A New Year

First of all - Happy New (one that will hopefully see more progress for ME and ME related research) Year.

Secondly - i apologize for the lack of updates. There's been some seriously difficult circumstances surrounding the move to my own apartment and i am still in the same place, in the same bed as i am typing this. As i see it now, there's yet another month to go before i will be able to move in. Can you say "red tape and narrow-mindedness don't mix"? *Sigh*

What's been going down since i last updated the Blog, are my attempts to get the people in charge of making the decisions that could ultimately make my life a lot easier, understand my needs and help me to the best of their abilities. Unfortunately, this isn't the easiest of tasks. What i've finally accomplished up to this point is - all the personal assistants are hired, they will widen the doorways and install a bathtub for future rehabilitation purposes and it looks like i finally (finally, finally) will get my electric wheelchair.

Not bad for a handicapped person eh? Well, it took it's toll. The last month has been dreadful at best with more up's and down's then that Magic Mountain ride i went on when i was 15. Now that was a roller coaster. Damn. The herpes outbreaks have come close together unfortunately and brought me down to a level i haven't been at since a few years back before things started to turn. I've now finally reached a level again where i can pick things up on the web again - contacts and such. I'll try to get back to telling my story. I need to.

I have caught a few breaks as well in all the dread - the three out of three PA's i interviewed last week were all great. Really. There is no need to continue interviewing further candidates which saves me time. I even had to let one of them go and only hire two of them as my mom will be staying on as a PA for the first 6 months mostly to do financial errands and such i do not trust the others with yet.

Now it's late dinner time. I hate eating laying down in my bed. It's awful.

Later. Take care of each other and please - open up your minds to the possibility that we do not know everything and listening (really listening) to what other people have to say, might actually give you the insight enough to actually be able to help them properly. Narrow-mindedness is a disease and we need to fight it.

A break at last?

Although i had to take a loan the size of Texas to accomplish it and will have to cope with accepting charity from my remote family to be able to afford food due to the cost of not only the monthly rent but also the high loan interest, i'm finally [if all goes well] moving in to my very own apartment this December. Well, the loan hasn't actually cleared yet but the bank gave me an official "promise of loan" so i should be good to go. I wouldn't have gotten the loan if my mother hadn't vouched for me economically and i believe she did it as she is just as tired of the situation as i am.

Last Thursday, i went by transport to look at the apartment before signing the papers on site and i loved it. A wee bit on the small side for the price but newly renovated and very sober. After the trip i was completely out of it with fever but it and every other strain put in towards the move will be worth it in the end obviously. I can't wait as i see some great improvement in my health in just the change of environment. Finally i'll be able to spend more energy towards more important things evolving around the relief of my symptoms and improvement of my overall health as much as possible.

Some more good news for a change - I might actually be getting that electrical wheelchair i've been fighting so long to get. The person over at the LSS people in charge of deciding who gets an electrical wheelchair and who doesn't, is coming for a visit. Can't see how she could not grant me one seeing as it would mean a world of difference in my struggle to become more independent.

I might actually be able to drive out on my very own balcony in the near future, just to watch the sun set. Believe that??!! I still haven't had the health to sit in the lounge chair beside the bed for more then half an hour to this date and not too often to say the least, but i'll get there and will be able to reach the point where i can drive out to see that sun set. I know i will.

But i find myself reluctant in my joy as i know how i always set myself up for a fall that way when things later start to go south. Well, in any case things are moving forward and looking up a bit.

Here's hoping...

Warmth

I don't know how much more of this i can take. The insults are the worst right now and i've just stopped throwing them back all together. It's no use as it only ends up being more cannonfodder for her. If i didn't have the cat, my only source of giving and receiving love, i do not know if i could stand the coldness in this house until i finally get to leave for my own place.

I can do this just fine without support, god knows i have had to since i got sick, but to receive these continuous insults is heavily straining my psyche which is already burdened by the highly frustrating situation at hand. Let's get one thing straight - i am not, nor have i ever been depressed. I just don't seem to have it in me and always manage to carry on just fine no matter what without suppressing it for later inwards or outwards emotional explosion. I deal with things right away as they happen and it allows me to brush most things right off my shoulder. This ability have come in handy during this, let's call it test of will to live and will continue to aid me in my struggle for better health but the ability to effectively deal with this journeys emotional torture does not mean it can't break me. It's starting to.

