When overwhelming fatigue is a B***h!

Yesterday was an extremely tough day for me.  It started out fine, with a trip to the hospital for some blood-work and an ultrasound.  On the way back home the overwhelming sense of I can't go on any further" just hit me.  I became so exhausted.  It was difficult to breathe.

I got home, and all I had energy to do was crawl into bed.  However, I tried really hard to stay active as "I had so much to do." I managed to fix something to eat, while thinking about writing this very blog.  I didn't have the energy to do that.  I wanted to work on a painting, but I didn't have the energy to even lift the paint brush.  So.....I gave in to rest.  I put on a movie to help beat the silence and quiet the tinnitus in my head.  I grabbed my iPad and started to do some reading.  If I had to be in bed, and couldn't sleep, I could at least read.

This kind of fatigue does not hit me often.  It's the kind where I have no energy.  I'm not being lazy.  I just feel drained. I guess that's what lupus and chronic illness does to you.

From what I understand, as many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.

For me, maybe it was my martial arts class the night before.  I made it through, because I knew today I probably wouldn't be able to take class due to it being "fusion day," as I call it.  You see, my iron has plummeted again, and I will be back sitting in the hematologist's chair as they pump a cocktail of iron-rich "stuff" into my body.  ....but maybe the fatigue is from all the excessive bleeding I've been doing.  The gynecologist suggests an ablation since the hysterectomy is out of the question due to my health concerns, plus the fact that I flat-lined during the last surgery.

Ok...so I have been diagnosed with a few anemia types.....iron-deficiency anemia, pernicious anemia.....I also have vitamin D deficiency....folic acid deficiency.  I'm getting a biopsy on the stomach and small intestine soon to see what's going on.

Whatever the reason, fatigue was a b***h yesterday.

My secret for dealing with normal fatigue is essential oils and my power smoothies, (I'll post on that soon), ....but this was a powerful kind of fatigue. I'm glad I'll be seeing the hematologist today, as the fusion will help.  It did the last time...at least for a month and a half.  Maybe when I get home today I will be a whole new person.

If you suffer from fatigue that you just can't seem to get past, please be sure to see your doctor. The following issues will add to the fatigue, so be sure that you are in touch with your doctor regarding them, to minimize the effect on your level of exhaustion.

*Stress

*Depression and Anxiety

*Thyroid problems...make sure your doctor has checked these at least once. a year. 3-4 times a year if you are on thyroid medications.

*Anemia (This is common with Lupus)

*Sleep Apnea

*Pulmonary fibrosis

*Low vitamin d levels

*COPD

*Congestive heart failure 

*Chronic pain

*Other concurrent conditions (Diabetes, Rheumatoid Arthritis, MS, etc.)

Ok....rant over.  Yes, this for me was a rant.  I don't frequently complain of what I go trough daily, but being this tired......OMG...it was the worst!

Do you have any secrets for combating fatigue?  Feel free to share them with me in the comments below....or just add your own rant.  That's fine, too.

Before I leave, may I suggest watching this video:

https://www.youtube.com/watch?v=Oo9vxur6B7Q

It contains great tips for overcoming fatigue.

Losing friends due to chronic illness

 "In time of prosperity friends will be plenty; In time of adversity not one in twenty."

 English proverb

I’ve written about my experiences with lupus and chronic illness before from so many standpoints, but I believe this has been the toughest topic to address.  So many of those folks that I have called friends in the past are no longer a part of my life. They, like many of the reader's friends, seemed unwilling or unable to comprehend my disease or my journey with chronic illness, and when I stopped participating in activities that we shared, they slowly just dropped out of my life. When I happen to meet one of them somewhere, they will inevitably ask politely, "How are you?" and fully expect me to simply smile and reply that I'm fine. Which is what I do and then we both move on.

I have felt your frustration and disappointment, really I have. It hurts when people that say they care about you don't seem to want to take any initiative or make an effort in understanding the enormous changes that your body is going through, doesn't it?

What I once thought was a very large circle of friends has become much smaller over the past five years. But those that remain are those that keep me going. Here's a great example: One of my friends, after hearing of my diagnosis, actually called me to say that she had done a lot of research on lupus, and wanted to know how she could help me.  Her gesture told me volumes about the sincerity of our friendship.  Another friend questions me, genuinely, each time she sees me….which is several times a week….”How are you doing, REALLY?”  I also deeply appreciate the friend a few weeks ago who gave one look at me, put her arms around me and whispered, “I can tell you are having a rough day.  What can I do to help?” To be honest, though, I don’t expect everyone to be that insightful.

