Sudden infant death syndrome

° " So Omfg! I Litterly Wouldn't Wish This Nightmare Virus On Anyone... Not Even On My Jealous Enemie's... I Started Off With A Severe Headache Litterly From H*ll. To The Point Where I Thought That I Was Having A Stroke It Was That Bad I Was In Tear's. The Body Pain Was Horrible. I Haven't Eaten In 2 Day's. The Feverish Up's And Down's. I'm Still Stuffy And Can't Move I'm So Exhausted All The Time... I Still Have Body Pain. No Memory Fog Yet. I Couldn't Wish Or Celebrate. My Son's 20th Brithday. Yesterday. For The New People That Don't Know. I Lost My Son To " Sudden Infant Death Syndrome "... In 2004. So I Wish Him A Happy Birthday Every Jan 12th.. Well Still On This Messed Up Adventure Until Next Post.... Take Care Peep's Xoxo " ° •Skaoi Kvitravn• #Thought 's

× " For The Past Year I Have Felt Soo Alone... And Lost Sometime's I Feel Like The Event's Of My Life Were Never Supposed To Happen... But They Did Starting With My # Molestation At 14 Then #raped At 16... I Left Family At 18 And Got Married At 19 I Had A Baby And Lost Him.. To " Sudden Infant Death Syndrome " And Then The Losse's Of My Mother And Brother And Lastly The End Of My 17 Year's Of Marriage... I Truly Tryed My Best To Be The Best Wife To My Ex-Husband... But I Was Never Enough... And Not Up To The Standards Of His Sibling's... I Loved My Father In Law... My Mother In Law And I Budded Head's Constantly... Over My Ex... Now That I Didn't Understand I Have Alway's Felt Like A Was 3 In Our Realtionship... But Again I Don't Understand Men At All Anymore... My Marriage Felt Like A Chore.. TBH And Now I'm Deadset On Never Getting Re-Married Ever Again... I Tryed To Set Boundries And My Ex Didn't Listen To Me So I Needed To Walk Away... Thing's Were Never Going To Change With Him... His Priority Were His Mother...Brother And Women Co-worker's.. Which Is Messed Up... But I'm Glad I Walked Away From The Constant Being Ignored Like I Didn't Exist.. Now I Can't Even View Men In A Diffrent Way... Because I Feel Like I'm Going To Get Hurt Again... Used For My $ And My Kindness... " I'm Not Bashing Any Men Ok... These Are Just Feeling's And Thought's.. Not All Men Are Jerk's.. Yes I Get Hit On At Work And It Get's Boring Quickly Especially If It Older Men... Idk Why I Attract Those Type's.. And It Litterly Make's Me Want To Be Single For The Rest Of My Life.. Is There Something Worng With Me... Idk " × # Thought's#trustissue 's ☆S.K.☆

Im 25 years old. I have a almost 5 year old boy and a forever 2 month old daughter. I lost my daughter due to SIDS (Sudden infant death syndrome) back in June. I never suffered from anxiety until that day. Since then it has been getting worse and worse. I have tried all different medications. I’m depressed also. I don’t know how to go about my daily life. I try to be such a good mother to my son and I don’t want to miss out on doing things with him bc of my anxiety and depression. Any advice what to take and different routines to help me go on a somewhat normal life ?:/

After the fun-filled celebration of having to scroll further down age-selection forms on the internet yet again, I felt rather bemused at how fast life was whizzing through highs, lows and the “despite this/that…” moments.

So, after hearing standard questions like “How’s the facial pain going?” as well as “Willeke, why do you never smile at the camera?!”, I wanted to give as much information in one short sentence as possible. Being low on energy automatically makes me stop talking about “that” subject because it is just a symptom that few people understand, but many disbelieve.

And of course, “that” subject is MS and its related facial pain.

You could them anguish, period.

In my mind, the story would go like this: “Well, I don’t smi… No, let me start over, physically this face WANTS to smile or perform Mick Jagger-like singing theatrics with my mouth, but my 5th cranial nerve prefers a Swan Lake ballet routine instead. Sarcasm being my middle name, this will require further explanation, but we’ll stick to this for the time being.”

Other medical questions on my birthday aside, I tried leaving out any psychobabble and self-analysis answers because aside from having MS and a few other ailments, I am really just an average chick whose body rattles and shakes like everyone’s at my age, especially after just adding another 365 days to my life.

To be fair to my facial features, the combined answer to why I don’t smile all that much or why I don’t always burst out laughing is easy: facial pain. Utter, utter, agonising, stabbing, piercing, burning pain in my ear, eye and temple. Naturally, since laughing is a primal response, you just don’t have that much control over it even when you think you do.

