What does it mean to soldier on? Soldier on despite daily incapacitating fatigue, weakness, and fluiness/malaise. Soldier on despite a constant battle (it seems) with some kind of infection. I am doing my best. My best isn't always that great.
First, it took 9 days of being crashed from my travel to see family to get a day that wasn't complete S*&^%^T. I had two OK days, and then I was right back to feeling terrible. Also, I have been fighting an infection that I decided to call yeast because I was too sick to get myself to a clinic to have someone look at it. It would have taken a week to get a scheduled appointment, and walk-in clinics typically mean 2 hrs or more sitting up waiting (not to mention getting myself there). Ironically, I was too sick to get help. I had a prescription yeast drug on file and thankfully, at least, the drugstore delivers for free! My infection seems to have cleared some, but is not completely gone.
I had planned to travel again this month to go to a wedding and visit friends. The travel is less strenuous (no plane travel involved). Still, I had all but decided to cancel until I had my two OK days. Now I am feeling it might not be the best idea, but I still might go through with it. Hopefully I manage OK. It won't be easy, but I feel as if I've been living mostly in a lonely cave, and it will be nice to connect with old friends and change my space. It also means seeing the Lake! I can't wait.
If you continue to read this post you will read a rant.....it's what I want to say to all the well meaning people who tell me these two things OFTEN....yes, I have heard them both this week more than once.
THE TWO THINGS I MOST HATE TO HEAR WHEN I RALLY AND MAKE IT OUT IN THE WORLD:
I am also rallying myself for the things I will hear if I make it to this wedding. My absolute least favourite: "You look great" or "You look great, you must be doing well (or better)".
First of all, looks can be deceiving people!!! I read a statistic recently that 95% of chronic illnesses are invisible. This means you cannot tell by looking at someone how they are doing. If you know they are ill and are interested in how they are doing, ask, but don't tell them "you look great". What the person hears (and this is not just me, I've heard this from many many others with chronic illness) is: "you look great, it can't really be that bad" or "you look great, you must be exaggerating at some level".....so just don't say it!!! Please!!!! If you are not interested in hearing how they are doing or about their experience with illness, fine, then don't ask. But when you tell someone who is ill and disabled and may have used every bit of their will power and strength to get out at all, and may be recovering for days or even weeks as punishment for getting out that "you look great" what are they supposed to say? I find it difficult because if I were to respond to "you look great" with "I've actually just had a horrible 6 month relapse" or "I'm finding it hard to just stand here looking at you my legs are so weak and I am so dizzy" I feel as if I am contradicting the person's outward assessment of me. Also, to share that I'm not feeling great makes me into a 'complainer', to contradict them when I obviously look so well.....So I've learnt to cringe and say "thank you"....what else can I say? They obviously aren't really interested in how I am or they'd ask how I am rather than making a statement about my outward appearance. Am I supposed to be happy that despite being ill and disabled, I look fine?
Second worst thing to hear: "Oh I get that too". If I do open up and share a symptom that I am finding hard to deal with, like lets say dizziness, I very often, 7 times out of 10 get the response "Oh, I get that too". What do I hear when someone says "I get that too"? I hear: "I get sore throats all the time too, but I soldier on and work anyways" or "I get dizzy when I stand too, but look at how much I still manage to do, I'm not laying around all day moping".
If I am talking to another person who is generally well and coping with life (lets say they work, socialize, manage a household, have hobbies) I know for a fact "THEY DO NOT GET THAT TOO!!!". Seriously, do you think you are commiserating with me? I realize other people who are mostly well also get sick and deal with symptoms....I really do understand this. And despite the fact I'm always sick, I feel empathy and I know it sucks to be ill esp. if you have a busy fulfilling life. But if you had what I had, or were experiencing what I were, you would be disabled. You are not walking around managing because you are tougher or better than me OK!!!???
Chronic illness is not discriminating. You can become disabled whether you are a teacher, a surgeon, a store clerk, a mother or father, a man or a woman, a child or an adult, a couch potato or the greatest athlete on earth. People of weak character and strong character get chronic disabling illnesses! And while I suspect (actually know) that I am not as mentally tough as some of the people who say these things to me, I know, had they been hit with this disease, they too would be disabled. They too would be disabled because it's DISABLING....I am not disabled because I'm weak or can't deal with symptoms (symptoms that evidently you get too).....but because I have an illness with symptoms that are disabling!!!
I don't even mind hearing about a 'well' friends symptoms or recent bought of flu, but not as a response to my sharing. If I share that something is especially hard or disabling for me and you are obviously not struggling or disabled I highly doubt "you get that too" at least not to the same degree. "Oh I get that too" is just a dismissal, any way you look at it.
