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Post procedure mess

I had an exploratory procedure on my bladder under general anaesthetic on Tuesday. It seems they didn’t find anything untoward, which is good, but I’m still left with challenges that have no answers as yet.

The other problem from the procedure is that they had to intubate me during it due to really bad acid reflux. They also gave me a drug to completely dry out my saliva which meant I could barely chew or swallow anything for the first 24 hours. It seems that they very very slightly chipped a tooth too.

It has also messed me up quite a bit & inflamed things in my throat and oesophagus. To my body, the intubation was a trauma. 48 hours later & the acid is quite bad & Ive got quite a lot of discomfort in my throat & chest & swallowing is not quite right. It’s actually pretty uncomfortable to swallow. I really hope it calms down because it’s quite distressing & fatiguing (I have fibromyalgia & M.E. amongst other things, so my body is probably responding a little bit more acutely). It’s triggering a lot of anxiety because I had a massive massive flair like this coupled with jackhammer spasms and a tremor all the way down my oesophagus for months during the lockdown in 2020. It’s not quite that bad, but there is a lot of apprehension that it could go that way. I was in such a terrible state then crying on the floor in agony & in and out of the emergency room, having to have IV paracetamol (they wouldn’t give anything stronger - mainly due to contraindications with other health problems of mine).

Over the last 2 to 3 years I was on medication for the reflux (but eventually weaned off due to worries about B12 deficiency) and a special diet which did help calm everything down. I gradually went back to eating more as I was before, but have greatly reduced a lot of triggering foods. I’m just really tired out and upset that this has all flared up. I have a follow-up in about 4 to 6 weeks regarding the procedure and my condition and I’m uncertain what the next steps might be.

This is all on top of lots of other medical and neurological things that I’m needing to deal with. I’m not even quite sure my partner quite understands the nuance & multiple layers that I’m having to manage in my life as a “spoonie” and a neurodivergent mum parenting neurodivergent young adults and how fatigued it all makes me on so many levels. I’ve been burnt out for the last few years due to a huge life change and this all adds another notch up.

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My Demons

Part 1 of 2 It was a summer day on a Saturday morning and my family, and I were going to spend the night at freeport beach. We showed up at the beach early that afternoon we had a fun time the first day going deep in the water of the beach and playing in the waves. It was nighttime and I asked my dad “Hey Dad do you want to walk the shoreline with me and check out the beach at night.”

My Sister said, “I will go with you, Sean.”

So, my sister and I walked down to the beach, and we made it to the shoreline from the beach house. We started walking down the shore and as we were walking, I looked about twenty to thirty yards in front of me and I thought I saw a figure in a dark robe I asked my sister “Do you see that?” Scaring me half to death.

Sensing my fear my sister said, “yeah I see it.”

I’m not sure if she saw it or not but we both ran and didn’t look back. When we go back to the beach house; I saw the figure again staring at me in a dark robe while sitting on the picnic bench underneath the beach house. My sister said, “I’m going to go back up”

I said “ok”.

So, she went up the stairs and I stayed in the downstairs area and the figure spoke and said, “Hello Sean my name is Athos.”

I heard him say it clearly, I have never seen something or ever heard anything more terrifying in my life. At first, I said ok that was weird and kind of brushed it off and walked upstairs to the beach house. We were on our way back home from the beach the next day we all had a wonderful time. Except for the fact that I saw and heard a voice talk to me, but it was whatever.

Soon when we arrived home it was nighttime, and I was sitting down on the stairs on the back patio when I heard a voice say “Hello Sean” I turned and looked next to me, and it was Athos from the beach.

Him saying “I want to teach you something.”

Me responding to his statement I said, “What do you mean what do you want to teach me?”

Then all the sudden the patio table shaked I would’ve never thought it was possible to shake a table I was like did I really see that questioning to myself.

He said “It’s easy just look at the table hold your hand out and say shake. So, I held out my hand focusing hard on the table I whispered “shake.” I wasn’t sure but I could’ve sworn I saw the table tremor just a bit. I was blown away questioning was that real. Ever since then I have had him talk to me in my mind sometimes saying good things and even bad things but truly, I believed that all he really wanted was a friend. So, he was kind of like my imaginary friend for a little while. He showed me all kinds of things like showing me how to make things shake which made objects appear to tremor and many other things.

