Wednesday, February 20, 2008

The move

Sorry for the lack of updates, been awfully stressful lately regarding the move and it's hit me hard. My mom and i have been fighting more then usual, which was a lot to begin with and it too has taken it's toll. I really wanted to not have that kind of stress around me but unfortunately i'll need mom to tag along as a personal assistant as otherwise i won't have enough money left over each month for food. She's promised to help me financially but can only do so if she keeps some hours each week as one of my PA's. Sigh...what can i do?

Been trying desperately to find work that i can do from bed and also in regards to my hard time concentrating, but have come up with basically nothing.

As i mentioned earlier, all three PA positions have been filled including mom and what's going on now is that i'm trying to get enough help to move all my stuff to the apartment at the same time as i'm selling off most of my stuff to fund the new necessary furniture and kitchen appliances. The extra workload of helping me pack the stuff for sale has understandably caused even more strain on my mom and she sure is taking it out on me big time. I get to hear i'm fat, lazy, ugly, the devil's spawn etc etc and she gets to hear the B-word as well as many other variations, right back. And on and on it goes. I WISH i could package everything myself and i WISH i didn't have to have two complete strangers in my new home running around and my mom whom i [although i understand her reasons] sometimes utterly despise, also present in an apartment that was going to be my fresh start away from all that stress. I WISH. Wishing is the only thing i can do it seems and i always end up feeling completely powerless as nothing ever goes the way i plan. I can't enforce my will from bed and always end up getting overrun, even in the move to my own apartment when it comes to all the details surrounding the move. I'm utterly helpless and i hate it.

In contrast of all that, i'm thrilled that so many things have gone down lately that will ultimately increase my independence - the move to my own place, the electric wheelchair and finally the other day i noticed that the high pitched tones are heavily reduced on my new cell-phone when on the lowest sound settings, to the degree that i am actually able to stand the sound of other peoples voices over the phone. Most likely what ever filter in the brain that is responsible for filtering out damaging tones in noises isn't doing it's job for whatever reason and it's a horrible handicap as not only does loud [especially] high-pitched sounds feel like someone's stabbing your brain with a serrated edged kitchen knife, but people look at you like you're insane when wearing those ridiculous little ear protectors. They rarely say anything, which is worse then if they'd just ask why you're wearing them and instead they pass judgement without any kind of basic communication - similar to the evaluation procedure used in my case when establishing each and every one diagnosis during my stay at the various psychiatric facilities i was sent to against my will before cleared of any and all psychiatric causes to my illness. As i've mentioned earlier, i've received diagnosis from people whom i've never even met, only so they could justify getting me out of the way, making me anyone else's problem but their own. With that came me being sent to the next stop, the next useless and abusing facility to drain my already low energy levels needed for proper rehabilitation and take away from my chances of ever getting back up on my feet.

As i'm typing, one of the PA's is helping me package some glass shelves belonging to my glass cabinets. I wonder what she thinks of me and my condition. After all the talk that ME is a so called yuppie decease etc. One can't help but wonder what people around one self are thinking. It's a real shame, not only that some of the more narrow-minded people that ever walked this planet are getting as much attention in their ramblings on ME/CFS but also that so many lazy bums use chronic illness diagnosis to gain some sort of financial security, thus when caught making the people that are really suffering from the condition, look bad.

I expect that the ordeal of moving will be done with within two to three weeks as there are still plenty of stuff in need of moving but not that many people to move them.

Actually finally got to visit my apartment after having received the permit to travel with handicap travel busses since the transport company that took me in the past when i needed to visit a doctor or hospital, doesn't take you if your destination is a non-healthcare location (like ones apartment). Unless of course, you're going home to your apartment from a healthcare location. Can you say "red tape"? I can.

I was disappointed to learn that the handicap travel buss personnel weren't as professional or as knowledgeable as the previous transport company in regards to how to carry someone laying down on a stretcher. As a result they dropped me several times both coming down the stairs and on our way back upwards on the journey home. i sure have the bruises to prove it.

Over and out, for now.

Wednesday, January 23, 2008

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.

Sunday, November 18, 2007

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...

Sunday, November 4, 2007


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.


Wednesday, October 31, 2007

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.


Saturday, October 20, 2007

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.