“dent de lion and blue skies and wishing”
PHOTO CREDIT: VIRGINIA SANDERSON via Flickr
In the back of my mind was an awareness that my energy was not only temporary, which I’m used to, but was induced by medication. It was an odd feeling.
I was temporarily able-bodied. An inner voice kept reminding me that the clock was ticking. I didn’t want to remember that I would have to go back to my life of being too tired to visit my family again any time soon. I tried not to think about where my energy was coming from. I’ve taken the medication before and always had this same experience.
For the most part, I managed to keep my thoughts positive and be grateful for the time with my mother and one of my sisters.
We had a very nice visit and ate home-cooked hamburgers at a lovely little country restaurant. I got to see my mother’s beautiful and prolific flower garden. I’d feared I wouldn’t get to see it at all this year. Many times I’ve heard her say, “I wish you could see the…,” and she’ll mention whatever is blooming.
I didn’t tell my sister that a little white pill was the fuel I was running on. I did however, end up telling my mother before I left, which I later regretted.
I didn’t have to tell her that fatigue was disabling me. I didn’t have to tell her that I had to take medication for my body and brain to work that day, but I did.
I had wanted to spare them the details of how hard it is to live with pain and severe fatigue every single day. Had I failed, I wondered on my way home.
I guess I also wanted to let somebody know the truth. For some reason, I needed somebody to know that me making the trip was hard. Plus, my mother is nearly psychic. If I don’t tell her, it isn’t like she doesn’t know, which she reminds me of from time to time.
“You look so good,” my sister had said shortly after I arrived. “Your eyes are clear. You really look good,” she added, with a pleased look about her.
Part of me wanted to tell her that I was running on medication and how underneath what she saw, was a completely exhausted human being, but I didn’t. I didn’t want to disappoint her. I love my sister and it warmed my heart knowing she was enjoying the bit of time, when her little sister looked okay.
I wished in that moment that I could give this to my family more often. If my looking well made her happy, then I thought it best not to spoil the moment. I did what my seventh grade teacher once told me to do if someone gave me a compliment. I said thank you. Nothing more.
I’m just too dang tired to do things. Too tired to think or make decisions. Too tired to talk some of the time. Too tired to clean or cook. Too tired to go anywhere, like the grocery store.
I took the little white pill and had a good day.
I choose not to take the medication very often because anything that can make this body get up and go, while it feels like I’ve been hit and run over by an eighteen-wheeler, well… I guess it scares me.
Thanks for visiting Dogkisses’s Blog! Feel free to leave a comment. Emails are never published.
Thanks to Flickr member and professional photographer, Virginia Sanderson, for her absolutely beautiful images! I’m not a photographer and don’t speak their language, but I especially love the different textures she creates. I encourage you to check out her photostream.
Related articles
- Fighting Chronic Fibromyalgia Fatigue (webmd.com)
- In all the fog, I write… (dogkisses.wordpress.com)
DOGKISSES 
Posted by Fergiemoto on December 4, 2011 at 1:17 PM
Invisible illness…..I can sooooooo relate.
LikeLike
Posted by saratbaker on July 30, 2011 at 12:02 PM
I struggle with the same issue of both wanting to be authentic about how I feel and wanting to spare those I love. For many people–my mother and siblings–the truth is either too hard to bear or they are not willing to go there. That makes me feel very lonely. On the other hand, I’m finding that I can be more real with my husband (well, he sees it first hand) and my oldest child. I try not to burden my younger child with it, but I am also looking for ways to talk about it with him so that he has some kind of cognitive framework and isn’t, as a sensitive person, merely picking up the angst.
All best,
Sara
LikeLike
Posted by dogkisses on July 31, 2011 at 9:55 AM
Hi Sara,
Thank you for your comment. I completely agree that the truth is too hard for some people. Personally, I think my siblings don’t want to know the truth because (and this is only my little conclusion) –a few of them would feel guilty for the way they have talked and treated me over the years if they took any time at all to become educated about the disabilities I live with. I’ve had some very harsh things said to me and about me by family, all because I have an illness. I’ve never asked them for money or anything, so I think I deserve a break from judgement or blame.
It’s easier to believe what is not even true, than it is to say oh, my sister lives in severe pain and gets so fatigued she can’t even get up to answer the phone. It’s very frustrating and isolating too. But, what can I do other than accept the way things are and hope to make more friends in life who understand.
I’m glad your husband is open and understanding with you. That’s how it ought to be :). I used to have a book about talking to children about illness, but forgot the name of it. Good luck in talking with your son.
Healing wishes and all the best to you,
Michelle, aka dogkisses.
LikeLike
Posted by Sue Dreamwalker on July 7, 2011 at 8:42 AM
Just dropping by Michelle.. to say Hi.. and ask how’s you doing?? just to let you know Im thinking of you.. and Sending you some Love And Light to you all dear friend xox
LikeLike
Posted by dogkisses on July 7, 2011 at 10:40 AM
Hi Dreamwalker! I was just editing an older post of mine that had broken links. Needed to fix that. Not sure what I think when I see my earlier posts, lol. I’m doing fair today. Have a bit of alone time and probably should be doing things, like taking care of obligations, but have used the morning reading and a little writing. Still having a hard time getting a blog post out. I wish that was not the case, as I so enjoy writing. Thank you for stopping by! Your visits are a true delight! Love and Light to you also! (((hugs))), Michelle.