I have a few people who i email with from time to time, but the real warmth i feel i need so badly has not visited me for quite some time. My mother and i are at war with eachother and have always been i guess. She's always been very clever when turning people against me and using easily swallowed cliches like telling everyone i had "teenage troubles" and so forth when we argued in my early teens, when in fact the only trouble i had was being stuck with her as my legal guardian. Living with her has always been, well let's call it interesting and a very unsettling experience for both me and my sister.

Here comes the best part. When i finally turned 16, had a job i loved, finally found an education programme i was passionate about and actually got in to after hating the first one i chose after junior high (things work somewhat differently over here) and was ready to leave everything behind after having endured and grown stronger in the process i was dragged down again, back into the bucket - that unsettling childhood coupled with the family therapy session mom dragged me to as an early teen where she convinced a thereapist i was such a beforementioned "troubled teen", when they eventually found out through my father, was what they explained my condition with when no apparent somatic reason for why i was sick could be found. Great. Super. Way to go dad, just what they needed to ship me off into oblivion. Oh, but first however i landed in the land of psychiatric care where they shared the information with me that i was actually making this whole thing with my poor health up just to "get the attention of my parents who never gave me any real attention whilst growing up".

Makes sense, right? Right.

One question though: How did we, the human race, ever make it this far?

Beats me.


I don't know what i would do without this Blog. It serves as a great way to let off some steam now that i start to feel overwhelmed in all of this. Even if no one reads this, it will still serve a purpose.

Later.

And the circus stays in town for one more night

Hey there. Haven't had the health to post an entry for a while.

This whole apartment fiasco is keeping both me and my immune system busy. A lot of physical strain in front (or should i say under?) of the computer and a lot of oral herpes outbreaks later, i've managed to both get somewhere and absolutely nowhere in my quest to find an apartment in Stockholm. The Valtrex 15 day treatment have done a good job though and for the past few days i've felt a lot better with three days to go on the treatment. I know the outbreaks would have been a lot worse if i hadn't been on Valtrex, that's for sure.

Also i've started to notice that when i strain myself, really strain myself, my nose gets runny. Actually happened a lot before as well but now that it happened recently i got reminded of it.

Anywhooo...i've come to terms with the fact that the part of the state and the LSS people where i live can't to squat for me when it comes to an apartment and the que i mentioned earlier won't give any result for another 3-4 years considering where i am in the que at the moment and how long the poeple who are ahead of everyone else and are actually getting apartments, have been in it.

The solution you ask? Unfortunately the solution isn't a knight in shining armor who'll make the LSS people work their rear-ends off to help me take back some of the control and independence i once had in my life but rather to have someone take a huge bank loan on my behalf and actually buy an apartment. There is no other way. Now i look forward to me hopefully someday getting to the point where i can call myself at least semi-healthy, mixed with the fear of the possible inability to pay off the huge mortgage on the apartment and being completely swept clean by the high interest.

As if i don't already have enough things to worry about. I'll most likely not live all that long even IF i manage to get to that semi-healthy state. One of my big dreams of having children is gone as ME is most likely a genetic condition and i couldn't possibly "take my chances" with passing this horrible faith on to my child. I have scars all over my body from all the mysterious stretchmarks so i won't exactly be visiting any of my beloved beaches nor will i most likely feel like showing myself doing what i loved doing best - swimming. But hey, if i ever get out of this mess enough to actually visit the beach, let alone make it out of my bed, i doubt i'll care much about how i'll look.

That's the only remotely positive thing about this whole mess - it sure has put things in perspective.


Later.

Back to square one...again.

I'm having some seriously low times right now. I am so sick of having to struggle so hard only to achieve so little if anything at all. It wears you down, especially when you can't say -"well at least i have my health!".

Things are getting worse at home by the minute and there's a lot of hating going around. When you're stuck in such a straining situation together for such a long period of time, you're bound to eat at eachother, feelings to go sour and If you didn't get along all that well to begin with on top of that - well then things might get like they are now. For many years have i put up with it solely because i've had no other choice but no longer will i let it eat at me, my health and my rehabilitation possibilities they way it does. That is why i am now in there, the system, fighting again. This time not for a diagnosis and for doctors to listen, rather a place to call my own.

