Ill with urges

Long dreary weeks have passed since I last set eyes on this space. I wish I could say I´ve been busy travelling, socialising or even working. But no. This crash has according to some spiralling plann been worse than any other. And now, when the haziest days finally are behind me, the illness has again advanced its permanent hold of my abilities. Two months ago watching a film on the couch equaled rest, as did opting for the wheelchair. Now they both equal activity beyond my reach. 23 hours a day I spend horisontally, the 24th divided in to brief ventures to the bathroom or kitchen throughout the day. And still, although I shiver or sweat like I have a fever, my heart pounds so hard it feels like its about to burst or my hands tremble holding the toothbrush, I am at the same time perfectly capable of normal feelings like being hungry, horny, have a sweeth-tooth of really really fancying a pint (preferably a Butty Bach at the Barrels).

It certainly gets boring, but when you´re so ill that breathing is plenty, the imagination takes over even for a realist like me. Mum could come in to my dark room many hours apart, and it annoyed me that she disturbed me in my vivid fantasy world. Its now, when I sometimes feel well enough for phonecalls, films and making my own cup of tea, that it gets difficult to get back in bed quick enough not to ruin all these weeks of resting. How will I ever learn not to push the limits too far? And how long can I consume artificcial life before reality comes out of reach? Every day is like walking on eggshells.

On another note. I came to think of the saying "you never know who really are you friends until you really need them" or something like that. Well I´ve never been one to have loads of friends. And I´ve never been one with a group of girl friends a´la "Sex and the city", who do anything for eachother, go on mad holidays together and who talk about everything. I´ve never had a best friend. It probably boils down to something from my childhood or something deep and psychological like that. But I was a lonley child and grew up to become an adult who deep inside only trusted in herself. So I guess I expected people to feel sorry for me when they heard about my situation, but forget the minute they hung up the phone or logged off the computer. Afterall we are all the lead characters only in our own lives. But a year and a bit in to the disaster of mine, and unexpected messages still keep appearing on the screen, in the post and in my phone. All sticking to my heart like post-it notes, and I hope that one day I can do more than just say how much it means to me not to be forgotten.

The pace of the thankful diver

So finally some people in the concil and health services have started realizing how difficult my situation is, and I am indeed grateful that they worry. But unless they have masses of money to kick-start some bio-medicinal research, or have a minor miracle up their sleeve, there is unfortunately nothing they can do to help me.

This will to help mis-fired a fair bit the other day, when an emergency councilor team came out to convince me that I needed to be admitted to a psychiatric ward, since they had interpreted my claim that I was so weak I couldn´t eat by myself, as a refusal to eat, and the classic "cry for help" from a severely depressed person. It took me the best part of an hour, and the the entirety of the remains of my energy that day, to explain to them that my condition is not psychosomatic, and I have no planns to starve myself to death as long as I hold the ability to swallow. It didn´t make it easier that one of the councilors was of the "new age" type, dropping lines like "this incarnation is trying to tell you something" and "mind over matter". I have a bit of a built-in aversion to this kind of "airy fairy" stuff ever since I was severely depressed a bunch of years back and my boyfriend at the time explained me weak of mind and that it was the easest thing to rid of if I just turned to Buddhism and I-ching. Something he claimed made him balanced and fit for anything. This comming from a guy who made me feel insecure and lost and who when I left him, broke in to my house, tore the place apart and when I came home grabbed me by the throat and threatened me. Not to mention the phone stalking and crying for a long period afterwards. I say bollocks.

The only thing anyone can do for me now is to take care of all council and goverment contacts for me so I am left alone. I just don´t want to educate any more people about my condition, it drains me of the little energy I have, and i keeps me stomping on square one.

