Comments on: On living with pain and taking care of one’s self

By: SarahMC

SarahMC — Mon, 30 Nov 2009 15:58:59 +0000

Hi gherkinfiend. I’m glad you liked the post.
To answer your question, my opiates don’t make me sleepy. I take a fairly low dose of morphine twice a day, along with a very high dose of an anti-spasmodic (which does make me kind of sleepy but not enough to keep me from working or whatever).

By: gherkinfiend

gherkinfiend — Sat, 28 Nov 2009 14:25:20 +0000

SarahMC, I can’t say anything useful about your situation since I’m in the UK, but thank you for posting this. You’ve made me feel much better about my invisible illnesses. I’ve always felt ashamed of not being fit and healthy while in my teens and 20s.

I haven’t workd for almost 6 years due to these problems. Thank God for the NHS and the welfare state in the UK, but sometimes I doubt I’ll ever have a job and financial freedom again because of the gaps on my CV and the added difficulties of hiring me.

Plus drinkyrose (and SarahMC) do the opiates just make you want to sleep all the time? How does you manage to wrok around that alone?

By: JennyK/Benevolent_Dictatrix

JennyK/Benevolent_Dictatrix — Wed, 25 Nov 2009 14:13:10 +0000

If anybody thinks they may need an accomodation at work or is curious whether accomodations exist that could help them, I recommend checking out this website: http://www.jan.wvu.edu/indiv/index.htm. They have fact sheets on various disabilities, which could be useful when trying to explain your condition to an employer. For example, here is their page on chronic pain: http://www.jan.wvu.edu/media/ChronicPain.html. JAN is affiliated with the Department of Labor, and I have heard their presentations at a couple of work-related events. One thing they always emphasize is that most accomodations are low-cost or no-cost. If you think an accomodation could help you, I really encourage you to do some research and present your findings to your employer.

By: WashingMyHair

WashingMyHair — Wed, 25 Nov 2009 00:33:13 +0000

K , I used the spoons metaphor ;(

By: K

Tue, 24 Nov 2009 23:23:09 +0000

I don’t have anything very deep to say, just thanks for posting this. I also have an invisible disability and sometimes would rather have a giant sign on my head declaring it to one and all. And thanks for not using that inane “spoons” metaphor–I hate the way it whitewashes the issue. Pretty soon every sports guy in the country is going to be saying of tired players that they “lost their spoons.”

By: WashingMyHair

WashingMyHair — Tue, 24 Nov 2009 23:03:24 +0000

Flackette – you’re symptoms are classic under diagnosed hypo-thyroid issues. Even if your thyroid numbers are in range of “normal”, they may not be normal for you personally. I know several resources that may be able to help you that can be fairly inexpensive, if you’re interested.

By: WashingMyHair

WashingMyHair — Tue, 24 Nov 2009 22:58:39 +0000

SarahMC and all, I hate to know that others share what I’m going through, but it’s always good to know you’re not alone. I’ve suffered for several years with symptoms that affected both my body and my mind. After many doctors and lots of research, I found the root of the problem and have been able to manage it with some success ever since. Sadly, I find that most of my friends and family don’t understand, or even care all that much. It’s the ole, well you don’t look sick” bit. I sometimes feel that I have to have literally be in a wheelchair for them to notice. If you’ve ever ready The Spoon Theory, that’s how I often feel.

These days, mostly, I’m dealing with the physical issues pretty well, but the emotional scars that it’s brought me are a long ways away from healing. I truly hope everyone going through something similar finds the support they deserve to not only help them through bad times, but also share the good times.

By: KathleenB

KathleenB — Tue, 24 Nov 2009 22:50:51 +0000

I’ve had days where I’ve turned to Hubby and told him that I’m close to the edge of my ability to deal with the amount of pain I’m in. Being the prince he is, he’ll nod, turn on the heated mattress pad and get me painkillers. I am, in fact, skirting that edge right now – this has been a truly shitty day.

By: betterfishtofry

betterfishtofry — Tue, 24 Nov 2009 20:27:46 +0000

I have gastro intestinal disorders, which are pretty invisible…unless I am having what I call an “attack”. Then it pretty much scares people and causes them to say things like “wow if I were I would kill myself”. This is really not as comforting as I think they think it is. I am lucky enough to work at a university and have utilized accommodations. If I hadn’t done that, I would be in jeopardy with my job. I wasn’t aware of those things when I first graduated, and as a result, lost my first job out of college.
But to second and third and fourth, there are things employers are REQUIRED to provide and it could really help you. Good job continuing to hang in there, stating it’s hard is a no brainer.

By: JennyK/Benevolent_Dictatrix

JennyK/Benevolent_Dictatrix — Tue, 24 Nov 2009 19:08:09 +0000

I just want to thank Sarah and everyone who chooses to speak out about invisible disabilities. I began reading people’s stories about this phenomenon a couple of years ago, and it has helped me identify and change some of my more judgmental attitudes. As an example, my old reaction to someone who takes the elevator one floor at my office was to be annoyed, but now I remind myself that the person could have any number of invisible disabilities that makes walking stairs difficult for them. I appreciate people speaking out and hope you know that you really are helping to change attitudes.