Time to open up.
It’s been a year of struggles, numerous blood tests, tears, and questions – but it official. I have Chronic Fatigue Syndrome.
What the heck is that? (you may ask – if you’re like me). Is that even a real thing? (if you’re like me).
It all started about this time last year. I was enjoying an amazing summer trip through Utah, then up to BC (if you remember). Near the end of my trip, I contracted H1N1 and took several weeks getting over it. That is when the severe fatigue set it. Along with an increase in headaches, and muscle and joint pain/soreness. I went to the doctor to get my thyroid tested, because this just wasn’t ME. I usually had plenty of energy, and had no trouble keeping on top of things. My thyroid test came back normal, but my WBC count was low. Really low. That set off a year’s worth of tests and more tests – everything from luekemia, to HIV/AIDS, to Hepatitis. All negative. Finally, it was a blood specialist who first suggested Chronic Fatigue Syndrome. I didn’t think much about it because it’s not even a real thing….right?
Chronic fatigue syndrome (also known as “myalgic encephalomyelitis“) is much more than just being tired a lot. People with ME/CFS are so run down that it interferes with their lives and can make it hard to function at all. Some people with ME/CFS say they have trouble staying on top of their responsibilities at home and on the job, while others are severely disabled and even bedridden. Furthermore, they’re not just dealing with extreme fatigue but with a wide range of other symptoms, including flu-like symptoms and chronic pain.
That described me perfectly.
After years of research, experts now suspect that something called central sensitization is at least partially to blame for ME/CFS. They also believe that’s what makes it so similar to fibromyalgia, which shares many of the same features. My mother suffers from Fibromyalgia, and I know how debilitating it can be.
Many researchers believe at least some cases of ME/CFS are caused by an abnormal reaction to common infectious agents. Interesting, seeing as how it was brought on after my body fought off a terrible viral infection.
Multiple studies suggest that the immune system may be chronically active in people with ME/CFS, which could at least partially explain the fatigue and lack of energy — basically, your body thinks it’s fighting an infection, whether it is or not, and that takes a lot of energy. That explains my low WBC count. My body, for some reason, thinks it’s always fighting off an infection, which runs me down and makes me feel like …. poo.
So what now? In some ways, it’s nice to put a name to it. Makes me feel less CRAZY and gives me a medical reason for how I’ve been feeling.
In other ways… it’s like, now what?
I’m going to feel like this forever?
So far, the condition is incurable.
As far as treatments go – the doctors can basically treat your symptoms. Sleeping pills to help you sleep at night, pain meds for the aches and pains, anti-depressants to manage the stress levels. But ultimately, no cure.
What do I plan to do? Well, I am going to try eliminating different foods from my diet, to see if that helps. I’m going to try different herbal supplements to see if that helps, and I am going to TAKE IT EASY on myself and accept that this is how it is right now.
It’s hard when I look in the mirror and see that I’ve gained close to 10 lbs since this time last year.
It’s hard to see the circles under my eyes and my sallow skin.
It’s hard to look around my house and see every way I’m failing to keep up.
It’s hard to miss out serving some Sundays because my symptoms are making it impossible to get out of bed.
It’s hard in a lot of ways…but it’s also a blessing. It is NOT terminal. It is NOT unmanageable. I can still walk. I can still talk. I can still laugh. I can still play. Life is good and I’m not going to let this get me down. It’s one of those inevitable trials that we all face, put there to make us stronger and more humble. I plan to get everything out of this trial that I can 🙂
Anyway, I’m sure you’re bored silly, but I had to write this down – even if just for me. I can look at this and remember that it’s okay to let somethings go. It’s okay to have a nap when I need one.
16 thoughts on “Up Close and Personal”
Bobbi… I have Fibromyalgia, and think I have Chronic Fatigue too
I'm embarassed to talk about it…but so apprieciate you opening up.
I understand all that your saying… just want to sent some * hugs *
Love you x x
Oh Bobbi Jo girl. I had a feeling. I am so glad you are comfortable in sharing…the net is a great place to gain and share knowledge from. I KNOW you still have that STRONG spirit within you (probably why your even more frustrated on the really bad days) but that spirit of yours constantly shines through with your positive attitude……just that alone gives you head way in leaps and bounds on your personal journey to help yourself with your health.
Don't forget about all of us supporting you and loving you. And I KNOW you have an awesome family and extended family doing the same thing.
Bobbi Jo, I am so sorry that you have to face such a difficult health ordeal… But I am glad that you now know what it is, and that you know how YOU want to handle it!