Then I went to my moms and the symptoms became violent. I was hearing voices all the time and a lot of voices were negative. There was one night when I heard a voice in a deep grungy voice talking to me that said “BOO!!!” It scared me so bad I tried hiding under the sheets and I spoke and said “who are you”

The voice answered “I am Satan”

I was so scared I was thinking great the devil is in my house then I peered out from under the sheets, and I saw him standing in front of me he was a tall muscular figure with red skin and horns. He kept telling me negative things saying to hurt people or kill people I tried not to listen to him. In my head I was seeing images of my family getting hurt by this person and sometimes seeing me hurt my loved ones as well and I said to myself I must do something So, in a panic, I went downstairs to tell my mom about what happened

She said, “Seriously Sean.”

I Said “Yes Mom I am so scared.

Her realizing how scared I was saying “Don’t worry we will get you help.”

Then Months went by with those crazy thoughts and finally, my mom said, “We found you a place to go to help you with your crazy thoughts and voices.” So Super nervous I went to a mental hospital. I was only 15 and there were a bunch of adults in there that were just crazy, and the voices and illusions didn’t help either. Then there was a certain voice in my head, and it was Athos and he said “So you finally decided to get help did you” I said yes in my head so people wouldn’t think I was crazy.

I asked him “Was this a good idea”

Him in a reassuring voice said “Who knows only time will tell.

Then they called for me in the conference room and they were asking me all sorts of questions like what do the voices say to you I told them I see things and hear things that aren’t their voices telling me good things and bad things about what I should and shouldn’t do. Also, I hear the voices of people that I talk to in a conversation, and sometimes as I’m talking to them, they would say exactly what I was thinking they would say in a conversation. So, after that, they told me they would have to do so


I don't know how much more I can endure.

I can't seem to find a way out of this dark hole that keep pulling me down.

My relationship of 9 years ended with him cheating and moving on with someone 10 years younger. That alone was devastating. On the 9 year anniversary, my mom came over to tell us she decided to have all life sustaining medications stopped for my stepdad, who was an amazing man and wasn't ready to go, but she chose that rather than have him come home and have to take care of him. She waited 24 hours to tell us, so by the time we got to the hospital to try and reverse anything, they already had him off his anti rejection meds and on morphine, and couldn't have signed power of attorney over. Tomorrow is his funeral.

My ex, who hasn't talked to me since May text Tuesday about wanting to come over and get some things. There's nothing here left of value, and it really just hurt more than anything to be bothered.

Yesterday I found out my company may go on strike Monday, and I might be out of a job. Due to my POTS, EDS, depression and anxiety, I have no idea how I'm going to find another job if that happens. I'm starting to tremor worse as it is and am having issues typing.

I'm worn out. I feel like it's been one hit after another. I have no one to turn to other than my children because the family is fighting over the death, my ex is a jerk, and I don't get out much because of my illness. I don't know how much longer I can sustain like this.

#PosturalOrthostaticTachycardiaSyndrome #Depression #GeneralizedAnxietyDisorder #Grief

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Someone special maybe in the future

To the woman that could be my life partner,

I want to apologize. My life traumas, PTSD, bullying and parental absence has left me terrorized to approach anyone, even to say hello, much less ask anyone out to enjoy an event.

I have low self-esteem that constantly tells me you couldn’t be interested in me. And that low self-esteem would annoy you because I would always be afraid to be my true self around you.

My traumas have reinforced my low self-esteem. Bullies left me always second guessing my worth, and doubting that anyone could want to be my friend, much less than a life partner. My parental absence for the majority of my life has left me seeing the world like this: If I wasn’t good enough for my parents then how can I be good enough for anyone else. Much of my parental abandonment has been healed because I reached out to my mom and had her kick the Benzos that were causing her to sleep all day and basically ignore me for more than a decade as I was growing up.

My depression started at age 7 and has never gone away. Medicines help treat the symptoms but the depression and constant negative self-talk reinforce my low self-esteem. I have always wondered how someone could be friends with me. My depression and anxiety cause me to cancel plans at the last minute because I am terrified of disappointing the people I am joining. Even going somewhere alone left me scared. Sometimes I could face my fears and often my fears were reinforced. I shop at night because I have less of a chance to see people and fewer people. Crowds of more than 5-10 people leave me extremely uncomfortable sometimes to the point of having to leave to quell my anxiety.

