Background
Method
Design
Sample
Procedure
Data analysis
Meaning unit | Condensed meaning unit | Code |
---|---|---|
It’s a bit like a prolonged period of lethargy, which one has after flu… it seemingly wasn’t a disease. | Condition perceived as a common flu | Tiredness |
I collapsed very quickly. I think my working hours were reduced to one hour every 14 days. | Suddenly becoming severely fatigued | Disability onset |
[My] reaction to [exertions] is excessive. | Exercise provokes symptom flare-up | Increased disability after exercise |
Category | Disability | |
---|---|---|
Sub-category | Cognitive impairments | |
Codes | • A brain out of order • Brain filled with cotton • Memory loss • Short-term memory • Recall difficulties • Reading difficulties • Reduced intellectual capacity • Concentration difficulties • Inability/reduced ability to think | • Beyond time • Disorientation • Word-finding difficulties • Difficulties in constructing lines of thoughts • Fluctuating cognitive ability/stamina • Easy cognitive fatigability • Lack of cognitive stamina |
Category | Illness trajectory | ||||
---|---|---|---|---|---|
Sub-categories | Trajectory phases | ||||
Prodromal | Downward | Turning | Upward | Chronic | |
Category | |||||
Functional ability | “Only fourteen days after I got Giardia… I was knocked out” | “If I walked a short distance, I needed several stops” | “I gradually got worse until… bedbound” | “I have gradually started to become better” | “Now it is fifty-fifty for me, working 50%… 50% welfare benefits” |
Trustworthiness
Ethical consideration
Results
The five phases of the illness trajectory
Phase 1: experiences of the prodromal phase and the transition into PIFS
[P]ain in the joints, headache, muscles and stomach…whole body is aching. A terrible foul-smelling stool… bloating… farting and burping all the time… 24 hours for one year (P10); I couldn’t tolerate eating anything. The kilos vanished (P7).
You didn’t have it day in and day out. These parasites lay eggs inside us, so they have this cycle… was healthy for five days and thought it had passed, but after five, four, three days, another wave [of diarrhoea and stomach cramps] occurred… became increasingly tired (P2).
[It took a] long [time] before [blood and stool] samples were taken… long time before I got medication (P1); I had Giardia in 2004, September-October, and I had three courses [of antibiotics] and completed the treatment in January 2005 (P13).
[O]nly 14 days after I got the Giardia [October 2004]… [I was] knocked down almost immediately (P15); [It] just happened insidiously. In June 2006 I threw in the towel (P18); [It] started as energy [failure]… worst period in February 2007 (P17).
PIFS and [giardiasis] stomach, the one amplifies the other. If I feel ill, the stomach upset gets worse. If I overexert myself, then the whole system gets [worse]. It’s a little bit difficult to distinguish Giardia [from PIFS]… there is a correlation… it becomes a vicious circle (P1).
Phase 2: experiences of the downward phase of PIFS
It’s dramatic to go from being healthy to being like this (P23); Never, ever experienced anything like this (P18).
At that time I had steadily growing symptoms (P23); [I] started to get pain everywhere (P10); I've lost my potency (P6).
I gradually got worse until I just collapsed, bedridden. In January 2006 I had the final collapse… completely finished, exhausted, sick (P23); If I walked a short distance, I needed several stops (P16); [I had] very poor capacity (P26).
[I] became disoriented and unable to collect my thoughts and concentrate [2005]… a layer is covering the head and the body and you notice that the brain actually doesn’t work as it used to… We’ve lived in our bodies for many years, so we know how things should be (P23).
Mom is sick, Mom is sick and she is sick all the time. It affects you emotionally… no desire to be a bad mother… I thought I was going to die, perish at a time when I was very ill (P10).
When you don’t receive information, when things are wrong, you become afraid: ‘Am I making mistakes? Am I taking a wrong step? Should I do this? Should I do that? (P11).
[S]ymptoms appeared… didn’t tolerate noise, light, no sensory input at all (P9); There is a great deal of foods I can’t tolerate (P13); I started to get pain in my eyes (P10); My body started to drag somewhat to the side (P1).
I’m unable to control [my body] (P1); I was very good at pushing myself. I can see that in retrospect (P9); I worked first 100%, then 50%, then, I crashed against the wall, quite simply (P4).
To see the GP to be granted a longer sick leave was so emotionally demanding that I couldn’t get myself to do it… pushed me back to work 100% from January until October. In October I was granted sick leave again, worked 80 and 20% sick leave… after a while I realised that I didn’t have the capacity to do that… reduced to 50% work and 50% sick leave, then 40% work and 60% sick leave. If I push myself a little more than I can tolerate, I collapse. Late summer [2007] I worked 40%, in August I had 100% sick leave… I haven’t been working since February 2008 (P7).
I submitted the application for rehabilitation benefits. Finally, I received a decision after a good deal of fuss. The payments were supposed to happen every month, but they didn’t. Yes, it was a full-blown financial crisis (P1).
I fell asleep on duty and woke up several hours later (P18); I could sleep with 30 people around me (P19); I slept for five months (P26).
Phase 3: experiences of the turning phase of PIFS – the worst phase
My spouse had to wash my hair, give me a bath, dry me off and put me to bed (P8); I stayed a long time with Mom and Dad… got my meals served to me (P16).