 

If you’d like to read more about my journey with chronic illness, you can find that here:

http://hubpages.com/health/Facing-The-Giant-My-Lupus-Diagnosis
 

So the questions remain - How can you tell which friends will eventually GET IT and which won't? How many times do I have to explain it all? And what do I have to do to maintain my friendships? Why did some friendships become so hard, and why do some seem unchanged by my disease?

Chronic illness scares some people, or they don’t know what to do with me or how to treat me. I am learning that this is just what happens in chronic illness life.

Don’t get me wrong, it is frustrating and it does hurt, but I have realized that my illness pushes people to their poles. Those who are not interested or can’t cope (regardless of the reasoning) create a distance between us that was not there before, and those who are able to take my illness in their stride create a closer bond. People have clearly become more safe than they ever were,.…or less safe, and it is being defined by their responses to my illness.

The irony is that I don’t want to be defined by lupus, or the host of other diagnoses that I manage each day.   I am not embarrassed and truly, anyone of you can ask me anything. But that is not the same as me wanting to talk about it all the time, and the last thing that I want is for it to be the main thing that we talk about.

 I would love my friends to be safe enough for me to cry on their shoulder when I need to or for me to tell them of a frustration or whatever, but for the most part I just want to be me as I am…..the crazy designer artist, who is still dreaming of that great exhibit, still working to put together that solo show, the eccentric herbalist who is constantly experimenting with different blends of essential oils to heal my body, the home-schooling mom, martial artist, and friend who I hope my friends can call on in time of need.

My public world has expanded as I have taken on a role of creating awareness and understanding, but my personal world has shrunk to about a quarter of what it was! I am pleasantly unsurprised by some of whom fit into that safe category, and pleasantly surprised by others who have chosen to move closer rather than run away from me or attack me. But all three quarters of those who are running away have surprised me.

It was a painful process of losing people. It still is.  Some of those friends have willingly walked away, and some I have purposely ended relationships with. Part of this is a result of the people in my life not being the greatest people to have as friends, and part of this is a direct result of me making positive changes: getting sick allowed me to see my world with a new perspective. My life is no longer about petty concerns and trivial bullshit. (Yes, I used that word.  I know that shocked some of you.)  Now, it’s about creating a calm, positive, healthy environment and keeping my stress to a minimum. It’s about creating as happy a lifestyle I can, living the inspired life,   for myself, and my family and friends that remain....... in spite of immense suffering.

And that means being proactive about who I surround myself with.

  

No matter how bad it gets, you are going to make it!

What a week this has been! Today is the only day that I don't have a doctor's appointment.  Have you ever wondered how you make it through sometimes!

This was my week, this week:

Monday: Gastroenterologist...biopsy of the stomach and duodenum scheduled for early July.

Tuesday: Gynecologist.....surprise biopsy of the uterus done. Ultrasound and more bloodwork scheduled for next week. Possible ablation as I have been informed that I am not a good candidate for the hysterectomy.....with the heart and lung conditions. There could be a repeat of 19 years ago when I flat-lined. Don't want that!!

Wednesday: Hematologist.......to be told that I will be starting a series of 3 weekly transfusions next week as my iron levels have plummetted AGAIN. He did say that he will connect with my gynecologist and gastro doc and work out a plan for this problem. It's nice having doctors that actually talk to each other.

Thursday: ENT doctor....to discuss the tinnitus and hearing loss....to be told the same thing as two years ago. Now I have to see the Audiologist for another hearing test to determine how worse my hearing has gotten.

Today is the only day I have free of doctors appointments this week, but next week promises to be just as interesting as this week!  Yeah, me! LOL.  We have to be able to laugh at ourselves.  After all, laughter is the best medicine, right?

Harriet Beecher Stowe said that "when you get into a tight place, and everything goes against you, till it seems as though you could not hold on a moment longer, never give up then, for that is just the place and time that the tide will turn."

Throughout this week, even with everything going on, I still managed to do my martial arts workouts.  It is the only exercise I really enjoy anymore, and it does help with the joint pain.  I do have friends who constantly tell me to stop pushing myself so much, though.  Do you find yourself doing that?  

Pushing yourself, even when you feel like you can't go one more step?  The thing is that I know just exactly how far to push myself before I break, whether that be emotionally, or physically.  At that point I say, okay, it is time for some self-care, whether  it is a short walk, a nap, a massage with my favorite abyhanga oil, or a cup of herbal tea and Netflix.  
Whatever it is, know that the time spent recuperating is very vital, allowing us to make it through just another moment of that very tough day.  Before you know it, the day is over, and we have achieved what we didn't think possible...making it through a very tough day.

I hope you all have a wonderful weekend. I will be painting today, as I have scheduled a solo art exhibit and sale in November. More details to come.