Am I Strong Enough?

I have been told by many people that I am strong. Strong in how I keep moving forward in spite of all the bullshit that is thrown at me. Strong because in the face of everything I try to have a sense of humor. Strong because most people couldn’t handle all the shit that I deal with daily.

You know what the secret is? I am not, I am not strong, I do not want to keep having to deal with everything that keeps coming at me. If I could chose, I would say “No THANK YOU!” or “Fuck Off!” but no one is listening. No one is giving me the choice to not be strong.

I get that most people don’t think they could handle it, but you don’t know until it is the only option you have. I think of this frequently when I say something stupid to a mom with twins like “good for you, I couldn’t do that”. They didn’t have a choice either, they have to figure out how to handle multiples.

This last week I am fairly certain I tore my right biceps tendon, but I can’t get into the doctor for 2 weeks. You might think that is a weird thing to be certain about, except I tore my left biceps tendon last year so I know exactly what that dull, throbbing pain feels like. The constant weighted feeling in my shoulder if I use my arm.

Yesterday we took our boys to the mall, my body’s internal temperature regulator does not work, thanks MS. I am walking around the mall with my husband, son and service dog trying to have a good time for the kids. Meanwhile my face is turning red, my husband tells me my face is beading with sweat like I was working out , I start to lose all feeling in my legs (causing a weird limp) and all of my pain was intensified and my brain felt like it was melting. None of this was by choice. I am not a toddler, if I throw myself on the floor and have a tantrum or start crying not only would that embarrass my entire family but someone may call 911.

There have been times when people tell me “God only gives you what you can handle” and to that I say “Bullshit” and this is why I am not strongly religious. What kind of asshole gives a person MS, Meneire’s Disease, PCOS, torn hip cartilage, torn tendons, anxiety, alopecia an all the small things wrong with me and all the worse symptoms of the main issues too.

I am three months late getting my infusion for my MS, first the hospital messed up twice and then we had to wait for insurance. I finally got it approved and today my insurance approval letter says the medication that is given twice in two weeks at 300 mg doses was approved for one time of ONE mg. I am done! I am tired of fighting but I have two children and a husband that need me so I don’t have another choice I have to keep trying to move forward. It’s like climbing a escalator going the opposite direction, it’s hard and exhausting but the only other options aren’t great.

So, sorry for the long ranting of this post, but the message to take from this is you don’t actually have to be strong to look strong to people who don’t know. Mental health is important and this is why I talk to a therapist every two weeks, more frequently if needed. It’s a place where I get to not be strong to the outside world, I feel safe being vulnerable and I don’t have to worry about anyone else during those hours. I don’t have to worry about making my children or husband worried for me. You don’t have to be weak alone, you can find someone to talk to that can help you work through all the unfairness that comes your way. Work through anger, fear, sadness and resentment, oh how my therapist would be proud of me with acknowledging feelings other than anger.

It’s hard, life can be difficult and frustrating. There may be days you cry in the shower so no one knows it’s happening (shhh not me, ok don’t judge me). I do my best to try and give my boys good memories of their childhood, I work through the pain on the days I can and watch movies with them on the days I can’t.

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