I just received an email saying those two apartments i mentioned in an earlier Blog entry, are not available to me. The LSS-head was "mistaken" and the company that owns the apartments in question weren't to keen on letting those attractive apartments go to the LSS-people (i.e - handicapped people are usually unemployed, on financial support and less likely to pay on time).

So, what now then? Well, here in Sweden we have this que system where you get que points based on how long you've been standing in it. One day gives you one point. The more points (days) you have, the more it's likely you'll have more points then the next bloke applying for the very same apartment. You get the point. Let's just say the odds of me finding an apartment the traditional way, outside of the help the LSS people are supposed to be giving me, are quite small as every apartment have some 300-400 people applying. My points usually land me a que position of #200-300 in line. Not too promising i'd say. Perhaps in 5 or so years i'll have racked up enough points to be able to find me a place where i can avert this ongoing crisis, but by then it'll have been too late.

That's what the LSS laws and people are supposed to be for, enforcing my rights to have this situation taken care of as soon as possible as my health actually depends on me finding a new place to call home.

Too bad no one takes it seriously enough.

Hit and miss

Well, been more then a week or so since my last entry. Would like to write more but it's hard. Have had many emails to write and frankly, it's depleted my energy depot.

I told mom she needed to make them understand our situation VERY clearly if i was ever to be taken seriously by the LSS people in my quest for an apartment as clearly, for some reason, they weren't taking me seriously. Guess they figured i was just another cranky youth wanting to move away from mommy, despite them knowing what my situation is. Sheesh. After mom having made that call, last week, mom received a phonecall from the head of the LSS people regarding there being a possible apartment for me - an [by Swedish standards] 3 room and kitchen apartment. What that referrs to exactly is two bedrooms, one livingroom and then of course the kitchen. However, what would be more ideal for me is one really big bedroom instead of two smaller ones, one smaller livingroom and one kitchen. That is due to the fact that the electrically adjustable hospital bed [and the need to push the desk that holds my computer, over the bed] creates the need for a lot of room to maneuver in. But hey, at this point i aint' exactly picky so i was pretty excited nonetheless. That is, until she called again today [as well as emailed me directly, which is something i try to get as many people i deal with to do as possible instead of letting my mom become some kind of middleman] to let us know the details of the apartment.

First of all, the apartment was located on the groundfloor/story of the building which is a big no-no as if the apartment gets broken into (which seem to happen a lot with groundfloor apartments in not just the particular area this apartment was located in but overall) i wouldn't exactly be able to defend myself to well. Secondly, it wasn't a handicapp-adjusted apartment, but she assured mom that they would handicapp-adjust whatever apartment i ended up in later on. Good, now they're catching on. Better late then never. The other thing was that, as if the monthly rent wasn't high enough, the electrical bill wasn't included in the stated monthly. Not exactly ideal for a 23 year old with sick-pension living on what the Swedish government states as being the very minimum that a person should have to support him/herself with.

However, the LSS-head (as i'll call her from here on out) stated that there were indeed a possible two other apartments, this time two 2 room and kitchen apartments with a lower rent and in the same location as the first one. Sounds promising, but i dare not keep my hopes up regarding these matters, not any more. I've learnt to expect the worst, to be less disappointed later. It's sad but something my journey has shaped me into doing.

Until next time, take care of yourselves and i'll try to do the same.

Current situation explained

Things are not well at home. Haven is a word i do not know, nor do i know the words home and peace when put together anymore. It's a long story, the one about me ending up back at the house where i once grew up, with my mother as my caretaker/nurse/personal assistant and a story that i will share with you one Blog entry at a time. Just thinking about starting a single text to tell the whole story in one single Blog entry, gives me nightmares. It's just not doable, at least not without mushing it up into a senseless piece of jibber jabber anyhow. I wouldn't be able to concentrate enough to know what i'd already written/told and what i hadn't. It's a story filled with a lot of pain, misery, mistakes and misguided attempts at helping and worthy to be told right and not in some rushed Blog entry in the middle of the night.

I'm having a hard time deciding on in what structure i should tell the story, but you'll just have to bare with me as i start in this Blog entry and hopefully i'll be able to not mush everything together to much.

The present.

I live with my mother. I have my own room on the top floor out of two floors and i've hardly ever left it since i came home from those horrible years of bouncing around within the Swedish healthcare machine. Conclusion? The machine is broken. Oh, it's still running that's for sure, but it sure isn't going where it's supposed to.

