dinsdag 9 mei 2017
"A resting day"
Today I slept with help of sleeping pills because I was far beyond tired and experiencing all kind of cardiovascular - chest - throat effects that wouldn't make me be able to fall asleep because they feel like you're body is running a marathon. So you're heart, pulse, breath ... keeps you awake and far from in the opposite of the fight or flight state.
As said I could stand up right to the sink. That's very good.
Unfortunately I was distrubed by a fire alarm beeping very sharply, noticing me its batteries were almost runned out. So I had to take it off, using a lot of pressure and strength, after putting up my chair and bring it to the hallway...
To make matters worse: I have two bring broken alarms 2 etages lower, thinking I could use this to empty the letter box. But when I was there I noticed I didn't have the key ...
For other people very normal: for me an extremely disaster which I had not reckoned on. But anyway, it had to be done. It left me already devastated before the day even was started... I hadn't spent on using that much energy. I wanted to rest.
So this is for me a "resting day". My mother screaming that i have to put the bins outside, mailing towards a doctor, an accountant, a bank, ...
Now it is 3.30 pm ... and I can go lay in the sun. :-S
As beautiful, relaxing and dreaming it sounds, even that, pulling myself ut, putting my food in the fridge, rolling my towel on the balcony, ... It costs me a hell of an effort which I am even scared to do.
Because if the sun goes away if I finally lay flat, I have to do all these steps again ... which I don't have the energy for. Believe me, i don't have the energy for it ...
Extremely bad again
It must be more then a year ago, when I just returned from having worked full time for nearly 4 months (how embarassing that I was only able to do that for four months, albeit true that my boss asked so much of me that I easily worked up until 60 - 80 hours a week.
Although I was very lucky - at least I thought - I liked, no adored, the topic of my job: health care policy sector. So I was not even complainting about all the work, the stress and deadlines while I liked it very much. Although my colleagues had some questions by the imminent work load always coming my work and before something was finished, I had something new coming up. To be finished yesterday. Now okay, let's say monday afternoon. But when you're spending you're prenoon in Brussels or Antwerp, you know it will mean: having no weekend for another time...
After this period I was severely and extremely fatigued. I felt like dying. This expressed itself trough very strange feelings at the height of my lungs, throat, chest and heart. Let alone heart palpitations, tachycardias, arythmia's, I was long passed that stage ... My lymp nodes were very swollen and pressing on my air tube, I felt like crackin'up, or in between. My chest felt just tight, just extremely uncomfortable. Just like feeling: it is over and out. You're completely run out. You're empty. Somehow you can probably feel after being underground for weeks without food and drinks, and over 90 years old. There was just nothing left and i felt how my most vital organs were cracking and crumbling unter the pressure. Because this feeling was so nasty, irritating and all but comforting I sedated myself with sleeping pills (at night of course) not to feel it.
I felt like I had to wait until my hyperstressed body find rest and would fell asleep by itself, I would already have died... of that same stress and exhaustion... So I was felt without a choice.
When it was light and normal people wake up, I was laying down on the sopha. Drinking or eating i was almost not able too, I can't imagine anymore how I made sure I got this.... but then I spent like a month of 3-4 doing nothing else but resting. Almost untill the end of the summer.
It took a very long time before I was even able to stand up right and try to feel something again or do something again.
Yes I was panicked completely, yes I was crying all the time, at least when I was not so tired and zombie that I didn't even have emotions anymore and i a dazed state, i was wondering: will this ever stop, will this ever resolve? Will I ever have a normal life again? (Well... normal, for me normal... But when I started working I was not this bad, although I must say that I often went to apply for jobs in cities like Mechelen, Vilvoorde, Brussels, ... afterwards being completely exhausted from the trip alone, leaving me like near death for almost one week. What was I thinking by applying there? ... I knew it would kill me and my body just couldn't catch up with that idea.