I find myself similarly in your shoes, as I have been battling PCOS for over 5 years.
It is something that I have no control of that is officially apart of my body, but I won't allow it to control my life! 🙂
Good luck in “taking back” the real you. I commend you for searching out alternative solutions to help alleviate some of your side effects such as weight gain, lack of energy, and depression. I have fought those same things too for a while. Not fun, but SO worth the fight!
If you ever want to discuss anything in comparison to food and supplements that can help with these side effects, let me know! I would be happy to share my experiences 🙂
You're still the same, beautiful, and talented woman! THAT will never change! 🙂
All the best ♥
Man – that sucks! I still think your're wonderwoman though!
I am so sorry. I wish I had something wise and wonderful to say, but I just wanted you to know that I read your blog and am sorry for your illness. I hope you can get the symptoms under control.
I'm sorry you feel like this but at least you have a name for it now & it sounds like a real plan to find what makes you feel the best.
Lots of thoughts headed your way! Keep your chin up!
Well Bobbi I”m glad they finally found out what it is & like you said it's not life threatening & yes, it's OK if things don't get done like they use to…take it easy & relax…feel good.
I am so glad that you spoke up about this. I have been going through tests since the first of the year. Mine started out with Vitamin D difficiency and has escalated from there. Just a week ago my doctor was looking into Chronic Fatigue but she also tested me for Mono and it came back positive – at my age lol This could explain the extreme tiredness I have been dealing with but she is still not ruling out other things. My WBC is actually slightly elevated but the rest of the tests are normal. Now I know why she keeps asking me if I feel like I have achy bones and joints. I can completely relate about to your “list” that you wrote only I have gained that 10 pounds since the first of the year and I was overweight to start with. I think that is my biggest thing to swallow. Chin up girl – I think we will all get through this. I am would love to know about how the food and herbal remedies work for you.
Sometimes knowledge is all that you need to get you on the right track. Not knowing why you feel the way you do is depressing but when you know what you are fighting it can alleviate that frustration. So glad I read your post. I bet there are many women who feel the way you do but don't know why. Your story may someone else struggling with these same symptoms. I hope that you will be able to start feeling better. stick to your plan and you will succeed.
Thanks for sharing. Hope you find what works best for you.
I think everyone could benefit from an afternoon nap!
awe, hun, I'm sorry to hear about this.
No, it's not terminal or the end of the world. But its not happy either— I get that. So I'm hugging you from here.
I'm gonna tell you the hard truth-
God *did* this to you to tell you to SLOW DOWN! you've always been superwoman. Supermom. Superfriend. SuperVisitingTeacher. SuperCallingHolder.
You needed to be FORCED to slow down, because I know you well enough to know that nothing else would have done it.
Hope you find a way to 'treat' it that works for you and your family!
hi – just wanted to send some postivie vibes your way. I love reading your blog… but sad about this last entry. You are such a light to many. I know that you will keep shining though – thru the hard times we shine even brighter because the Lord is carrying us with His loving light. Even though we might not feel so “shiny”!
Thanks for being my blog buddy:)one day at a time ~ Karen
I'm gonna have to look into this, I'm feeling EXACTLY like you! Thanks for being so open, and sharing all this with us.
Hi there! I clicked something somewhere and then clicked something else and probably did that a few more times and I ended up here. I just wanted to say that I know exactly what you're going through. I went through the same thing myself – multiple doctors, an endocrinologist who should not be allowed to have contact with other humans, blood work for diseases that got scarier and scarier, CT scans, ultrasounds. And everything was “normal” except me. My doctor refused to write her diagnosis on my chart (which I am now grateful for) because it can make insurance complicated, but she finally told me that Western medicine wasn't going to help me. She believed that I knew my body and that something wasn't right and she suggested alternate therapies – specifically massage, acupuncture and naturopathy. I didn't end up going for acupuncture because the combination of massage and naturopathy worked miracles. I highly recommend both – I know it can be expensive, but I was at the point were I would have maxed out my credit cards if it meant some relief. If you go with a naturopath, ask around and find someone who specializes in fatigue. Good luck finding a solution that works!! If you have any questions about the naturopath I saw, please ask!
My boyfriend was bedridden with CF for nearly 5 years. It was his entire life. We feel for you xoxo
I just heard a piece about CFS on NPR last week. The study they were discussing mentioned how little walks or light exercise was having a positive affect with some people. I think I was listening to All Things Considered if you want to look it up. I hope your system settles down soon. I suffer from severe headaches and joint pain so I can some what empathize with you. God Bless.