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This sickness unto death

This is the first time that I have gone onto a forum to say such things, but I feel so terribly isolated and alone right now. I have had MS diagnosed since 2011 and it has been a disease that has been pretty constant in my life ever since.

I have tried and tried to get on with my life since diagnosis - I have even written two books and run a company - but the creeping nature of this illness, the tiny things it takes away, has begun to wear into me, as if I was an ancient river bank whose sides are slowly collapsing under the never-ending flow of the stream.

What is our best response to this deeply personal and private tragedy that has entered our lives? We sit there and, perhaps for many, the best option has been that of silence - not to worry our families or our loved ones. Not, in the end, wanting to be seen as different or disabled. So we suck in our breath and get on with it, and no one out there but us knows how hard it is to get up in the morning, to walk to the shops, to answer nagging emails, to socialise. And then the memory lapses, the sudden tremors, the hidden humiliations in the bathroom… they mount and they mount until they break the will.

I was in the kitchen the other day and I found myself clutching the side of my face, my mouth open, screaming silently and wordlessly. Like the Munch painting. And I realised that this was my life now - a private hell and a painfully lonely one.

My MS is unusual. I have no brain lesions. Just one on my spine. My OCBs disappeared between my first lumbar puncture and the second. I have normal neurofilament levels. I can still walk 20,000 steps in a day, when the black dog isn’t there. But I feel that things are sliding and ending, and I don’t know who to turn to. I fear that if my illness is too spoken of, I will lose the love of those closest to me.

So I decided to come onto this forum to speak of the solitude of our condition. The terror of forgetting things. The endless pins and needles. The pain that creeps alongside us like a sinister shadow. The slow erosions of our identity, our sense of freedom. The foreshortenings that occur everywhere, at every turn.

So, please, scream with me in our silence. Tell me I am not alone in this moment of sadness. For I don’t need the advice of optimism - I don’t need to be told that everything will be alright (because how do you know). I need to be told that you are out there too, silent and sad, frightened and fragile. And perhaps there will be comfort in the knowing… knowing that we are walking our paths together alone, but joined in the deepest of human emotions: that of fear, of pain, of the slow sickness unto death.

This is my grief. Please do not diminish it, for it is your grief too.

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Kierkegaard. A sickness unto death. Refers I believe to despair. You are not alone, you don’t need to suffer in silence. Why make it a private tragedy? It affects our families, our loved ones our children. They see us usffering or trying and failing to cope and you know what? In the main, they want to help, to be let in.

Don’t push people away, don’t scream alone. Shout at God, talk to those closest to you. If you feel shite, tell em. Theres no shame in it.

It won’t be alright. It will however become the new normal, and you will and can learn to live with it. You say you wrote 2 books and run a company so you are obviously a strong and skilled person. Learn to love yourself for who you are NOW.

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These are kind words - and ones that brought me to tears. I fear this new norm - the shift from being strong and skilled to… something else. And worried that those who loved me for my strength will not when they see my weakness.

In your eloquent piece you ask what the best response is to this tragedy. You have answered that question with two responses, silence and not wanting to be seen as different. Are you referring to yourself? Is this your modus operandi? If so it doesn’t seem to be working very well for you.

Having suppressed how you feel for several years the hidden part of you finally managed to express itself with that silent scream. You have been trying to get on with life as it was before you were diagnosed. You might as well have been trying to carry on being a human after you had been changed into a beetle overnight.

"I cannot make anyone understand what is happening inside me. I cannot even explain it to myself.”
― Franz Kafka, The Metamorphosis

But, unlike the man in Metamorphosis who was transformed into a giant insect, you are not alone. Your hell is not so private. There are about 100,000 other people, it his country alone, who are also screaming, in their own way, at this outrage.

If you read through the posts on this Forum you can follow the way in which a few of those 100,000 scream out their fury and indignation at this trespasser. We are all screaming in 100,000 different ways. Some of us have found that the people we loved and trusted could not cope with us and our disease. They claim that this wasn’t what they signed up for. Others have found that their relationship has been strengthened by sharing their fears and dread.

You speak of the physical pain and the anxiety about loss of freedom. There is no pain like a man who believes he is alone in his pain. The question is, How alone do you want to be?

Welcome to our world. You have nothing to lose but your chains.

Yours,

Anthony

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You’re certainly not alone in this. Can’t give any useful advice, but you’re not alone in this Damned Malarkey… talk to us if you don’t want to bother anyone else with it, and know that we will understand a bit more than yer average Joe who doesn’t deal with it every day, and we won’t judge.