So at the same time, I was also looking for housing facilities there (appartments, flats, ...) so that I could move almost immediately. Or even better: move before you got the job. I knew this would be the only way in which I would - excuse me - might be able to cope with the stressful demands of the jobs. By the stressful demands I don't mean the really demands of the job as described in the job description. My cognitive functioning, organising skills, executive functioning, ... everything was okay, but my physical body was just not made to being awake 8 hours in one piece in one day, let alone also having to travel, doing walks with colleagues, paying attention to what they say, eat not too much because in 20 minutes breaks there's only so much I can eat ...which is not enough to reload myself.
But now we're more than a year further. And I'm still .. almost whole the day out laying on the sopha. And every move feels like the much to move. Yesterday I hang too the sink brushing my teeth, I was saving energy because afterwards I would shower standing up straight and wash my hair even... which was not an easy evident task for me anymore.....
Today I managed to stand up right by the sink... So I thought yes: this is going to be a good day, I might have some more energy than yesterday. Because yesterday I was so exhausted, a friend came by bringing me groceries but I wanted to catch up with him also, altough my body was telling me harshly I couldn't and my voice was breakin apart rapidly. But it's so difficult to express that (also the person in front of you can often see it) because you are happy to see them and so happy that someone does care for you! It makes all the difference!!
Especially in a world were there is nothing else left: no certainty of getting better, if you get better, to which degree? Will u be able to run around and work the whole day, doing activities afterwards, keeping track of your relations with family and friends and having a satisfactory life? I highly doubt that ...
You never know of course. After all, I have some memories about periodes that were not that bad. But I must say I told myself for years and years, if not decaded, that I was lazy. That I just had a lack of discipline. That I was just easy going with myself, finding excuses for every responsability.
So at the end of the day, I always had to watch out what to do and never was as active as others.
My sister and I used to speak about our dream day when we were younger: that would be, as simple as that:
- shopping out for clothes and stuff
- having dinner afterwards
- going out / party
This never happened...
Do I need to tell in me hides a party animal like mad - often singing songs and dancing in my head - but I can only leave it out for like 2-3 times a year? And even than I pay the price afterwards. After 2-3am I should be in bed if I don't want "fun" for a week... in which I have difficulties with everything described above and I don't want to feel an inner feeling of shivering...
Well, so, but before we lost everone, back to the bacisc: where am I know:
- feeling very shaky and weak
- having to rest for the uppermost time of the day
- being very prudent with making movements so they don't cost me to much energy
eg I live on the 4th floor and emptying the letter box is an extremely problem for me, but sometimes is going from bed to toilet or toilet to seat a big problem
- cooking is a problem / standing up right for a long time
- especially towards the evening it goes worser and worser
Normally I would eat around 8-9 pm only (badly organised and only "wook up" at 2 pm... and than go to bed around 23-0 maybe even 1-2 am, after watching a serie. But those days:
- not being able to watch a serie anymore after eating
- eating I shove up to 5 pm or 4.30 if possible (weather not too hot so I don't feel too bad about it ..)
- watching a serie: can't cope with it anymore, to fatigue-ing ...
- go to bed around 9 o'clock ...
- falling asleep without sleep medication, but ... having to go to the bedroom anytime
it's like I can't handle the feeling of something in my bladder: I feel it and I can't sleep anymore. It forces me to go to the badroom. My blatter is not full.
Though I may have completely filled blatters also. :-/
- having to leave my window open, even if it freezes outside (which is very uncomforting since I live in a studio where everything is basically in the same room so putting my windows open to avoid dying of heat in my bed, means my bathroom, kitchen and living room will be very cold too in the morning ...
- usually I get awake around 6, 9, ... Well it seems very often. :-S
- Very swollen lymphnodes in neck pressing on my throat
- i would swear that also something else is pressing but okay my thyroid is checked over and over and would be fine ...
- pain "stabs" switching: then there, then there. With preference for joints and especially hips.
