Tag Archives: Spoonie

Quick Update & Tips On Keeping Your Mind Busy While Being Disabled

14 May

Quick Update

Sorry I haven’t been around much or posting new treatments or tips. I haven’t really been on any new Lyme disease treatments since my doctor said my case was too late stage and went untreated too long so there wasn’t much left to try expect stem cell which I cannot afford. I still just take low 100mg maintenance doses of minocycline, doxy and tinindazole as needed.

I still can’t get IVIG covered again although I’m still in a study program so I’ve been weaker. My heart has been the focus and seizures or neurological issues. So I’m using 1000mg of Keppra. I noticed when I ran out and only took half a dose I had worse tremors, involuntary movements, throwing things on accident and my hand coordination was off so I accidentally hit my hands on things pretty hard bruising them or breaking veins. Other than that just been sitting at home and still fighting.

Tips For Those New To Disability, Homebound or Bedridden

If you are learning to deal with being disabled, homebound, bedridden or new to illness and not sure how to take your mind off the bad things here are some tips that have helped me over the years. In 2009 a was forced to medical retire & became bedridden & disabled. My whole life changed & I literally lost everything. What kept my mind off things was finding a hobby I could do even though I could barely see or type.

Many years ago I started this blog to share my illness journey with others & give tips. When I could no longer keep up with my blog I dedicated all my time to art and my sports account. Art is a good therapy when you just want to be alone or zone out for a while & take your mind off things. I also started adding many different music libraries on my iPad & listen to a ton of music. I have some to relax me for anxiety & music for every mood. I used to work so much I rarely had time for tv so now I use my time binge watching series & shows can really take you away.

There are some really good ones that will keep you busy for months. I used to sell my art at a gallery for a football player. I bought a bunch of books but couldn’t read them as my memory got worse but if you can still read there are many good book series to keep you busy. Some of the new video games are almost like movies with actors playing parts in them & have a great story line to follow so they can keep you busy for months. Phone/tablet apps are getting better and many can keep you busy every single day where you come back to play, win, do art, chat & fun. Being disabled is depressing but you have to adapt to your new life & find something to pass the time so you don’t focus on all the sad/bad things you are going through. You can try photography, scrap booking, Pinterest hobbies, cooking…. so many options. Hope these tips help. Hang in there everyone we can do this.

Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida…

15 Feb

slip-man-hi

 

Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida, Insomnia…

First off … Happy Valentines Day to all of those who are lucky enough to have someone in your life who cares for you and you found love.

My Valentines was a rough one. First it started with my old friend insomnia keeping me up all night and all month nearly. Many people use the word ‘insomnia’ to describe staying up one hour past bed their bed time but to us true sufferers it means we stay up for days with little to no sleep at all. I couldn’t take staring at the ceiling in bed anymore so I got up and laid in my chair watching NCIS reruns all day. Then the tremors started getting worse.

I put on my PulseOX and my heart numbers fluctuated between 100’s (tachycardia) and shot down to the 50’s (bradycardia) within 2 seconds then back up/down and repeat. This is common when suffering from Postural Orthostatic Tachycardia Syndrome (POTS) which I have been DX’d with. My Oxygen levels went from 98% (normal) and went down to 89% (bad) just reaching for the remote and stayed at 89% setting the alarm off. I wasn’t too short of breath though.

More towards the evening the Neuro problems started to get worse then usual. I felt as if I was on a boat in choppy waters. I would stand up and look like I was starting a new dance craze. The best way to describe how I was walking is like a really drunk person in a wet suit with flippers on indoors. I’m sure it looked funny but it wasn’t fun. Vertigo set in so my depth perception was off and I was really dizzy, tipsy, off-balance and had all three types of vertigo at once; pseudovertigo, subjective and objective.

“There are three types of vertigo. The first is known as objectiveand describes when the patient has the sensation that objects in the environment are moving; the second is known as subjectiveand refers to when the patient feels as if he or she is moving, and the third is known as pseudovertigo,an intensive sensation of rotation inside the patient’s head.”

My usual “stone man” set in about 6pm as I have describe this before in an earlier blog post. To keep it short I feel like I turn to stone or rust up and can’t move in severe pain. It happens like clock work every night. The only thing that takes the edge off is my pain killers and time. My stomach started to ache about this time and I had sharp pains and bubble guts. It was more of a Candida issue and not the pain of C-diff which I had last year. Won’t go into detail on that or TMI. ha ha

Here it is 1 AM and things are finally starting to settle. I still feel very tachy in my chest and in my nerves. I truly believe stopping antibiotics has allowed Lyme and coinfections like my Babesia to thrive again. I will be starting a schedule to go back on antibiotics soon, I just don’t want that C-Diff or Candida outbreak again so a lot of probiotics it is. I think this proves that my Lyme disease and coinfections are very real and still active after 2 years of aggressive antibiotics treatment, injections, Picc … etc which the CDC (not a fan) says Lyme is cured with up to 10 days of antibiotic treatment (lies).

Not complaining in this post really I just like to share my real experiences and my daily life  to help others and answer questions. I am at peace with all my illnesses and I am an optimist who just wants to spread awareness. Hope everyone had a better day/night and that your lyme/chronic illness healing journey is going well. Take care for now…

 

 

 

 

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