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…
I continue to be off work for the time being, awaiting my Access to Workreport regarding adaptations and aids that may support me to remain in work. All this time off has done the world of good for my MS, I have to say. Unfortunately, I can’t say that my symptoms have magically disappeared, but Ihavefound them a lot easier to manage, as I have had the time to rest, sleep and stretch as much as my body needs to. Whether it is because I have had more time on my hands to think, or because they have been changing, I am unsure, but I have been much more aware of my symptoms over recent months.
I have writtenbeforeabout how my MS affects me, both physically and psychologically. Over the past year, since taking up blogging, I have had the opportunity to make new ‘MS…
I never have a Christmas wish list. There’s not really anything I want. I already have everything. All of the meaningful things in life. Two beautiful kids, a loving man, and the best sister. Parents that love me, friends, and a roof over my head. That’s all I need.
Gifts have never been on my priority list. Material things are just things. So when asked what I want for Christmas I usually say nothing or I don’t know. What could I possibly want?
A new leg, a new eye, not to walk like a drunk. Just kidding!
A couple nights ago and like most nights I was unable to sleep. Thanks again MS…lol. I don’t want to keep anyone up with lights or the TV so just like every other night I have nothing better to do but entertain myself with thought. A traffic jam in my brain. Yes I…
I know a lot of my readers suffer from chronic pain and I try to be an example of how to fight back. Today I went for a quick walk. I didn’t want to and my body yelled at me every step of the way, but I know I have to do it. I look at exercise like this…if I don’t force my body to move, then MS wins. I know a lot of you don’t exercise because you have told me so. You have said it hurts too bad. You have said you are too tired. I get it.
I almost had to call Evelina to come and get me, but I didn’t. I willed myself to finish what I started because in the long run it will benefit me more than sitting around doing nothing. Do you think I want to? No, I would rather sit and do nothing.
To those who tell me they cannot I would challenge you to begin thinking about what you can do instead of what you cannot do. If you can only walk to the end of the driveway then do so. If you can do arm lifts from your chair, then do so. If you can swim in the pool, then do so. Do what you can do, but don’t settle for doing nothing.
And it begins by putting one foot in front of the other.