You Look Fine

"You look absolutely fine to me!" beamed the Community Healthcare assessor.
It's
not the diagnosis but the symptoms that seems to be accountable. So if
you are diagnosed with something like life limiting systemic scleroderma
and severe Raynaud's, where you have peripheral shut down several times
a day...it doesn't count.
For the less medically inclined,
Raynaud's is a circulatory auto immune condition where upon blood
vessels spasm in the body, cutting off circulation to limbs and internal
organs (in my case) as a result of response to stress, temp change,
virus, medication, physical stress....and just about whatever it likes!
Diffuse
systemic scleroderma with heart/lung involvent means my immune system
is shutting down my vital organs. In effect, my immune system is acting
like cancer cells, attacking myself.
For me, and many others, a
Raynaud's attack begins with sudden feeling of cold, fatigue, and cold,
blue, numb digits and hands. This leads to lack of concentration and
worse as I try to resist. My oxygen levels drop, as does my body
temperature, and I feel frozen even in blistering heat. Because of the
lack of blood flow, and frequent, prolonged Raynaud's attacks can lead
to tissue death and gangrene. In my case, which is not common, the
peripheral shut down leads to further blood flow restrictions to the
internal organs and tissues. Causing irreparable damage everytime it
happens (such as lung fibrosis, or other tissue death).
When this
systemic shut down suddenly occurs, I pass out due to restricted blood
flow (hence oxygen) to my heart, lungs and brain. This could result in
complete shutdown of my heart, leading to cardiac arrest and death. But
of course, to everyone I look "perfectly fine!" (If I had a pound for
every time I’ve been told this!). Being like a "ticking bomb" that
could expire any minute is not externally visible.
All of these
are rare symptoms of severe Raynaud's Disease to varying extents,
depending on individuals and other existing conditions.
Of course
that's just one problem I have. I have in total 4 or 5 overlaying auto
immune conditions which make my life just an existence. But to others, I
Iook fine!
The diffuse systemic scleroderma has caused lung
fibrosis and hardening of my soft tissues. It's a slow death, where
everything is shutting down slowly- in my instance anyway. It's
affecting my heart, breathing, mobility and speech and
etc....depressing, debilitating and progressive. I am on a daily
concoction of many tablets and drops and ointments. These are supposed
to reduce the effect of symptoms but do not prevent progression of the
disease until ultimate demise.
My face and body have changed. I
need plastic surgery at least once a year to relieve problems with
eating and choking on my own tongue due to narrowing of my mouth and
throat. One reason dental treatment is hard for scleroderma and sjogrens
sufferers and we end up losing our teeth early. As I have started to.
I am trapped in by my own body and it's an existence I would not wish upon anyone.
But I look fine to others.
How
many people reading this suffer from auto immune conditions whether
systemic such as Lupus, MS , arthritis, Crohn's or visible such as
eczema, and psoriasis? I don't plan to give a lesson in medical diseases
here but what I am trying to express is that society rules that if you
look well or chirpy or even have a positive attitude, then you don't
have pain, incontinence, reflux, epilepsy, digital ulcers (with
excruciating pain), nausea, debilitating fatigue or on chemotherapy
daily for weird and rare auto immune conditions or even depression.
Thus, it seems that looking fine equates to not needing support and
care.
Sadly, these principles extend to funding and NHS CCH
assessments for entitlement of home assistance. They advertise for
clients because it's a commission based business but when it comes to
the crunch, the opinion is that "there are people in care homes." So of
course, why should I or anyone else chronically ill be entitled to a
quality of life in their own home?!
The law states that
individuals are entitled to have a say in their care and life quality.
However, when the NHS hands over the running of it's services to an
outside company such as CCH, the human element is subsided and taken
over by profit margins.
Personal dignity and pride doesn't allow
everyone with chronic life threatening conditions to carry a notice
board stating as such. It helps to pretend there is nothing wrong so we
can appear to have normal lives. Specially if you have children who are
affected by watching you suffer and deteriorate.
I think the old
saying still stands that we really can't judge a book by its cover,
unless you have read and lived through it's story. And to think, if I
continue writing, I would spill a whole can of worms that authorities
would not look favourably upon. And the stress may just be the end of
me!
If you are affected by a chronic auto immune condition with life changing symptoms, however minor, please write in.