As my 4th decade approaches I feel the need to speak about things that have bothered me in the past. Bothered me so much that I kept my thoughts inside while debating whether I should be telling someone (a professional someone) just to get the thoughts straight and out of my head somewhat. We I didn't and I haven't sooooooo.... time for a little blog ramble about things that disturb me about having MS.
1.
I'm afraid. I'm afraid, Dave. Dave, my mind is going. I can feel it. I can feel it. My mind is going. There is no question about it. I can feel it. I can feel it. I can feel it. I'm a... fraid. HAL (Douglas Rain) 2001: A Space Odyssey Ahh it sounds so easy when you read the literature...brushing casually over the words "
cognitive deficits" like anyone can live without a few cognitive processes. OK so I am getting older, and not being able to articulate names of things (or people) is something you would expect of someone in their eighties but here I am still in my thirties talking like Homer Simpson
"Marge, where's that... metal dealie... you use to... dig... food? ...". Unfortunately when you look basically normal, the fact that you can't remember the word for something can create the assumption that the cause is one of the following drugs, booze, drugs and booze, you are a moron.
I know I have lost quite a few IQ points in the last few years too. Probably about 20. Maybe more. Luckily I was a bright spark to start with. I remember reading after being diagnosed (oh deary me the internet has some horror stories from some people with MS) about this guy who was in the US army (or was a marine or some other ra-ra military job) who was diagnosed because his reports had deteriorated to the level of an 8 year old attempting to describe events. He then went on to talk about how MRIs had shown he had a hole right through his brain about the width of a pencil.
My ability to write beautiful prose has been damaged too and it is much harder than it was a few years ago to write a nicely rounded sentence, to sit back and admire the creation. Now it is a hard slog to get the words there in a decent structure, first go (as you can probably tell from the blog and my lack of self editing :)
2.
I never thought I'd be so tired at 22. - Jules (Demi Moore) St Elmo's Fire When I was a teenager my father took to calling me lazy. Not only was I going to school, I was working a casual job and I was training 5-6 nights a week for Athletics or long distance running. Because I would prefer to rest rather than clean ovens or hand weed gardens he would scream at me and point out my other siblings were doing their bit yadda yadda yadda. I would look at them and wonder why they didn't feel so tired they could hardly speak. Fast forward a decade and the same thing was happening when it came to working and house cleaning, another decade and add 2 kids to the mix. I always thought I was lazy, there could be no other explanation, other people didn't get tired, other people could walk around in the city for hours and then come home and cook and clean, other people didn't need a nap at 3pm on summer afternoons.
The fatigue factor has always stuffed me around, I have felt guilty that my kids have seen me almost zombie like because I was so tired I couldn't focus on what they were saying. I know now that fatigue is the most wide spread symptom of MS. But I bet it is one of the least understood by non-MS people. Again, I look normal until I can't stand up any more. I've got my reputation as superwoman to uphold but dammit won't some fucker give me a hand with the housework*?
3. I was going to write about how I cry too easily now (see title then reference emotional lability) but couldn't be arsed after seeing this table that I have neatly stolen to put in what I have and have not experienced. There are more symptoms than are listed below too...like the fact at 24 my cat scan showed my brain had shrunk to the size of a 60 year old's.
Description
Optic NeuritisBlurred vision, eye pain, loss of colour vision, blindness
NO
DiplopiaDouble Vision
NO
NystagmusJerky Eye Movements
YESOcular DysmetriaConstant under- or overshooting eye movements
YESInternuclear OphthalmoplegiaLack of coordination between the two eyes, nystagmus, diplopia
YES
Movement and sound phosphenesFlashing lights when moving eyes or in response to a sudden noise
MAYBEAfferent Pupillary DefectAbnormal pupil responses
NOMotor Symptoms
Description
Paresis, Monoparesis, Paraparesis, Hemiparesis, QuadraparesisMuscle weakness - partial or mild paralysis
YES
Plegia, Paraplegia, Hemiplegia, Tetraplegia, Quadraplegia
Paralysis - Total or near total loss of muscle strength
YESSpasticityLoss of muscle tone causing stiffness, pain and restricting free movement of affected limbs
YES
DysarthriaSlurred speech and related speech problems
YESMuscle Atrophy - Wasting of muscles due to lack of use
NOSpasms, Cramps - Involuntary contraction of muscles
YESHypotonia,
Clonus Problems with posture
NOMyoclonus,
Myokymia - Jerking and twitching muscles, Tics
YESRestless Leg Syndrome Involuntary Leg Movements, especially bothersome at night
NOFootdrop foot drags along floor during walking
YESDysfunctional Reflexes MSRs,
Babinski's,
Hoffman's, Chaddock's
YESSensory Symptoms
Description
Paraesthesia Partial numbness, tingling, buzzing and vibration sensations
YESAnaesthesia Complete numbness/loss of sensation
YESNeuralgia, Neuropathic and Neurogenic pain Pain without apparent cause, burning, itching and electrical shock sensations
YESL'Hermitte's Electric shocks and buzzing sensations when moving head
YESProprioceptive Dysfunction Loss of awareness of location of body parts
NOTrigeminal Neuralgia Facial pain
NOCoordination and Balance Symptoms
Description
Ataxia Loss of coordination
YESIntention tremor Shaking when performing fine movements
YESDysmetria Constant under- or overshooting limb movements
YESVestibular Ataxia Abnormal balance function in the inner ear Hmmm
NOVertigo Nausea/vomitting/sensitivity to travel sickness from vestibular ataxia
NOSpeech Ataxia Problems coordinating speech, stuttering
YESDystonia Slow limb position feedback err I don't know
Dysdiadochokinesia Loss of ability to produce rapidly alternating movements, for example to move to a rhythm
NOBowel, Bladder and Sexual Symptoms
Description
Frequent Micturation, Bladder Spasticity Urinary urgency and incontinence
YESFlaccid Bladder, Detrusor-Sphincter Dyssynergia Urinary hesitancy and retention
YESErectile Dysfunction Male and female impotence
PROBABLYAnorgasmy Inability to achieve orgasm
YESRetrograde ejaculation Ejaculating into the bladder
NO THANKSFrigidity Inability to become sexually aroused
YESConstipation Infrequent or irregular bowel movements
YESFecal Urgency Bowel urgency
YESFecal Incontinence Bowel incontinence
YESCognitive Symptoms
Symptom
Depression
YESCognitive dysfunction Short-term and long-term memory problems, forgetfulness, slow word recall
YESDementia
NOMood swings, emotional lability, euphoria
YESBipolar syndrome AHAHH I Dont K
NOW
Anxiety
YESAphasia, Dysphasia Impairments to speech comprehension and production
YESOther Symptoms
Symptom
Description
Fatigue YESUhthoff's Symptom Increase in severity of symptoms with heat
YESGastroesophageal Reflux Acid reflux
YESImpaired sense of taste and smell
YESEpileptic seizures
NOSwallowing problems
YESRespiratory problems
NOSleeping Disorders
NOInappropriately cold body parts
YES* both my children and my partner do help with housework...the surface stuff anyway. I need a CLEANER