Knowing When to Stop

Knowing when to stop has never been something I’m good at. I’m going to go full steam ahead, 125% until whatever it is, is done.

The problem with that is MS doesn’t give a shit what you want to do. Knowing when to stop can be the difference between partial completed and ok or having it done but being useless for days.

This has been a struggle for me since diagnosis. Whether it was work, household chores, physical therapy, it doesn’t matter. You tell me it would be better if I could do these balance exercises twice a day I will, until I can’t see properly and can barely move after two or three days because my body and my brain have communication issues.

I’m not going to lie, I still have problems with holding back. Anyone who has MS can tell you some days are better than others. Don’t make it harder on yourself by pushing through when you should be taking a break.

4 years since diagnosis and I’m still learning, my disease is ever changing though so I have to keep adjusting. Today I did the dishes, then I rested, a lot, I also got a migraine. Yesterday though I was in a house full of people for 30 minutes before trick or treating and I should have taken that into consideration today.

If you’re reading this and don’t know MS or anyone with it you probably think I’m lazy for only doing dishes, but I’m not. I managed to give myself a migraine by trying to get something done today instead of resting my body and brain.

Take time, take breaks, chronic illness sucks hard. It’s a learning curve and I am right here with you, learning too.

So many specialists…

When you have a chronic illness it usually means you have more doctors than your typical patient. I have more than one illness so I have more than 20 doctors and physical therapists in my Rolodex.

Tomorrow I see a spine specialist for the first time. I have had spine pain since I was 16, it has gotten progressively worse over time and as such I just got use to the slow increase of pain.

The reason I’m just now seeing a specialist after more than 20 years is because the pain was completely gone for 15 months after I had stem cell treatment. Once that 25 months was over the pain came back full force, no gradual increase just BAM!

That was the first time in my life I understood the need for heavy pain medication and how someone could come to depend on them.

I had assumed the pain was related to my MS and a lesion near that location on my spinal cord but my neurologist informed me that was not the case. On his referral I get to add yet another doctor to my file.

The takeaway from this that NOT everything is related to the major health issue and if you discuss it you may never know. Also, spreadsheets, because I can tell you for sure one small spreadsheet with doctor’s info is a lot lighter than 25+ business cards.

Summer Heat and Multiple Sclerosis

Summer time brings to mind beaches, swimming, vacations, outdoor activities with your children. For those with MS, it means that but it also means cooling vests, air conditioning and if your MS gets aggravated by the heat, increased symptoms. This effect was first noticed in 1824 when Charles Prosper Ollivier d’Angers put a patient in a hot bath and noticed worsening symptoms. Wilhelm Uhthoff noted that this not only occurs with patients in a hot bath but also with increased core body temp due to exercise and activity.

“Demyelination produces alterations in saltatory conduction, slowed conduction velocity, and a predisposition to conduction block. An estimated 60–80% of MS patients experience temporary worsening of clinical signs and neurological symptoms with heat exposure.”  In addition, lesions can occur in parts of the brain that manages temperature regulation.

A report on hypothermia in MS lists different MS patients who died due high temp levels and the inability to regulate their temperature. A temp of 32 degrees Celsius (89.6 Fahrenheit) caused the death of a female MS patient in her early 60s  in 2018. I feel this is not discussed as often as it probably should be. At minimum I think the doctors should be advising their patients of possible issues rather than finding out on their own. There are people newly diagnosed that don’t do research because they believe their doctors will tell them what they need to know.

“Fatigue during thermal stress is common in MS and results in decreased motor function and increased symptomatology likely due to impairments in central conduction.”

How this shows up for me means no hot coffee, hot beverages increase my core body temp so even in the winter I drink iced coffee and iced tea. My house is set to 74 degrees Fahrenheit during the warmer and hot months. When the ambient temp reaches 75 all of the nerves in my body react, electricity pulses through every nerve causing a ridiculous level of pain.

Things that can help cool you down after exposure to heat or increased core temp are frozen treats, ice cubes, ice packs on your body, cooling vests, very cold drinks, and cool showers are some that work for me. I choose to spend the hotter parts of the day and season in side where I can regulate my body temp because sometimes it is days before my body recovers from over heating.

I have tried several types of cooling vests, all are meant to be worn close to your skin under your clothes. The cotton vest which the style is most like a regular vest in style is fine when you put it on but once it is no longer icy it is just very heavy and bulky. I tried another that used columns of ice packs in a lighter weight style vest, but it was still bulky under clothes. The most recent one I purchased is made of the wicking type material used in sports clothes so it is light weight and does not add a bulky layer of fabric when you are trying to cool down. It is a little longer than a sports bra and uses columns of ice in pockets; this allows you to add as much or as little columns and you need and can be replaced fairly easily. It fits ok under a sundress so while it will still be noticeable it looks more like a bra than a weird accessory and replacement columns are small enough to fit in a lunch box sized cooler if you are going to be out for the day.

Sources:

wcmea_newsletter_fall_2010

Hypothermia in MS

https://www.physiology.org/doi/full/10.1152/japplphysiol.00460.2010

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980380/

https://www.stuff.co.nz/national/100921402/christchurch-woman-with-multiple-sclerosis-dies-of-overheating

https://www.webmd.com/multiple-sclerosis/news/20150527/ms-may-raise-odds-for-earlier-death-study-finds#1

7 Strategies for Coping With MS Heat Sensitivity