Well no not square one. More like -15. I know that the only way to survive with this crap is to completely surrender, and those who know me know how hard that is for my stubborn soul. Pacing is all about never to use up the little energy I have, to always leave a little to cultivate when I rest (like making filmjölk). Sounds like the advice a first-time visitor to Las Vegas gives himself, "always finnish while ur on top". Well it usually never works for them, and mostly it goes the same way for me. Its supposed to be tiny steps forwards, but so far I´ve only managed giant leaps backwards.

At the moment a general day can be likened with diving without tubes. I wake up (take a deep breath), get out of bead (go down under water) put some clothes on, go downstairs, make a simple breakfast (swimming), eat it (still swimming), go to the bathroom (running out of air), brush my teeth (really need to get to the surface), collapse on the sofa (gasping for air at the last minute). I then lie there for a few hours breathing, possibly listening to a podcast. Later when I need to go to the bathroom again, or maybe to eat some lunch it starts again with a deep breath and I go down below the surface, fighting the urge to do too much, like cook something that actually tastes good, make a phonecall, or read the mail, so I get back on the sofa/in to a darkened room (above the suface) while I still have some air left. Funny that I always wanted to try scuba diving but never got around to it till it was too late, might have come in handy these days...

I know its a cliché, but it really isn´t until its too late that you realize that you must enjoy life while it happens, and stop thinking that once I get that job/save up some money/write that essay/loose those pounds I will have a chance at happiness. I was happy but was too busy looking forward to appreciate it. But am I contradicing myself when not appreciating the good things in my life right now? I mean, noone doubts that I suffer, but I have wonderful parents who help me the best they can, a man back in UK with the biggest heart there is thinking about me and talking to me as often as my condition allows, and friends from all over sending me positive thoughts. I love them all, but I struggle to be thankful right now. Its a work in progress I guess.

All time low

So I´ve come to reach an all time low, again.

The crash sort of crept up on me. It takes a while, and every day feels like it couldn´t possibly get any worse. I mean when u are so weak that u have to let your mother feed you, its hard to imagine what more could be in store.

We had guests this past weekend, and I laid on the couch for about 95% of that time. They were all understanding and most of them took their time sitting down chatting to me for a while. Now I do like my relations, and I do want to see them, and I know that they came in to chat to me cuz they wanted to be nice to me. Problem is that even chatting while on my back makes me worse, and by the end of the evening even whispering made me out of breath. I was honestly expecting (and hoping) to just pass out.
But I never do.
My cousin William, 7, wisely told me when I explained I am very ill, that all I need to do is to drink some Actimel and I´ll be fine. He reconed 4 should do it. I wish I could believe everything they say on telly too, it would be so much easier if life really was like in the ads.

So for the past 8-9 days I´ve just been on my back. Normally my ME doesn´t involve much pain, but when having constant pressure on my back, my lung area and my legs eventually get quite sore. I´ve watched the final two discs from the Invest in ME conference, and I still take it in with mixed feelings. My set of symptoms don´t seem to really fit the descriptions that the specialists are working on treatments for. They all focus on finding the viral cause, but I never had a viral infection at the onset of all this. Maybe I did but didn´t notice it? UK physicists mostly focus on the pacing management, but I can´t see how to apply that to my situation, I don´t have anything to pace!

They say that the only way to live with this is through a very routined life, something that I might be able to learn to live with. If that wold mean that I could still manage to care for myself. But I can´t see how I could settle for a routine in bed, and pacing meaning that I could manage a 15 minute phonecall or a dull movie on a whole day. Thats not a life I consider worth living, and not all the counseling in the world can change that.

Not that I can have counseling now anyway. I couldn´t speak for even a quarter of a session, and that is if I even got there. I can´t keep myself up in the wheelchair and she doesn´t make housecalls, so its justme and...me. And anyone more negative than that is honestly hard to come by.

So all I can do is just to lie here on my back, laptop on my tummy, waiting for a miracle, typing really slow, hardly reaching the keys in the middle of the keybord cuz it makes me have to tense my arms and knacker me out even more. And I don´t know if reading on the screen should be a no-no too.
Sometimes I toy with the idea of what would happen if I just got up and ran 100 meters as fast as I could. Would I be concious the following year? But mostly I am so afraid to get trapped in my body and not be able to communicate, to turn in to a vegetable while my mind is running. I feel like crying is my default state.