Some days ago I couldn't walk normally because of the hip pain (left side)
Today I just stood up and I almost completely drop trough my leg because I had no idea my right hip has given up functioning...
dinsdag 18 april 2017
zaterdag 23 april 2016
LAB URINE SAMPLES
Oct 2006: Protein trace
Urobilinogeen trace
RBC C 6 +
Mar 2010 RBC Heem Pos 2+
Preop Urobilinogene Pos
RBC C 162+
Apr 2010 WBC esterases trace
Urobilinogene trace
WBC C 206 + +
Oct 2011 Protein trace
Urobilinogene trace
Ketons Pos
Feb 2013 WBC esterases Pos 1+
RBC Heme Pos 2+
Urobilinogene Pos
WBC C 60 +
RBC C 48 +
Oct 2013 Protein Pos
Urobilinogene Pos
Bacterias 4520
Nov 2013 WBC Esterases Pos
Protein Pos
RBC Heem Pos
Urobilinogeen Pos
Microscopical mucus +
WBC C Pos
RBC C Pos
LAB results BLOODWORK
I am only going to mention the deviated results, sorted by date.
A marker not appearing may mean: it has never been tested during the bloodwork or the results were not abnormal.
Please feel free to ask me for more information, it may help me and who knows how much people out.
2003: Iron: 27 -
Iron/transerin 0.11 -
Neutrofiles % 75.5 +
Alfa 1 2.0 - (proteïntest)
Gamma-GT 6 -
Bilirubine Total 1.94 +
Bilirubine Direct 0.59 +
Bilirubine Indir 1.35 +
CRP 1 +
Colour serum yellow
Mar 2006: MCV 99.8 +
MCH 32.9 +
Neutrofiles # 2 -
Neutrofiles % 38=
Lymfocytes % 52.7 +
Bicarbonate 30.1 +
Bilirubine total 1.14 +
Lipasen 63 +
Glucose BGA 122 + (arterial)
May 2007: MCV 97.0 +
MCH 32.9 +
Neutrofiles # 1.4 -
Neutrofiles % 33.1 -
Lymfocytes % 58.7 +
Epstein-Barr EBNA Pos
Oct 2007: MCV 97.9 +
WBCC 3.97 -
Neutrofiles # 2.1 -
Neutrofiles % 33.1 -
Lymfocytes % 58.7 +
Treponema pallidium As 1.58
Apr 2008 Transfer saturat 47 +
Ferritine 13 ondergrens
Zink 88 ondergrens
Bilirubine total 1.99 +
Mar 2010: MCV 96.8 +
Pre-op Kalium 3.33 -
Chloride 108.8 +
Anion Gap 9.8 -
Creatinine 0.50 -
CRP 6.8 +
Mar 2010: Hemoglobin 10.4 -
Post-op Hematocrite 0.32 -
RBC C 3.34 -
Monocites 10.6 +
CRP 5.6+
Mar 2010 Hemoglobin 11.8 -
Post-op Hematocrite 0.366 -
RBC C 3.71 -
MCV 98.7 +
Neutrofiles # 2 -
Alfa 2-globuline fr 7.0 -
Albumine fract 53.3 +
Bilirubine total 1.35 +
Lipasen 66 +
CRP 2.6
Apr 2010 Hemoglobin 11.9 -
Post-op Hematocrite 0.367 -
RBC C 3.80 -
MCV 96.6 +
Neutrofiles # 2.1 -
Bilirubine total 1.13 +
Jul 2011 MCV 99.5 +
MCH 34 +
Neutrofiles # 2.1 -
Lymfocytes % 50.6 +
Bilirubine total 1.33 +
Sep 2011 MCV 98.2 +
MCH 34.2 +
Imature reticulocyte fraction 4.8 -
Erytroblasts counts 0.80 -
Neutrofiles # 1.8 -
Monocytes % 10.1
Bilirubine total 1.74
LDH 483 (possible hemolysed blood)
Oct 2011 MCV 98.0 +
MCH 33.6 +
Neutrofiles # 1.9 -
Lymfocytes % 50.6 +
RBC 3.7 -
WBC 3.4 -
Anion gap 10 =
Bilirubine total 1.41 +
Bilirubine direct 0.24 +
Alkalische fosfatase 25 -
Tot proteïn (plasma) 6.4 -
PT (%) 86 +
CRP 7 (on 8th of October 2011)
EBV VCA IGG Elisa positief
Oct 2011 MCV 97.6 +
MCH 33.6 +
Neutrofiles # 1.9 -
Lymfocytes % 50.6 +
Bilirubine total 0.75 = (! 1st x normal value!!)
