Friday, May 1, 2009

The pill that retains my humanity (Blogging Against Disablism Day)

The LDN blog is mostly inactive these days, having fulfilled its purpose, but I wanted to take part in the Blogging Against Disablism Day.

I hate ableism, but sometimes I wonder if I'm guilty of it myself. When I speak about low dose naltrexone, I always mention that without it I would most likely be in wheelchair, possibly even in a nursing home (or dead because I wouldn't be able to get into a nursing home and no one else would take care of me). LDN didn't change me from disabled to nondisabled, from sick to healthy, but it meant the difference between visible and invisible disability, between severe and moderate illness.

When I say this, I'm aware that it can reinforce the common belief that ending up in a wheelchair is the worst thing that can happen to a person, that it's the end of your life as you know it. I don't subscribe to this belief. Ending up in wheelchair wouldn't have ruined my life, but it would have severe restricted it - mostly because of the way the society treats people in wheelchairs, including four major areas: a) how strangers would treat me b) how friends and people I know would treat me c) the physical accessibility of my environment d) the financial support from the society. Every one of these factors would have been a disaster. It's well likely I wouldn't have even got a wheelchair, because in the country where I live my illness doesn't exist. I feel the social model of disability is very accurate, but it shouldn't be.

Ableism has made me feel isolated from the society. I only have an invisible illness myself, but having a good friend who's in wheelchair (for the same illness I have) and almost having ended up that way myself I have become painfully aware of how awfully the Finnish society treats people with visible disabilities. It's not really the staring that's the problem. People in wheelchairs are stalked, ridiculed, threatened and treated as invisible. I often imagine myself in wheelchair and how my friends and other people would accommodate me. The sad truth is that most of them couldn't.

Obviously, this is not just a problem in Finland, but it isn't so bad in some other countries. E.g. in the Netherlands wheelchair are more of a part of normal reality, as if you e.g. break your ankle, you're often given a wheelchair to move around in. It's nothing weird and doesn't signify "a life ruined forever". Wheelchairs are everywhere. This is one of the reasons (although definitely not the only one) I would like to move to the Netherlands and hopefully will. It's just difficult for people to understand. You're not in wheelchair, so why would you move somewhere else just because they are more accommodating of people in wheelchairs?

The reality of disablism is very black and white, us and them. We were visiting a family friend of my boyfriend's, who is a woman in her 50s or 60s. We were talking about her apartment and she mentioned the fact that these days all apartments must be built wheelchair-accessible. "But why? It's not like everyone is handicapped." The question makes sense to most able-bodied people if you don't think about it too much. Indeed, why? The disabled are just a small minority so why isn't it enough that we build, say, 25% of new apartments to be accessible? Aside from the fact that accessibility doesn't hurt anyone, this question entirely ignores the possibility that even if you are able-bodied, you might be visited by a person in a wheelchair, and that the person in a wheelchair might want to e.g. use your toilet. But most able-bodied people wouldn't even think about this. The distinction between "us" and "them" is so strong that you don't even think about the possibility of having a friend in wheelchair.

To get outside the wheelchair talk and the conditional "what ifs'" for a minute, I'll try to explain the current reality of my illness. Disabilities are not created equal, which everyone who's disabled, at least those disabled by chronic illness, already know. I have CFS/ME, a severe neurological illness similar to MS, but about 5-10 times more common. In my case it was also progressive before I started the low dose naltrexone, which halts the progression of MS in about 90-95% cases and luckily it has done the same for my illness. If I did have MS, it would have been very easy to get on disability. But because I have CFS/ME, which is this country is not considered to exist, even though the WHO has recognized it since 1969, it is impossible. I've been on a sick leave for years and I've never got a penny of the money I'm legally entitled to. I would most likely win if I sued the state, but it would also most likely kill me, and the court process would cost thousands of euros which I don't have.