Life-support at all costs

The stream of new people from this or that department that might be of help in my situation never seem to dry up. Yet not a single one has actually managed to do me any favours. I´m waiting for the same answers now as I did in april, buy surely I must understand that from may to august Sweden is on holiday and sick people just have to wait. In the meantime I have become more ill, more dissolusioned and more desolate.

The Invest in ME conference in London this year sold me their DVD, and although it said "treatment" with big red letters on the cover (among other things), I don´t know why I let it get to me. There might be something they do in the US to a group of ME sufferers that tested positive for a certain virus in a stomach biopsy, and 28% of them have shown some improvement. But that is in the US, and will never happen in Sweden. Besides, I am one of those who didn´t have a virus infection at the onset of my illness, so I´m even a minority within this "pretend-it-not-there-and-it-will -go-away-government-policy" illness. And all I can do is to look out the window and try to stay positive. They don´t know what they´re asking!
Indeed I wasn´t depressed at the onset of this, and I managed to maintain a bit of hope for the first year because I sometimes had periods when I could take a bus and visit people or even drive to do some shopping.

But those periods are long gone. I smell and don´t even remember when I showered last, but I don´t dare to do it because then I might not even be able to go to the toilet by myself afterwards.

There is an ME forum where cherpy housewives say they can talk themselves in to thinking that they get the luxury of staying in bed all day. Well maybe I could too if I in between also could have days when I slowly could walk in a park or have a coffee with a friend.

No, who am I kidding. I am a pessimist by nature and I never liked staying in bed, it will never seem like a luxury to me, period. I am alone and don´t remember what human touch is like, the friends I used to have thankful for the distance that makes it easier to pretend I´m not there.
I see no hope anymore and I don´t want to hear that I´m too young to be written off at the same time as no officials will lift a finger to help me. The cost of keeping me alive and suffering will escalate when I develop more illnesses thanks to the sedentary nature of ME, but yet this CPR must continue indefinately because its a code of conduct that western healthcare is built upon. Regardless of my wishes.

I have a dream, just one

Its been a strain to be me the last few days. Not so much because my ME has been treating me worse than usual, but because I get bouts of mental distress that get deeper than I can handle at times. I was listening to Sommar on the P1 radio today, and don´t know why I forced myself to listen to the whole 1 1/2 hour program of one of the hosts in end of june, Fredrik Härén. He went on and on about how you can realize your dreams if you want to, and that its just to get out and take those steps and it will all come to you. Its been alot of that lately. The man who´s car got hit by a moose and was a write off, only for him to win a brand new Volvo two weeks later. Sports profiles who overcome injuries against all odds, or those that don´t and then discover masses of meaning in life through raising a family of something instead.

Well I have a dream, and its just to get well. Moving to China, have babies, apply for a meaningful job or run a marathon are all just luxuries I long ago stopped dreaming I will ever experience. I´m sick of hearing the "you can be anything you want" bollox. I´m not sitting here because of lack of vision. I want to live with Joe, study development politics and travel, and if was just well that would be exactly what I would be doing. I can´t be anything I want, so stuff the cheery attitude where the sun don´t shine.

Summary and anniversary

So one can think that we did nothing but rummage through rubbish and sanitize old furniture during the time we were in Denmark this time around. Well my mum did, cuz she is like I used to be, not able to relax and always have to have something to do. Even tanning is sort of like a forced activity when u look at her. But I spent alot of time in the hammock (what should I name her?), reading, knitting and listening to podcasts.


Recommendation of the month is "The secret history" by Donna Tartt. I can honestly not say why I liked it so much, maybe because I had friends in uni who also were students of the classics and they too belonged to a slightly different, paralell world that the rest of us didn´t grasp, when they dove in to discussions of Homer, Hesiod, details of Spartan society or ancient greek pronounciation. This tale of a bunsh of spoiled american college students, escalating in to various substance abuse actually even makes me want to give Dante another go.





