It's OK to Struggle With Your Disability Sometimes
I joined The Mighty a long time ago, and up until now I’ve been a silent reader. It’s a great support and I’ve had a few giggles over some of the stuff I’ve come across. Thank you for that.
The reason I’ve decided to break my silence is that I’m struggling. I’ve had cerebral palsy all my life, and like many others on here, I’ve mostly grown to accept the fact it is there and I can’t get rid of it. The thing is, sometimes I want to. That’s not to say I would if I actually could. No. It’s more that I’m just feeling a bit sick of it all at present.
It has been said before, but the emotional toll is there. It isn’t just physically what I am and am not able to manage and anything with balance/spatial awareness/muscle tension and control. It’s also very much about the self-aimed frustration, anger, sadness and yes, jealousy of how simple things seem to be for others.
I go through periods of time in which I’m managing OK and despite pain, fatigue etc. I’m somewhat happy and able to focus on the positives. Now, a horrible four months and counting since my last round of Botox injections and with extreme stiffness/shakiness, a bad shoulder and long stressful workdays, I’m struggling to be overly positive. Especially since my awkward gait and unsure steps are way more noticeable and getting up to go to the printer is now a dreaded requirement.
I have overcome a lot and I will forever be grateful to the powers that be, family and medical intervention for their help and support. The fact that I’m a determined and stubborn little so-and-so helped too, I’m sure. I can walk, albeit somewhat wobbly at times, I can dress and feed myself and generally do what people need to in terms of self-care. Heck, I work a 9 to 5 job, which isn’t always possible. But, today, of all days, I just feel the need to rant a bit. Let off some of the steam rising in my head before it gets too bad.
So here’s a list of the things that piss me off. Please bear with me.
1. Steps without handrails, and buildings that are inaccessible or difficult.
2. Knives that are not sharp AF. Let’s face it, cutting food when I have one fully-functioning hand and a vague “helper” hand is a nightmare that frustrates me to the point of giving up on eating more often than I like to admit.
3. The fatigue. I am almost constantly tired and actions most people find easy or manageable are either draining or simply impossible.
4. The pain associated with muscle tension and injuries caused by the Moro reflex i.e. the acute startle reflex that’s meant to stop in babyhood.
5. The Moro reflex itself compounded with my PTSD hypervigilance symptoms. No need to apologize for “scaring” me. It happens for the slightest and most insignificant of unexpected occurrences. It’s not your fault, and I’ll be fine once my heart rate slows and my brain starts functioning again properly.
6. The fact that I randomly zone out at times and sometimes end up “staring” at something for a noticeable time period before snapping out of it. I honestly suspect absence seizure epilepsy but keep being told it’s nothing. Same with the reflex thing. How do you truly know the difference between a sudden something-induced seizure and startle reflex?
Now here’s a list to feel positive about.
1. Family support.
3. Lovely boyfriend.
4. Medical support, even if I have to fight my way through the system.
5. General support including all my lovely friends who are happy to lend an arm/cut stuff up.
6. The ability to do a lot of what I need myself, difficult though some of it is.
That’s basically it for now, and I guess the moral or aim of this story is to say that it’s OK to feel down or angry at times. Maybe listing things helps you as it does me; maybe not. But negative moods are normal and part and parcel of living with a lifelong condition. It’s when they get very negative or stay negative for a long time that you ought to seek some help, somehow. You know yourself, and as one of my favorite bands would say, “love yourself.”
Be true to yourself and you can’t go far wrong!
Getty image by Kai Pong.