OK, so my rant is over for now. If you don't have M.E. or another disabling illness, maybe you feel enlightened. And I don't hate the people who tell me these things either, just to make that clear. Often, they are some of my favourite people, my family and best friends (which makes them harder to hear). I know chronic illness is awkward and embarrassing and you don't want to say the wrong thing. I feel the same, for example, when I hear about a cancer diagnosis. What do you say that is helpful? Encouraging? but not degrading.
My one piece of advice if I could throw it out into the world and have everyone hear is, first, if you are truly interested, ask how someone is, don't tell them how they look. And if you don't want to know, or are uncomfortable, don't ask. It's not always fun to talk about anyways. For me at least, when I get out, it's nice to not have to think about myself or my body or my illness. I like talking about life outside illness and other people and common interests. I so rarely get out that when I do, I often want an escape from the daily dredge, not to talk about it.
Second, don't judge. It could have been you who got sick. That person with chronic illness isn't sick because they ate the wrong things or didn't exercise or were stressed out too much....illness is NOT a character flaw. Maybe you are not ill, but it's not because you are a better person, it's mostly because you got lucky: lucky genetics, lucky environment, maybe you dodged an infectious insult, but it's not because you threw salt over your left shoulder everyday or went for a run three times a week or meditated or ate more vegetables. This is really scary isn't it? I think this is why so many people subliminally or outwardly blame the sick person for being sick. If sickie is sick because they did XYZ wrong, then I'm well because I did XYZ right. It makes me feel in control of uncontrollable events and circumstances.
Oh and just for fun, if I do make it to the wedding I'm going to keep a tally and I'll report here how many times I hear "you look great" or "you look great you must be doing better" at the event. Sound fun? And it will make me giggle instead of cringe when I say "oh I do?, thanks".
And despite the fact that I will hear these things if I make it, I'm sure it won't ruin my experience. It will be so great to see old friends and watch two wonderful people tie the knot.
If you are ill, what are your top 2 least favourite things to hear?
Here's a great article about this topic: http://www.diversityinc.com/diversity-and-inclusion/but-you-look-so-good-and-7-other-things-not-to-say-to-a-person-with-a-non-visible-disability/
Monday, September 23, 2013
Friday, September 13, 2013
Fighting the Fight
I'm home from my trip and still 'crashed'. I'm not at my lowest, but mostly home bound and just feeling terribly sick especially between noon and 6 pm each day. Then I fall into bed at night ill "viral" and exhausted and sleep hard (or at least it feels like a hard sleep).
On the positive, I feel so happy to not have to visit with anyone, or travel to see anyone, or deal with the eccentricities of family, or have to explain and defend my need for rest and/or accommodation. I can just be kind to my body, lay in my own bed, eat when I'm hungry etc.
Being crashed is mentally and emotionally tough. Feeling ill all day, then getting up and doing it all over again is wearing, but for now, I'm "fighting the fight". Although, to be honest, it doesn't feel like fighting as much as enduring a lot of the time. I read a great post recently that someone in my online M.E. support group posted and it was very insightful about what it means to accept and live with illness and limitations.
Here is a link if you are interested.
blog.tarabrach.com/2013/02/meeting-our-edge-and-softening.html
And on a sad note, hearing that a fellow patient this week killed himself (the third I've heard of this year) was heartbreaking. He had been mostly bed bound, and sick for over 25yrs!, but despite this he was a huge advocate for the illness and the founder of May 12 as a day of advocacy and remembrance for M.E. as well as a few other conditions. I feel no judgement about the suicide; this is a hard life we live. It makes me want to reach out to others with this illness even more, to help them know that they are not alone.
It also makes me terribly angry that so many people are so very ill and little is done to research the illness. More money goes to researching hay fever a year than to an illness where 50% of people are too sick to work even part-time, and many are confined to home and even bed.
I've been thankful this week for the support I do receive from friends and cyber friends. I don't think I would manage without this support.
For example, the Canada postman showed up today with a box of dark chocolate for me!!!! It was such a surprise and made me smile.
On another completely different note.....
A couple years ago an article came out in Science about a study that had found a retro virus (XMRV) in patients with M.E. After numerous debacles, it was concluded that the science was faulty and the results a mistake. It was heartbreaking for many that have been sick a long time. Finally, someone could explain the cause of M.E. which of course meant that treatment possibilities would emerge fairly quickly!
I have avoided getting excited about any kind of research since.