Gran finally gave in and tried it

Tranekaer castle mill

Mum couldn´t relax and brought home bagfulls of weaving yarn and initiated a 3 day-sanitizing process

Now I didn´t feel too crap as long as I didn´t attempt any longer ventures than down the beach (water was surprisingly warm). On a few occasions we went to larger towns like Rudköping and Svendborg, something that would have been impossible without me being pushed around in a wheelchair. And even then I spent the following 24 hours in near unconciousness when we got back. This scenario seeming to have become the established order of things, and then we´re still talking about the "good" periods.
I celebrated my first anniversary as an ME sufferer on the 18th of july. I dunno how to describe what it feels like anymore. Thanks to various pills I guess I can focus on the few things I can do and in short bursts forget about the bigger picture. While in Denmark I can take being on public display. People stare, and I can honestly not say that I wouldn´t have stared at a woman in dreadlocks being pushed around by her 76-year old grandma, wondering what the heck is wrong with her. But when at home it happens that I need to come along to the local shopping centre, having my mum wheel me around like a packet in a shopping trolley. And then I am terrified that we will meet someone I used to know. What would I say? What would they say? I know I haven´t got anything to be embarassed about, but that is just what I am. I was always the one who never gave up, who could push myself and my body further than anyone else. Now all pushes just make me worse, and when I´m really tired I even look like I´m sporting a bit of a mental disabillity too, only a bit of drooling that´s missing. I prefer to stay at home. This re-defining of self is a work in progress I guess, and maybe I will relax about it in a few years.


A snapshot looking more or less normal, the ferry back to Sweden

Swinging contraptions and the all-organic experience

I aimed high today, and we ventured out to Rosenhill for lunch and hammock shopping. I´d forgotten how long it takes to get there, and even though I wasn´t driving its pretty stressfull to be a passenger when mum is the type of driver who sees a potential accident in every overtaking car; and week long spells of being completely lost, would she take even the slightest wrong turn.

But it was all worth the smell of burning clutch and it was a super day for being out in the country. With having ME I never know in advance how my crappy body will react to activities. Default is ofcourse in the negative, but sometimes, regardless how I feel before leaving the house, moving around outside feels ok, as long as the momentum lasts. Then afterwards I always collapse the minute I get home, for various lengths of time, but it still feels like it is worth it for a few hours taste of what life almost used to be like.

Luckily there are no far distances to walk (unless u want to botanise in the fields), and we tried pretty much all hammocks they had at Stora Famnen (big arms/hugs).

Mum really got in to the idea of having one, but gran was in doubt regarding the mechanics of getting in and out, and patiently left the joy of ungraceful wobbling to the younger generation. I really like the idea of having a Mexican hammock, the ones made with cotton nets. They shape better if you are more than one person (some has the size and strenght for 4 adults), and dry quickly if it rains while they´re out. But in the end I opted for a fabric type, mostly because they´re less sensetive to things getting caught in them (branches, keyes from a pocket, corner of books etc.) and they are the most comfortable if you lie long and can´t be bothered to put blankets in the bottom. Also it looks better would I ever want it indoors.

So here she is, my new Brazilian girlfriend Rio! White was the only colour they had, but she washes in the machine, and I´m planning on a colouring project when she start hinting on a permanent dirtier shade. I was thinking onion peel dye actually. Remember trying that at Bäckedals folkhögskola once, and it resulted in a deep red/brown shade. Only problem is that we´ll be havin onion soup for weeks to get enough peels going for something this size...

Now we just have to figure out how to hang a hammock without trees... While in Denmark we should manage, but unfortunately mum´s manicured garden at home has no time for pesky leaves falling all over the place.