When someone or something quite gallantly activates my laugh-switch, so, my face responds with a burst of uncontrolled laughter, forgetting that my 5th cranial nerve has a #Disability all of its own. In English – and without exaggeration – thirty seconds of www.sharecare.com/health/neuralgia/what-triggers-trigeminal-... sets off hours of facial pain. Consequently, out of necessity and when possible, I smile and giggle on the outside and howl of #Grief on the inside.

All that aside now, because of my daily #ChronicPain(s) and a mutual interest in all things concerning the mind, one of my friends asked me if I were given a choice, would I choose to be physically or mentally ill. Not really a question for birthday celebrations, but an interesting catch-22 either way.

In a fair, disease-free world, I want neither, that much is obvious. If I had to choose between the two, it would be awkward as I have little to no experience with being mentally ill. On the other hand, I have gathered so much knowledge about being physically ill in all its varieties, so I felt I could answer the question easily enough.

Or so I thought.

Physical health speaks for itself, as all of us have some level of fitness, wellbeing, illness or disability
Mental illness is mostly caused by genetics, environmental, biological or psychological factors and involves cognitive thinking and the processing of information
Emotional health is about being able to express one’s thought processes, behaviour and feelings in relation to other people’s description. It is harder to deduce as it depends on age and probable stressors like #Depression

I have always maintained that describing one’s disease and pain is quite relative. What A sees as horrendous pain might be just peanuts to Z. For example, a friend told me later that day that he had the hangover of all hangovers, and that his wrist felt awful because of computer-induced repetitive strain injury. When I think of my own very painful RSI while working in a library many years ago, it would now register low as neuralgia has overtaken RSI on a pain level scoresheet.

As such, both of us feel abnormal under our pain, but as the adage goes, you cannot compare apples to oranges. Whereas someone with the mother of all hangovers will not have to end their career because of a night out (unless they found themselves in a car crash or other serious accident), I had to finish my career because of never-ending fatigue and merciless trigeminal pains.

It’s also quite clear that comparing or even choosing one illness over another is impossible, and in fact, something nobody should ever have to contemplate (I put it down to the company I keep sometimes, bless their souls). Trying to find out if being mentally ill is worse than having a physical illness is a job not done.

Either way, I tried working out what I knew about mental/emotional health opposed to physical health by mulling over the depression I had two years ago, and the MS that has been here for at least 15 years.

I know MS inside out, therefore I refuse to let it get the upper hand as I go against its very appetite for neurodegeneration as best as I can. If MS had a face, I would refuse to show how it impacts me. If it had a body, I would whack its knees from under it.

(Sorry mum, I know you raised me to be a “Make love, not war” type of person, but in this case, I feel I’m justified in whacking MS)

So, I have MS.

Boohoo.

Not as the neurologists know it, but as I, the carrier of the lesions know it.

At first, MS was unkind. Bitter. Humiliating. Careless. Unfair.

But, I’m cool with that, now.

I learned to live with it, around it, over it, aside from it, in it and in just about any other way you can live with a neurodegenerative illness. Despite it being here 24/7, I continue to find beauty in life. What MS and I have going is a long-term relationship, because no cure means needing lots of hope and patience. As the eternal optimist, I have both in high quantities.

I’m cool with all that too.

Is life with MS that comfortable, then?

It is not. At all.

But, you simply have to learn how to live with it. Somehow I found a way to tap goodness from those negative connotations because I listened to its actual narrative by refusing to make a mountain out of a molehill (for more on self-pity, check this post irelandms.com/2016/08/12/man-up).

So, even when facial pain is also called “the #Suicide disease”, even when MS fatigue can knock me senseless in less than five minutes, and even when I feel awful inside despite not looking sick, I am just cool with the whole lot because there simply is no other way.

The depression that came and went used a similar rhetoric. I felt it was humiliating. It felt unfair, and it was similarly careless in the way it progressed. The biggest difference between MS and depression? depression left with one tablet a day for a few months. It might return, but then again, it might just stay away forever. My MS is currently on a regimen of approximately 28 pills a day, about 10,000 tablets a year. As long as there is no cure, it will be here until my very last day on this planet.

Obviously, I cannot speak for those with enduring mental illnesses, for those in treatment and just as eager to be cured as others with physical illness are. I base my knowledge on what I learned during my counselling course and what I went through with depression.

Despite feeling weak during my depression, I was still able to leave the house on my own two feet. It didn’t stop me from entering buildings; it didn’t force my body to stop breathing voluntarily or feel wretched pain. Despite the apparent lack of motivation, I met friends and tried to socialise, I did my grocery shopping and cleaned the house. depression asked for a chemical re-balance in my brain and depression left my body without significant medical or surgical intervention.

