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.

Big "H" strikes again

Well, as i'm sure you already know, i've been on the ME "choco treatment" just for curiosity's sake (you never know, right?) and also started taking L-Lysine as i heard that might actually be good against Oral Herpes. Well here comes the irony, since three days ago i've developed a pretty bad case of oral Herpes and have even gotten a "fat lip" from it. Been quite a while since i got one of those so i figured it had something to do with the newly added L-Lysine or the choco treatment and stopped taking both. I will start taking just L-Lysine again later on when the herpes outbreak has passed, to be able to isolate exactly which one of the two that actually caused it. Might have been both for all i know.

The day before yesterday i started a 15 day treatment with Valtrex to try and get rid of this Herpes outbreak and already i feel slightly better. It means that it still has a positive and strong effect on me. Guess that's a good thing because i sure do need my Valtrex considering what a inefficient immune system i seem to have.

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.

15% never tasted so bad

Just wanted to let you all know i just received a 85% dark chocolate bar and let me tell you, stick with the 70% GREEN & BLACK'S ORGANIC as this 85% one tastes like crap. To put it mildly. The fact that they only had it in "Extra bitter" might have something to do with it...

I doubt that 15% could make that much of a difference and even if it does, just eat more of the 70% one then.

Yuck.

List of treatment/medication added

Just thought i'd let you know that i have now added a list called "Treatment/Medication" of all the medication etc that i am taking, to the sidebar on the right.

Hopefully someone will find something in there and have some use for it.

Later.

Chocolate CAN be good for you?

Based on the eledged postitive findings of a pilot study to test the theory that a daily portion of dark high percentage chocolate reduces the effects of fatigue (Chocolate 'can be good for you', York Press, 3 October 2007) over at Hull Royal Infirmary, i set out to try for myself despite the criticism found here - http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0710a&L=co-cure&T=0&O=D&P=2655

Yesterday evening, a "DARK 70% GREEN & BLACK's ORGANIC" dark chocolate bar reached me. I have since realised the study included a 85% dark choco bar, but the only 85% dark choco bar that mom could find was not organic and therefore not an option. And hey, could a 15% difference really add up to all that much in terms of result? Well, since yesterday i've had a few small pieces and will continue to consume it for the eight weeks the study lasted and report back to you as time passes.

I don't really expect any postive results but hey, it's a health-reason to eat chocolate for cryin' out loud :-)

On another subject, i plan on adding all the medication i take to the sidebar to the right of the Blog under my symptoms later on this evening. Maybe my progress, especially in regards to my pain as well as general improvement in fatigue compared to 2 years ago, can help someone else this far gone in ME out there. Obviously i have a looong way to go as i'm still bed-bound, but it's progress nonetheless and very noticeable at that. I used to not even be able to use a urination bottle by myself. It was that bad and i'm grateful for the improvement since then to say the least, despite the fact that my progress still hasn't gotten me out of this bed. Yet.

Take care.

Labels

Hi again,

thought i'd mention that i've added so-called "labels" to my Blog, which allow you readers to quickly search for Blog entries filtering them by what i have labeled the specific entries with. For example, for an easier read, i have labeled all Blog entries containing fragments of my ME story, with "My story". Clicking that label way down to the right in the label section, should lead you directly to the entries containing said fragments.

As shown below, the numbers next to the label words indicate how many Blog entries there are with that particular label.

Apartment (2)
Colds (1)
Diagnose (1)
Exercise (1)
Healthcare (3)
LSS (2)
My story (3)
Research (1)
Symptoms (1)

Later, bedtime for me (pun intended).

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.