Moving on to the café and shop, we did the all organic lunch experience. I wish I one day will get the chance to go to one of their bar and gig nights, because since the sunny summer days require that you sit out on the cozy poorch of this very rough and ready barn, you miss out on the fabulously cool inside of the lounge (today acompanied by just the right level of Johnny Cash).


Unfortunately we were too early in the season for their apple must (juice) pressing factory to be open, but there were still no shortage of spending opportunities in the shop.

So afterwards I now feel like the flu deluxe, and will probably be a permanent couch fixture for quite some time. Its funny how I have two settings for when my body gets knackered out, either my limbs get so heavy I have to put up even the slightest muscle exertion for later, or I get these flu like symptoms, when even my eyes ache as if I had a fever.

Anyhow, after today´s home-growing inspirations, I´m aiming to raid the rhubarb plants as soon as my ailment alleviate slightly (could be a few days, and if I´m really out of luck, a few months). I´m thinking marmalade with cardamom, or vanilla, or ginger...

Take 3 - top

Another day has passed, as uneventful as all the previous. I still feel like in transit, who can accept that this is it? The summer is in full swing and I could be on my way to Mexico, at the Roskilde festival, or walking Hadrian´s wall. But I´m not. I move from the deckchair to the couch to the kitchen. Repeat.

I read a little, I knit a little, I feck about on the internet, I eat. Repeat.

Life goes by, without me, and I sometimes wonder if I´m used to it by now. I might be, or it might just be the cocktail in pill-form that dried up the tears.

The knitting has progressed, conveniently in time for my mother´s birthday, and some of the Danish yarn has been turned in to my very first top! I was proud for about 5 minutes, then started thinking about what to make next, and discovered to my horror that nice wool yarn for a sweater costs more than it does to buy the clothes in a shop! It annoys me that the Swedish Ebay, Tradera is crap and has hardly nothing on offer =(

Actually, Sweden still has lots to learn when it comes to selling things of the net and posting it. The point for most is to buy the stuff cheaper on-line since there is no actual store to maintain, meaning the costs can be cut. But then postage in this country is so bloody extortionate that it ends up being cheaper (and much faster) to get it directly from a shop anyway! Having dreadlocks I use a special schampoo I get from a company in the US. They have a few web shops in UK which I used to use, but now when I´m back in Sweden I though I´d find out if there was someone around here who sold it too, thinking that would save me a few bob. I did find a shop alright, but I was shocked when I did the maths! 2 bottles of shampoo + postage from UK would cost me 290 sek, and the same two bottles bought from a web shop based about 20 mins drive from the house, would with postage be 525 sek! Someone is in this to make a buck I tell ya!

Well I might just not bother and shave em all off. I know I´ve said that before, but even though I like em and have had them for 6 odd years they´re mostly in the way and take alot of maintenence. We´ll see

Knitting phase 3 and the spaniard

I woke up this morning without feeling like I got hit by a bus. Only people with ME can understand what a glorios window of relief that is. All I want is to get in the car and leave the house, visit someone or maybe walk in to a shop. But I´m terrified to do just that. What if I run out of steam while on the road, or what if I get through it alright, and then the next morning feel like being hit by a bus would be mild in comparison to the 15 carriage steam train that would sweep me in to conciousness (for the following 2 weeks).

So what will I do with my day of clear head and abillity to get up the stairs without trembling knees? Probably just have a shower and take the opportunity to wash my hair. Cook my poor over-worked mum a nice dinner maybe.

The knitting has moved in to the "prison" phase, i.e. sweater. Last night I had trouble holding my toothbrush cuz my fingers were arthritically stuck in various stitching terminology. Dunno really what will happen to the result in the end cuz when the recipe recommend something that seems like Greek to me, I simply ignore it and move on to the next set of instructions. But I admit it is sort of addictive, maybe I too will be one of those who knit to wrap lamp-posts or parking meters in the end (although I would have to do the domestic ME-friendly version instead and opt for kitchen chair-legs, the old TV antenna and bits of oven)...



