Tuesday 23 July 2019

So many things... so much time...

Well... I'm now in a completely different situation to when I last blogged... Got two kids, now separated, with a new partner, moved back to my old hometown... My gods things have changed...

Anyway, this blog is mostly just to "timestamp" my current list of health issues, more for my own benefit than anything else. Have no idea if I will start blogging again, energy and motivation are at very low levels, permanently these days!

Anyway, here's the list for anyone who's interested!

## TW: extreme pain, mentioning of sexual abuse and mental health issues ##

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Physiological issues
- Head/Neck
Keratoconus in the left eye (properly diagnosed at West Middlesex Eye Hospital)
Clicking and sore jaw, sometimes lockjaw
Very tense muscles and cracking neck, sometimes seems like I can feel pressure being pushed up into the base of my skull (sometimes quite unnerving/worrying)
Sometimes my neck will become so stiff I physically won't be able to rotate or tilt it in certain ways/directions
Have suffered from headaches and migraines since my early teens

- Collar/Shoulders/blades
Very tense muscles in collar, will sometimes "go into spasm" (become so tense suddenly that it forces me to move uncontrollably)
Shoulders crack and click on rotation most of the time
Muscles around shoulder-blades often become rock solid, incredibly painful, feels like they're trying to push their way out of my back through the skin

- Chest/sternum
Previously had bilateral gynecomastia to liposuction performed on both breasts
Before and after said procedure have always had tightening bands of muscle pain which seem to go around the middle of the ribs, feeling like they're slowly being crushed
Have frequently felt a "stabbing sensation" in all different parts of my chest, normally from the sides
Have had random pain in the sternum, as if it had been hit or bruised (has happened in the past) but without any actual impact damage being previously done
Sensation of ribcage trying to open or cave in at the sternum

- Arms/elbows
Frequent muscle fatigue accompanied by a burning/electrical tingling/crushing pain
From shoulder to fingertips can sometimes feel so weak/painful that I can't even lift a drink, let alone wash myself/shower/brush teeth etc
When I am able to carry shopping or similar, I've noticed that my limbs very much "hang off" of the joints (something I was made aware of during previous physio)
Twitching sections of muscle near the elbow

- Wrists
Frequent crushing/stabbing pain, muscle tension, cracking and clicking upon rotation
Sometimes becomes so painful that I will try to totally immobilise my hand to prevent further pain

- Hands/fingers
Many knuckles crack on some manipulations, sometimes just making a fist
Will sometimes get what feels like extreme muscle weakness in my fingers; not able to grip strong, hold something "technical" or "small" like a pen/pencil or knife and fork
Can get extreme burning./crushing pains all through my fingers which makes me have to drop and stop everything I'm doing
Thumb pads get incredibly tense/inflamed and painful when I try to use my crutches or wheelchair, to the extent where I avoid going out most of the time
Very odd skin - will sometimes become very hard like calluses but without the friction, can become dry, itchy and sore, will go through bouts of skin "shedding"
Will take ages to warm up once cold

- Stomach/digestive system
GERD/acid reflux caused by certain foods and stress/anxiety
No consistency in form/solidity of solid waste, can be water one passing then incredibly painful constipation the next

- Middle/lower back
Muscles that run parallel either sides of the spine will frequently become rock solid, incredibly painful, feels like they're trying to push their way out of my back through the skin
Muscles around the lower back/lumbar will also frequently become rock solid, incredibly painful, feels like they're trying to push their way out of my back through the skin 
All muscles in these areas will frequently "go into spasm" (become so tense suddenly that it forces me to move uncontrollably)
Back muscles will also sometimes feel so weak that I struggle to keep myself upright without significant effort and conscious correction

- Pelvis/hips
Stabbing pains on the sides of the pelvis, top and bottom
Glutes can become rock solid, ridiculously painful, can take hours for the tension to start to ease
Burning pain around where the thighs connect to the pelvis
Many instances of spots/boils around the backside and inner thighs

- Thighs/calves
Lots of stabbing and crushing pains
Muscles will frequently become solid, go into spasm
Used to suffer from agonising cramps, to the point of literally screaming in pain and becoming immobile
Used to suffer from agonising growing pains. Have continued to get these sensations into my 30's but to a now lesser degree
Legs will sometimes go incredibly weak, will wobble and shake after a second or two of standing and then collapse under me
Have frequently been had a go at due to "jiggling my legs" - I sometimes get this build-up of pressure or energy in my legs and will have to bounce/move them otherwise it can become ridiculously painful/lead into cramps - also have this when trying to sleep but can normally limit the movement to my ankle (RLS?)

