CFS Flare Up Causing Painful Sores?

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The last week has been rather rough. Healthwise, I seem to be having some immune system issues. For some reason, I have gotten sores all over my gums and strangely, under my tongue. They aren’t like regular canker sores, they are more like little painful little red balls and swollen, ulcerated patches. I’m not sure exactly what they are, although while looking around online, I did find forums full of people with CFS and fibromyalgia who have experienced similar outbreaks, so I am guessing maybe it is related to that.

Unfortunately, the sores that are near the back of my jaw are causing an immense amount of ear pain, to the point that it feels like an ear infection. I was also running a low grade fever last night, which makes me think it is some kind of virus or infection causing the sores. I am taking some antivirals suggested by the doctor, but they don’t seem to be helping at all and are only serving to make me nauseated on top of everything else.

Today I was supposed to go to a birthday picnic for one of my husband’s coworkers, but I simply didn’t feel up to it. I feel bad for letting him down because I know he really wanted me to go so that I could get to know his friends better, but socializing is the absolute last thing I feel like doing right now.

All of this has me rather depressed and feeling lethargic. It feels like ever since I overdid it on our mini vacation to Kentucky, my health has taken a nosedive and is struggling to recover. That is what many people don’t understand about CFS, that once you trigger a relapse, it can take weeks to get back to “normal”…and our “normal” is far below average to start with! Chronic pain and chronic illness are no joke and make for a rough life sometimes.

 

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Vacations: A Harsh Reality of Chronic Illness

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Over the weekend my husband and I took a short vacation to Louisville, KY to celebrate our 15th anniversary and spend some quality time together. I did have a good time, but I must admit that I dread and sometimes even regret vacations just as much as I look forward to them.

Why? Simple. Chronic Fatigue Syndrome. Vacationing when you have CFS sucks. Big time. Planning the vacation wears you out. Packing wears you out. The travel wears you out. Even though I don’t do the driving, I am still exhausted by the time we even get to our destination. Often, as soon as we get to our hotel I immediately have to lay down for at least a couple hours to recuperate, even if it is only a 2 or 3 hour drive as this one was.

The main excursion we planned was to the Louisville zoo. We had never been there before and both my husband and I love animals. Luckily, it wasn’t a huge zoo, but by the time we had toured about half of it, I was in really poor shape. I had to sit on each bench we came by and rest. I even had to make do with the floor a few times and just collapsed. I was nauseated, felt like passing out, developed a migraine-like headache, and felt extremely overheated, even though it wasn’t that hot out and I stayed hydrated. Heck, most of the buildings were even air conditioned. THIS is what living with CFS is like.

I didn’t get to see much of the rest of the zoo. I was too busy looking for places to rest and recuperate for the trek back to the car. My legs ached so badly and felt so weak that I feared they would give out on me multiple times. My entire body felt like I had been run over or slammed into by something big and heavy. Somehow I did make it back to the car (after resting many, many times on the way there), and then we went directly to our hotel so I could recuperate for the rest of the day. I didn’t even have the stamina to go out for dinner a few hours later, so we ate at the hotel.

I went to bed early, hoping I would feel better in the morning, which didn’t really happen. The next day we visited a cool indie bookstore I had wanted to go to, but I was almost too tired to even enjoy that. We went and found a place by the Ohio River to sit and watch barges pass by, which was peaceful and relaxing. During the drive times to our locations, I curled up with a pillow and laid my seat back to doze.

By the time we headed back for home, I was too exhausted to care about much of anything. When we arrived home, I went almost straight to bed, even though it was only 5pm. The next day (Labor Day), my hip and back were so sore (with a pinched nerve thrown in), that I spent most of the day laying in bed watching a Lake Placid marathon on the Syfy Channel. Any form of movement was excruciating.

