March is Multiple Sclerosis Awareness month so in honour of that, I thought I would write a little about what MS has been for me, and pardon me if you’ve already heard it all, but I’m just going to go ahead and blame that on the brain fog!
Speaking of brain fog – You know that feeling you experience when you walk into a room and you can’t even begin to remember why you went there? That’s what it feels like somedays to the best of us, but it seems to happen more frequently when you have brain fog due to a chronic illness, in my case Multiple Sclerosis. On some of the really challenging days (and sometimes even on really good days) I leave behind a trail of unfinished tasks, deserting them to wander around the house for some reason that I can’t for the life of me remember, or sometimes it’s because I walk in another room only to get side-tracked and do something else that wasn’t even on my to do list for the day. Sometimes I remember the actual reason for wandering into a room, but that isn’t always a given.
Life with a chronic illness like MS means that taking care of yourself needs to be a full-time job, one that people don’t always understand unless of course, you are forced to do so. I won’t lie, I never really understood it when I was first diagnosed and my Neurologist would patiently tell me particularly as I was explaining the stress of my job, the long hours I worked, the little to no time for a personal life, and all the rest of the things that most people take for granted. She tried to tell me this over and over again, but as my disease progressed, I eventually began to realize that she wasn’t just talking to hear herself talk (like I do occasionally), but that she actually knew what she was saying.
I’ve had a great relationship with my Neurologist, one that has evolved over the past 16 years however, there have been times that I have questioned and even doubted her. An example: for 2 years I complained about pain in my hands. Shooting pain, numbness, stiffness, loss of strength, etc and I was positive without a shadow of a doubt that it was due to my MS (because it was both hands & I thought Carpal Tunnel affected one hand only, don’t ask me why, but that’s what I thought) but she was sure it was Carpal Tunnel. Over the years, I tried all the exercises she told me to do, I used a splint, I rested, I iced them, I elevated them, I took pain relievers, you name it, I did it and nothing helped with the pain and it was increasingly getting worse and more debilitating and was affecting my whole arm. I muddled through until one day it all came to a head as I was out golfing and by the time I got to the 7th hole, I was in excruciating pain in my left hand, which by the way was my non-dominant hand, yet another reason for me to think it wasn’t Carpal Tunnel. I was in so much pain that I ended up going to emergency because I just couldn’t get ahead of the pain – I mean nothing took it away, not even their super powered pain meds. I had reached my breaking point so during one of my semi-annual appointments, when we were again talking about my hands, it was clear that I was fed up, emotional and worn out so when she said “I know you don’t want to hear this, but I am sure you have Ca”……..I lost my sh&% and told her “if you tell me it’s Carpal Tunnel, I’m gonna punch you in the face”, like a lot of things I say, it just popped out and I immediately thought oh my Gosh, did I just say what I think I said? I thought surely, they are going to escort me out of here (because there is a zero tolerance policy for piss poor abusive behaviour) and I’m going to be looking for a new Neurologist. But bless her heart, she leaned back in her chair where I couldn’t reach her and said, please don’t punch me, but I do still think you have Carpal Tunnel but we need to send you for some nerve conduction testing to be sure of what is actually going on. We will do our due diligence and get this figured out for you.
If you haven’t ever had one of these tests done, a nerve conduction study (NCS) measures how fast an electrical impulse moves through your nerves. During the test, your nerve is stimulated, usually with electrode patches attached to your skin. Two electrodes are placed on the skin over the nerves with suspected damage.
One electrode stimulates your nerve with a very mild electrical impulse and the other electrode records it. The resulting electrical activity is recorded by yet another electrode. This is repeated for each nerve being tested, and while it is unpleasant, it can quickly identify nerve damage and the extent of that damage. So, I was sent for the testing immediately and I had almost no nerve functioning in my left hand and very little in my right. And to top it all off……… the specialist agreed with my Neurologist that I indeed had Carpal Tunnel – actually Acute Carpal tunnel in my left hand (which is why it was so painful, apparently Acute Carpal Tunnel is quite rare and usually brought on from an injury which I didn’t have) but I was very close to having permanent nerve damage and risked losing the functioning in my hands if we didn’t get it fixed ASAP.
Anyway, I was sent in for an urgent Carpal Tunnel Release and the surgeon told me that my left Carpal Tunnel was almost fully collapsed, but he felt we caught it in the nick of time, however he wasn’t sure that I would get all of my hand functioning back, but I am happy to report that it was almost an immediate relief in the pain and I am about back to about 90% functioning (it hasn’t helped my golf game yet though).