My PTSD is due to the number of unresolved traumatic events along with my decision to go numb and stuff my emotions for more than 25 years. I broke with reality. I started believing the negative self-talk. I developed a tremor in my right hand that serves as an anxiety/stress barometer even to this day. My right-hand shakes unrelentingly when I am under stress.

I continue to work on resolving my low self-esteem, depression, anxiety, and PTSD. I see some hope that I will live a full life and feel good someday. Perhaps you will still be there and find me then.

Perhaps someday I will be able to show someone who I am. Until then I will continue to wear my public fake happy face.

I remain hopeful and yet guarded.

#PTSD #Depression #Anxiety #Bullying #Hope

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Helping My Hands: 6 Tips for the Nail Picker and Biter

Part 1 of 2 Watching the first few episodes of ‘House of the Dragon’ on HBO, something shocked me to the core. It wasn’t the violence, the childbirth scenes, or Matt Smith setting a whole bunch of people on fire. No.

It was seeing myself on the screen.

Well, not exactly myself, per se, but seeing a teenage girl being snapped at by her father for nervously picking at her nails–so much so, that they’re bloody. In this case, a high ranking lady and main character in the series, chewing and picking her fingers nervously throughout the first season of the show.

In most action packed shows, mental health and neurodivergence aren’t added to a character’s development unless it’s a plot point. But having that quick few scenes of Alicent’s bloody nails and skin not only gave depth to her character, but represented a common issue within mental health–bodily harm. It’s very common amongst disorders, with almost being seen as nail biting before a certain age.

I’m not a fan of Alicent by any stretch of the imagination (Team Black over here!), but if she was around in real life, I’d offer her some help on saving her nails. After all, I’ve struggled with biting and picking at my nails and cuticles since I was in elementary school, due to both nerves and as a habit. Not only that, but before I was medicated, my MDD and hypoplasia caused my hands to tremor incessantly, so much so that I got berated by a classmate in graduate school for having ‘wiggly hands’.

Sometimes, picking them to oblivion was the only thing I could do to calm them down.

I can only do so much in regards to my conditions, but I’ve learned a few things in order to save my hands from when I’m feeling the urge to pick at them, or even bite them (a medical term called onychophagia. Picking your skin is known as dermatillomania).

Here’s what Dr. VV recommends if you bite, tear, and otherwise abuse your fingers, whether it’s due to anxiety, depression, compulsion, or just a bad habit.

Tips for Saving Your Nails/Fingers:

Recognize That You Have a Medical Condition: We don’t associate stimming with addiction. After all, the image of the addict–tragic, dark, with an empty bottle or used needle–is a vast departure from the individual shredding their cuticles for comfort in a classroom or behind the wheel of their Prius. But that wee bit of serotonin drives us. People who shred their nailbeds and chew on their fingers are not doing it because of peer pressure. It’s a comforting activity that is also harmful (Issues like staph infection, ingrown nails, broken teeth, and constant bleeding are some potential medical side effects of onychophagia). In fact, nail biting is even listed as a disorder by the Diagnostic and Statistical Manual of Mental Disorders, connecting it to disorders such as OCD, ADHD, and ODD. I have both a learning disability and MDD, so I fit right in with this alphabet soup. Many people are ashamed of their nails if they bite them: remember, if you’re one of them, it is a part of your psychiatric makeup.

Get Glitter Nail Polish: Many well meaning individuals have recommended getting nail polish put on to keep one from chewing on their fingers. The issue with this solution that I’ve found out is that, should you begin the inevitable picking again, the nails will look even worse, driving you to pick and bite even more, your brain overwhelming your senses with the need to modify your nails. However, with glitter nail polish, especially if the polish comes in big, circular flakes, they help with the need to pick, all while leaving your nails alone. After all, you can pick the flakes right off, a soothing effect that leaves your cuticles and nail tips alone. I personally recommend LA Colors in Confetti or Sally Hansen’s Instant Dri in Grape Split.

