So, I decided to blog about my MS... why? because
the simple act of writing 'it' down is very cathartic for me. If you have
ever experienced this condition, you will know, you have to do whatever
helps in order to get through each day... so I'm hoping this will help
me...
I'm, Karen...
Yep, that's me... just an ordinary person, no-one
special. I'm not particularly good looking; I'm not super-intelligent; I
haven't invented anything or made a name for myself... I'm just me, ordinary,
average, everyday... me. Except, I was (finally... but, that's
another story) diagnosed with progressive MULTIPLE SCLEROSIS (not to be
confused with 'relapsing remitting' MS - I never get a break from
this debilitating disease!)
I supposed I should give you some background, but
I think that'll come as I write more... so if you want to know me... you'll
just have to keep reading as I unload to the world!
I will say... I was diagnosed (after a hard
fought time with the NHS) in Sept 2014, after various tests, waiting for
results and bouts of worrying (what is wrong with me?) and hoping (they maybe
able to fix me, but not before they know what's wrong!). The bad news was
of course, that my MS was of the 'progressive' sort and therefore,
"here is nothing we can do for you". Well, thanks for nothing!
ME: I'm divorced with two
grown-up children. I live in a flat (not ideal, but hey ho, beggars can't
be choosers). My family owner and run a static caravan park in Wales,
we've been here for the past 30 years. I live in one flat (above the
clubhouse), my mum and dad live next door, my son (he works on the caravan park
as a general dog's body manager) lives in the flat above mine and my
daughter is an early years teacher, she works and lives in England.
MY MS: I have lots of moaning to
do... but I won't overwhelm you with it all at once (I'll save some for future
posts!). Needless to say my 'progressive' state has progressed...
I have a few health issues (thanks MS -
you'll probably read a lot of sarcasm in this blog, it may be the lowest form
of wit, but I'm still glad to have any kind of wit at this stage!), I will name
but a few...
-
FATIGUE - its NOT
tiredness (or being lazy), see 'spoon theory' it
will explain it better or listen to this on how 'The
Spoon Theory' was born.
·
BLADDER/BOWEL PROBLEMS -
ooohh, these difficulties can make the difference about whether you want to
live or die!
·
PAIN - neuropathic pain
is so REAL, and something few MS sufferers do not experience in some form or
other.
·
SPASMS - no explanation
can do them justice, they are the worst!
·
SPASTICITY - (rigidity/stiffness) mine is mostly
my left leg, so difficult doing anything when your leg is stuck in one
position and will NOT move.
·
SENSORY DISTURBANCES-ABNORMAL
- have YOU ever feel that cold water is dripping down the side of
your head or ants are crawling all over you or constant pins and needles
throughout your body?
·
SENSORY DISTURBANCES-PAINFUL
- the 'hug' (not as nice as it sounds!) or freezing cold that
cannot be warmed?
·
MUSCLE WEAKESS - until
your body can no longer support itself.
·
COGNITIVE CHANGES -
memory relapses (who am I?), confusion (what am I doing?).
·
DEPRESSION - I am dying
a slow, painful death... but I'll keep smiling! (and there's that sarcasm).
·
There are lots more, but I'm getting depressed
listing them, so I'll move along...
One thing that I've found that helps me cope in
times of stress (
stress... a very bad thing for MS'ers, it will
exacerbate
everything in a bad way and make it all SO much worse...
avoid, avoid, avoid!) - is online support groups, particularly, for me, a
Facebook group -
The UK MS
Support Group. The like-minded people there have rescued me from deep
depression on a number of occasions! This was my last
cry for help
post...
24th August 18:25
Feeling sorry for myself 'cause progressive
MS sucks!!!
People with progressive MS have a different
illness -- physically and emotionally -- than other MS sufferers.
There’s no new treatments!!! Advanced
research, medication and new testing is not for the likes of you! Progressive
MS sufferers feel left out by health care professionals and researcher -- we
are told... ‘we can’t do anything for you.’”...
The experience of progressive MS itself is
different, too. Unlike people with other forms of MS, who have attacks followed
by symptom-free periods, people with progressive MS are living with a disease
that steadily progresses and worsens...
There’s no “bright side” to progressive MS.
Signs: While there is no definitive timeline
and not everyone will experience each symptoms/problems, the following are some
of the things which may happen with progressive MS (look what I have to look
forward to...)
1. Breathing: shallow and ragged
sounding, laboured, many bouts of pneumonia (tick to the breathlessness, oh
goodie pneumonia!)
2. Swallowing problems that cause choking on
food, fluids, saliva (tick)
3. Worsening bladder and bowel problems,
having a permanent catheter. (tick...TMI pooped myself today... bring on the
nappies)
4. Pain starts or becomes much worse, and the
person needs strong pain meds, such as morphine or fentanyl patches. There can
be very dangerous drug interactions with the MS drugs, anti-depressants,
sleeping pills that can slow the heart and breathing to life threatening
levels. Drug addiction can result as well. (tick to the first part... drug
addiction doesn't sound so bad about now)
5. The drugs and/or the MS make person more
disoriented, lack of focus, crying out in the night, not sleeping through the
night, needing more and more assistance from carers because they are
uncomfortable, need a drink, repositioning, more pain medication.(what sleep,
what carers)
6. Changes in mental attitude, worsening
depression, forgetful, worried, anxious, confused... (tick)
7. Having a feeding tube. (I'll save on
washing up)
8. Needing a respirator. (It'll be easier to
give up by this point!)
9. Needing 24 hour care.
10. Many more trips to the emergency room and
hospital stays for any of the above problems, and/or infections, low
electrolytes, low blood oxygen, low pulse, and more.
Oh, yes... feeling VERY sorry for
myself and all the poor people around me, who have to watch my slow decline
into human jelly! No more reading up about MS for me!!!
Within
just a few minutes I had people (strangers but fellow sufferers) offering
support and advice, helping me through my MS blip and making me realise... I am
not alone,
there are people who do
understand what I'm going through, who sympathise and offer whatever support
they can!
Together We Are Stronger...