Back at It With MS

By Dianne Scott

2 min read

I "woke up" Sunday morning after a bout of insomnia Saturday night. I use the quotations because I'm not even certain I ever went to sleep at all. It was due to an intermittent personal situation that I am all too familiar with. It's what I will refer to with the cliché adage, a different story for a different day. What I will say is, Sunday wasn't the greatest day, but it wasn't a total wash.

This selfish disease

I do know by late afternoon, I was truly spent. Of course, I attributed it to having had no sleep the prior night. Certainly that wasn't without fault. I mean, I'm human and human bodies need rest. But in my case, I'm human and I have multiple sclerosis (MS). And I have learned over the course of my years with MS, it is truly one selfish disease, can never be out done, and must always be a part of ALL things.

My MS flare symptoms

Monday comes and brings with it a tiredness that I cannot shake, and a clear flare. My hands curled tighter to the point where they actually hurt. I had a headache that was unrelentless. I was too tired, had no appetite, and just didn't eat. I was also experiencing blurry vision. My very limited baseline was nonexistent. I was so weak, I had no strength in my upper and lower body to do anything. That's when I realized I was experiencing extreme fatigue - a feat in and of itself because it can shut everything down.

By Monday night, I realized the intermittent cramping in my tummy was none other than the quite familiar UTI settling in. On Tuesday morning, I decided it was time to call the doctor. My primary doctor came Tuesday afternoon. I spoke to my neurologist on a telehealth call Wednesday, mid-morning. I needed provider care. I truly needed to get back to me. But with that said, through my ill days, while all I could pretty much do was lay, my thoughts drifted to which scenario this particular bout might fall under.

What came first?

One of those 'What came first, the chicken or the egg?' deals. Due to the stress of that intermittent personal situation that day, could everything have gone haywire from there? Or, was it a 'here you go again, MS' because the disease seems to always be 'in every boat that sails'? Can it ever just sit still?

And then I rolled my eyes and shook my head in exasperation and thought, 'who cares'? Whether it came first, in addition to, or due to, stand down, MS!

Asking MS for a break

Can I just deal with an unpleasant situation? Could I just simply catch up on some sleep? Could I just suffer a bladder infection until the antibiotics kick in and cure me? Must you always be 'in every boat that sails'? This disease just rears its ugly head no matter what.

Yet, I suppose the disease is true to its traits and triggers. I saw a list of things that can make MS worse, and a number of them, including lack of sleep, applied to me.¹

Touché, MS, touché. Sigh.

Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Therry Neilsen Moderator & Contributor
Dianne, I'm about to do what we ALWAYS tell everybody NOT to do, which is to tell you about a regimen that works hard to keep you from getting UTIs. It's called UQORA, and it's a system to get you D-mannose, a type of simple sugar that binds to e.coli bacteria and prevents it from attaching to your bladder wall and causing a UTI. It also includes a vaginal probiotic, to help the health of the vaginal area, another contributor to bladder infections, and it wworks quite well. It didn't entirely eliminate repeat UTIs for me, so I added an additional prophylactic, vaginal estrogen, which is an ointment that you apply with a tampon like instrument, that helps restore your vaginal tissues. Have to say, my vag has been VERY happy with the vaginal estrogen. I put these medicatoins in place on the advice of the pelvic floor physical therapist I saw this past spring and summer, and I have to say, Uqora plus Premarin (vag estrogen preparation) has been very helpful. Uqora is not covered by insurance, although Premarin is. OKay, advice out of the way, let me say that UTIs are just awful and I'm so sorry you had another one on top of the sleeplessness and this relentless heat. This has been a hell of a summer. Sending you lots of love and support, and the INSTANT that cranberries appear in the market, another sticky cranberry gingerbread! --Therry, a Team Member who has HAD IT with UTIs
Latoya.Juniel Community Admin
I have had my fair share of dealing with this issue and I must agree with you, it's not a pleasant thing to have to deal with. The pain and sleepless nights can really wear a person down. I've done much better myself with drinking more water, not using scented products, and taking probiotics. But it still sucks to have to deal with it when it occurs and I only hope you don't have to keep going through the traits and triggers of this too often. Continue to hang in there and stay encouraged. Kindly, Latoya (Team Member)