My Spanish exposure project is also slowly progressing. I have decided to try and consume all the films by Pedro Almodóvar, and yesterday I saw Dark Habits (Entre Tinieblas) twice. Only in his films can the nuns raise tigers, take heroin and sew glittery costumes for the statue of the virgin. He seems to live in an alternative reality, and I mean that in a good way, no other director can tell a story with so much love and passion in situations that would make anyone else weep with despair. He certainly makes it easier to persevere with my Spanish and next I aim to get a hold of his first film Pepi, Luci, Bom and Other Girls on the Heap.

Midsummer banter (not)

So today is Midsummers eve, and the longest night of the year. It is traditionally celebrated with lots of intoxicants, acompanied by herring here (us swedes acompany everything with pickled herring to get an excuse to get shitfaced, possibly cuz u can´t eat enough of the stuff to fill your stomach and prevent the shots of aquavit going straight to the head).


My folks are on their way out the door to do just the above at the neigbours house. I am invited too, but since I barely can type this, streched out on the sofa, I doubt its a good idea. 2 weeks ago I was starting to feel slightly better. I had a few friends visiting and I could potter about in the kitchen. And I thought that maybe that 3 month long period of hardly being able to shower or even hold up a spoon, was over for this time. But how wrong I was. A few days ago I simply ran out. Again. And now there is no way I could sit at a dinner, because I simply can´t sit up long enough to get shitfaced. Guess I could get shitfaced anyway though, horizontally...


Today I got company. She was a little moaning lady walking in as if she owned the place. And she can have it for all I care...

No the only Midsummer I care about is the Midsummer murders. I was deeply disturbed when SVT 24 ran out of episodes a few months ago, and not all the Miss Marple in the world can make up for it. Its terrible how this illness makes you so geared towards television, and I have already given my word that if I ever am to get well, I will never own a TV again. I´m dying to do and not just watch!

Well anyway, Midsommer murders have had the decency to record a new season, and although its hard to believe that there can be many left in the county to murder, I shall devour my beloved English countryside all out.

Till then, I have joined Lovefilm. I was once a member back in the sun-burnt days of living in L.A., and I think they were alot quicker to send you out films back then. But in Sweden the post is like everything else under our capitalist government, slow, expensive, and soon to be privatised, so you just have to say thank you and wait for the next elections. Anyhow, I decided that just cuz my body is drying up and weakening out, I should at least try to keep my brain somewhat alert. I guess I could have opted for something more suitable than learning more Spanish, since I hardly have anyone to talk to at all nowadays, let alone in Spanish. But I have said it before and I say it again. Shame on whoever gives up. So I began my rental membership with only signing up for films in said language, and have so far recieved quite a few peculiar dics that certainly wouldn´t have made me stop in a usual videostore.

These two were pretty morbid I must say. Voces Innocentes I can even recommend, if you got the stomach for injustice and human courage. About the civil war in El Salvador, told in the perspective of an 11 year old boy.

Anyway, this chicken might splash out this fine friday night and treat herself to a sleeping pill, so she can be rid of it all properly for a few hours.

I bid you adiós.

The knitter and her wool guru

The past few days I´ve actually been feeling half decent, meaning that I can expand my activities beyond just chewing, dreaming of showering, watching telly and listening to audio tapes (that period lasted so long my ears were getting sore). At present I´m living pretty far from everyone I know (not even counting those outside the country), so visits are unfortunately very far and few between. But yesterday my favourite Erika and Björn took their time to borrow a car and drive out here.
In my world Erika is to swedish textile crafts what the stream of new books are to a library. She consumes all known techniques, making like an internal conveyor belt and produce things like there is no tomorrow. Quite a long time ago I´ve been cheating a bit in knitting and quite alot in nålbindning, and lately I´ve sort of felt that it might be fun to take up some sort of creative activity. And when I have my very own wool guru at hand, whats better than giving knitting a go.

