I haven’t blogged for awhile. Minus the post from a few days ago.
My MS is keeping me homebound; 91% of the time. Since Monday my left leg has turned into what feels like a block of cement. I’m pretty much in a slight state of depression over this. I walk and feel nothing but pain. I want to cry, but I can’t. I’m dragging around my leg and I know people are looking at me, so why go outdoors? Why face the stares?
I have to. Because I do need to make a living while I still can.
I feel like this post is way overdue.
Mainly because I know everyone at some point has struggled with a mental health problem in their lives. With the passing of Robin Williams two years ago, there has been more public acknowledgement of mental health issues. Why am I addressing this in a post?
There is a reader who follows me and I follow them… who is struggling with a mental health issue. I’m not sure if they are aware if they have a mental health issue. What I do know is that they feel alone and they feel trapped in their head. I know they feel their blog is their escape from their mental illness and reality. They feel not a single person in their life understands.
I want this person who may be reading this post to see this and know:
You are NOT alone.
Six years ago, I was right where you are, right now.
I felt like no one understood. I felt like I was alone. I was drowning in everything. I was on the verge of leaving everything behind.
I had a note.
I was a risk to myself.
For all I know, I was a risk to others.
But I knew I had to ask for help. That I was aware of.
I was at rock bottom.
I asked for help because I didn’t know what else to do.
I still have my struggles, but I am back to where depression does not have a hold on me. I am whole again.
Ask for help.
Talk to someone.
You are not alone.
As we’re soon to be hitting the near 100s this upcoming week on the East Coast; I felt this would be the time to discuss heat and multiple sclerosis.
“Studies report that about 60 to 80% of people diagnosed with MS show excessive sensitivity to heat. People with this neurological disorder experience a temporary exacerbation of their existing symptoms and also new disturbing symptoms when they are exposed to elevated temperatures. They are sensitive to even a slight increase in their core body temperature (0.25°C to 0.5°C) that may be due to physical exercise or a warmer environment.”. (Wlassoff, 2014).
What happens when exposed to extreme temperatures:
- Fatigue is a common symptom and it is seen in nearly 70% of people with MS. Premature fatigue occurs in people with MS when they are exposed to even a slight increase in temperature. Weakness, especially affecting the limbs is also a symptom that is perceived during or aggravated by a temperature rise.
- Central pain is another common symptom that worsens with an increase in temperature. Studies propose that the reason behind this may be the damage caused to the thalamus and the spinothalamic-cortical pathways leading to thermoregulatory dysfunction. Numbness is another symptom that worsens with rising core body temperature.
- Cognitive functions in MS patients are also sensitive to heat. Memory problems, judgment difficulties, concentration difficulties and problems with other cognitive skills like language comprehension are more pronounced with the increase in body temperature. A recent study pointed out that people with MS demonstrated worsening of cognitive functions in warmer days.
Wlassoff, V., PhD. (2014, September 13). How Temperature Affects People With Multiple Sclerosis. Retrieved June 10, 2016, from http://brainblogger.com/2014/09/13/how-temperature-affects-people-with-multiple-sclerosis/
I haven’t updated this in awhile because the heat has had me down and out. Of course, my migraines are back in full force. It seems like there is no relief for me in the migraine situation. Well, my neuro did suggest Botox injections. It sounds silly to get Botox for a migraine. I’m sorry, it does. I’ll hope that something helps soon. These crippling migraines are a little too much right now.
I’m in the middle of my employment situation. My previous job I left a week ago, well, they were well informed that I had MS. They said they were cool with it. Anyway, they could help me, they would. Of course, I’m going to point out when I think it’s a tad bit warmer than it should be in the building. I can’t control my body temperature. They knew this. As an assistant manager quit the week before, I walk into work and it is blazing. Someone has the thermostat way high. I felt sick. I felt dizzy. I couldn’t handle it. I simply thought I was going to die. When I asked for the heat to be turned down, no one ever touched it. I suffered for almost three hours before the other person I was working with noticed I was sluggish and turned the AC on. Needless to say, I quit two days later. Right now, I’m enjoying some down time. Kinda. The migraines.
Today, we finally laid my uncle to rest. His ashes to rest. I still feel empty about this. 5 months later, I don’t know how to … feel. Empty seems appropriate.
After this…I came home to find out a friend I met while volunteering at The Salvation Army passed away from his heart condition today. He was 23. Due to get married in 2 weeks and was going to be put on the heart transplant list in 17 days.
It is another reminder that life is short.
Tomorrow isn’t promised.
I’ve been fighting with my insurance company for over a month to receive the medication that I need. OF COURSE- it’s an MS medication. Why am I still fighting this?
Well, technically, I’m not. My neuro is. The denial I received pretty much said I didn’t “need” the medication because
- Diagnosis of clinically definite Relapsing-Remitting MS/or documented abnormalities by MRI.
- Other causes of symptoms of other diseases have not been ruled out (they have).
- Member has no concurrent illnesses to substantially reduce life expectancy.
- MEMBER DOES NOT HAVE IMPAIRED RENAL FUNCTION.
This just upsets me.
When I spoke to an insurance person on the phone, she told me I did not need the medication and when I told her if I was denied a second time, I was going to get the medication anyway. She snottily replied “Good for you.” Good for me. Yes, this woman’s legit attitude was seriously in need of an adjustment. She also told me that if I needed a wheelchair in the future—- I would not be given that approval either.
And with other problems going on in my life with family, friends… school.. even work…. I’m just… not feeling it anymore.
Before I get started, someone reading this might not know what a MS Hug is.
“The MS hug is a collection of symptoms caused by spasms in the intercostal muscles. These muscles are located between your ribs. They hold your ribs in place and help you move with flexibility and ease. The MS hug gets its nickname from the way the pain wraps itself around your body like a hug or a girdle. These involuntary muscle spasms are also called girdling or MS girdling.”(Healthline, 2016)
What it feels like:
“Some people report no pain but instead feel pressure around their waist, torso, or neck. Others experience a band of tingling or burning in the same area. Sharp, stabbing pain or dull, widespread aching can also be symptoms of MS hug. You may experience the following sensations during an MS hug:
- crawling feelings under the skin
- hot or cold burning
- pins and needles
As with other symptoms, MS hug is unpredictable and each person experiences it differently.” (Healthline, 2016).
Me: Right now, My MS Hug is in my shoulder/neck area and has worked its way down to my right arm. I have been miserable for three days. I know it’s going to ruin Easter tomorrow. I know it.
The MS Hug: What Is It? How Is It Treated? (n.d.). Retrieved March 26, 2016, from http://www.healthline.com/health/multiple-sclerosis/ms-hug#Overview1