cognitive issues

I have been a contributor for some time and I can’t believe I’ve only written two articles! I have had #MyalgicEncephalomyelitis for 12 years, I am severely affected - housebound and bed/sofa bound. I developed #Gastroparesis 5 years ago. I used to be a regular figure in the M.E community (you might know me from my books!) but when my husband and I started our own business around 2019 all of my energy was put into that. So much has happened. In April 2021 I was diagnosed with #GeneralizedAnxietyDisorder then two days later my brother broke my heart by walking out of my life, choosing to believe his girlfriend (who has previous!) over his big sister who he always said was his second Mum. This ripped my world apart. The shock… the disbelief.. because as siblings we were so close. I couldn’t have imagined it in a million years. Long story short I fell into a deep depression, for about 3-4 months. Wasn’t working, wasn’t really even living. All of this on top of #SevereME is a hell I wouldn’t wish on anyone. My husband and I lost a lot that year. We are still picking up the pieces. I I have been a contributor for some time and I can’t believe I’ve only written two articles! I have had #MyalgicEncephalomyelitis for 12 years, I am severely affected - housebound and bed/sofa bound. I developed #Gastroparesis 5 years ago. I used to be a regular figure in the M.E community (you might know me from my books!) but when my husband and I started our own business around 2019 all of my energy was put into that. So much has happened. In April 2021 I was diagnosed with #GeneralizedAnxietyDisorder then two days later my brother broke my heart by walking out of my life, choosing to believe his girlfriend (who has previous!) over his big sister who he always said was his second Mum. This ripped my world apart. The shock… the disbelief.. because as siblings we were so close. I couldn’t have imagined it in a million years. Long story short I fell into a deep depression, for about 3-4 months. Wasn’t working, wasn’t really even living. All of this on top of #SevereME is a hell I wouldn’t wish on anyone. My husband and I lost a lot that year. We are still picking up the pieces. I deteriorated significantly with my #CognitiveIssues & #mobility and I won’t lie, I’m a mess. After coming out of a 6 month long #Gastroparesis flare I can now try and get the help I need. Anyways that was a super long essay but I can’t wait to write another article, and having been away from #Spoonie friends for so long, I forget that there are people who care. Sending love and hugs to anyone who needs it right now. Hay xxxxxx

I made this piece a few years ago, but it hit me hard today when I came across it.
I feel like over the past years (especially the past 5) so many pieces of me have slipped loose and washed away. My brain doesn’t feel like my brain anymore; though, I can’t even at this moment remember what my brain used to feel like.
I keep adapting backwards and have reached a point where I’m not sure how to make realistic goals anymore.
For five years now, I have struggled with chronic progressive neurological symptoms. The first 3 and half of those years were spent being sent back and forth between specialists and neurologists writing off my symptoms as soon as I saw they saw that I have PTSD. One neurologist actually tried to diagnose me with a pysch disorder without ever calling my psychiatrist (who had referred me to her).
I love words. I have always loved having just the right word for something. Several different people have given me the nickname “Dictionary”.
Now, my aphasia and productive speech issues have me lost mid-sentence or blurting out a word that wasn’t the one i intended, or there is just a blank space where my word should be.
I’m an artist and illustrator. But the tremors have gotten so bad that I am rarely able to make work.
Muscle weakness and discoordination have made walking trails and even museums a rare indulgence with at least a full day of recovery time.
More and more I have no idea how to respond or answer questions.
Playing piano “fluently” is nearly impossible.
And now losing sensation in part of my abdominal muscles and balance issues mean dance and dance warmups (for exercise) are potentially dangerous.
I get lost in activites and days and forget the context.
I feel like Schröedinger’s Mickey. I am both Mickey and not Mickey. And I’m afraid to open the box and find out too much of *me* has gone to really be *me* anymore.
The me that cultivated meaning after trauma by working to help others.
The me that survived stage 4 liver failure and a metabolic coma and fought for sobriety.
The me that would hide behind my daddy’s leg in the supermarket because it was too *everything* in there.
The me who danced and sang and taught art to children.
The me who had friends.
I’m most scared of losing the me who birthed two amazing humans and the me who gets to cuddle with them and listen to their beautiful thoughts, and even clean their earwax.

I no longer am certain *who* I will be in a month or 6 months; what other pieces might disolve away.

For now…I am.
#PTSD #predementia #Surviving #Identity #LiverFailure #comasurvivor #Neuropathy #CognitiveIssues #Dementia #Undiagnosed

My psychiatrist is recommending I go to a neurologist and try to get into a Neuropsychologist because of cognitive issues: forgetting words (tip of my tongue, but can't get it out several times a day), not being able to remember if something actually happened or I dreamt it, trouble focusing eyes during depersonalization and anxiety issues.
Does anyone have any experience with this? Any advice?
My symptoms of all of my diagnoses are just skyrocketing and I just got a med switch tonight, but currently the meds have been doing very little (ALOT of meds), and I am losing the will to even try. I'd be fine sleeping all day and staring at the ceiling. I'm not suicidal or having urges to drink, but I'm falling away from myself. When I am not feeling a million miles away from myself I am anxious or crying.
I don't think I'm capable of working full time. I can't even do dishes or remember to eat.
I'm just lost and desperately want more help because I don't have the energy to pull myself out of this. Ongoing since April.
Tomorrow is 18 months sober, so yay. #BipolarDepression #Anxiety #Sobriety #Recovery #Addiction #DepressiveEpisodes #tired #Fatigue #Sleep #CognitiveIssues

What's up with it. The upped my cymbalta, upped celebrex, and gave me flexiril. I need to find and new cbt therapist, I have a psychiatrist, and appointment in which I'll ask who he recommends on monday.. what can I expect in the future? How do I fight the #Fatigue and help my #Memory And overall #CognitiveIssues ? I think, bc I've literally never had any painful or traumatic injuries, it was poor therapy, confronting my shit childhood, and my parents that pushed me over the edge into full blown fibro, vs just acute pain and slight memory loss. I had like nervous breakdowns and would cry and be in pain for a few days, now its constant. Idk. #help #newlydiagnosed #ChronicPain #FibroFog