Bilirubine direct 0.20 =
CRP <0.2 (on the 25th of October 2011)
Nov 2011 MCV 100.3 +
MCH 33.7 +
AST 34 + (possibly hemolysed sample!)
LDH 764 ++ (possibly hemolysed sample!)
CRP 29.3
Dec 2011 MCV 100 +
MCH 32.7 +
Neutrofiles # 2.0 -
Basofiles 1.4 +
Parkeet allerg 29.9 +
Pidgin 31.4 +
Moult 22.4 +
Dec 2012 MCV 99.3 +
MCH 32.8 +
Fosfate (anorg Fosf) 0.68 -
Folaat 573 = (438 - 1070)
Vit B12 329 = (191 - 663)
Bilirubin total 0.89 = !!
CRP 13.3
Oct 2013 MCV 98.8 +
MCH 32.6 +
Neutrofiles # 1.9 -
Eosinofiles % 11.7 +
Eosinofiles # 0.6 +
Bilirubin total 1.70 +
Cortisol morning 34.3 +
Nov 2014 MCV 98.1+
MCH 32.1 +
WBC C 3.52
Neutrofiles # 1.5 -
Basofiles 1.4 +
Anion gap 20.1 +
Bilirubin total 1.97 +
Ferrum 192 +
Transcortine 71.8 +
Immunology C4 0.15 -
Nov 2014 WBC 3.1 -
Neutrofiles 1.52 -
Complement C3 81 -
Immunoglobulines
Cortisol non-evening 34+
Lymphocytes subpopulations
CD 19 % (B-total) 18.1 +
CD3-CD16.56 (abs) 0.07 -
Feb 2016 Bloodplatelets 140 -
Neutrofiles 1.96 -
Eosinofiles 0.8 -
Lymfocytes 52.2 +
Poikilocytose +
Atypical lymphocytes +
Iron - 51
Morning cortisol 21.5
Cortisol after ACTH 32.6 +
22.6 +
23 +
Symptoms
This will probably become the longest post I will make here and I want to excuse me beforehand for any impression I may make (*) for the very elaborated but probably (knowing myself) not even exhaustive list of the main (I think) symptoms I experience during the last year:
Disclaimer: since the list of medical symptoms is this long, it is probably very hard to find a line in this. Especially because I would like to be diagnosed and given the strange and unexpected questions I heart from doctors (e.g.: do your hands or feets get cold easily - yes they are always in fact) I don't know how to discriminate between what may be a symptom of a disease or what just may be a symptom of a normal healthy human.
Keep in mind that I write this down, having shopped from doctor to doctor in different periods of time and staying behind now with a life quality that is very close to 0, so I do will write every detail that I am able to percept in my body.