I'm not angry about being ill or disabled. But I am very angry about not having any human rights in this country. I live in a country that's supposed to be "socialistic" (which is actually bullshit - I certainly wish it was). If it wasn't for the kindness of other people, I could have never afforded the doctor visits that got me my LDN prescription, and I would probably be too ill to take care of myself - with no one else to do it. If it wasn't for the kindness of other people, I could well be homeless at the moment. Luckily, I am not, and I'm very grateful for that. But the mere fact that you have to depend on other people's kindness for support, when you're not supposed to, when you're legally entitled to financial support that you can't get, is very dehumanizing. The mere threat of ending up homeless - which has been a part of my life since I was 16 - is dehumanizing, although obviously not as much as actually ending up homeless. I'm supposed to be a valid human being, equal to others, but this society certainly doesn't treat me as such.

Many people see me as a completely normal person. Many don't even know I'm ill, not because I keep it in secret in any way, but because it's not something I just blurt out "oh by the way, I'm a crip" or because they know that I'm ill, but because I look normal they conclude it doesn't really affect me. That's fine with me. But still, I can't shake the reality that while I'm often a part of "us", I'm also in many ways a part of "them". And if it wasn't for this compounded 4.5 mg capsule of naltrexone hydrochloride that I take every night before going to bed, I wouldn't be a part of the normal society - at least not in this country. The existence of that pill makes me immensely happy and grateful, but it should not be the only thing that makes me retain my status as a human.

Thursday, March 5, 2009

2nd LDN anniversary

No worries, I'm not dead yet - just not much reason to blog, except for today. I've been on LDN for two years now and still no illness progression. Unfortunately I've developed quite a few new symptoms during the time, four fairly serious one since last June alone, but my functionality is still quite similar. The worst new symptom is overt adrenal insufficiency, which means I have to take hydrocortisone most of the time and easily get hypoglycemic. I've had a few adrenal crises too, but luckily nothing requiring hospitalization. Haven't had any infections in the last year, except for a bout of probable bronchitis, which went away on its own.

Currently I'm taking the following meds and supplements:

  • LDN 4.5 mg
  • piracetam 2x1,200 mg *
  • baclofen 10-20 mg *
  • melatonin 1.5 mg
  • undenatured whey protein ~20 g
  • creatine ~2 g **
  • D-ribose ~10 g
  • glutamine ~3-6 g **
  • acetyl-L-carnitine ~750 mg
  • Q10 100 mg
  • R-lipoic acid 100 mg
  • magnesium 350 mg
  • vitamin D 50 mcg
  • vitamin C 2x500 mg
  • multivitamin
  • probiotic
  • Siberian ginseng (for cold prevention)
  • ashwagandha (for sleep) **

* currently not taking this as I've run out, hoping to get more really soon
** may ditch this soon as it doesn't seem to do anything or is redundant

and as needed:

  • hydrocortisone 2-10 mg
  • celecoxib 200 mg
  • bromelain & quercetin (for preventing post-exertional muscle pain)
  • licorice & rhodiola tea

I no longer have to take the nimodipine (which restored most of my cognitive function) and I still retain its benefits - isn't that grand?

I haven't been able to play badminton since the last time two years ago, except for a short outdoor stint in the summer. Hopefully more this summer. I did go swimming a few weeks ago, for the first time in years. To my surprise, I was still able to swim. I had assumed I couldn't do it due to the residual muscle weakness I have, but I could. And because of taking a lot of bromelain, I didn't even have post-exertional myalgia. Just some fatigue, not bad.

I'm also happy to report that someone from my Finnish CFS/ME forum who started LDN recently has experienced great improvement. She has had fairly severe CFS/ME to the point that she hasn't been able to do much of anything at all. Now she can take long walks without much repercussions, the oversensivity of her senses has significantly reduced and she can watch TV for the first time in ages. Her asthma (or fairly severe breathing problems which have been diagnosed as asthma) is much better and she is also experiencing some relief in the food allergies that CFS/ME has caused, which previously prevented her from eating almost all foods. I guess it's needless to say she's very happy!