All of this makes me wonder if vacations are really worth the trouble. It also makes me wonder if maybe sometime soon I will need to get a motorized chair to even survive simple outings like this. I hate to give in and do that, but my worsening symptoms make it an almost certain possibility eventually.

Missing the Old Me…

Today I’m missing the old me. The me that existed before chronic pain, chronic illness, and worsening depression and anxiety robbed me of so many things.

The me that used to climb trees:

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The me that often used to hike up a trail and sit at the edge of a waterfall:

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The me that was up for outdoor adventures in any weather:

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The me that used to do silly things like go ghost hunting at night:

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I know it’s not my fault that things have changed, but I still miss that old me.

Anger, Mania, and Standing Up for Myself

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Last night I had a definite episode of mania. Wanting to stay up all night again, feeling like doing a million things at once, wanting to jump out of my skin, tempted to spend way more money than I should, barely able to sleep. If you read my rant yesterday, then you know that I was already dealing with a lot of anger, so I can’t help but wonder if anger can bring on a manic episode? I honestly don’t know whether that is possible or not, I should probably ask my psychiatrist, but it does seem interesting that after being upset and angry I became so manic.

Something else happened last night that made me even angrier than I had been when I wrote the rant post yesterday. Someone else in that Facebook group commented on the post I had written that only 1 or 2 of my mental or physical conditions could be disabling. They said that the Asperger’s and Bipolar might be disabling, but the PTSD, Social Anxiety Disorder, Fibromyalgia, CFS, Plantar Fasciitis, IBS, chronic infections, Degenerative Disc Disease, and bulging discs are NOT disabling. That really set me off.

At first I just told the girl that she should research the conditions and learn more about them if she thought that. However, she went on to say that I was the one who was ignorant and that I would probably “argue with a brick wall”. That really made me mad. I even asked her why she was being such a bitch because I hadn’t done anything to her. For me, saying something like that is EXTREMELY CONFRONTATIVE, but I also felt so proud of myself for standing up for myself for once in my life. Standing up for myself has always been a real challenge for me, so much so, that many people have told me over the course of my life that I needed to stop being a doormat and quit letting people walk all over me.

In person, I would still likely have a really hard time standing up for myself, mostly because when things become confrontative or stressful, I tend to struggle with selective mutism, which is a common thing for people with autism to deal with. Throughout my life, whenever I was bullied or abused, I almost always found myself temporarily struck dumb, unable to formulate a response or rebuttal. It generally only happens when I feel threatened in some way, but it is very frustrating. I figure standing up for myself online is at least a start though!

Social Security Disability Rant

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Ok, so I had another subject planned for today’s post, but I need to rant a bit, so I’ll save that topic for later. I hope you won’t mind listening to my frustration today.

So, I’m part of a group on Facebook for people with certain mental issues, and I have noticed many of the people in the group getting social security disability solely for those mental issues, which I happen to share. I am not upset that they got disability for their problems, but I can’t help but compare it to my own situation and feel angry at how I have been treated by the system.

I’ve been fighting for several years to try and get disability benefits, my worst conditions that affect my ability to work are: Bipolar Depression, Asperger’s, PTSD, social anxiety disorder, fibromyalgia, chronic fatigue syndrome, IBS, degenerative disc disease and bulging discs, chronic bronchitis/ear infections, and severe plantar fasciitis. ALL THAT and yet I am still fighting! It pisses me off because I know people who got it much quicker for SO MUCH LESS or just ONE of my conditions. And none of these conditions are light, even the last rejection letter from social security said the conditions are indeed severe…and yet I got turned down AGAIN? I have a plethora of medical evidence and have tried to follow medical advice to the letter. What more can I do???

I DO have an attorney (my 2nd actually), and I am now waiting for a court date, the 2nd time I will have to go to a hearing for this. The last judge I got had a record for barely approving anyone, which seems unfair in itself. How can it be a fair system when some judges approve a majority of people and other judges approve hardly anyone? Were it not for my husband, I would likely be homeless by now.