After apologizing profusely to my Neurologist, I made myself (and her) a promise that I wouldn’t question her assessments of my needs until we have fully explored all that could be contributing to what was actually going on with me. It was an eye opener for me to realize that not everything that was happening with my body, was necessarily MS related. She didn’t kick me out or fire me and I am a big enough person to say that I was wrong, and I left that appointment with a renewed respect for her and her ability to help me manage my disease. So, the big lesson you can take away from my experience is to look broader into what is happening and be open to the process of actually finding the root cause of your issues and realize that some issues aren’t always what you think they are and they may not actually be from your chronic illness. Sometimes, you just need to have some faith in your team of doctors to figure it all out. And whatever you do, do NOT tell your doctors that you are going to punch them in the face, I’m lucky that my doctor knew me and knew that I wasn’t actually going to punch her, she knew that I was just extremely frustrated, but I don’t know how all doctors would respond to that comment.
Other things my 16 years of MS means to or has taught me:
- It means that I occasionally need help to get my pants done up, even though I don’t like to admit it and even though I am only in my mid 50’s, it is what it is.
- It means I can go shopping for groceries and cook dinner, just sometimes not on the same day.
- It means the pride I feel from having a productive day can be suddenly swept away by waves of pain or fatigue because actually I did too much, but it was worth it anyway.
- It means sometimes I have to ask for help and 9 times out of 10, people are waiting to be asked to do just that.
- It means sometimes I question my ability to be in town on my own. Will I be able to finish a task? Will I get turned around and confused? Will all the noise and hustle and bustle be too much for me to manage? Will my legs work the whole time I’m in town?
- My life with MS makes me push my limitations daily because I desperately want to feel valued and productive.
- It means sometimes I need two days to recover from an activity that doesn’t really seem like it should be a big deal, but it is.
- Life with MS has meant that I have shut the door on some things I love and would never have stopped doing if I hadn’t been diagnosed with this disease and presented with the challenges it can bring me. But on the other hand, I have opened doors that I never even knew were there for me or thatI actually wanted.
- For me, having MS means deciding whether to live with the side effects of a new medication or decide if I can just “live with it”.
- It means having to swap out cute flip flops for supportive shoes or sandals that may or may not be as cute, but my feet are super thankful, and it hasn’t really impacted the amount of shoes I actually own. I’ve still got some cute and super practical shoes and sandals, and yes, I’ve kept a few pairs of flip flops just in case I wake up one day and don’t have issues walking anymore. It’s also meant that some days you fool yourself, like when I think I won’t have walking issues anymore, but a girl can dream can’t she?
- It also means that there are days that I have reached a new level of resilience. I’ve become somewhat of a warrior (in my own mind at least) who knows what it’s like to experience a win over my set of circumstances, whatever they might be. MS has taught me how to prioritize the things and people that really matter to me.
- It’s taught me that if I hide my illness from my family and friends, I’m not making it easy for them to understand me or to help me.
- It’s realizing that apparently the three times I peed in the middle of the night was not enough, so I have to plan accordingly for the longer time it may take me to get my balance before making my way to the bathroom.
- It’s about trying to push myself but realizing that I can only borrow off of tomorrow’s energy bank for so long before the day comes that I wake up with no extra energy left to borrow from and then its a game of catch up. So, pushing myself is a balancing act. I can push myself somedays while recognizing that there comes a point when pushing yourself is hurting yourself. And it isn’t always easy to find that point. But it doesn’t mean I don’t try.
So, even though March is MS Awareness month, for me and my loved ones it is every month and while many physical changes have occurred MS has also given me the opportunity to make many positive changes and when I look at all those silver linings in my diagnosis, I can’t help but be thankful. While I struggle daily to do the things I used to do and my symptoms can change daily, it is out of my control. But what I am in control of is how I decide to face it. I do not feel guilty for no longer being able to work, I do not feel guilty for asking someone to cut up my meat because my hands don’t work, I do not feel guilty for using a cane or parking in a handicap spot when I need it, because real life requires guts, it requires bravery and it requires vulnerability. I no longer hide my MS, I now wear it proudly because I know that I am not in the battle alone.
Now, for something yummy! My husbands Nana sure knew how to bake (& kill a chicken but we won’t talk about that right now), but in particularly she made awesome buns and wicked cinnamon buns so we are thankful that her Buns in a Bowl recipe will live on forever in our house! Thanks for the memories Nana!
Nana's Buns in a Bowl
Add sugar to warm milk - sprinkle with yeast. Let stand 10 minutes
- 2 Cups Warm Milk
- ½ Cup Sugar
- 2 Tbsp Yeast or 2 packets
Add ingredients below and beat until smnooth
- 3 Eggs Beaten
- ½ Cup Oil
- 1 ½ Tsp Salt
- 3 Cups Flour
Add to mixture and work in until fully incorporated
- 3 Cups Flour
- Cover and let rise in warm space until double in size
- Press down, cover and let rise again
- Grease a large cake pan, form into buns and let rise. until doubled in size
- Bake at 350° for 20 minutes or so until golden brown