26 May, 2007

Tag: 7 (not so) random facts about me

I've been tagged by Mary. Here are the rules: Each person tagged gives 7 random facts about themselves. Those who are tagged need to write on their own blog those 7 facts as well as the rules of the game. You need to tag seven other people and list their names on your blog. Then you leave those you plan on tagging a note in their comments so they know that they have been tagged and to read your blog.

OK, my facts are not very random (but it is my blog after all :-)

1. I got myself an education. I worked hard and enjoyed it. Life was hectic, exciting, stressful, and interesting (although I didn’t knit). This is what life used to be:

2. August 31st, 2001, this happened:

I would like to encourage all readers of this blog to concentrate (don’t knit!) when driving a car. Being hit from behind by a car driving in 43.5 mph/ 70 km/t is so incredibly unpleasant.

This was the result:

3. I felt like this for 1,5 years:

That is, until I got an interest in gardening, then I started feeling like this:

Due to a lot of help and support from family and friends, I was fortunate enough to also feel like this:

The three pictures above show how it feels to live with ME/CFS (at least from my point of view). Although at that point in time, nobody knew what was wrong with me. I could only state the facts: All energy seemed to be drained out of my body, and in addition, there was a long, long list of other symptoms. I was barely able to leave the house at all, and got sicker and sicker every time I did.

4. After about 18 months, I got this message:

Great news! At that point I had tried all sorts of hobbies, all of them just making me even more exhausted. When getting the great news, I suddenly remembered that I used to knit when I was a teenager. OK, one more thing to try, maybe it wouldn’t be to energy consuming to knit? It was energy consuming, and it took me 7 months to knit a small jacket, a dress, babysocks and a hat for my little niece. But it was less energy consuming than all the other hobbies I had tried, so I continued. And continued, and continued, and still continues (Thank you, little sister!)

5. Then I got more great news in 2003. After two years of wandering in a desert of a health care system, a doctor finally took interest in my “case”. He sent me to another doctor, who finally diagnosed me. Getting a ME/CFS diagnose is not something to wish for, but it’s better than being undiagnosed. In addition, this doctor enrolled me as a “guinea pig” in a scientific project, using experimental medication. These happenings made me feel like this:

I had started the road to recovery. Recovery is slow. Very, very slow. Oh my God it is slow. But slowly getting better, is better than not getting better at all.
(The scientific project does no longer exist due to lack of funding.)

My partner helps me a lot. He bought me a green house. Every spring he goes out, digs and carries compost, and makes me a blank canvas to work on:

Thank you!!!!

6. So I got a new life. I didn’t want it, but you can’t appeal to life. Life does as it pleases. My new life is not a hectic one. ME/CFS patients are unable to tolerate much stress. So out of an old hectic life, grew a new and very peaceful one:

7. It is now 5 years, 8 months, and 28 days since the car accident, and now I feel like this most of the time:

I hope to feel like this (at least once in a while):

Before I reach this stage:

If I ever get well enough, I plan on turning into some kind of anti-stress-guru. I will publish books with titles like these:

“How to relax while finding 55 ways to photograph a Dandelion”

“How to relax while your partner does all the digging in the garden”

“How to relax while knitting a scarf”

“How to relax while crocheting a hat”

“How to relax while blogging”

And if I still got any energy left after that, I’ll start a knitting factory ;-)

You would do me, and all the other thousands of ME/CFS patients, a great favor if you spend a few minutes on educating yourself on what ME/CFS is. There is a severe lack of knowledge, both among medical personnel and laypersons. Having an invisible and unknown illness makes life so much harder for all of us. Every time I meet someone who says they’ve heard about ME/CFS, it makes me so incredibly happy. It somehow makes me feel that I don’t have to fight so hard to get them to believe me.