My gran´s sister down on a little island in Denmark has recently lost the battle against her own hoarding of crap and the town´s entire squatting cat maffia, and so has been forced to opt for an old folks home down the village. This means that my gran and mum (wearing face masks and near enough burning their clothers afterwards), this spring, tried to save the few pieces of family heirlooms that hadn´t already completely corroded under cat´s urin, feces, or manicurial needs. To get to the point of this rambling I arrive at the grandest solid wooden closet (built by my great grandfather), which at an early stage of the house´s decay had had its doors barricaded with various organic and non-organic matter. This matter had started from the floor and by unknown scientifical reactions grown high enough for the doors to remain shut solid for years of double figures. When my mum shoveled in to this (living?) mass, and opened the doors, she found the entire closet filled with high quality knitting, weaving and embrodery yarn, some of which we brought back to Stockholm.

I now feel it is my obligation to treat this premature inheritance to knitting needles and long evenings of cursing. So on yesterdays visit I left the weaving and embrodery yarns to Erika, and she lent me a "fool proof" but really nice book of knitting patterns. I started out straight away, but decided to opt for something small scale before I knew if my claims to once having known the basics of this art was in fact something I had dreamt.


And behold my new iPod cover! Not that I think I will want to be seen actually using it, the leather cover I already have looks in comparison to the knitted one like scallops next to Tesco value fish fingers (thats Coops blåvitt för svenskar). But hey, now I know I can go straight to prison (sweater) possibly not without passing go (hat).

On "halelujah" companies

In UK there is, I think, a much higher acceptance of alternative medicine and treatment than in Sweden. But since there is no cure for ME/CFS, those who have it tend to spend small fortunes on anything they hear might help to at least alleviate their symptoms. And I´m no different. My last attempt was to inject myself with extremely high doses of a certain type of B12 vitamin. It may sound hazardous, but it was all prescribed by a doctor, and my mum who happens to be a nurse, introduced me to the syringes-in-the-stomach business. Well 3 months later (and costing around 900 sek per 10 weeks) I can tell you it did absoulutely nothing in my favour.

So I was then recommended by a friend of a friend in UK to try a special kind of Aloe Vera gel, supplemented with a number of bi-products from bees. This woman friend of a friend allegedly has ME/CFS herself, and has with the help of these products gone from not even being able to driva a car, to climbing Killimanjaro. So I was introduced to a company that sell these products. Because ofcourse its just not as easy as getting to the shop and getting some. No, you have to get in contact with a registered whole seller, and either buy from him/her "Tupperware party" style, or to be sponsored by that person to become a whole-seller yourself. And although once you are registered you can buy it cheaper, we´re talking pretty big sums here. Its all a bit of Halelujah over it if you ask me.

Once I was registered I got a heap of information about the company, and how it operates in Sweden. I was told that for legal purpouses I am under no conditions allowed to promote these products as containing any form of medicinal properties. They are health-food supplements that can balance us and provide nutrients. The Aloe Vera is giving the body the best possible internal environment in which to heal itself. If I was to make any other claims the company would loose its permits to sell in Scandinavia. Thats all well and good. I just wonder then, are the laws on supplements really that much looser in UK, since this friend of a friend even promoted the stuff as a miracle cure in a national UK magazine?

Anyhow, I´ve been taking all these things for about 3 weeks now, and apart from that it tastes vile, I can´t make any claims in regards to the ME/CFS. Although my stomach is actually feeling really good, and regular. Lots of people with ME/CFS have IBS, so for them it might be a good idea to try this. The bee products (pollen, propolis and royal jelly) are supplements that have been used worldwide for centuries, but since they turn out so expensive if you take as high doses I was recommended, I bought another brand from the local health food store because I got a huge discount when I bought them in bulk. All in all I´ve spent about 4000 sek for everything to last me for 3 months. Thats quite alot when u as me don´t even get sickpension, but have to live on social welfare since the government is dragging out on the application process.

