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.

Exhausted but Unable to Sleep

I’ve had trouble sleeping for as long as I can remember. My mother tells me my whole life. I’m constantly tired because of my MS and when I get a chance I nap.

By the time I get into bed at night all I want to do is sleep. I have numerous medications for sleeping, pills to keep my nerves from being assholes, pills for back pain, pills for my spastic legs, other pills for things I can’t remember right now and cream for back pain.

You would think I’d have no problem falling asleep with all that assistance, and yet here I am, on my phone because while I’m exhausted and yawning I’m not “sleepy” yet. Usually I can listen to podcasts or play a matching game and that will help.

It can’t just be me, my husband falls asleep easily and my boys struggle some days (probably thanks to my genes).

Do you have issues sleeping or getting your kids to sleep? What works, I’m hoping for suggestions to try.

Mental Health – My Story

By now you have hopefully read all the other mental health blogs I have posted so I am not going to explain the different types and definitions in here. This will just be me… as terrifying as that is for me.

As a person who is diagnosed with MS I can tell you the grief still hits me 5 years later. Of course I grieve the person I used to be, I grieve the person who I always imagined I would be. I have anxiety about being a mom and a wife with all of the unknowns of this terrible disease. Having no control of how my body behaves or how it will behave in the future is the hardest part for me when looking forward and making plans. I LOVE making plans, I like knowing what my schedule looks like for the next few weeks or months. I can plan my rest and chores and doctors appointments in there and perhaps some grown up time with friends and date nights with my husband.

I have anxiety about embarrassing my kids when I go places with them because I cannot control my body’s reaction. I have to use Oak as my brace and balance when out in public. If it’s too hot I leave him home (soon to be remedied by some awesome booties his new trainer told me about) so he is not walking extended periods of time on hot cement. When I don’t have Oak I use a cane, or a walker, and I am always very aware of how that probably makes them feel. It may just be in my head, I don’t want to be 30 something using a cane or a walker… I am not old yet!

I have a pit in my stomach caused by the dread I feel about my future. Will I be at their graduations? Will I be in a wheelchair if I am there?

In the span of 10 months, starting at the end of September in 2015 I was rear-ended 3 times. All three times my youngest son, who was 3 at the time was in the car. My therapist tells me that it’s not just “fight or flight” there’s actually also freeze. This is what I did, and do once I looked back on so many of the accidents I had in my life. I stopped short of a truck that stopped abruptly to avoid hitting a car stopped on the road that first time. I took a breath at my skills of stopping us safely and looked in the rear view mirror just in time to see a sedan NOT stopping as the sped toward my car. My SUV was slammed into the truck in front of me and the only two things that I thought were “but I stopped” and if my kid was ok. I was so concerned for my son that one of the men at the scene actually came around and asked me to please move the other side of my car so that I wouldn’t get run over.

Growing up in southern California in the 80’s seemed like such a dangerous place in the news and community. It most likely started with the abduction of Adam Walsh and then there were so many other missing children after that. A girl was taken from her home during a sleepover with her friends, helicopters flew around my neighborhood with a bullhorn announcing descriptions of missing children (this was pre-amber alert) and milk cartons were plastered with faces of kids who were no where to be found.

We were latchkey kids, my dad worked out of town mostly and my mom worked bankers hours and LA traffic is no ones friend. We were to come straight home, lock the doors and not answer it for anyone. If someone did come to the door we would turn off the TV and hide behind the furniture (because kids don’t realize turning the TV off only secures the idea that someone is home). I remember that our neighbors called the police one time because she was a stay at home mom and felt it was her place to get into our business of being home alone for a few hours. The terror that rose in me when the police came to the door was immeasurable. We refused to answer the door, we turned off all of the lights and we continued to ignore them even after one of the slipped a business card under the door. That was one of the times that my father must have been working locally because I remember he came home, gave the police and the nosy neighbor the what for and congratulated us for not opening the door. I don’t remember her being in our business after that.

When I was four I was cut in the arm by a pocket knife while visiting my aunt in Reno with my brother. I remember being put in the bed of my cousin’s truck because of all the blood and the 4 stitches required in my arm. I even bandaged my doll so we would be the same. About the age of 7, I was clawed in the eye by a cat that was thrown at me, and it required surgery to remove an oil gland from my eyelid, I had to wear a patch on my eye as school started that year. It was humiliating. We had earthquake drills at school to prepare the inevitable occurrence and there were many days we had indoor recess because the Santa Ana winds would blow all the ash from fires our direction.

School told us that if there was ever a fire at home we could not stop for anything, just immediately leave the house, of course as a child this would not work for me, what about my dolls or my favorite books, or clothes. It was so stressful to me that when my uncle accidentally showed up on my birthday one year (he wasn’t a kid guy and I still remember the uncomfortable look on his face when he realized it was my birthday) he said yes and took me to a store to pick out anything I wanted. Blissfully, I picked out a hot pink duffel bag, in my mind this solved one thing that was a constant stress for me. I now had a perfect place to put all of my beloved items in case of a fire, there would be no stopping, it was at the bottom of my bed and one swift move would be over my shoulder and out the door with me.

On my 7th birthday my dad took me to get my ears pierced, I was so excited. He took me to the mall and I selected my little studs and the girl at the shop pulled out this gun contraption. Did you know that these could fail to work properly? I didn’t, I soon found out they could though. The left ear she started with did not go all the way through the first time, the pain was still there but no stud. She did it again, at this point I was terrified but my dad was there and I was going to be brave. Eventually she did get both studs in but I will never forget the fear that day. When my holes closed up about 10 years ago from a lack of wearing earrings often enough I was very worried when I went to get them re-done. Thankfully, that time there was no issue but the anxiety was with me the whole time.

I was a very anxious child, I chewed my nails and worried about things I could not control. My parents did their very best at raising me with their life experience and what they knew. I never told my parents how scared I was or that I slept facing certain directions in my room depending on which way I thought a predator I heard about on the news would come in to steal or murder me. They didn’t know, because I did not tell them, I wanted to be brave and I probably wanted to be their favorite.

I have also been the victim of domestic violence and sexual assault, I have been lied to and cheating on by partners I trusted. I was bullied in school and teased because of my name, I got into fights and got cornered and jumped by girls. I lived in a world where being a girl wasn’t good enough, we weren’t male so therefore we are less. All of these things in my life were internalized, buried deep and how I tried to forget. Even when these things are not at the surface though, they change you, slowly until you forget who you are and who you want to be. You must face them to release its power over you and be healed, healthy and happy.

If you are reading this and don’t feel safe to talk to someone, or are worried about being judged, or are not ready to contact a therapist just know, I am here. I understand and if you want to DM with me, I will be more than happy to listen, read and lend a supporting ear to you.