Motherhood, Multiple Sclerosis and Isolation

Isolation is an unpleasant feeling and I think perhaps a bit shameful. At least I feel shamed when I’m feeling isolated.

I have friends, I have a solid group of mom friends in addition to non-mom friends. So why do I feel isolated when my husband works late almost every night during his first week at his new job? In part he’s late because he’s getting to know co-workers so he has to stay to finish work. I’m not angry at him for it, I’m actually happy for him. Finding people to connect with in a new environment is hard, it gets harder with age.

Perhaps I’m a bit frustrated at handling everything at home and dealing with sibling fights, homework, dinners, Cub scouts and all the other shit that I normally have a partner for so I’m not out numbered. So I feel bad and a bit ashamed of myself for getting upset that I’m here, parenting alone with no energy.

More likely it’s because this week as been rougher than I’d hoped. Taking a week off of things to recoup from being in a social setting for 10 hours hasn’t been as relaxing and restorative as I planned.

I feel terrible, my body aches, I’ve had a headache on the verge of migraine for 5 days now. I had a cookie that I feel bad about eating because I was doing really good with keto. Arguments about bed times and video games are never ending.

No one wants to hear how super shitty I feel this week so I sit with it, hold it in like a secret. I don’t want pity, nor do I want someone to say the things they think they should because I answer honestly when they ask how I am.

So I isolate myself more so I’m not a burden to others. I don’t have to be another thing for someone else to worry about. I’ve got this, I may not be doing well but eventually it will balance out, it usually does.

My MS and Social Consequences

Everyone’s MS shows up differently. For me, either my brain is working ok or my body is working ok but they don’t typically both work at the same time.

Yesterday I had physical therapy but I knew I was going to a co-worker’s going away party last night. I planned for it, did my PT and had about 6 hours to rest before going to this social event.

What I failed to remember was that I’ve been out on disability for nearly 6 months. With the exception to 2 short visits to the office since March I haven’t been around. People noticed, people had questions and wanted to catch up. It was great, thoughtful and made me feel a tad bit better because I just assume no one actually gives a shit if I’m there or not.

I had one drink to take the edge off the pain so I could have a conversation. I had many conversations though, and using my brain to follow so many conversations has a price to pay the next day.

While the night of catching up lasted less than 2 hours I woke up barely able to move. Muscle and joint pain ripped through my body as I tried to put on a bra and top, numbness in the whole of my legs made putting my jeans on a touch harder than just the typical balance issues.

Today, I will pay for all those conversations. Today, I will rest most of the day before my youngest son’s eye appointment. Hopefully tomorrow I’ll be back to my standard baseline or I will rest more.

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.