So its never bad to be full up on vitamins, you just have to make your own ideas about the stuff. Luckily they come in more flavours than just natural aloe.

Horizontal eye candy

Yesterday was classic film night in my world. Seventh seal (Sjunde inseglet) from 1957 has been haunting me like an unholy ghost for years, and because I´ve never been that big on Ingmar Bergman (Fanny and Alexander actually always make me wanna hurl) I´ve always opted for something else. But yesterday I was feeling so crap and knackered that I put on the telly already in the afternoon, something I usually try to avoid (think it might be cuz of the old threat mum used when I was little, that ur eyes go square like the telly screen if u watch it too much), and at 5 pm all else I could choose from was re-runs of gardening shows, The bould and the beautiful (season 48?), or football tactics.


But I was happily surprised, and even became a bit philosophical on life myself. I must give the devil some cred for being a pretty skilled tactic (live AND performing). There seems to have been a lot of knights figuring in litterature and films lately, and they all have had their own reasons to doubt. But The Seventh Seal must be the original battle between the blind and un-questioning belief of a higher purpouse, and the desire of earthly sins, and it plays it out with more humour than anyone would even dream of doing in the "Arn" film for example. "du e lycklig du som e så slängd i käften och tror på din egen rappakalja". I say hurrah for Nils Poppe!


But why finnish there. When you have ME everything but just staying in the horizontal position is a struggle, so I went nowhere, and stumbled upon "The Reivers" from 1967. Well I can only ask, what woman can resist them eyes of Steve McQueen? He may have been a right spoilt twat to work with if ur a director, but he is bloody good value :)

The grass is always greener...

So just because it is now over for this year, and so not only me, but also those who are well but still uninitiated in the wonderful, miraculous "Mecca-ish" pilgrim event for all book lovers will also have missed out on it, I´m going to mention the Hay festival. Yes so there, now I´ve mentioned it. Just go there, I can´t describe how good it is. If I get a hang of this blog page thingy I might be able to put up a link to it or something.

Yes anyway, the grass is always greener on the other side. Although in Sweden we´ve had a heat wave for so long now that the grass might be greener a bit further away than that, try UK... Well, cuz for me, that´s where it always seem greener nowadays, that and that it seems to always manage to rain there. A year ago I lived in a little house called Ffos-y-bar, near a little gathering of houses called Pentrebach (a very common Welsh place name, bach meaning something along the lines of "little", but we still have a warrant out for what a pentre might be), a few miles of the A40 at Sennybridge, in the middle of the green hills of Wales rather close to the Brecon Beacons. Anyway, I read somewhere that just the area around Sennybridge was actually the wettest in all of Britain. Well all they would have had to do was just ask us bunch working dogs out staring in the mud 12 hours a day and we could have informed them that such was the case, and saved them all them fancy measurements.





See, its bloody green in the Brecon Beacons...

Again I seem to drift from the point. Even though the swedish lawns might have dried out, the world outside our garden seem like the promised land, where anything is possible, with a cherry on top. In the past month I have worn a pair of shoes twice, once when I had to go to see a doctor, and the other time a shrink, both times I was wheeled there in a wheelchair. A few months ago I would drive to the shops, maybe go to the local cinema, but now I can´t even remember the last time I walked further than our mailbox. My world move in smaller and smaller circles. Its not that I can´t walk further, I would probably make it around the block if I tried. Thing is that I have tried a bunch of times, and sometimes I seem to be ok even the day after. But ME is a sly bastard. It sort of collect the times I´ve gone out and done things and thought it was ok, and then, when I least expect it (cuz I haven´t done any more than usual the days before), I crash in to a month or so of almost not being able to move a spoon to my mouth. So I´m terrified to push my boundaries now. People I know with this illness have told me it took them at least 5 years before they got a hang of how they really were affected. And feck, I dunno how many more of those crashes I can take.

But on the bright side, since I hardly ever wear shoes I am all clear from fungal infections. Jealous?