Sometimes the hardest part of having a chronic disease is being gracious to the people who are patently watching out for you and your health when you are clearly not doing it yourself. Damn MS.

I over did it the other day and a number of caring and loving people were quite emphatic about the fact that I was not paying adequate attention to my need for sleep, for rest and for appropriate nutrition. So sayeth a random status of mine on Facebook. 

People being people and me being me, it was a hard thing. Those who know me well can approach me more directly – they can simply say “you must sleep. You must rest. This is not negotiable. How can I help you with this?” They will show up with food and put it in front of me and they will remind me to drink water.

And they will understand though-out the whole process that I am frustrated – I am frustrated by a chronic disease that inhibits my ability to do all the things and be all the things to all the people. They will understand that behind the frustration is embarrassment. I lived with a hypochondriac and mentally ill mother. It mortifies me that I get so busy that I am unable to remember the need to eat and drink water, and however grateful I am for the kindness of those who simply bring me food and remind me to stop for water, it makes me angry that I cannot figure out how to manage my workload and still eat and drink on my own. I was forced to caretake my mother – she used (apparent?) illness to force others to meet her needs. I do not wish to abuse others in this way.

I have failed twice then – in that I cannot do what I used to do, and that I had to be rescued and cared for because I attempted a thing and could not manage my own health like a grown up.

A friend nailed it on facebook – how it is hard to be scolded for doing a thing that I know I shouldn’t have done in the first place. My facebook status was an acknowledgement of that and an apology that I was not as gracious to those who care for me, as I could have been when they reminded me to take care of myself.

I got an email on Facebook from someone who was suggesting that my cure to MS could be found in . . .

Look, it doesn’t matter.

I have been singularly blessed – I have had very little in the way of pseudo-cures offered to me. Possibly I am lucky, most of my friends are science-y and aren’t into strange diets or odd herbs or things like that. I have a few friends who are actual herbalists, and they have come along with some suggestions for getting more vitamin D or providing some support to my immune system – things that are based on research and practical experience and in no sense are they ever presented as a replacement to standard treatment. Most of it comes with the line of “I did some research on MS and the drugs they will put you on are hard on your liver/suppress your immune system. . .”

And this is the first time I have had to directly confront someone who had an opinion on what I should be doing about the MS that wasn’t in line with standard science and it was the first time it was a woo-woo opinion and I was trying very hard to manage the line between polite and, well, “are you out of your freaking mind? I have a disease and I’m not interested in you selling me crap”

And I suddenly realized how fortunate I actually am. I have friends and I’m sure that they have opinions – not the least of which about how I should be treating myself. I am fortunate because the people around me – up until yesterday – come along and watch before they speak. They understand what I am – and what I am not. And when they think they can help, they come along gently – not telling me, not throwing things at me, but holding out assistance and letting me pick and chose.

Which is a good thing indeed.

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5 Responses to Opinions

  1. Mali says:

    It is indeed a good thing.

  2. Needles says:

    Accepting help is hard, even when we need it most.

  3. debby says:

    Oh, Mrs. Spit. That e-mail was probably mine. You know, I wavered and wavered before hitting send. One of the most tiresome things about cancer was receiving e-mails from people who were convinced that things like baking soda or peroxide would cure cancer, and that the government knew this, but was keeping it all hush-hush because of the money to be made in treating it. I really wavered at sending that e-mail because I did not want to be one of THOSE.

    It appears that I was.

    I am sorry.

  4. Sigrun says:

    I have no words, because I don’t know anything about this illness, I can’t know what you are feeling, but I am sad, sad for you and sad that I don’t know what to say–I am so sorry that you have to now deal with this. But I have confidence that you will, a day at a time, good and bad days. I pray for you and Mr. Spit ☺.

  5. Maureen says:

    As an almost 20 year veteran of a chronic illness (along with a 2nd chronic illness for 12 years, and two children with different chronic illnesses. Further complicating things, the established medical treatment for the one is a pretty common ‘treatment’ but research has not shown it significant helps one of the other problems (held by a different person) problems), I’ve had my share of ‘those’ emails. My mood very much tempers my reaction. And I’ve learned to be grateful when the come in the form of emails or private messages. I’ve learned/created a series of questions to answer to try to figure out the spirit it was sent. Is this a snake-oil salesman? If yes, does the salesman believe in the treatment or just trying to profit? Is the treatment most likely benign? Harmful? Seriously harmful? Potentially life threatening? Is the salesman using it him/herself? On a family member? On a child? Is there the possibility that a person is benefiting from a placebo effect of this treatment? Why are they sending it to me? To help my health? To sell something? My reactions are now quite varied. From a near non-reaction of not replying and ignoring, to all out anger and public denunciation of the product.

    Good luck. I always am having to figure out how I can live with each chronic illness… and what my current relationship with it is.

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