One good thing that came out of the rigmarole is that a very well known "virus hunter" was intrigued when the false XMRV virus results were uncovered and since has been doing research trying find any kind of pathogen or immune dysfunction in M.E. patients. Here is an article that came out this week about his research, although no results have been officially published yet. So far, he still believes there might be a pathogen involved due to the immune dysfunctions they have uncovered in people with M.E.:
On the positive, I feel so happy to not have to visit with anyone, or travel to see anyone, or deal with the eccentricities of family, or have to explain and defend my need for rest and/or accommodation. I can just be kind to my body, lay in my own bed, eat when I'm hungry etc.
Being crashed is mentally and emotionally tough. Feeling ill all day, then getting up and doing it all over again is wearing, but for now, I'm "fighting the fight". Although, to be honest, it doesn't feel like fighting as much as enduring a lot of the time. I read a great post recently that someone in my online M.E. support group posted and it was very insightful about what it means to accept and live with illness and limitations.
Here is a link if you are interested.
blog.tarabrach.com/2013/02/meeting-our-edge-and-softening.html
And on a sad note, hearing that a fellow patient this week killed himself (the third I've heard of this year) was heartbreaking. He had been mostly bed bound, and sick for over 25yrs!, but despite this he was a huge advocate for the illness and the founder of May 12 as a day of advocacy and remembrance for M.E. as well as a few other conditions. I feel no judgement about the suicide; this is a hard life we live. It makes me want to reach out to others with this illness even more, to help them know that they are not alone.
It also makes me terribly angry that so many people are so very ill and little is done to research the illness. More money goes to researching hay fever a year than to an illness where 50% of people are too sick to work even part-time, and many are confined to home and even bed.
I've been thankful this week for the support I do receive from friends and cyber friends. I don't think I would manage without this support.
For example, the Canada postman showed up today with a box of dark chocolate for me!!!! It was such a surprise and made me smile.
On another completely different note.....
A couple years ago an article came out in Science about a study that had found a retro virus (XMRV) in patients with M.E. After numerous debacles, it was concluded that the science was faulty and the results a mistake. It was heartbreaking for many that have been sick a long time. Finally, someone could explain the cause of M.E. which of course meant that treatment possibilities would emerge fairly quickly!
I have avoided getting excited about any kind of research since.
One good thing that came out of the rigmarole is that a very well known "virus hunter" was intrigued when the false XMRV virus results were uncovered and since has been doing research trying find any kind of pathogen or immune dysfunction in M.E. patients. Here is an article that came out this week about his research, although no results have been officially published yet. So far, he still believes there might be a pathogen involved due to the immune dysfunctions they have uncovered in people with M.E.:
Thursday, September 5, 2013
I spoke too soon
Well it turns out I spoke too soon about the improvement and resilience. It happens every time. It doesn't take away from the fact that I had some good days. But after my travel, while I did alright for 2 days, on the 3rd day I collapsed. I am feeling so ill and fluey and even headachey that I can barely stand it. And it's even harder to feel this way while being on a visit because I can't escape indefinitely into bed (although that's what I'm dong for the most part).
As you know, when you have M.E. and are crashed, it's even hard to talk as talking takes so much energy and makes you feel worse. I think I am going to need a year to recover.
This morning I got a ride to the senior home where my Aunt is living. There was a big scare recently when she went into heart failure. Everyone thought it was the end. Then she bounced back like a cat with nine lives! Needless to say, I really really wanted to see her while I was here, so I went and enjoyed an hour visit. But I felt so ill by the end I wanted to just die. And that has been the story of my last 4 days. Feeling awful and very "viral" and weak and exhausted. On top of it all, frustrated with my body for rebelling so fiercely to the most simple things.
Even small things I want to do (short visits or hellos, sitting up at the the dinner table with my parents) seem like monumental tasks and I am at the edge of tears constantly. (Probably somewhat just from fatigue). Cross your fingers this is short lived.
As you know, when you have M.E. and are crashed, it's even hard to talk as talking takes so much energy and makes you feel worse. I think I am going to need a year to recover.
This morning I got a ride to the senior home where my Aunt is living. There was a big scare recently when she went into heart failure. Everyone thought it was the end. Then she bounced back like a cat with nine lives! Needless to say, I really really wanted to see her while I was here, so I went and enjoyed an hour visit. But I felt so ill by the end I wanted to just die. And that has been the story of my last 4 days. Feeling awful and very "viral" and weak and exhausted. On top of it all, frustrated with my body for rebelling so fiercely to the most simple things.
Even small things I want to do (short visits or hellos, sitting up at the the dinner table with my parents) seem like monumental tasks and I am at the edge of tears constantly. (Probably somewhat just from fatigue). Cross your fingers this is short lived.
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