LikeLike
Posted by Anonymous on June 30, 2011 at 4:20 PM
My sister has chronic illness too, and we try to spend as much together as possible. We are very tolerate of each others’ energy levels, and if we give each other a compliment we know it is really sincere. A good hair day always brings on a compliment, and if one of us put on make-up…WOO HOO!! I know that trying to look good for family is hard, I did that when my Mom was alive. It made her happy to think I was taking the time to “Pretend” for her. I wish I had a magic pill to take. I’m glad you had a good day.
mo
LikeLike
Posted by dogkisses on July 4, 2011 at 4:08 PM
So nice that you two have a close relationship. Takes one to know one I guess. Two people who both know pain can surely understand each other better, I should think. My sis had her hip replaced not too long ago, so she does know about pain. Most fortunately for her, she is better now. I did have a nice day, for the most part. There were family dynamics that were a bit hard to swallow, but my mom was right there by my side, so that was good :)! My son enjoyed himself and that always makes me feel good too.
LikeLike
Posted by Simply Deb on June 28, 2011 at 11:29 AM
Thanks for following my Green Lasagna blog. Promise there will be more on it soon. I subscribed, and look forward to reading more.
LikeLike
Posted by dogkisses on June 29, 2011 at 12:08 PM
Hello Deb! Thanks for leaving a comment.
I’ve had a difficult time keeping up with blogs, including mine. I’ve been at one book for the longest time and it’s a great book and I still can’t make myself dedicate regular or specific time to it. Hopefully, in time, things will get a little easier.
I do remember your blog and it’s a very good one! Green Lasagna!
Also, I enjoyed reading your post on your blog, “Deb’s Frugal Living” –very passionate and validating.
Thanks again for stopping and commenting and please visit again, esp., if you don’t hear from me. I may be lost but can usually be found ;).
LikeLike
Posted by hiddenlives on June 18, 2011 at 1:08 PM
Once again you voice my own life and experience.
For once 😉 I don’t seem to have many words, but I found myself in every line you wrote here and I thank you.
Peace.
LikeLike
Posted by dogkisses on June 18, 2011 at 1:24 PM
hiddenlives –hello!
Thank you for taking the time to leave your note, even without many words. Knowing you can relate to this post comforts me, so thank you for telling me.
I’ve thought of your pond recently. Wondering if anyone has used the lone chair. I found a nice spot by the river I like to go and visit. There’s a place where the water is still, with lots of moss. It’s peaceful. I see a heron every time I go. I keep thinking it is the same one.
Peace.
LikeLike
Posted by Sue Dreamwalker on June 17, 2011 at 8:25 AM
This invisable illness is just that some days.. especially to others Michelle, they cant see pain or tiredness beyon discription, and dont beat yourself up even further by addmitting that to your Mother, that its medication that helped your through your day visit..
I know Im 100% better than I ever was, but I know also those days you speak of.. and some days no one can understand the effort it takes just to rise out of bed in a morning..
One of the hardest obsitcles is getting the message across to others who look at your exterior and see you after you have made an effort to look good even though you feel like a thousand pieces of fragments inside,who say you look really well… I too have smiled sweetly and thought if only you really knew How I Feel…
And unless you have your foot in plaster or a band-aid on they will never get the pain or the fatigue…. that unseen illness they think is all in our minds..
So well done you… for you did make the effort and you did take one little pill that made a difference that day… We just have to put one foot in front of the other some days small steps one at a time are what keeps us going.. and Believe me… WE do get there…
(On another Note Michelle… I will get around to answering your lovely email… but been busy working, but this weekend Im off, so will write soon my friend and I will send a pic too.xox) Dreamwalker .
LikeLike
Posted by dogkisses on June 17, 2011 at 10:24 AM
Hi Dreamwalker,
Yes, it is so true, invisible they are. It’s hard not to identify with this and feel as though I am invisible. Sometimes I feel like I am the fight. Thank you for your encouragement. I’m pretty hard on myself in life. It’s an old, old habit. I sure wish the fatigue would give me a break. I have that medication, but it’s a temporary fix and I can’t say I much like it anyway. It makes my mouth dry and my words come out funny and my eyes red and people stare at me like I’m from another planet. When it wears off, it feels like sliding down a mountain. You have warning and you know your going down and it isn’t even that fast, but it’s a long way down.
I am glad to have had the day, the peaceful moments with my family and to be more than an illness. It’s important to have times when we can experience life outside of being sick.
Looking forward to your email,
hugs and doggie kisses xoxoxo
LikeLike
Posted by CZBZ on June 16, 2011 at 9:35 PM
Don’t be too hard on yourself…you wanted to keep the visit pleasant and it sounds like you accomplished your goal. If there’s one thing that comes across in your writing, it’s your sensitivity and empathy for other people. I’m sure you were not a burden to anyone.