This is the only post where I’ll write about this. I have defined this blog to be a corner of my life where illness is not allowed in. I guess this post is just the exception to the rule :-)

Links concerning ME/CFS:

YouTube: CFS 2006 awareness Campaign CDC (7,33 minutes long)

YouTube: Sleepydust - About M.E. / Chronic Fatigue Syndrome (9,16 minutes long)

Informasjon på norsk (Information in Norwegian)

I’m not tagging anyone, but feel free to list 7 random facts about yourself if you wish to do so :-)


Mary, Mary... said...

Oh Hilde, only you could have revealed so much in such a beautifully poignant and unique way. I appreciate what you have done with this silly game and my heart is truly touched. Thank you.(complete with long hug and squeeze)

Marie said...

you managed to write a beautiful post about a horrible disease - amazing! My best friend has ME, and it's taken a long time for me to fully understand what it's like. Like you, she says that having to educate people about it a terrible extra burden. So I hope all your readers will click those links.

HPNY Knits said...

big hug Hilde! your amazing spirit shines through -even through the very hard times! and this beautiful post,like poetry- feelings as flower stages is very moving. I am happy to hear that you are on the right track. I am in the exercise business and had over the years clients with CFS so I know a little bit about it.
research on knitting has shown that when we are "in the zone" its like meditation- it has positive physiological effects on the body.

Enaj said...

Pas godt på dig selv. Har været inde og læse om sygdommen og det lyder til at være en hård omgang.
Klem fra Jane

Elisabeth Augusta said...

Hilde, du har min fulle forståelse. jeg kan selvsagt ikke vite helt hvordan det er, men det er ikke langt fra.
Du har laget et nydelig innlegg om et vanskelig tema. Velvalgte ord og fine bilder. Du inspirerer meg langt over gjennomsnittet.

Grete said...

Tusen takk. Så nydelig måte du beskriver og forteller på. Mange lidelser har jo lignende symptomer; forstår hvordan det er. Et av de beste bloginnleggene jeg har lest. Fortsatt god pinse:-). Klem Grete

Sigga Sif said...

You told your story in such a nice way. The dandelion pictures are great. Hopefully your bud will open fully sooner rather than later.

Ellen said...

Er så stolt av deg :0)God klem!!

Hobbygåsa said...

Til Hilde
Du har beskrevet dette på en måte som ingen andre hadde kunnet. Du har også beskrevet mitt liv på en utrolig rørende måte. Jeg har faktisk tårer i øynene. Jeg fikk ME diagnosen i fjor høst etter mange års sykdom. Som du sier, det er ingen god diagnose å få, men det er bedre enn å ikke skjønne hva som feiler en. Jeg unner ingen denne sykdommen, men det er allikevel godt å vite at det er noen som skjønner der ute....
Strikking er mitt tidsfordriv når jeg ender i sofaen eller sengen, og maling er mitt tidsfordriv når jeg orker å stå. Min drøm er å kunne reise på en ukes malekurs i Frankrike..
I min blogg er jeg heller ikke syk, det er utrolig godt å ha et fristed hvor ingen kan se hvor lite jeg klarer.
Ha tro Hilde, vi skal begge bli blomstrende igjen!

candyschultz said...

Hilde, that was like reading a wonderful storybook, despite the sadness. It was very lyrical and the photos are beautiful. You know I can sympathize with you as fibromyalgia/chronic fatigue is very similar. I could never have explained it as well as you just did. Unfortunately I am not getting better and they don't expect me ever to. People do not believe you because you look fine and they try to tell you what you should do, or else you can see that they just think you are lazy. At least my husband is very supportive and helpful. The lack of energy can drive you nuts.

Have a wonderful, stress free weekend.

Sylvia said...

Hilde, det visste jeg ikke......Jeg har sett på deg og din blogg som en inspirasjonskilde. Du lager så mye flott!!! Tenk hvor mye krefter du har lagt ned i de tingene! det er jo bare en flott prestasjon, synes jeg!
Jeg vet om noen flere bloggere som har denne sykdommen som du har. Og jeg snakket med en som har en søster som også har den, og hun sa det så fint, "for det er visst de mest energiske som får den, og de rammes jo hardere enn om det hadde vært en som var roligere".