Wear Driving Gloves: Oh, so corny and so useful! I drive a lot for work, and when my hands and brain are still, the inevitable picking occurs. I recognize this issue, and after a suggestion from another picker on Calm Hands (see below), I invested in a pair from Taiwan. Suddenly, the bloody fingers stopped, and although I’ve got a long way to go to break the cycle, a huge compulsion is currently curbed when I’ve got those bad boys on. Especially since the fingers and palms have a risen bubbly surface, which allows me to rub them repeatedly, scratching my proverbial itch to pick.

Find a Support Group: Most people associate addiction with groups such as AA. Believe it or not, there’s also some communities for pickers as well! I’m

The Psychology of House of the Dragon — Allicent’s Inner Turmoil — Therapist Reacts!

🔥 Get my NEW Nebula Class and ALL Classes for 20% off at you picking your skin? Fidget all the time? Psychotherapist ...
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Grieving a diagnosis?

I've been having a hard time lately. There has been a problem with one of my direct reports and its always hard to have those conversations. My supervisor sat in on the meeting and said I was firm but not mean but my direct report does not understand that she did anything wrong. I can't help but thinking I failed. I keep reminding myself that I can't control the behavior of others but my heart won't listen.

I had a confirmed diagnosis of early Parkinson's disease a month ago. There is a tremor in my right hand and muscle rigidity. But I can't help but thinking that this is not going to improve. And there is no cure. Is there such a thing as grief over a medical diagnosis?

I already suffer from depression and anxiety and all of this is not helping. Also, it gets dark earlier and I can't get out and walk. And to top it off, 2 rapid c*vid tests came out as positive. So I am alone for the holiday. The only saving grace is that I've had 3 boosters and this just feels like a really bad head cold.

I'm having trouble seeing anything positive. #Depression #ParkinsonsDisease

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POTS is seemingly getting worse, and my coping is in a bad place.

What a mistake of a night for me. I went with my significant other to his bowling league. I say significant other, yet for the past year we've been on again off again as he relapsed with alcohol and gambling. He swore to me he was done doing both, and tonight he was drinking and gambling on the games. I was mortified. On top of that, I haven't been in public to do anything but grocery shop or go to a restaurant for my child's birthday in probably over a year. My POTS causes me to tremor horribly and my arms and legs also lock into weird positions. I find out, much to my displeasure, that one of the members of his team is a bouncing blonde who thinks nothing of hugging anyone and I believe was flirting.
So with my cane, I stumble to the bathroom and cry. I should have just stayed in bed. People were starting at me, I've gained weight due to inability to move much, and I recently cut off about 12 inches of my hair because I couldn't maintain it anymore. So basically, I felt like a steaming pile of crap. I told my SO that he would be happier without me, and I really think he would be. I need someone who has empathy for my situation and doesn't bowl and drink and have women flirt with him. I am need calm, and security and affirmations that I am pretty and enough. He does say it, but I don't believe it.

I came home and sobbed and now here I am typing, hoping someone else understands. I want my SO to know what it's like to be in a position like me and feel what it's like, and he can't. And overall, I really just don't want to have POTS anymore and I want my life back.
#PosturalOrthostaticTachycardiaSyndrome #Depression #Anxiety

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I’m dealing w/ many health challenges currently. Appt w/specialist tomorrow to see if my tremors may be Parkinson’s. Prayers & good vibes appreciated

I sat at services tonight with my glasses fogging up in my mask (eyes); my hearing aids not helping me enough, making it hard to hear my Mom (ears); my legs shaking as I sat and having such a hard time turning pages in the prayer book as my hands shook (essential tremors); worrying every time that we stood up and during the long walk from the car to the sanctuary that I was going to fall over (balance); not being able to focus in the sermon beyond one paragraph without losing track (brainfog, focus); sitting with my long legs cramped in the seat and with my calves & feet burning from my Neuropathy (legs).

