Good evening all...
Today is the first day of winter...and my last post was at the start of Autumn.
Frida, the puppy, is...well, she's being a puppy. I have been in tears at times and thank myself regularly for not going down that path of giving birth and having a human baby - sorry, but no fucking thank you. I would defo be a candidate for PND.
So the other day was World MS Day and the 'focus' this year was all about invisible symptoms.
There are many MANY invisible symptoms associated
with MS. And the other things is, that many everyday annoyances become our 'new
normal', much like other annoying illnesses/diseases/disorders etc. Here is a
snippet taken from document aptly named 'But You Look So Good!'
(https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-But-You-Look-So-Good.pdf)
But people, this is not the full list! And I would argue that some of these are quite visible - anyone that knows me well would agree with me when I saw my heat sensitivity is not that invisible (the whining, sweating, crying, tantrum-like behaviour, insistent need for AC etc), and that dizziness...sometimes I just have a sober drunk moment...and it usually last a split second.
But people, this is not the full list! And I would argue that some of these are quite visible - anyone that knows me well would agree with me when I saw my heat sensitivity is not that invisible (the whining, sweating, crying, tantrum-like behaviour, insistent need for AC etc), and that dizziness...sometimes I just have a sober drunk moment...and it usually last a split second.
Sounds fun huh?
Let us look at ONE symptom, that has many
layers...
Let's have a look at another in some more
detail...
And one more just for shits and gigs!Thank you
to https://mymsaa.org/ms-information/symptoms/ms-symptoms/ for helping a
sister out in explaining this stuff
Here is a simplistic list of
MY invisible symptoms:
'MS symptoms that are hard to see include
fatigue, pain, cognitive problems like memory loss or trouble solving problems,
weakness, blurred vision, numbness, prickly or tingling sensations, heat
sensitivity, dizziness, balance/coordination problems, and bladder or bowel
problems.'
Sexual Dysfunction
- decreased sexual sensation
- decreased vaginal lubrication
- decreased libido
- decreased willingness to attempt to engage in
physical sexual activity (due to other physical discomfort)
- limited mobility may result in the
inability of the person with MS to maintain certain positions to engage in
sexual activity
- spasticity can be painful and result in
avoidance of sex
- painful intercourse
- bowel and bladder dysfunction: People with MS
who have difficulty controlling their bowels or bladder often avoid intimate
contact fearing an embarrassing accident.
- do. I. need. to. continue? I actually
could because I have only covered Primary and Secondary Sexual
Dysfunction...there is also Tertiary...
Anxiety and Depression
- PLEASE READ THE ABOVE! In addition to the
above,
- chronic unhappiness
- frequent worry/guilt/feeling out-of-control
- excessive concern with health
- negative thinking about the future..I will stop
there because I am actually getting teary.
Pain and Numbness
Neurogenic Pain
- Steady dysesthetic pain, which is a
burning, tingling, or tightening sensation, usually occurring in the legs and arms,
but sometimes in the body; it is the most common chronic pain syndrome; it can
be dull, nagging, or have a prickling sensation associated with warmth; it
tends to be worse at night and after exercise; it is also aggravated by changes
in temperature
Nociceptive Pain
- This type of pain is usually less intense
but can be long-lasting. For instance, weakness on one side of the body will
cause someone to favour the other side and develop stiff joints; muscles can
become twisted and cause the body to be unbalanced, frequently leading to
muscle and joint pain
There's more but you can research
yourself if you're feeling brave.
- sexual dysfunction ('but can you be more specific Sascha?' No, I cannot)
- pain (in my knee, and my fucking soul)
- Heat sensitivity
- bowel and bladder issues (let me just say when
I gotta go, I gotta go)
- anxiety (...although...WHO DO YOU KNOW THAT
DOES NOT HAVE ANXIETY!?)
- depression (quite recent, and it's
all connected to the fucking MS and yes I have had suicidal thoughts, but can
confidently say I would never act on them - these tend to rear their ugly head
when I am aggravated by the heat/humidity)
- dizziness (at times)
- balance issues (at times)
- limb movements associated with
spasticity (yes, I can be a spastic - usually at night in my feet and legs and
I get the briefest warning beforehand, but cannot describe the warning)
So yeah. Maybe getting quite real this blog. Giving out some extra info that I have held back in other posts.
My annual MRI is on Monday and I am fucking petrified that there will be changes. But I can't do a thing.
My appointment for the MRI are on June 19th, so expect a post them.
Oh and Liberals won the election. Fuckers. Why this nation doesn't care about people and the environment is beyond comprehension.
P.S Frida just came to comfort me (maybe because I was crying a little tiny bit, maybe)