Det fint å se at du tar livet som det kommer, og nyter de gode dagene. Stå på! Stor klem fra meg!

Strikkelise said...

Takk for en flott posting om et alvorlig tema. Jeg visste litt om sykdommen fra før, men har nå lært mer via linken din. Lykke til i fortsettelsen, håper sykdommen din går tilbake snart. Høres ut som om du har en super samboer!

Lillesøster said...

.....Tårene siler ned. Så vakkert fortalt

artinreality said...

I'm so totally taken aback with your honest, to-the-point, beautiful writing. Thank you for sharing!

Rineke said...

Hej Hilde,

Det var da ikke så 'random' mere centralt, og det gør stor indtryk. Jeg ønsker dig blomstring!


Anna said...

Vad fint skrivet, och verkligen passande bilder till.

knititch said...

this is very cute. i like the way you use the picture. your good spirits will certain help you along.

blåggdama said...

Løvetenner er utrolig seigliva, Hilde :)
Det var en god hstorie, god i betydningen at den gav meg mye. Du må ha hatt stor glede av å tenke den ut og så lage den. Litt som en fortelling, som en bok? I hvert fall med litt flere detaljer og utfyllinger :)
Hvorfor løvetann, ligger det noe dypere i det eller tok du det nærmeste til hånds?

Hilde C. said...

Thank you for your nice comments on a blogpost that is probably not that easy to comment on :-)

Tusen takk for hyggelige kommentarer (på et innlegg som det nok ikke er så lett å kommentere på :-).

Blåggdama: Valget av løvetann var ikke tilfeldig. Det å beskrive med ord hvordan det er å leve med ME er noe jeg har vanskeligheter med. Det blir 10.000 ord, og så er jeg like langt. For et par år siden så jeg et løvetann-foto på nettsiden samfoto.no. Akkurat det bildet klarte å beskrive nøyaktig hvordan jeg følte meg energimessig sett akkurat da, noe jeg altså ikke klarte med ord. I det jeg bestemte meg for å komme ut av ”ME-skapet” på bloggen, visste jeg at jeg måtte bruke en annen metode enn ord, og da kom jeg til å tenke på løvetannbildet igjen. Jeg hadde egentlig litt flaks med timingen, fordi akkurat nå finnes det et vell av løvetann i alle stadier i hagen (jeg bruker ikke energi på luking av ugress, men lever i et fargerikt fellesskap kan du
si :-). Bildene reflekterer for meg ulike stadier av energi (eller mangel på sådan), og ikke nødvendigvis hvordan jeg føler meg rent følelsesmessig sett. Humøret er heldigvis stort sett bedre enn løvetannbildene tilsier. At løvetenner er seigliva er vel ingen ulempe når det gjelder bildebruken. Utholdende/seigliva er også alle ME-pasienter jeg har vært i kontakt med, på tross av en utrolig krevende livssituasjon. Det slutter aldri å forundre meg hvor mye vi mennesker faktisk er i stand til å mobilisere når vi er nødt til det.

Anonymous said...

Hei, skreiv deg ein mail i staden for eg.. Ein seigliva ein :P

Takk, Hilde!!

RedRobin said...

Hei! For et flott innlegg, til tross for det alvorlige temaet. Jeg måtte smile flere ganger underveis her, jeg innrømmer det. Og så har jeg samtidig lært noe nytt om en sykdom man vel egentlig hører mer og mer om.

Stå på - ønsker deg alt godt! :o)

LeeAnn said...

Your photos really tell the story well.

Rebecca said...

You wrote a beautiful post on such a not-so-beautiful subject... you always impress me with your writing and photography and crafting skills, and now knowing what you have to go through, you have managed to impress me that much more. You have such a great attitude toward your situation, and it is great that it is helping you to overcome it. I hope that you continue to improve.

Hannele said...

Härligt skrivet med passande bilder.