Being honest about your pain shows trust for your family, letting them know the truth as a way to build ‘intimacy’ between you’. That’s what i believe. When someone is too withholding, too stoic and never mentions the pain they are in, other people feel like they’re afraid we’ll overreact in some way. I appreciate people’s disclosure about something as vulnerable as an ongoing ‘illness’.
That’s another opinion anyway!
(((Hugs))),
CZ
LikeLike
Posted by dogkisses on June 17, 2011 at 7:35 AM
Thanks CZ, I do care about other people’s feelings, sometimes more than mine. To be honest, I don’t trust most of my family with information about my health. My sis asked me not that long ago if it was in my medical records that I’d had Lyme’s and Rocky Mountain Spotted Fever. I thought at first she was trying to protect me, but I soon figured out she was questioning my word. Thank goodness it is on paper I thought to myself, in case I need to prove anything to my family. Made me sad.
I don’t know if my frustration is coming through the wire in my replies to you and Deb, but I have a large dose of it this morning. Things have happened in my family since I wrote this post. I am reminded of where I stand, and I don’t think it is in such a good light when it comes to blood relatives. I try so hard to not burden them. Maybe I try too hard. I don’t know. Oh how I wish I could just write how I feel!
You appreciate people’s honesty because you recognize that it does make us vulnerable. I’m not sure my family knows the word vulnerable.
I must stop typing here, just in case somebody decides to go blog hopping.
Thanks for your comment. I’m always happy to see a comment from you.
hugs and catkisses,
Michelle.
LikeLike
Posted by DorkyDeb on June 16, 2011 at 3:17 PM
My family (mom,dad, husband) can often tell by just the sound of my voice on the phone how I am doing. Because they know me so well. One day my Dad came by and I talked to him for a few minutes at the door and his whole face lit up. He said, “You look great today! You must be having a good day!” I was. It made me happy that he looked so happy. Then later it made me sad thinking about it. I know that my illness is a burden on them too. I know it hurts them that I am sick and they can’t fix it for me. I wish I could be well enough to make them that happy everyday. But I have to remind myself that I do the best that I can, and that’s all that I can do.
I understand worrying about what to tell people and what not to. I struggle with that a lot. I don’t want to talk about being sick all the time. In fact, I’d rather talk about just about anything else. But I’ve also found that if I don’t say anything at all, then people think I’m fine, which leads to whole other problems like people getting their feelings hurt and thinking I am just avoiding them. When the truth is, I’m not able to do anything. Or worse yet, they accuse you of being fine because they saw you on a good day, not knowing how very rare good days are. It is hard to know what to say and what not to. I try to find a balance between giving people enough info that they can hopefully have some level of understanding, and not overwhelm them or me by talking about it too much. If that makes sense. It is hard to find that middle ground with some people though.
I am very glad that you had that day and that you made the best of it. And I think it is fine that you were honest. It is good to worry about others feelings, but you have to be aware of your own too. It sounds to me like you handled it well.
(((hugs)))
Deb
LikeLike
Posted by dogkisses on June 17, 2011 at 7:13 AM
Hi Deb,
Now that a little time has passed, I’m glad I told my mom. Also, It is a nice day in my memories now. I like that.
I don’t know how long ago it happened, but somewhere along the line I have indeed learned to pass my self off as being fine when I’m not. I guess some of my relatives, such as nieces or great Aunts, wonder why I look fine and smile, like I did at my mom’s recent birthday party, until the end, which is another story. I really sucked it up that day so to speak and gave them my best face. You should see some of the photos though. I was trying to hold my eyes open so wide that I don’t look like a real person in two of them.
It sounds like your relatives offer you understanding and support. My mom loves me, but we have our share of problems communicating. She says she understands that I am fatigued and often sick, but there are times when she doesn’t seem to be aware of this fact. She says she takes up for me all the time with my sisters and brother. I don’t like hearing that. I guess I’d be right on in saying my extended family is pretty dysfunctional. I don’t usually write things like that, but then, they don’t read my blog. They say they have to work and don’t have time to do something as frivolous as read a blog. (Not when there are shoes or clothes to be bought at a mall).
One of the reasons I told my mom was because right before I was leaving, she mentioned a person we know who has been struck with fibromyalgia. The woman couldn’t come to an earlier family gathering and my mom was saying, rather mockingly, how the young woman couldn’t make it to any gatherings anymore. I can’t count the ones I’ve missed anymore. I felt like I needed to take up for all of us in that moment and that’s when I told her how I wouldn’t have been able to come without that medication.
I completely understand finding the balance in communicating with people. I would also like to avoid the subject of my illnesses or symptoms, but I have indeed been accused of not being sick, which is why my mom has told me so many times that she had to take up for me.
Thanks for your input Deb. It really helps me to hear how you deal with similar situations. You are such a positive person and I’m very happy that you read my blog and take the time to comment. Thanks for your encouragement.
(((hugs&doggiekisses2)))
Michelle.
LikeLike