Fatigue ++++++
Muscle weakness ++++++
Joint pains and aches or itchings, esp in knees, fingers, wrists
Joints may be red, swollen and very itchy
Joints may be painful
This problem inceases when use of the joints
Tendon infections in knees
Easily pain in tendons
Tough please notice pain is not one of my major issues and is rather uncommon in whatever disease I may have
Skin and rashes
Cracked finger nails, with a little red spot, vertical lines, easy cracking
Very thin and sensible hair
Very pale face
Unclear fatty skin in the face
- a rash on the scalp, psoriasis or seborhaisch eczema
- rash on the face, around and on the nose
- rash between breasts
- itching after sitting in the sun, especially in the cleavage zone or on the upper back
- suddenly red small round itching patch where I can wake up with, disappears by itself
- dark red / purple points on legs, usually three in a line. Ever called "linear rash pettern by my doctor"
- moles that seem to infect from theirselves apparently
- lots of wrats and other little skin tumours (no doctor called them ever that way) but my pale skin looks like a pancake...
- Very Dry mouth with always aftosis or swears, in mouth or throat
- Very dry eyes
- Chronic infection of the right eye, only goes away by cortison medication so it stays there
- right eye has a strange gaze
Infections all the time:
- throat aching ++ (but since what I do now live with, considering I have less throat aching last months, I would do everything to get it back and trade it for the symptoms I have now :-s)
- Upper airway infections ++
- long infections: common
Heart palpitations at night when I go down lying to rest (very disturbing)
extrasystoles
pauses (lasting no longer then 3 seconds happily)
Body temperatures rises very highly at night
Urine output also rises very high at night ...
Since a couple months:
- exhaustion
- extremely fatigue
- extreme muscle weakness
- feeling physically empty, but mentally i still wanted to do it all
- start to feeling mentally quiet numb too and trying to ignore my body which seems not able to do anything aymore
- have to go to bed around 6-7 pm .....
- took sleeping pills (had a busy job)
- stopped with them and take a beta blocker instead, though sometimes so tired that I feel like I will die if I don't take them (heart seems to shutter, breathing becomes more like a 90'old men that is dying than of a 30 years old woman
- feeling that I am old, done, aged, worn ...
- feeling that my body is phyiscally completely, but completely, empty
- everything costs a lot of effort and most of the time it is too difficult
So since this period, my life quality is zero: I am not able to do my work anymore, nor my hobbys, not even able to see my friends, not to do something nice with the people I like like do a terrace in the sun, have a drink, go to a restaurant or the movie, ... My body just won't do it anymore for me and I can't make appointments because I can not predict how my body will be that day ...or evening.
Well making appointments in the evening is just not an option anymore whatsoever since I am in bed at toddler's time...
Since I do love my job, I have the best colleagues ever, I loved my bosses and I am sure there is still so much I could learn there and made a lot of progress and I finally got that chance to do what I have always loved to me ... it is like a dream I was living in, I also want to be in the sun (it is spring time now) and I want to be busy with my hobbys and just doing anything like a 30 year old woman is supposed to do: buy a house, get a boyfriend, get children (if possible with my endometriosis, thank you very much prof Koninckx for operating me and giving me back my life when I was 24 ... :) ).
(*) keeping hypochondria, munchausen syndrome or just being an attention whore in mind
P.S.: I know I am healthy. ;)
Adolescent 18 - 24
Symptoms or diseases:
- heavy stomach pains and bladder infections
- heavy nausea
- fainting from pain
All which would later turn out as endometriosis at my 24th (2010): 2 endometriomas in each ovary, a cyst along the uterus and a nod in the douglas hole
2003: Gilbert's syndrom
2007: Chronic Fatigue syndrome (...)
2011: unexplained disease during approx 4 months (see other blog post)
2013: Chronic Fatigue syndrome and 16/18 valeïxpoints of fibroymalgia positive
2016: CFS is excluded: too much physical symptoms (see other blog post)
Unfortunately, I do not believe in CFS or whatever they want to call it, still it is not a fitting explanation for me, happily now doctors believe CFS can't be the explanation anymore.
A more funny side story: health care law add extra criteria to fit in CFS to claim rights on ill-benefits, now your BMI needs to be > 18. Unfortunately, that never happened to me in 30 years now either, despite daily efforts.
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