It’s been a whirlwind 6 months.
From me noticing something was wrong and getting a doctor to check me out, to him confirming the ataxia diagnosis.
I told the world I had ataxia which led to many things happening.
Mostly good but some annoying. Especially annoying are the people who think they know the formula for my healing all the whilst they have diabetes or diseases like that.
NEWSFLASH: IF YOU HAD ATAXIA AND GOT INSTANTLY HEALED IN YOUR SLEEP, EMAIL ME.
As for the rest who offer unsolicited advice, manage your diabetes and leave me alone. (Maybe they mean well, but their suggestions are mostly unhelpfu
I could go on to eternity about people who do not think at all before they speak but I am tired.
I have been so busy since February; I had a project trying to help my relatives with ataxia in Kenya, I’ve been writing, working out, and basically just acting like the diagnosis did not happen.
An Australian ataxian patient and friend, John Harnett died in mid-July. He had first written me in March and sent a few more emails after that. His death really shook me up.
A medication called Riluzole that I started in late May, however brought me to a grinding stop. I had horrible side effects for 2 months. As in I could not walk without support. My doctor thankfully told me to stop taking it at the end of July.
At the height of the worst side effects ever, I realized I was spreading myself too thin and not taking care of myself. I’m the most valuable person in this equation, without me at my best, everyone else will suffer. Yes, you can’t help anyone till you are OK yourself. I am not.
My life is very busy.
Mainly because of ataxia.
Doctor’s appointments, I am starting to work with a neuro physiotherapist on 21st August, learning how to manage it (ataxia is worsened by stress so I CAN’T KEEP YOU IN MY LIFE IF YOU STRESS ME) I have been axing people left and right; blame the ataxia. The latest finding was discovering having a cold worsens symptoms. Imagine that.
I need time off.
I can’t promise to spare time to write. My laptop is literally dead. My friend was going to buy me a MacBook in the USA (they are cheaper there than in Sweden) but they were sold out. Using this one is too difficult.
I really feel bad that I can’t churn out a new article each week on the blog.
I also have to spend a considerable time with God every 3 days and less time daily. My faith keeps me afloat.
Right now my priority is getting this disease under control.
Learning what sets it off, going for intensive rehab, living at the gym and buying some more health supplements. (Some of them are so expensive. I used to think clothes were a priority, your health is.) Supplements seem to help me more than drugs. No more drugs for me. Unless it cures ataxia in a week. I also have to really fine tune my diet and juice a lot. I am planning to see a dietician soon to come up with a plan.
I value my life and will not be defeated by ataxia.
I think if I spend considerable time on this, I will be able to have my life back in a year or so. For now, I won’t be able to prioritize anything else: church, meeting people for lunches or fika etc.
I still want to get married and have to be uber healthy for my husband and for Nicole, write several books and buy a 3 bedroomed flat in Nairobi.
Yes, I know people thought there’s no way that is happening but between you and me the men trying to hit on me have even increased from last year. They appear from nowhere. And some are not fazed by ataxia. I think I’m little infamous coz of writing.
Whatever it is, I am cool with it. He he he. There is still hope people.
I will definitely be back. I love it. I don’t know how long I will stay away. If you are willing to pay me to write, I will do it so don’t be afraid to reach out. LOL
I don’t however want to struggle to write on a deceased machine.
I am also moving soon.
Finally, I am applying for a number of benefits from the government and this is extremely time consuming.
I will wake up from my non writing coma when the dust has settled and have a new MacBook Air in my possession.
I will release a number of books in the future. That is a promise. All the nice people who reach out to me can still do so.
Bye, bye for now.
A healthier me means better articles and books, a better mom for Nicole, a better church member etc
Transmission will resume in the near future. I’ve started my ‘rest-and-relaxation-and-fighting-ataxia’ vacation.
Love and hugs, Nyakarima