I spent all of 2005 in bed. I couldn’t really take care of myself… stayed with my sister so I could survive. At your worst you need help with everything… just the opportunity to exist, because you’re unable to take care of yourself. My mother sat by my side and monitored me (P11).
Most of the time I was lying on the couch (P9); If I went up a flight of stairs, the muscles stopped working (P23); [E]mptying the dishwasher could take an hour… breaks in between… I dreaded to start something… such as making dinner, only got halfway through dinner, then I had to lie down and rest (P9); I fainted in the shower, without warning (P4).
[I] just sat in a chair… stared into space (P26); If I received a message, nothing happened inside my brain, couldn’t even think. I don’t have any recollection of 2005 (P11); I couldn’t read Donald Duck (P16); [M]y head… nothing in there but a heap of cotton. It’s empty (P22).
Time’s passing. If it is one hour or seven hours… don’t notice (P15); I felt it was like a coma… the concept of time disappeared completely (P19).
From the time I was affected with Giardia, I think I almost haven’t tasted alcohol. If I had a beer, I became exhausted and fatigued. So I stopped completely (P16); [I] couldn’t even tolerate sound or music (P26); I put on my sunglasses which really are covering and shutting out the light, and I am putting my cap on if I’m going to leave the house (P21).
I staggered in the bathroom, didn’t have balance… leaned myself towards the wall… unable to walk a straight line. [A]lmost double vision (P23); Unsteady gait… veered a little to one side… the vision was weird, in relation to the midline (P1). [P]ain in the joints… pain everywhere, excruciating pain, migrating pain (P10).
From the autumn of 2005 until spring of 2006 I did not study [at all] (P16); I never actually got better… just a little compared with the worst period… did not even think about [resuming my studies] (P23); February 2007 I took sick leave from work for three months (P17).
The fatigue has an all-encompassing consequence for absolutely everything. I just disappeared from everyone (P23); I’ve been at home half a year… haven’t seen anyone… very little contact… not even talks on the telephone (P8).
You don’t feel like a sexy lady when you just burp and fart all the time, have pain, and you just want not to be touched. I had guilty conscience towards my partner because I couldn’t attend anything, not be social or having a sexual relationship (P10); Your partner gets a double duty (P11); ‘Can you go skiing with us now, daddy?’ But I’m unable to do it (P15); I don’t suffice as a colleague at work (P24).
Phase 4: experiences of the upward phase of PIFS
[I’ve] gradually started to become better. It’s a long time since I have had any crashes (P1); [C]ould gradually sustain slightly more physical activity (P9).
I feel that my brain functions a lot better [now]… suddenly I became aware of it… have enough energy to read what I'm interested in, in the newspaper (P13); I’ve had concentration problems… have improved somewhat (P9); I felt for the first time since I became ill… boredom… a sign of improvement (P19).
I feel that I gradually can tolerate more [alcohol] (P16); [I could] slightly tolerate more sensory input… listen to the radio again… watch some television… half an hour in the evening (P9); Spicy food I can’t eat if I’m drained of energy, but on a very good day (P20).
I feel I can resume a form of social contact that I’ve put on ice. I now feel that I could book tickets to the music festival… because I’m starting to get better (P13); [A] little contact with friends by email and possibly telephone (P23); Just that I can talk with people, discuss… keep up, that gives me a lot now (P16).
I had full-time sick leave… probably a year passed before I resumed working 20%… for quite a long time, then increased to 40% (P1); [I] feel that my health has improved. I envision that I might be able to start working again (P13).
Phase 5: experiences of the chronic phase of PIFS
Now it’s fifty-fifty for me when I’m working 50%… 50% welfare benefits (P26); I’m much better… at school six hours every day, max (P16).
The recent weeks have been the best in a long time… Now I sleep 10, 11 hours instead of 14 (P4); The symptom intensity has abated… but I [still] have many symptoms (P1); Stomach pain, diarrhoea and sweating all day… my body trembles, headache and my stomach growls, flatulence (P20).
[I] could improve for a while, and then maybe I pushed too much, and then there were other things that certainly provoked setbacks and I could get worse again (P9).
Today I have Alzheimer’s (P20); Still I have no memory. What happened last week, it’s gone… If I don’t have papers with me, then I remember nothing (P10); The cognitive also has become very much better (P17); I’ve resumed studying… a bachelor’s program (P14); I improved physically before I improved cognitively (P19).
Now, when I’ve got some energy, I’ll make contact [with friends] again (P11); I've been abroad… weekend trips with friends two, three days (PT).
I’ve been homebound, lying down most of the time. The last three years have passed as one… doing absolutely nothing. [E]ven if I use blackout curtains, I need to wear eye protection. A flash of light is too much…I get worse from any concentration… watching TV or reading… starting to cold sweat and feeling dizzy (P23).
[T]oday I’m more ill than I was when I started getting back to work (P5); I’m on disability benefits (P20); I’ve become weaker and weaker… much more fatigued, walk like a zombie at home (P10).
[It is an] uncertain world, [I] live from day to day (P10); I hope I’ll have steady progress and still get better, that this doesn’t stop now (P16).
Work is an important part of my identity, but I can’t spend so much energy at work that I don’t have energy enough to my family at home. I've realized it. I am conscious that I have to share the energy between my job and my family because they are equally important (P26).