- Knees
Many instances of feeling extreme pressure around and behind the kneecap
Stabbing sensations around the kneecap
Have been told by a previous GP in Datchet that I have "very loose knees" (with regards to range of sideways motion)

- Ankles
Cracking and clicking on rotation most of the time
All sorts of pains; burning, crushing, stabbing

 - Feet
Extreme stabbing pains in the base of the heels/bottom of the arches, medial plantar area on occasion
Stiffness in the joints of the toes, as if they need to crack but won't
Some form of eczema on the sides, soles and toes - tiny little blisters (will sometimes have fluid in, sometimes not) which if left alone will leave hard little disks of skin which can easily be picked/scratched out
Strange white striping on the sides of some of my toenails
What appears to be a thin layer of skin trying to grow over some of my toenails
Can easily rub layers of skin off of my feet once they're wet (can repeat within a day or two even if after a thorough scrub with a pumice stone
Will take ages to warm up once cold

- General all-body
Have been previously diagnosed with fibromyalgia, now been changed to EDS Type III
Hypermobility
Bouts of tiny little spots, sometimes clustered together
Raised moles (have accidentally scratched a few off without realising)
"Hard pores/follicles" which I can scratch off. Almost like tiny hard spots without any puss in them (skin feels slightly bobbled when it happens) - happens infrequently
Intolerance to temperatures (mild chill and seem freezing, slight heat can seem roasting or still cold)
Frequent extreme night sweats to the degree of my sheets, duvet, pillow and mattress becoming saturated with sweat; sometimes to the point of not completely drying by the next nightfall
Very broken sleep, aware of waking up multiple times a night due to pain
Unable to lie in bed for more than seven hours at most without extreme pain
All over pain and fatigue; simple things like walking, cooking, cleaning (house or self) can become close to impossible on occasion
If I have an active day, be it physically or socially, I will suffer for a good few days afterwards with extreme fatigue, pains, muscles spasms, depression and mental exhaustion

Mental health
  • Have been previously diagnosed with many different forms of depression ("general depression", MDD, unipolar depression)
  • Have been previously diagnosed with anxiety
  • Have suffered with self harm in the past and attempts to take my own life (now well under control, no longer self harm and all impulses have gone)
  • Have suffered with bullying for most of my school life, be it due to my odd behavior, my appearance, the way I spoke, my scholastic achievements, anything
  • Have suffered sexual abuse at different stages in my life, most significantly at school and during my previous relationship - now significantly struggle with sexual activities
  • Have suffered from non-physical domestic abuse throughout my last relationship
  • Struggling to deal with the degradation of my body and how it's impacted my life
  • Was always "one of the weird kids" when I was young; didn't know how to properly interact with or read people, often get told off for "misbehaving" (normally due to a lack of focus) however always performed well academically
  • Took a long time of punishments and self-teaching to understand what was and wasn't acceptable social behavior or tones of conversation, how to interact with different groups of individuals, understanding body language etc.
  • Would often (and still do) get what I can only describe as "a sensory overload" - all colours and light that I could/can see around me would suddenly leap out towards me, light reflections will become "fractal" in their nature, small bits of visual detail will quite literally suddenly fill my field of vision before darting back to their original place. Sounds will seem to reverb like mad; any form of conversation being had in the background will become like a deafening roar. During these "episodes" I normally end up "locking up" or freezing in place whilst having what feels like a "silent" anxiety attack inside. My thoughts will normally end up being so rapid I can't focus on a single thought.
  • What I can only perceive to be OCD-ish tendencies. Do certain tasks a very certain and particular way and can become upset, frustrated or angry if something interrupts or disturbs the order or speed of the process I’m undertaking
  • If I have a plan formed in my head (with any regards) and something happens which upsets, delays or changes anything to do with that plan then I struggle to handle the changes and can become panicked and flustered
  • I have other issues with my self image/sense of self-worth and other things which I've been battling with since childhood.

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