- Footdrop (Foot drags along floor during walking)
- Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
- Anaesthesia (Complete numbness/loss of sensation)
- Neuralgia, Neuropathic and Neurogenic pain (Pain without apparent cause, burning, itching and electrical shock sensations)
- Ataxia (Loss of coordination)
- Intention tremor (Shaking when performing fine movements)
- Dysmetria (Constant under- or overshooting limb movements)
- Frigidity (Inability to become sexually aroused)
- Depression
- Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
- Mood swings, emotional lability
- Anxiety
- Fatigue
- Uhthoff's Symptom (Increase in severity of symptoms with heat)
- Sleeping Disorders
- Inappropriately cold body parts
Things aren't any different. The footdrop, ataxia, neuralgia, and anaesthesia come and go, as does the fatigue, anxiety, mood swings and Uhthoff's.
I just keep trying to physically rehab myself into better health yet I get worse or no better. I don't know what the hell I am supposed to do other than just keep going. I'm trying to get my life back, because if I don't I will die. I'm not exaggerating here. I will die if I cannot take care of myself. No one has any idea how to get me back to where I was, so the only thing I know how to do is just keep going, keep doing and doing and doing.
I have to be ready, willing and able to look for work in EXACTLY 23 days. If I can't even walk around the block without falling apart, how is that going to be possible? I just have to keep pushing myself physically, because laying around hoping to think myself into a better life outcome isn't possible. I HAVE to be ready to work in 23 days. There is NO OTHER alternative.
There is no plan B. There's nothing else I can do but be ready, willing and able to get out there and find my next gig and not be so disabled that no one will hire me. How do I do that while waiting for a chemo drug to work? How do I do that while waiting for my brain to heal? Pushing myself to just keep doing is the only thing I know how to do. If it doesn't work, what is there?
I went through almost that exact same thing. I was diagnosed in 2001 (I was 26) and I was obsessed with lifting weights and walking for miles and miles trying to beat the MS. The thing is it is neurological so building muscle mass and endurance doesn't fix the symptoms.
ReplyDeleteI have learned to back way off when I notice any drift, increased numbness/tingling in my hands or increased asymmetry in my face. I don't push it in heat since that will wipe me out for a couple of days and I don't go more than 2 or 3 days in a row without lying down for an hour or two in the afternoon (which I understand might not be possible for you when you go back to work.)
I run my own petsitting/dogwalking business and am fortunate in having some financial assistance from my family but for me the key things were limiting stress and just trying to keep everything stable.
I do still get frustrated sometimes when I can't do something I would like to do because I know it will cause my MS problems afterwards and especially frustrated when people demand I do things that I know will cause a total flare-up.
Get PLENTY of rest, eat healthy-ish, avoid stress and stay out of the heat. It has worked for me for 8 years and I've never taken any of the MS drugs and haven't been back to a neurologist in 6 years since all they want me to do is take one of the drugs.
That is all I am saying when I say to stop fighting it :-)
Thanks for sharing this blog post.
ReplyDeleteI help manage an online support community for people affected with Ataxia. If you have come across this site in search of support and kind words from others like you, stop by and say hello: http://www.livingwithataxia.org