Thankfully I didn’t have a migraine (head) tonight (they have been less frequent these days but they can still ruin a day or night when they do happen) and my back didn’t hurt (body). Two small victories, less things to deal with, at least for tonight. I have somehow mostly been able to not allow myself to get caught in the down side of my bipolar depression. So no major depression (emotional), another small victory, but I did have severeanxiety (emotional) as I packed and tried to get out the door …bad enough that I took the med I have for anxiety that I have never taken before driving. And I had a day without complications from being HIV+ and aging (immune system) and no times struggling with PTSD (emotional) And today was another sober day (addiction) I have 10 years 9 months

While I was struggling so much to tie my tie and button my shirt with my hands shaking I looked in the mirror. I saw my balding head with a grey beard and just suddenly felt really OLD. I have to admit to myself that my body isn’t what it once was, I can’t do most of the things I used to do…I compared myself to my dad who didn’t get his tremors until his 70’s and mine are getting worse rapidly and I’m only 57! But it all could be part of something bigger…I will say it for the first time…I may have Parkinson’s Disease! Ok I said it. I’m seeing a tremor specialist at a Parkinson’s Disease and Movement clinic next week and to be honest I wouldn’t mind the diagnosis… at least I’d then know what’s causing all the symptoms I’m having!

UPDATE: This was written a week ago and since then I have pushed myself and gone on two 45 min walks and an hour hike. I got new trekkers (2 aluminum poles) and they have given me much more confidence I can move safely and provided great support from falling. I will do as much as I possibly can…I’m not going to let my challenges stop me from being active and enjoying life! My appointment is tomorrow…prayers and sending good vibes would be appreciated

#MentalHealth #Depression #Anxiety #PTSD #Selfcare #Selflove #ChronicPain #ChronicIllness #BipolarDisorder #BipolarDepression #RareDisease #COVID19 #Migraine #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #Grief #LossOfAParent #Disability #IfYouFeelHopeless #Hope #Love #TheMighty #MightyTogether #mighty

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My Pituitary Story

Part 1 of 2 The Pituitary Foundations Awareness Month – Live Well With Pituitary Conditions

Patient Stories Submission – The Pituitary Magazine – 1177 Words

Although my Pituitary journey officially began in 2008 I’m convinced it began long ago as a child. I can recognise the signs and symptoms. Especially when faced with stressful situations. Times when exercising at high levels of intensity in sporting activities.

My ‘actual’ diagnosis came through an unconventional route, as it does for many. A tremor developed in my hand. Headaches, dizziness, sickness and being run down were daily features. Due to the tremors, I was referred to a neurologist. He gave me the choice between living with it and not knowing if there was anything serious, or having a brain scan. Stating there was a 25% chance of something showing. Am I glad I had that scan? YES! However, my follow-up was very brief and was pushed out of the door rather quickly, only being told a lesion had been found.

Left waiting and wondering for 2 weeks was not helped by a letter that hit the doormat talking about Pituitary Surgery. Before being connected with an Endocrinologist. Pituitary Adenoma with Apoplexy was the diagnosis I got and needed. For someone who had just battled through training for and running in a London Marathon (completing it somehow) leading an active social life and working at an amazing job, this was a real shock.

Numerous tests and scans were now a part of everyday living. The terms LH, FHS, progesterone, prolactin, and cortisol formed part of everyday language. At one point my prolactin levels rocketed from a secure 150-7500 in a matter of 3 months. A battle with medications and side effects ensued. Including three long years with no periods at all. Infertility also surfaced and my consultant urged me to grieve. I don’t think I will ever fully accept that. For me, that’s been the hardest part of the process.

A few turbulent years were to follow. With the battle to find a treatment, I could tolerate. Needed to suppress the prolactin. The impact of a decline in neurological health, and the return of chronic fatigue/pain, I had suffered with at varying levels since a teenager. Largely down to Ehlers-Danlos.

Another twist came as I tumbled down the road into pituitary insufficiency and then further into Addison’s. The diagnosis hit me hard. Fear set in and everyday normalities became mental battles. Shock packs and careful monitoring. Now having to manage both pituitary insufficiency and hyperprolactinemia. By this time I had lost not only my health but my career, sporting activities, hobbies and purpose in life.

Added stress and struggles of my brother’s illness and subsequent death sent my mental health tumbling. Later that year a Psychotic Episode occurred to make matters more complex. Careful medication monitoring is key for me. Balancing hydrocortisone with antipsychotic medication is difficult. The withdrawal of Cabergoline (for prolactin) was essential.