To make matters worse, one person in the Facebook group insinuated that plantar fasciitis and chronic ear infections/bronchitis aren’t severe enough to affect your ability to work long term. Well, I’ve had the plantar fasciitis for 15 YEARS. I’ve seen specialists, done meds, physical therapy, long-term steroid therapy, custom orthotics, cortisone shots, nothing helped. Doesn’t seem like it will magically get better at this point. It is so severe I have a noticeable limp and have almost passed out from the pain at times when I was forced to be on my feet for long periods of time.

As for the recurring infections, I’ve had chronic ear infections and bronchitis for many years, often getting up to six within a six month period. I’m now on my 3rd course of antibiotics this year (2018) for the chronic ear infections and bronchitis. Again, I’ve seen specialists, tried a host of medications and other treatments (both medical and alternative) and nothing has worked so far. The amount of antibiotics I have had to take has led to issues with antibiotics not working as well anymore, worsening IBS symptoms, and even episodes of MRSA, C Diff, and colitis which I had to be hospitalized for. These are not minor, fleeting problems.

To make matters worse, I have TRIED to work while fighting for disability. The last job I had (working only two days a week) I was let go from for missing work too much due to medical issues, most of which I was in the hospital or ER for, so they know I wasn’t just “faking”. I also tried being a greeter at Walmart, since it is about one of the only places that actually hires really disabled people and I couldn’t even do that due to my social anxiety, depression, and other health issues. I am not even fighting for welfare here, only the benefits I worked for over the years!

Crashing Mentally and Physically

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Today I am exhausted and not feeling well mentally or physically, but there are some things I HAVE to do that will keep me from laying in bed all day, which is what I would really rather be doing. I have to go get my allergy shots, which I have to do every single Monday for at least a year or two. Having allergies this bad sucks 😦

My husband and I also have to take in our car to get an alignment. It has been shaking pretty bad on the highway recently when you speed up or slow down, and we are hoping to take a short trip later this week, so we have to go drop it off today, which means I have to at least drive it there.

I’m not sure what is actually wrong with me today. I’ve been trying to eat better and am working on some of the eating disorder behaviors I recently mentioned in another post. I’m still doing my bipolar mood charting, and while I had a few energetic up days a few days ago, I am now definitely heading in the opposite direction. I feel like I’m crashing and I hope it doesn’t last too long this time.

Therapy Homework: Affirmations for Self-Esteem

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I saw my therapist this past weekend and it went ok, but I honestly think sometimes my therapist gets kind of annoyed or frustrated with me. I feel like she sometimes wants to see more progress than I’ve made, especially in the self-esteem/self-loathing area. To be fair, I haven’t always been the best about following up on actual practices to feel better about myself. I have done affirmations and things like that in the past, but I always end up kind of feeling ridiculous and giving up pretty soon when I don’t see immediate results…even though I know that immediate results aren’t likely.

At the end of the session, the therapist gave me the homework assignment of looking up some affirmations that I genuinely liked and related to and giving at least a few of those a try every day, so here goes. I did a google search and found some affirmations I actually kind of related to on a Huffpost article. Here are the ones I’ve actually decided to work with:

  1. I am courageous and I stand up for myself.
  2. I possess the qualities needed to be extremely successful.
  3. I forgive those who have harmed me in my past and peacefully detach from them.
  4. My body is healthy; my mind is brilliant; my soul is tranquil.
  5. Many people look up to me and recognize my worth; I am admired.
  6. I am a powerhouse; I am indestructible.
  7. I am conquering my illness; I am defeating it steadily each day.

Most of these spoke to me because they were just simple and straightforward, or because they address issues I deal with constantly (like health issues or past trauma). #5 may seem a bit conceited at first glance, but I think it is important for those of us who feel really bad about ourselves to realize that others don’t share that negative view. If any of these affirmations speak to you like they did to me, feel free to use them for yourself!