I'm a moody person. Not only that, but I can go from feeling fairly happy and content, to frustrated/angry, to lonely and depressed all in the matter of hours. Yes, being ill all the time does affect my mood, but they are not the same. My moody personality/disposition pre-dates me getting sick. Not that being sick all the time isn't depressing, it is, but this doesn't mean I am never happy, or that if I'm sad it necessarily has anything to do with being sick.
In fact, I get super frustrated with people equating my mood with the illness/M.E. and vice versa. The worst is my dad who when I tell him I'm feeling really ill or sick he replies "cheer up" or "how can I cheer you up?". If I said I had a cold virus or cancer would the response be "cheer up". He's not the only one, others have, when I tell them I'm not feeling well, immediately jump to a comment about my mood.
I wish friends, family and acquaintances could spend just
one day in this sick, disabled body. I'm positive I would never hear a comment like this again. It is so much more similar to the worst day of a terrible virus after having run a marathon and so unrelated to mood, it would only take a day in my body to "get this".
Imagine trying to do a simple thing like brushing your hair or teeth and feeling your arm muscles give out, like completely give out! Or standing up (and still) for more than a minute (literally 60 sec.) and feeling your legs start to burn, your periferal vision starting to go...if you try to push through a vibration/buzzing starts in your legs which then get very shaky; push further and you black out completely.
Or you go for a short outing and 24 hours feel like you've been hit by a bus. Your throat hurts, you have a low grade fever, you feel the lymph nodes in your arms pumping and aching, every muscle in your body aches and it hurts to take a deep breath, like you have a deep seated chest infection. Sick, physically ill, not moody.
Anyways, I haven't written a post for a while so here it goes: My life is okay, I haven't died from working online at home. In fact, at the moment I'm no sicker than I was in the fall when I wasn't working. I relapsed in the winter but maybe that wasn't fully work-related, although I'd be surprised if it didn't contribute. While the work probably effects my health (negatively) to a degree, and it definitely effects the rest of my life (I have little energy left to pursue anything hobby wise or recreation), it also comes with a feeling of self-worth and extra money $$$.
People who aren't able to work due to illness face a lot of prejudice. The narrative in our western society is that your worth as a human is in part connected you your ability to work, or be productive in some way. This underlying message has negative consequences for those who can't work due to illness or disability or age.
What is our value if we can't work? Having been unable to hold down even a part-time job out of the home for most of the last 14 years has meant I have had to learn to assess my worth outside what I "do". Not just work, but hobbies and activities that once helped define me, that contributed to my identity were swept out from under me. I still struggle with my value as a human outside of productivity.
One rare gift of this illness is I am able to see value in a human life even if someone lives "off the system" and can't work or even pursue hobbies. My specialist used to say "we are human beings, not human doings". God I miss her sometimes.
As for this rare gift/insight of "M.E.", while I still struggle with it, at times I have clarity about human value and how unrelated it is to "human doing". I think being sick and unemployed, on disability, has allowed me to see people for who they are in a way that others who haven't had to live without "doing" would find hard.
Another "gift" of the illness is my understanding of "giving". I had a counsellor early on in the illness who told me that maybe I needed to learn how to be a "gracious receiver". Since then, when I feel that terrible knot in my gut about being on disability or having friends or family help me financially or physically I try to think about the
two-part relationship involved in giving and receiving. For some of us, I think it is far more difficult to receive than to give. I try to graciously receive from my friends and family although I still find it hard since the balance is so "off".
When someone gives me something or is generous, and I am unwilling to receive graciously, they don't get that good warm feeling of giving.
It's funny but I have friends who are happy for me to talk about my insights about being a gracious receiver, but can't manage to give the gift back themselves, by which I mean - receive graciously in return. I think I have a very generous type of friend because I can think of 5 good friends off the bat who are extremely generous in their giving but don't seem to like to "receive" (at least from me).
If you are a relatively healthy person with a sick and/or disabled friend, imagine how hard it would be to be so trapped by disability and finances that you were rarely able to "give" things to your friends and family members? I think I can speak for most of us sickies when I say you do us a great service, make us feel helpful and happy, when you allow us to give you the occasional gift without refusal or thought of return (now I need to pay them back somehow). Whether this is letting us hear about your problems/struggles on occasion, leaning on us in some way, letting us buy a meal/treat once in a while, risking asking us a favour, or being a gracious receiver when we send you a card or photo or gift. Think about how good it must feel for us to "do something" on occasion.
On a completely other topic, there are still big sheets of disintegrating ice in the bay, here's a few photos:
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| There's ice in here but I'm still going in. |
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| Teagan doesn't "get" selfies |