Some luck was to lead me down a different path. I fell into two things that kept me going. A Para-Swimming career ensued. Looking for a sporting hobby I joined a local swimming club. It supported my mental health and general well-being. After classification, things progressed fast: achieving National titles, swimming in International events, and breaking British Records. Even travelling to Nice to participate in the European Masters Games. Working with top coaches and training with elite athletes. All amazing experiences and unexpected.

The Pituitary Foundation filled the other part of that void. I became an Official Campaigner. Initially supporting on social media, taking leaflets everywhere – hospitals, swimming pools, doctors! Telling anyone I could about the perils and challenges of all things Pituitary. The understanding of the hours put in made it easier to feel like I’d contributed. I could help when I felt well but pull back when not.

Creating Time To Heal was a way I thought I could help others face the same battles as I did. Proud of my website and the message it aims to promote. At the centre of the website is my quirky and creative blog. The spelling and grammar may not be perfect but they all come from the heart. Being added to The Pituitary Foundations’ list of patient blogs gave me great satisfaction.

In addition, I was asked to become an Active Essex Disability Ambassador for the Essex All Together programme. It aims to inspire, support, promote and deliver accessible exercise and sports provision for a broad range of LTHCs and Disabilities. My work has been celebrated with a page of my own on the Active Essex Website, through the Active Essex Sports Awards and within Ambassador Team Meetings.

Both volunteer roles have

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Reminding myself how strong I am 💚

I fought for a diagnosis for years! Bladder pain, pelvic pain, labrum tear in the hip, balance problems, speech issues, memory issues, skin manifestations, muscle and joint pain and stiffness, motor movement problems, depression, anxiety, vision problems, loss of libido, hypothyroidism, 1 cervical and 2 thoracic disc hernations, stage 2 spine degeneration... the list went and still goes on and on.

While I was getting sicker and sicker and literally felt like I was dying, I looked completely “normal” to everyone else, except my boyfriend who basically watched my whither away. I became a shell of who I was. I was known as strong, fit, bad ass, a weight lifter, a runner. I was teaching group fitness classs, teaching personal training sessions, running an online fitness program, exercising 5+ days a week, hiking, camping, playing soccer...

Then all of a sudden, I developed severe bladder issues that brought me to the ER repeatedly, ran through multiple urologists and pelvic floor therapists (2016). I was diagnosed with interstitial cystitis and pelvic floor dysfunction (2017). Not too long later, I tore the labrum in my right hip. Throughout that year (2018), we tried rehabbing my hip and pelvic floor, but any progress we made was halted by reoccurring lower back pain. I never experienced back pain in my life and now, I couldn’t get rid of it. By the end of 2018, in a matter of months, I could hardly walk without feeling like I would fall, my hands would tremor, the words coming out of my mouth would get mixed up and make no sense, my skin felt like ants were crawling all over me, I developed extreme neck tightness, lower back and hip pain, leg numbness / heaviness, dizziness, vision nearly blacking out then tunneling back in, constipation worsened, endless food intolerances. So much was happening at once and I had no clue why. I saw so many doctors and no one would give me a good answer / one I would accept.

I joined a million Facebook groups, especially ones pertaining to interstitial cystitis. That’s when I read about stealth infections like mycoplasma, Bartonella, and Lyme disease. I went to my primary care and begged him to run a Lyme disease test on me. It came back equivocal, which to the conventional / allopathic medicine world meant it was negative. I learned from these FB groups that when it comes to the Lyme disease tests (Elisa and western blot), they are extremely inaccurate and not reliable. There are a lot of false negatives. So, knowing this I found a Lyme literate practitioner and brought this test to her. In the Lyme disease world, equivocal is a positive result. But I also had all the clinical symptoms of a Lyme disease patient. So, finally 3 years later I was diagnosed won’t Lyme disease. At first I was relieved to be validated, that I wasn’t “crazy” and I wasn’t “blowing things out of proportion”. But soon, I learned how controversial, expensive, and difficult this disease is.

So now, almost 4 years after my diagnosis I am still treating, but in a very different way than when I first started. Lots of supplements, medications, sauna, diet change, etc. The treatments can be very overwhelming at times. I still mourn the person I used to be...

But I HAVE to remind myself that I am strong. My body is strong, my mind is strong. And because of this disease- I AM LYME DISEASE STRONG. 💚