Pride Wins Again

I was so embarrassed!

After my husband paid the bill, the receptionist slowly ushered him to the side and whispered, “It’s getting hard for us to pick her up. We need you to stay if she comes back.”

If?

I have talked about going to the hair salon a couple of times. I consider it one of my few real treats. The problem is, lately the hairdressers have to help me out a whole lot. I need help getting in and out of the chairs for washing. And drying my hair is the worst part. I am already weak and once I get under the hair dryer it zaps all of my remaining energy right out of me.

But nothing compared to what happened during my last visit. I asked the hairdresser to stop so I could use the restroom. I probably needed someone to close the door, help me pull my clothes down and physically get me to the toilet.

But I didn’t say anything. Nothing.

I just rolled to the restroom alone. Was it my pride or did I really think I could do it myself? I’m not sure. But as the urgency to micturate increased, I began to panic. Once I entered the restroom, I realized I should have asked for help. Then before I could make it to the toilet, I fell on the floor and urine spilled from me. It was all over the restroom floor then migrated into the hairdresser area.

I was so embarrassed!

Two women from the salon had to come into the restroom and help me.

After that incident, I really understand their reservations about having me as a customer. I can be a handful. And I must give it to them; they went above and beyond. Often, it’s like they were nurses to me. For this reason, when they voiced their concerns, I could not complain. So when they asked my husband to remain in the salon for the next time I come, I was just ecstatic that I could even return.

I guess MS won this round but I’m not giving up. I just hope my husband starts staying in the salon while I get my hair done. This is huge because I know he doesn’t want to stay there for hours at a time. I’m there for 2 to 4 hours, depending on what I’m getting done. Hell, I don’t want to stay that long either!

restroom

Twists and Turns

How does one prepare themselves for this?

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I am always in the toilet

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

Hard To Hear

Sometimes the reality of having MS can hurt.

Yet again my neurologist surprised me with his dedicated work efforts by calling my home the other night around 9 pm. Because it was so late his call caught me off guard and the first thing I could think of was it had to be bad news? Luckily the call was because he needed my help completing required paperwork for the yearly renewal of my long-term disability. He was asking me a plethora of questions about my personal activities of daily living.

Can you get in the shower without assistance?
Do you have problems getting to the toilet?
Are you preparing your own meals?
Can you be left in the house alone?

To be honest with you, I need assistance with all of the aforementioned tasks to varying degrees on varying days, but for some reason I couldn’t relay that to him. My darn pride just kept creeping in. The worse part is, I know that he needs an accurate description to ensure my continued claim. I naively, tried to pretty up my situation. But I obviously didn’t because during our conversation he bluntly said, “You have been on a continued decline since I started treating you.”

Wow!

What could I say after that? There was just silent agreement on my part.

After the conversation, I was scared. Terrified of my not so distant future. But my husband reminded me that the doctor didn’t tell us anything we didn’t already know and live with on a daily basis.

That’s true but so hard to hear.

When Nature Calls

Due to the personal and humiliating subject matter I almost didn’t release this post.

“I came very close to not releasing this post, due to its inherent personal and humiliating nature. But at the last minute, I put my big girl panties on and decided just maybe someone could relate and perhaps even empathize.”

This past week we noticed a sudden decline in my health. The things that I had been able to do for a while, I could no longer do! Plus, you remember that entire post about me transiently losing the use of my legs? Well it is still happening. At times I’ve been extremely fatigued while other times I am as normal as I can be.

Now I know what was causing such a dramatic change in my condition. Have you heard of urinary tract infections (UTI) or bladder infections? I don’t tend to experience the typical symptoms of a UTI, instead my MS symptoms just get worse. This means I get extremely fatigued and have more trouble ambulating. The bad part is I know how UTIs affect me, but I totally dropped the ball on this one! I failed to see it coming, even though I was having to use the bathroom four times an hour! Guys, I can barely walk so making it to the bathroom in a timely fashion sometimes just isn’t possible! There were accidents to say the least. I mean embarrassing life changing accidents, as I perceived it.

The one that finally sent me to the doctor occurred at my mother-in-law’s house!!!!! I was mortified! Someone was in the bathroom so I ended up letting lose in my sister-in-law room!! AGHHHHHHHH!

How did I get there? Well, originally I thought I could hold it until the bathroom was free. If I had known Tommy was the one in the bathroom I would have banged on the bathroom door like a mad woman. As it was I didn’t want to make a scene. Ha! So I came up with the bright idea to look for a towel that could possibly intercept the impending flood. I frantically side stepped into his sister’s room. I was cupping myself like I could catch the urine as it flowed like a river out of me! Standing there gripping the wall for balance while holding myself I thought I was going to die of pure shame!

I finally yelled for Tommy. Both him and his sister came running in the room. They both started cleaning up the foul smelling urine.

“I’m so sorry.” I whispered to his sister.
“I’m so sorry.” I managed between sobs.

She smiled and said, “Nicole, I have a 3 year old. This is nothing.” I was immediately relieved but somberly  guarded and replied with a half hearted smile. After Tommy had completely fumigated the bedroom and bathroom, he asked me if I wanted to go to the store. I said, “Sure I need to pick up a case of Depends!”

Later when we returned I called my doctor. My mood was slightly lifted as I now had protection and was headed in the right direction. His sister knocked on the door, peeped in again and reassured me everything was okay.

I naively like to think that my mother-in-law didn’t have a clue of what had just taken place!

Sometimes denial works.