Processing Grief

I lost a lot when I became disabled. 

A big part of my identity was wrapped up in my job. No... my career. It felt like I had just barely scratched the surface of a huge part of my life when everything was turned upside down. First by my muscle disease that cause my energy and mobility issues, then again by my brain tumor that left me with potentially life long side effects.

I am very resilient and landed quickly on my feet. I also have fantastic family support. However I don't think I entirely processed what had happened. I feel like I was just taking it one day at a time in survival mode going from one medical appointment to the next. My identity as a helper of others had been turned around completely and now I was the one in need of help. 

I realize now that the dust has settled a bit (and even though that we're still in a global pandemic) I'm finally processing what happened to me. It was very shocking, completely life changing and horrible. Now I'm having to grow my other identities (and dust off old ones, like being an artist) to rebuild myself. 

A Sharpie drawing I did for my Mama

One thing that hit me hard this weekend was that I had been feeling entirely unattractive. My sexuality had been smashed along with my confidence. Not very long ago I was a full time wage earner, busy but invigorated. Now I feel like a "fat, old crippled lady." (My words)

Of course one fix is slow. Weight loss (which I REALLY need to take more seriously!) The other is my sexual confidence. When I look good, I feel good. But let me back up.

For the last 7 years (since I turned 40) I have flirted with my "natural" hair color. I had been a life long dye addict and was curious what my real hair color looked like. So began a very long repetitive process of growing my hair out, coloring it, then whacking it short to go back to my natural color. After my brain tumor I tried out Henna and shunned the drug store box because of the chemicals. But that was a long process that was also very messy.

Well, this weekend I decided to color my hair again. Not henna, but not the drugstore box either. I went with a natural botanical brand of permanent dye and I picked "Licorice." I wanted a black vixen look like Elizabeth Taylor. 

My Mama took me to our local co-op and they had just what I was looking for. Then she colored it for me at her casa. I actually really love it and do feel much sexier and confident in my looks. It's silly how such a little thing can help me mentally, but it did. 

For me this was less about dying my hair and more about regaining some much needed body autonomy. I often feel like my body runs the show and I'm just along for the ride. This time I took the (black) reigns and got some control back. I also happen to think it looks great, which helps my self esteem. All that for just $18. 

I know I'll continue to process and grieve for what I lost, while being aware the whole time of how very lucky I am. My feelings aren't exclusive and I give myself full permission to feel both.

Sex and Progressive Disability

It seems as if every article and blog on the internet that addresses sex and disability does so from the point of view that the person has always been the way that they are. I have found hardly any information in my scouring that talks about what happens when you have a progressive disability or illness. Which is very sad because it has a HUGE impact on your sex life.

My neurologist told me last week that my issue (COQ6 gene mutation that causes COQ10 deficiency that causes Metabolic Myopathy) is progressive and degenerative. It was something I suspected but it was still hard to hear. Although it did light a fire under my butt (pun intended) to try and find something that would help my sex life.

My husband is amazing and is always open to trying anything that might help me, even if it costs us money. I've tried a vibrator in the past, but I don't think it was strong enough for my muscles. We also have a "wedge pillow" that is amazing. I can't speak highly enough of support pillows with any kind of muscle condition and intimacy. So although I still was enjoying sex, I had been unable to have an orgasm for a long time.

One of my issues is muscle cramps and spasms that happen most of the time. My neurologist recommended I try CBD for it and said it would help. A friend of mine from my Muscular Dystrophy support group suggested I try a tincture. One trip to our local dispensary (it's legal in my State) and $80 later and I was equipped with something that has been helping me. I thought it might also just help my orgasms?

My husband and I made a trip out to a very female forward sex store called Good Vibrations. They helped me find a new vibrator that could be helpful, along with some other muscle support devices to try out. BINGO!!! A stronger, more adjustable, larger vibrator did the trick. My orgasm has changed a lot though and felt very different. But I was still happy to get there.

NEVER GIVE UP! My tenacity paid off once more. Don't be afraid to experiment and invest some money on your sexual pleasure. It's important and helpful for your mood.

(I'm not affiliated with any of the links and received no compensation for sharing them.)