Touching...

After a rough night from my injection I woke up with more than my usual degree of parathesia. 

I know it's normal because of my fatigue. It also increases with the cold and today is certainly a cold day. 

I googled what I'm struggling today. I did it because I feel less alone when I read the words that someone else wrote and it so accurately describes what I'm living. 

Parathesia

Changes in the sense of touch called paresthesia are seen with MS and are experienced as a sensation of tingling, numbness, deadness, itching, burning, etc.

■Numbness can be the inability to notice a light touch, pinches or feel heat and cold. Due to the fact that numbness can result in a reduction in sensitivity, the chances that a patient could accidentally injure a numb hand or foot are increased. Precautions must be taken to protect the area from receiving cuts, blows, bruises, burns or any other kind of injury.

■Itching is a feeling of tickling or irritation in the skin that makes you want to scratch the area. Itching (also called pruritus) can appear suddenly and be quite intense, although it usually does not last very long. It can appear on any part of the body and the face. The itching associated with MS is different from regular itching because there is no irritation or rash on the skin.

■Tingling is a bothersome, tickling feeling in any part of the body and is not cause by an external stimulus (skin irritation) or a lack of circulation (leg "fell asleep").

■Burning is a feeling of sunburn. These changes in sensitivity can occur in any area of the skin, but it is usually felt in the fingers, hands, feet, arms or legs.

I remember early on in my MS my goal was to be normal again, lose all signs of MS. No more parathesia. Somewhere along the way that stopped being my goal. I think that's because it's no longer realistic. Instead I need to focus on a goal that is attainable and not set myself up to fail.  

Today my MS is worse than yesterday, but my goal is that tomorrow will be a better day. 

Alone vs. Lonely

I've been alone but not lonely. I've also been surrounded by others and lonely. 

The two words mean two very different things. I am ok being by myself, alone, content with the moment. What fills me with sadness is the feeling of loneliness, especially when you are with other people. 

This week I had a neurologist appointment which I was very anxious about.  I couldn't convey my fears and concerns to my friends and family.  After the appointment I had a lot of information from the doctor to process but no one to process it with. This made me feel very alone with my MS. It ended up where an entire day passed where my husband didn't ask about my appointment and I didn't initiate the conversation. The more time that passed the harder it became to open up and let him in.    

While I would never wish this disease on anyone, it hurts knowing that while those that love me will always support me they will never understand. I know this because I used to be just like them. Listening to my Mom speak of her MS I heard what she said, felt sadness for what she was going through but I could never truly understand......until now. 

I can share my fears, my feelings, my thoughts but my friends and family can't understand and that makes me alone and lonely. 

Music



My husband and I went to the Brad Paisley concert a few weeks ago and the experience for me was made so much more special because I was able to share it with him.

We have done many concerts over the years, particularily my obsession with Big Sugar, but this was the first time he humoured me with my love of country music.

I was moved not only by the words of Lee Brice and Brad Paisley, but I was moved by the memories created with my husband.

What I didn't share with him but was overjoyed to feel was the vibration and humming that went through my body as the band played.  As I sat there holding my husbands hand it hit me that for that moment I didnt feel I had MS.  My hand, the tremors stilled by my husbands hand, the numbness and tingling no longer noticable as the music hit me and filled my entire bodu with the vibration of the music.

I felt no pain, no MS. 

Feelings of wonder beyond my ability to explain