Well, back to the present. I eat, sleep, wash and do my "bathroom" visits in the confines of my bed. I've even had a custom desk made that hold my computer and can roll over my bed so that i can manage to have some contact with the outside world. I can guarantee you one thing; if i ever get to leave this bed and get through all of this, i'll sleep on the floor for the rest of my life. I hate beds. One is my prison. I know, my prison is my illness, but i see the bed as the symbol of my imprisonment - ergo i hate beds. The room has gotten smaller for each year that has passed and soon it'll squash me if i do not find a way to leave. Leaving, however, is a hell of a lot harder then it sounds. For me at least. You see, i can't just stand up and walk away when confronted with a situation that's not to my liking or has a negative effect on my health. I can do nothing but lay there and take it head-on. May it have been insults, physical or mental abuse during my bouncing around in Swedish healthcare or just the plain old frustration of hearing young healthy people my age having the time of their lives outside while i'm stuck in here, in the ever shrinking room. This causes a problem when trying to "stand on your own legs" (not sure if pun was intended, let me think about it) as you have no income to speak of save for the minimum living standard money they pay out to people like me who for one reason or another had to "retire" early but in my case i got sick so young that i never had a chance to make enough money to actually get something even remotely impressive (to say the very least) out of that early retirement. For situations like mine, handicapped person seeking own living quarters, the part of the state where you live in is obligated to provide you with a handicap-adjusted apartment. Well, that too isn't as easy and a sure of a thing as it may sound. Just like everything in my life since i got sick.

The LSS staff (LSS = Law about Support and Service here in Sweden, but let's call them "it's-their-job-to-inform-me-of-what-rights-and-options-i-have-in-all-of-this guides") in the part of the state where i live that are assigned to me do not quite seem to see it fit to prioritize a 23 year young man over 80 year old men when it comes to assigning the handicap-adjusted apartments they have. I'm not saying i think i'm more "worthy" of an apartment then said older gentlemen, but when they string me along with excuses for months and months (and months), saying they're doing everything they can for me only to see that they're in fact skipping me for some mysterious reason and giving them to...said older gentlemen. Why? Well, after a string of communication with the LSS guides via email it seems that they are so economically comfortable with me living at home being "taken care" of by my mother and them because of that fact not having to hire multiple personal assistants (like they would have to if i moved to live on my own), that they are actually skipping me on purpose. Of course they didn't say that out loud, but it doesn't take a genius to figure that out. Especially after receiving answers both avoiding my questions and ducking them alltogether. They're just not interested in helping me out in that department, despite me having thoroughly explained to them that the situation for both me AND my mother is unacceptable to say the very least with my already rocky health deteriorating as a direct result to the unstable situation at home. What said "unstable situation" referrs to, is an incredibly strained relationship between me and my mother developed from having had a very much other-then mother-son relationship with her during all these years of personal hell. She's been with me every step, whether it's been to my misfortune or later on in all of this, my fortune - she's been there, having gone through a lot of hard times her self. Why misfortune, you say? Well, that's another part of the story as we're currently in present times still and i wouldn't want to mush up the story now would i.

Back to the LSS people. They just do not see how a 23 year young (and i say young to illustrate a point, but i guess you've fiured that out already) man could be worth aaaaall that effort to give him a chance at life in comparison to the elderly that REALLY need those handicap-adjusted apartments. Hey, forget the moral obligation here, it's their JOBS to help me out with a shot at at least a decent life whether i'm to...young?! or not. Jesus H Chist and his discipl...well you get the point. Has the world gone mad or is it just that you see all that's wrong with it when you need it's help, it's humbleness and love? Well, either way i'm in for a doozy...again. The fun never ends.


Over and out for now, take care of yourselves and please, for cryin' out loud, enjoy the little things in life like just being able to jump out of bed in the morning and straight into a shower. Oh god i miss showers. Running water on me. And the sun in my face. And walking. You gotta love how being in a situation like this, all robbed of the things you oh so took for granted, puts things in perspective. If i ever get out of this, you can rest assured i'll do my very best to try and not take the precious gift of life for granted. As it is now, that's somewhat hard and many times when having been all alone in the healthcare machine have i wished myself no longer due to experiences with the combination of severe pain and a total disregard for treating another human being with respect as well as dignity. There'll be many horror stories in this Blog, that's for sure.

Money? Popularity? Finding the one true love? Sure, those are nice, but i think i'd rather have my health.

Later.