I am feeling down today. Just feeling worn out, tired, and sick of the same old stuff. Maybe it's the weather (rainy and dark) or maybe I'm mildly crashed from going to the grocery store yesterday, but I am just feeling fed up with this cautious, exhausting life.
I spent an hour on Skype this morning with our biochemist/dietician consultant, but rather than leaving me feeling empowered by new information, I just felt overwhelmed and frustrated.
I have spent the past 11 years of my life researching, reading, seeing doctors, getting blood tests, and trying one treatment after another. Many of them have helped a little bit (and believe me, I am grateful for that), but nothing ever helps a lot. Bottom line is that there is no cure for this wretched illness (YET!).
I do know I am fortunate for all of the treatments that have helped a little - beta blockers, inosine/Imunovir, low-dose naltrexone, correcting sleep dysfunction, and more. I am grateful that I am not bedridden or even spending most of my days lying down, like I was a few years ago. I am grateful that I no longer experience month-long crashes every time I'm exposed to a virus. I am hugely grateful that I can go to the grocery store or take a short walk on a good day.
But. But, every day is still a never-ending struggle. Every moment of every day requires careful thought, caution, measurement, and hard work. I miss being able to live freely, being able to be....um...being able to think of the word I want!!! Before CFS, if I had a down day like this, do you know what I would do? I'd exercise. Just get outside and take a long hike with a friend or my husband or go to a class at the Y and sweat my worries away. I miss that freedom.
Oh, shoot. I thought that writing down my feelings might help me feel better, but now I am crying. I guess sometimes you just have to go with the feelings and let them out. I need to go pick up my son from school now.
Thanks for listening. I'm sure tomorrow will be a better day.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I'm sorry you are feeling that way. It is frustrating having those limitations, no doubt about it. I'm sure you'll feel better again eventually but your feelings are valid and legitimate. It's hard and you're doing your best and you deserve a break.
ReplyDeleteWith you Sue. Today was a low day for me too. I think I was low because it was sunny, and I SOOOO wanted to tend my garden again... somehow the sun served to remind me what I would have been doing if....
ReplyDeleteStill tomorrow's another day, and perhaps tomorrow I'll be happier to just enjoy the sun without heartaching. Hope tomorrow feels easier for you too. xx
This is me today. Just want to feel normal. I'm only 35 I have 5 kids. So frustrated
DeleteSorry to hear you are having a bad day, Jennifer. I know how hard it is to be a parent when you are sick. I hope you can rest today and that tomorrow is a bit better for you.
DeleteSue
I'm sorry you're having a down time. Being chronically ill (especially with CFS) is so damn exhausting. It grinds you down and like you say, every day is a never-ending struggle. Just existing is an effort! I completely sympathise and hope you have more good days than bad.
ReplyDeleteThis is exactly how i am feeling about my son's illness. I am so sorry that I am not alone, but thankful there is someone like you who can articulate so clearly the feelings I feel. Hugs to you tonight.
ReplyDeleteMy heart goes out to you. I cry with you. I'm sending you warm hugs!
ReplyDelete"I have spent the past 11 years of my life researching, reading, seeing doctors, getting blood tests, and trying one treatment after another"
"every day is still a never-ending struggle. Every moment of every day requires careful thought, caution, measurement, and hard work."
I understand you;
I'm experiencing much of the same thing, and I have been feeling this for 15 years now...
Oh Sue, I so know where you are coming from and we all have these times don't we. The pure frustration of the situation is infuriating and the daily routine of trying to do the best for your health (and your boys in your case) is all such hard work. I always think it's useful to have posts like this in your blog as when you are having a good day it just helps show how far you've climbed (mentally or physically).
ReplyDeleteNot sure what to say to help you feel better, but just remember that there are people out here who absolutely understand what you are going through. Hope you sleep well tonight and have a brighter day tomorrow.
Sian
x
((((hugs)))) because i know... it took me over 30 years to get the right diagnosis, as i shed pieces of myself & my life all over the place. all while trying to keep the other baffling pieces together. now that i am recently diagnosed. & at the same time, in a severe state.... it's overwhelming.. so, ((((hugs))). understanding the weariness. appreciating your help & knowledge. promising that soon ahead will be a moment that helps to life your spirits. xoxo
ReplyDeleteHi Sue,
ReplyDeleteI've come to accept these down days as a regular part of the condition. It doesn't make them any better at the time, but allowing myself to feel what I'm feeling and not forcing myself to try to look of the bright side, helps the feeling to swiftly flow. Sometimes we just have to cry! When I do, I usually find that I wake up the next day feeling better. So I accept that today I'm going to fell miserable, I allow myself to express it, but I trust that its transitory and I'll feel better soon without having to do anything else but be!
This works like doing exercise, but just not quite so immediately! I feel confident that you'll already be feeling better because you did just let it all out and let yourself be!
Love and Best Wishes!
To all the wonderful commenters here:
ReplyDeleteI was away all day yesterday, taking my son to the Lyme doctor, and now am hopelessly behind again, with almost 400 emails piled up in my inbox...so sorry for the delay! This is another thing I'm frustrated about lately.
Anyway, thanks to every one of you for your kind words and loving support. Boy, did I need that! It really does help to hear that I am not alone and that others understand how I am feeling. I feel so blessed to have a virtual community with people like you in it.
Thank you for your kind and caring support!! I am listening - and it is helping - even if I don't always have time to reply.
Sue
Hugs from France (they can fly through the air!) I hope this is just a bad memory. Wednesday and Thursday sucked for me, too.
ReplyDelete