this. I also like not being the only one who gets sick to death of hearing healthy people complain of being tired.

It would be more effective to say I was too tired to prepare dinner and so went hungry than to say I was exhausted.

Sunday, 6 August 2006 at 18:48:00 BST  
Blogger BloggingMone said...

I wouldn't have dared writing a comment on this about a week ago, because "malingnant fatigue" as Charles named it, is an experience I cannot share. But I did have an experience of tiredness last week, I would like to share. I was in Berlin with two of my colleagues and we were staying at the University's guest house. It was so loud outside all through the night that apart from dozing off an hour or two, we couldn't sleep. In four nights we only got a total number of about 12 hours of sleep. We had to work from 9.00a.m. to 6.00p.m. every day. On the third day I managed to confuse the audience by doing a double translation as I have not realized that everything had been interpreted before. On the fourth day my colleague puzzled the audience by standing there without doing anything until people started shuffling their feet.
When I came home on Friday, everything I wanted was a hot shower and a bed. Unfortunately our neighbours on that night out of all nights had a garden party, right under my bedroom window. It sounded as if they were dancing and chatting in the middle of my bedroom. At midnight every cell of my mind and body was screaming for sleep and I found myself sitting in bed crying, because I was too tired to do anything else. Now, what does that mean? It certainly does not mean that I share your and others experience of ongoing fatigue as a part of your life that does not go away. But I got a glimpse at what it may be like. It also left me very doubtful on whether I would be able to cope with extreme fatigue as a part of my life. And it also told me to be more aware about the use of the terms "tired" and "exhausted". I wouldn't say that non-disabled people are NEVER really tired and therefore shouldn't be calling themselves tired , we just seem to use the word "tired" when "fed up", "overworked" or "weary" would be more appropriate.

Monday, 7 August 2006 at 12:25:00 BST  
Blogger Sally's Life said...

Thanks for the brave comment Bloggingmone, and welcome back.

"... left me very doubtful on whether I would be able to cope with extreme fatigue as part of my life..."

That is the point about ill-health or disability related profound fatigue - you have no choice but to cope.

There is no alternative; if you don't get up from bed you don't eat and you piss in the bed. Extreme example maybe, but I have had to cope with that. Can't leave my bed. Have to leave my bed.

We have to integrate profound fatigue into our lives and adjust ourselves accordingly. My character is NOT the type to stay indoors, never get a tan, rarely socialise in large groups, not go out to work, have few friends.
My character and personality is outgoing, active, economically viable, career minded, seeing friends every day, looking after companion animals, swimming, dancing, walking, singing, gardening, maintaining the house, chopping wood, entertaining, partying, flying off for holidays, visiting relatives all over the country.

Disability has changed who we are, what we do and what we can cope with. We do not have the choice of not coping with profound fatigue.

This comment is not directed at you Bloggingmone, but your comment released my frustration with not being able to be the person I am.

Thanks.

Monday, 7 August 2006 at 12:50:00 BST  

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