Because of the physical harshness on the body, MS degenerates and eats away at the neurological makeup in the brain, spinal cord or optic nerves. Because of this, it robs people of being able to go out on their own two feet. It makes them sit in a dark room because their eyes hurt. It won’t allow people in wheelchairs to enter buildings anyone else can access without any hassle.

MS aside, #Cancer can return and eventually claim a life.

Motor Neuron Disease (ALS) can rob someone’s last breath.

A baby can pass away from #SuddenInfantDeathSyndrome.

Any illness, mentally or physically, is a cowardly act. We all agonise over it in our own way, and we all try to get healthy as quickly as possible in our distinct way. I leave my brain to the experts and know that they are at the top of their game and that they will do anything to help me live as best as I possibly can.

So, when someone says “How can you be so optimistic and happy all the time despite the illness you’re living with?” I look at a picture of my late brother who passed away age 36, and I realise that I am living the best as I can.

That, and this realisation: we only have one life and no matter what kind of illness you have, just try to enjoy it as much as you can.

Humans are complicated creatures and our #MentalHealth is

shaped by many factors both in childhood and adult life. For me, suffering from

BPD and OCD, it is easy for anyone looking back at my childhood and adolescence

to join the dots and see why I developed mental illnesses. It’s been helpful

for me to explore the reasons and work through them in therapy.

1.

My brother dying

I read a lot about people with BPD having suffered trauma in

their childhoods, particularly up to the age of 3. For me, the traumatic event

was the death of my baby brother. I was 2 years and 9 months old when Andrew

was born, and just over 3 years old when he died at the age of 3 months. My

parents were celebrating my 3rd birthday, and just 2 weeks later

they were mourning my brother and planning a funeral. No parent should have to

go through that. Because I was so young, I don’t remember the event at all- I

don’t even remember Andrew. I wish I did. But I’ve been thinking about him a

lot lately and I can imagine how confusing it must have been for a 3 year old

when my baby brother suddenly disappeared. My parents don’t really talk about

him at all. I know that he died from cot death- or #SuddenInfantDeathSyndrome

(SIDS), as it’s now called. Recently I did a run to raise money for a SIDS

charity and my parents sponsored me. It gave me the opportunity to ask them

some questions about him (over text message). They told me his date of birth,

his date of death and where he was cremated. They also told me that I didn’t

attend the funeral. I got in touch with the crematorium and a few months ago I

went to visit for the first time. I cried a lot but I think it was good for me.

I plan to go back next year on the anniversary of his death as I will see his

entry in the remembrance book- I’ve seen it on their website but would like to

see it properly. I also want to take flowers, and on the same day I’m going to

get a tattoo with his initials in a star. I also asked my parents a few months

ago if I could look at some childhood photos- they gave me a massive box full

of photos to look through, and right at the bottom I found some photos of

Andrew, including several family snaps of my parents, me and Andrew. Seeing

them was emotional but I am glad I saw them. I still have more questions- I’d

particularly like to know what my parents told me when he died, and whether I

was there when it all happened- but I know my parents are reluctant to talk

about him and I don’t want to upset them. My therapist says that I am entitled

to know the answers and that I won’t cause hurt, because the hurt is already

there, but I haven’t yet been brave enough to ask those questions. My fear of

abandonment which is part of my could have been cause by Andrew’s death, or

it could have resulted from my parents’ emotional abandonment of me after his

death.

2.

My parents

I don’t resent my parents. I am writing this under a false

name as I wouldn’t want them to see this or for anyone they know to see it and

think badly of them. I know they tried their best with me, and they didn’t mean

to cause me problems. They were grieving after Andrew’s death and I can’t

imagine the pain that caused them. I think of them showing him off to family

and friends, thinking of how he would grow up and what he would be like as an

adult- but they never got that chance to find out. It’s obvious that they’ve

never really dealt with his death and prefer just to try and bury their

feelings. It’s just the way they are. But that did affect me.

They taught me that my feelings and emotions were not valid.

That I didn’t deserve attention. That I shouldn’t stand up for myself. To

expect perfection from myself. From a young age, I showed signs of

psychological distress, but my parents didn’t seem to want to pay attention to

those signs. I don’t actually remember much of my life before I was a teenager.

