Fear is just overwhelming me today.
My left tibial nerve (in my left ankle) is really starting to bother me. Normally the right one is the worst nerve problem I have and is what makes me unable to walk more than a couple blocks or do things. So I lean on my left one a lot. For some reason, it is REALLY starting to bother me the last few days and has this burning/stinging pain that is intense and all down the nerve pathway.
I am terrified for two reasons: a) this is the way I get around, leaning on this leg! and b) I can’t drive more than a mile because of pain and numbness. I drive with my left foot (I know, illegal) to my pool that is about exactly a mile away. Now I am terrified of just being stuck here without being able to do the only thing I enjoy and get to my pool.
Add to this that I am having a bout of attacks in the nerves in my arms again…it feels like things just keep being taken from me. This makes it hard to write sometimes and yesterday I was eating pistachios and couldn’t open them because my fingers wouldn’t move properly.
It’s just that I came to some peace with where my body is at, but I cannot come to peace with things getting worse.
I am just so scared.
I also kind of feel like no one in my life understands.
[Except, side note, I did have a really good phone appointment with my neurologist yesterday. She finally is on the same page as me that something is really really wrong and supported me that we would keep eliminating conditions one by one and she will be there for me.]
I am getting the diagnostic test for the most likely reason behind this on Friday. We are really pretty sure I have this disease, everything fits. If it is not this, it is in a huge group of similar diseases that can be diagnosed with genetic testing, whether inherited or due to a mutation.
I guess what I need from people in my life is for them to not think that I want them to fix things when I am distressed. I really just want them to tell me I am brave and that we will work together on figuring this out and finding solutions to each obstacle.
I feel like my mom and my boyfriend, because they love me so much and just want to fix things, think that when I ask for “help” that I am looking to them for an immediate solution. I know they WANT to give me an immediate solution, but it just ends up annoying me and making me feel more down because I can’t always do what they suggest physically. I am more looking for support and acknowledgement of everything I go through, of how hard it is. I am looking for hope that we will find longer-term solutions, not to the overall problem (there is no cure for this), but to the little obstacles that come my way, how to modify things for me.
For instance today, I just wanted to hear : “This is only temporary. In time, we will save money and get you a handicapped car or live on a bus route. I promise. And we will brainstorm for what to do right now. Remember that in time you always find a way to make accommodations work. You have done that this whole year.”
Maybe I should tell them this, tell them what I really need. That I just like to feel brave and to hear that they are there for me and things along the line of above. Maybe I am too picky. They don’t have to say exactly that. I don’t know if this even makes sense. Just sometimes the way people deal with me, I end up feeling more alone and misunderstood.
Today I DID go to the pool. But now my left ankle is killing. Another important thing I want people to understand: It is not really the pain, I can take a lot of pain. It is the fear of further actual nerve DAMAGE and the limitations of activities that get me down.
It’s like everything hurts. On Sunday I went to the grocery store with my mom and I rode in one of those motorized carts that they have for old people. I was really excited because then I could go grocery shopping! But it hurt SO bad to push the lever constantly to move it forward, it was unbelievable. I hadn’t even considered that.
So this scares me about if it will hurt to have a handicapped modification in my car. But I am going to research today anyway.
Sometimes I just feel like things I enjoy and tools to deal with my mental stress are being taken from me one by one. And I don’t know what God expects me to do.
Okay sorry for all the negativity. Actually, I am doing good at using DBT skills and loving myself and being DETERMINED to fight through this, more than I have in a long time. I think I kind of gave up on trying this summer, I know I did. But now I am trying so hard again and it feels good.************************
So for some positivity, giving thanks:
- For my mom fighting with me to get a diagnosis and never give up on that and for my parents helping me with money to do that as best they can.
- For my boyfriend loving me so much and how we always work out any disagreements so quickly and have such great communication.
- For gluten-free wafers at church!
- That my fibro symptoms have been better in the morning lately (knock on wood!)
- And for when they aren’t, that I am loving myself and not blaming myself for them.
Learning to love myself is the most important thing I can do in my life through all of this.
Anything you are thankful for today?