The Winter Olympics are just about over and I have been enjoying many of the events from the relative comfort of my recliner.
In a few weeks, Korea will be hosting the Paralympic Games for athletes with various physical abilities. These games are just as challenging as the original games and the athletes are just as talented as their able-bodied counterparts.
I got to wondering what the games would look like for those of us with chronic health problems. I am not talking tongue in cheek here so please bear with me for a bit.
First of all, each participant would be given a gold medal for taking part in the games. After all, that is sometimes more than we can handle. All medals would be gold because of the great effort competing would take.
Secondly, there would not be a host city as few of us can travel any…
Bankruptcy is ongoing. All these holidays putting things off. I have given two banks the lawyers info.
My Amazon account was hijacked. Doesn’t look like anything was purchased. They got in and changed my email address and password. Their computer techs were able to lock my account and sent me to a page to change it. Canceled any orders if there were any that weren’t processed. Recent viewings weren’t mine. Seems to be changed now and working under my email address.
I couldn’t have my last lumbar epidural so just was able to schedule one for 4 weeks, The pain is tremendous. Have no choice but to wait. Hopefully won’t have to cancel this one.
Tessa – advocate for mental health and invisible illnesses, also devout Christian
The last couple of weeks have been tough — a monster headache last week, and this week, I had the worst fibro flare I’ve had in a long time. I’ve spent all week just trying to get through each day. On days like these, it’s really hard to feel very optimistic, but one of the building blocks of my HOPE plan is optimism, so I need to find a way to be optimistic even if I don’t feel it.
Why would optimism be important to living well with chronic pain. or any chronic illness for that matter? The definition of optimism on Dicitionary.com is this: “a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome.” I’m not talking about unicorns and glitter here — I’m talking about feeling that I can do something to improve the way I…
I still remember the first thing said at my two-month pain clinic. This could be partly due to the fact I took it twice (due to my father’s passing); however, it is mostly because of the impact that it made on all of us.
“You are not here for us to help you get rid of your pain. If that was possible, you wouldn’t be here. We are here to help you manage that pain and have a better life in spite of it.”
Acute pain is what you get when you break a leg, have a headache or need your appendix removed. It is there to warn you of some danger or issue that needs to be looked after. When you put your hand on something hot you feel burning pain and usually remove it pretty quickly so you do not get severely burned. This is your brain receiving…
For the last couple of weeks we’ve started taking a look at some foods that may be helpful for fibromyalgia. If you missed the first two posts, you can find them here (Part 1) and here (Part 2). I’m highlighting some foods because of the specific nutrients they contain that may help with fibromyalgia, but these are definitely just some of the foods we may want to include in our diets (and whenever I reference diet, I’m just talking about what we eat, not a specific diet). A healthy diet should include a variety of foods. As I mentioned in For the Love of Food, we don’t yet understand how food works synergistically in our bodies to give us all the nutrition we need, and our best bet for getting those nutrients is to eat an array of real foods, foods closest…
As I sat on the beach this morning and listened to the waves crash I couldn’t help but think of how far I’ve come since I started this blog. There was a time when I was experiencing tremendous internal turmoil. Basically, my insides were a raging dumpster fire. I was so lost. Sitting there I remembered this song that was once my anthem:
“Spirit Of A Storm” – Kenny Chesney
There’s a spirit of a storm in my soul
A restlessness that I can’t seem to tame
Thunder and lightning follow everywhere I go
There’s a spirit of a storm in my soul.
There’s a hurricane that’s raging through my blood
I can’t find a way to calm the sea
Maybe I’ll find someday the waters aren’t so rushed
Right now they’ve got the best of me
And oh, it’s been a long, long time
Since I had real peace of mind
So I’m just going to sit right here
In this old chair till this storm rolls by.
Oh, maybe it’s just the way I am
Maybe I won’t ever change
So I’m just going to sit right here
In this old chair and just soak up the rain.
There’s a spirit of a storm in my soul
Every time I think it’s gone away
Dark clouds gather, that old wind begins to blow
The sun’s going to shine someday I hope
There’s a spirit of a storm in my soul, in my soul.
It has been a minute since I updated everyone on the MS front so here goes. I have been off all my medications for about a year. I will take the occasional pain pill, but I try to limit those because they are dangerous. I stopped taking my injections of Copaxone in May of 2016 simply because I was worn out from giving myself an injection 3 times per week for nearly 3 years.
Without the medications I simply have to tough it out. It isn’t easy, but I prefer the pain to all of the side effects of the pills. I’m not sure which is worse, MS or the medicines used to treatment MS.
My two primary symptoms that I deal with are fatigue and lightning flash pains. The fatigue I manage as best I can and have learned to rest a lot on the weekends. There are still times when I am asleep at night before 9. I joke with Evelina that I’m just getting older and eventually you’ll find me at the cafeteria at 4:45 pm eating dinner.
For my fellow MSers you understand the flash pains. They are the ultimate in shooting pains in my hips, legs, elbows and hands. They hurt pretty bad, but it’s nothing I can’t handle. Like I said, for now I’ll deal with them versus taking carbamazepine.
All-in-all I cannot complain too much. I am sure there is someone in this world who would gladly switch places with me. Isn’t life funny like that? We think we have struggles until we read the story of someone who is fighting an incredible battle.
I hope everyone takes time be thankful for the simple pleasures of being able to walk. It it so easy to take it for granted.
One thing that I have realised after living with multiple sclerosis for almost 25 years is just how variable it is. I was initially diagnosed as having ‘relapsing remitting’MS (RRMS). I was never sure when the next relapse would arrive. At one point, I went a whole 8 years without a relapse, feeling great with no MS symptoms, then I had 3 relapses within 18 months. As time has gone on, my relapses have stopped but the progression of my disease has become significant.
Have I moved into‘secondary progressive’MS (SPMS)? My heart says yes; I seem to fit the criteria perfectly. But my health care team seem to be reluctant to provide me with this label, perhaps because there are fewer treatments for SPMS and they are keen for me to continue on a Disease Modifying Drug (DMD) to see if it can slow my progression. I…