I think I blocked some of it out. My Dad used to hit me when I was naughty, but

that wasn’t unusual back when I was growing up and it wasn’t abuse. What was

damaging was the emotional neglect I feel I experienced. The things I do

remember include examples of that. The times they used to put me to bed and I’d

come out onto the landing and bang my head against the wall until they noticed

me. The time I tried to staple my fingers together in front of my mum. The time

I was scared at having something done to my teeth at the dentist and so I

cried, and I was told I was being naughty and that I wasn’t allowed to go

swimming. When I was a teenager I began to experience seizures. I only had 5 of

them and tests I had said I didn’t have #Epilepsy. I’ve since discovered that

they were probably psychogenic- there was probably nothing wrong with me, but

my brain was trying to tell me and people around me that something was wrong. I

remember being sat on the stairs crying as my grandmother told me my Mum had

been such a happy child. I remember trying to talk to my parents in the evening

and being ignored as they would rather watch TV. I remember the one time I

shouted at my Dad and he scared me so much with his reaction that I never dared

to challenge him, or anyone else, again. I remember telling my parents that I

had got a B on a particular test and Dad replying ‘I thought you were good at

that subject’.

As a child and teenager I was ironically terrified to be

away from my parents. Even at University I came home every weekend, too scared

to make any friends. As an adult I developed anorexia and the first signs of

OCD and , although I wasn’t diagnosed until years later. I got help for my

anorexia and I know from reading my doctor’s notes that my parents were really

worried about me. But they didn’t show it, instead they just got angry with me

for refusing to eat. When I had moved out to live with a friend, I once took a

small overdose which made me sick. I told my mum and she just said I shouldn’t

have done it, but it was never mentioned again. I had a true life story about

being gay and suicidal published in a magazine. I showed it to Mum and asked

what she thought. There was mention of my #Selfharm and suicidal feelings but

her only response was ‘what if someone we know reads it?’

Now I’ve grown up and am married, we don’t have that much

contact. I know that my mum talks to my brother (born just over a year after

Andrew’s death) almost every day, but we rarely talk. I know my parents and my

brother are both very closed people and have trouble relating to me as I talk

about my illnesses a lot and go to therapy. I know they love me, but they never

say it. Even at my wedding, my dad’s speech was very factual with little

emotion. When I was signed off work last year with they just laughed when I

tried to explain it, and told me I shouldn’t take time off work as it looks bad

and I might get fired. When I had the flu last Christmas I also got laughed at

and told I couldn’t possibly have the flu. Sometimes I mention personal things

in text messages and usually don’t get a reply to those or they change the

subject. Dad made a disparaging comment last year about me mentioning my on

Facebook. I suspect they’ve never even looked into and what it means for me

and they’ve certainly never asked me about it. When I was first diagnosed with

it I texted Mum to tell her, she said she didn’t know what that was, I

explained and I just never got a reply. Recently at work I was promised a

certain new role and then told actually I didn’t have it. When I told my

parents about it I was just advised ‘don’t make a fuss’.

My parents are quite well off and have always tried to show

they love me by giving me money or buying me things. Which is great, but I’d

rather have the attention, the validation, the love, from them.

3.

Moving house

When I was 13, my parents moved us a few hours away to a new

place as Dad’s job had changed. I understand that we had to move because of

that, but I was terrified at the thought. As usual, there was no asking me to

talk about how I was feeling, instead my brother and I were given a portable

games console. I was expected to start at my new school the day after we moved.

I had two really good friends at my previous school and I didn’t want to leave

them. At the new school, I was assigned a girl to look after me. She was

perfectly nice, but she had a very large group of friends. At break and

lunchtimes they would all get together and talk. I went with them, but I now

suspect that I was suffering from #SocialAnxiety at that age. I literally never

spoke to them, I sat there and didn’t say a word. I tried to think of things to

say but in my head they sounded stupid and I worried they would laugh at me, so

I stayed quiet. Needless to say they weren’t really happy about having someone

hanging out with them who didn’t talk. I got invited to a party at one of their

houses one weekend but I heard there would be alcohol there and I was too

scared to go. It was a couple of years before I made a proper friend at my new

school. The whole episode really dented my confidence. And my parents knew that

I was unhappy but they didn’t really talk to me about it.

4.

My sexuality

Growing up gay in the 1990s was difficult. I didn’t even

know myself that I was gay until my early 20s after having dated both sexes. I

initially told my parents at the age of 22 that I was bisexual. I think I was

kidding myself trying to stay half ‘normal’. I finally realised after my second

relationship with a man. Tom and I were great friends before and even after the

relationship, and we got on so well and had so much in common. But I began to

miss women and freaked out at the thought of never being with a woman again.

After that I felt that if I couldn’t make it work with Tom, I was probably actually

gay. I was a teenager when I first remember having crushes on other girls.

There were a couple of famous ones on TV and then a prolonged attraction to a

woman on my university course. I never told anyone back then. I was too afraid

of judgement from my parents and other people, of being teased. It wasn’t until

my early 20s when I met other gay or bi friends online that I allowed myself to

explore that aspect of me. Repressing it for so long and the whole coming out

process definitely affected my mental health. My parents weren’t thrilled and

obviously hoped it was just a phase, but they did come to accept it. It took me

a while to accept it too, but eventually I did.