Parenting with Forearm Crutches

Oct 23, 2021

To say that Halloween is one of my favorite holidays would be an understatement. So I booked The Mini into an arts & craft event in a neighboring town. Traffic was unbearable getting there. Once I got closer to the town center I saw that there was a huge Fall Festival happening. And so did The Mini. 

What to do? There was no parking close to our destination, it was a mad house. 

So I chucked my self image aside and grabbed my forearm crutches. I had never used them in public and only kept them in the car for an imagined emergency. I decided this was an emergency. I found parking way down a side street.

I grabbed my purse, my crutches and my kid and we were off. It took me about 400 yards to get a groove.  The Mini was so excited about how fast I could move.  Fast like Sonic, if she is to be believed. I was moving right along, i felt stable and much less nervous about falling.  She ran ahead always coming back to me.  This was our first big event since my surgery in August.  I had skipped the big regional fair, nervous about falling in public.  

Once we got closer to the excitement I realized. I have a five year old, in a costume and we are about to enter a huge outdoor festival and I can't hold her hand. I was panicking. 

Real Quick: Make a Plan.

Me: "You can't hold Mummy's hand. But you can hold my purse strap. No one will hold your hand, stay where you can see me, shout for me if someone tries.

She nodded like this  was the most normal thing in the world.  She held my purse strap when we crossed streets and stayed with me.  The night before I watched the perfect sermon posted by my pastor for this moment. Here is my social media post about it,  You can see the sermon here (link) if you are interested.

Perfect sermon for me. Last night, after watching this sermon yesterday, I was very bold, and without planning, went to an outdoor festival with Zetta that I didn't know was taking place. I had to use forearm crutches to manage the long walk and crowds. I thought back to this sermon as I moved along crowded dark streets with a five year old, not being able to hold her hand. People didn't always notice that we were trying to get by, but more than once as I looked in panic for Zetta someone would point her out. I am so happy that last night we had such a great evening. The kindness of others, giving help unobtrusively, made all the difference.

As a parent with a chronic illness I have learned I need to accept help, and sometime even ask for it.  This outdoor festival was just what I needed to keep her life as normal as possible. 

I woke up a couple days later feeling better about my symptoms.  One thing that I notice is that when I am feeling powerful mentally, when I am feeling like a good mum, I am more able to cope with the symptoms. 

Oct 25, 2021

Hi Dr A.

I took my last oral steroid this morning and wanted to update you.

I am definitely doing better. Not to where I feel 'normal' but much more even.

I have intermittent burning still in my lower legs. (Not my whole leg and not painful like it was) Short bursts lasting 5-15 second of numbness and tingling in my whole legs that depending on how severe can make me feel weakness to hold myself up but I haven't collapsed or anything again. 

Walking over 50 yards (parking lots, school hallways) lead to lots of numbness in my feel. Farther I walk, higher it goes. Standing for a few min is fine, but I have found that standing totally still mean my feet feel like I have pins and needles.

 

My grip in my hands seems back to full strength not dropping things, but I do find that I am still having problems with sustaining grip if I'm fatigued. 

 

Since starting the oral I have been only getting 2-4 hours of sleep and I'm normally a 7-8hr person so I am sure that is impacting. 

 

The fatigue that is hard to get through seems to come on after a bad numbness spell in my legs but I can push through it if I just concentrate on resting my mind and body for 5-10 minutes, but I think it may be more about good sleep than my MS.

 

So overall. Getting better, I'm finding positive work arounds to manage and I'm not as panicked. 

I do the PET Scan Wednesday and I think I have done everything on my end for the new medication. 

Thank

K

 

p.s. If you are wondering why I went for a PET scan it is because I take every opportunity to be a lab rat for studies at a large research and teaching hospital about 45 minutes away.


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