Regular readers might have noticed that I haven’t been around much the last few weeks. It’s pretty obvious from the “Posts by Date” in the column to the right, anyway.
Sometimes I miss writing because I’m busy doing fun things. Sometimes it’s because I don’t have anything in particular that I want to write about. But far too often, it’s because I just don’t feel up to writing.
I’ve wanted to write several times this week. But those topics have to wait because I’m just too tired to do anything productive these days. Now it’s 4:38pm and I just shut off the tv after watching for several hours. I feel well enough to sit at my desk and type these words. But I don’t know how long it will last.
And I struggle to explain this to friends who don’t have chronic illnesses because I don’t know how to describe it. I’ve said it before and I’ll say it again: we don’t have the vocabulary we need to describe these feelings. Sometimes I don’t know how to explain different kinds of pain or different kinds of nausea. This time I don’t know how to explain this feel of being so exhausted that just having a conversation with someone is tiring.
I canceled a date tonight. He was very sweet about it. He offered to bring takeout and a movie to my place so I wouldn’t have to do anything. But he doesn’t understand – we’ve only been out a few times, so I’d feel the need to talk to him, and talking would just take too much effort. How do you explain that to someone who’s never felt that kind of exhaustion? How do you explain the feeling that picking up a remote control is exhausting? How do you explain that reading takes too much energy, because even if someone else holds up the book, you just don’t have the energy left to think?
I felt this way in the past, but when things improved, I really hoped I’d never feel this way again. No such luck. Now, as I’ve felt the fatigue getting worse and worse over the the past few weeks, I’m left to wonder: what’s beyond this level of fatigue? What happens if I continue to feel worse? Somehow, I think I don’t want to know.
Chronic Rants 
Ugh, sorry! Been there. Done that. Canceled a million plans. The guy sounds sweet, though! I approve of him so far. 🙂 It’s really hard to talk about this stuff with a new guy.
Have you had any minerals testing recently? I was feeling more dead and in pain than usual and it turned out my iron and magnesium were low. MOAR SUPPLEMENTS. $$$$$ 😦
Yeah, I’ve been blown away by the guy, too 🙂 I’m sorry you’re dealing with more issues, but hopefully the supplements will help! I actually know the cause of this – a complication with my sleep apnea. I had another sleep study and the prescription is being submitted to the insurance this week. If Medicare doesn’t get too difficult, I should be able to start treatment in a few weeks – yay!
Hey there! Ok where do I start…I’m beside myself with pain in all my joints for almost 3 months. My husband thinks I’m nuts, I know after two bouts of breast cancer in three years, mastectomy, hysterectomy he’s over it. My pcp things it’s my femera, my pharmacist says it’s not. I can’t get an appt with a rhumatologist for weeks, I’m pretty sure it’s fibromyalgia. I’ve has lovely ins, can move or get up in the am. Depression PTSD anxiety several allergies to mess and two other autoimmune disorders, I believe triggered by one of my chemo drugs. Any suggestions where to start when I finally see my dr? Iborofin n Tylenol don’t do a thing for it. I feel like I’m loosing my mind and felt like my pcp was implying its in my head!!! Oh and if I do any attempt of cleaning my house 10-15 mins I’m wiped out! Sorry so long, just need someone who gets it!
I’m sorry to hear all of that! I wish I could have written sooner. It’s been a tough week.
I’m no doctor, but I can offer a few ideas that worked for me:
1) See a naturopath if you can afford it and/or it’s covered by insurance in your area.
2) Check your adrenal levels (saliva testing can be done without a doctor’s order.) There are many reasons for your kind of fatigue and adrenals are just one, but they’re often overlooked.
3) Find some support groups. In person is great, but not always available or feasible if you can’t get out of the house. Try Facebook and Twitter. I’ve done well with both. Try to avoid people who are always negative and look for groups where people try to offer actual support and advice.
4) Before you see your doctor, make a bullet-pointed list of every mediation you’re on and why, as well as the date you started. Then make a separate list of your symptoms and approximately when each started (the year and your age). Include when the severity of each symptom changed. At the top write:
The 3 symptoms I most want to fix are X, Y, and Z” – that will give both you and your doc some focus. If at any point you don’t feel that your doc is respecting you and addressing your issues, find someone else.
5) Before your appointment, do some of your own research into potential causes, such as the chemo drugs you mentioned. Only use reliable sources. Then bring them with you to the appointment. Don’t throw them in your doctor’s face to start, but if she/he doesn’t bring up something you think is relevant, you can ask about it and offer the source (if you can’t bring it, then at least bring a list of titles and authors.) The library and the internet are both great resources. If you can’t get the library, see if they offer ebooks. You can read many ebooks for free on a web browser.
6) Have your husband go to a support group with you. If that’s not possible, have him read some of the blogs that you feel speak to you the most. Let him see that it’s not just you. Specifically have him read the articles that I and others write about how frustrating it is when our loved ones don’t understand. I’m not married, but others specifically talk about spouses, and those can be useful.
And please write back to let me know how things go with your doctor! I wish you the best of luck, and hope that you can see some improvement soon! Always remember, there are a lot of us out here who understand what you’re going through and support you. Good luck!
Here’s an example of something that might help your husband to understand: http://www.elephantjournal.com/2013/04/23-tips-for-supporting-a-partner-with-chronic-pain-pete-beisner/
Sorry it took a while to respond. I’m in so much pain. Just got my blood work done from the rhuematologist fingers crossed. Thanks for the link!
Good luck with the blood work!!!
Sorry you had to cancel your plans. It sucks! Hopefully you can rearrange, fingers crossed.
There should be a warning sign like in cartoons, Danger do not cross!! Beyond fatigue is a gaping maw, the deepest hole etc, etc it should never be visited and definitely not in the middle of the night. Jokes aside, you are so right about there not being words, perhaps if we could find them, more could be done for us. I don’t read medical journals but I wonder about the small things. I am anaemic my body has little ferritin stores, I have been this way since being a prem baby. I don’t have periods thank goodness but still lose iron. Why? What about adrenals? Do they do research into that? Would any of these things help. I know I can write this and you will be curious like me.
Big hugs xx
Lorna, you are so right, it really is like a gaping hole! I was able to reschedule and he was really great about it. I was lucky that iron infusions helped with my ferritin levels, because mine were also low despite having little-to-no period. Have you tried infusions? I don’t know what research they’re doing into that, but hopefully there’s something useful happening!
I still have trouble explaining the not feeling like talking to my husband without him taking it personally, so I totally understand.I’m sorry you having been running on empty so much lately, I hope you find some spare spoons soon.
Thanks Julie, I do seem to have had a few more spoons over the last couple of days. I have no idea when they’ll run out, but I’m glad to have them right now.
I’m sorry to hear that your husband doesn’t understand yet. I hope that in time he’ll come to understand it. It’s so hard to explain how exhausting something can be when a health person doesn’t realize it even takes any energy at all.
I think he just forgets, especially after we’ve gone through a good period. Plus I think most of us are ingrained to think that if someone isn’t talking to us that it’s “us” not them, and take it personal.
That’s true. At least, I know I’m guilty of that.