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Very well put piece and i have every empathy with your feelings and MS - I too have done 20,000 steps in a day (shattered afterwards) but the hidden monster of MS that thrives inside me in the form of depression and pins & needles plus loss of function is heartbreaking - your piece helped me - same boat kinda thing…

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hi danteschains

that’s a user name that conjures up Munsch’s Scream.

you need human contact.

nobody knows what tomorrow could bring for anybody.

talk to your family, emphasis how hard it has been to tell them how you feel.

this makes you strong, stronger than ever at a time when you feel weak.

accept the world into your life/hell.

it is like being mugged and robbed except there is nobody for the police to arrest.

we all feel/have felt your pain.

don’t expect to achieve it all at once.

be gentle with yourself.

i tend to wander about cursing quietly but not silently.

when my family hear me, i say “not you - me”

(so basically i’m a f…ng b…rd t…t!)

stand tall because there is a lot to be proud of.

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Thank you for giving a voice to shared pain with such eloquence.

Alison

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It is my grief too. You have expressed it so perfectly. I scream too.

You and all the other writers who grieve for what we have lost have almost brought me to tears, danteschains, Reddivine, Anthony, Carole, and everyone else. We are together in our solitude and silence.

Sue

danteschains speaks for the many, not the few.

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Sometimes I cry in the shower where tears can’t be seen. I hide under the duvet from the unseen monsters. Pain is a friend. Comfort an aquaintaince once known rarely seen these days. I live today because tomorrow is too scary. A fragile butterfly I once flew free but am now in a cage. X All of the above is a closely guarded secret but we are amongst friends here x

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sue, i’m silent sometimes but then i do my death metal growl!!

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Thank you. Yes. We are transformed almost overnight, at least in our own being, and slowly (quickly) in our bodies. What we thought we were, could be, will be all altered in some way. This transformation can never be understood by those who seek to treat us, and not by family members who learned to love and accept us as the person we were (and not the person we might become). In my own writing if has given me a greater empathy with those whose lives are changed overnight. Ours was, theirs have been. That bitter pill of change.

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Hi Danteschains,

So sorry you’ve had to join us. Non of us want to be in this forum but it’s the medical condition we’ve been given and this site gives us a place to scream, a place to get advice, a place to talk to people who are going through the same symptoms, anguish, dilemmas and uncertainty.

You wrote a very strong, honest and passionate post and I think a lot of people feel like you.

I too hide my fears and symptoms from everyone even my family. My progression is recorded in a little black book.

My mantra is carpe diem - sieze the day.

Jen

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If you can still walk 20000 steps a day, why not put some of this strength in a mental form, and go forward a step further each day, answer your mails, calls, and be the real you. If you let m.s engross your mind your letting it win, and if it does you’ve let it do that yourself.

Folks who love you, love you for who you are. So strength was part of that - but it is not the whole you and if you COMMUNICATE with loved ones, you will find they love you even as you change.

Possibly you may benefit from counselling as well? If you are feeing fragile mentally/emotionally?

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danteschains

Thank you for articulating your feelings in such eloquent terms. I wish I could express myself half as well. Feeling lonely and being alone are vastly different. As you can tell from the responses above you are clearly not alone in trying to deal with the many difficulties resulting from this condition. I find it very useful as well as reassuring to come here to read people’s varied experiences and strategies.

Thanks again and I hope that you derive some benefit from visiting this great community.

Mick

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Hi, I have started to experience symtoms in my early 20s, and eventually got diadnosed with progressive ms, which basically means, I won’t get to feel better like most of you, its just a gradual progression. Im now 29, and I can tell you its been a harendous life so far. I used to be very atletic, advaterous, social, competative. Now I use an elbow crutch to walk and walk on average 3000 steps per day. I dont have a job, no social life, no partner, just my mum that helps me out everyday. So this piece of sh*it of a disease stole my life, completely turned it upside down, and its getting worse and worse and worse, im not sure If im going to make it to 40 without a wheelchair. Its a scary thought of being on a wheelchair, but at least you won’t be struggling to walk. My brain is still in a good working order, but my body is slowly giving up, legs, arms, face etc. I play electric guitar for years and instead of getting better im getting worse because of the stiffness in my arms, imagine how that feels ? Unlike for people with RRMS there is no medication to help me with my type of ms, so bacisally adanboned and left for dead. As you can see im a lot worse than you and the most. hopefully that made you feel better :slight_smile: I feel more posivite at the present, I started education again, Im getting a car soon, so the life should be a bit easier :slight_smile:

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I hear you unequivocally Danteschains. Since becoming a FT wheelchair user at 40 a couple of years ago, I have basically been mired in the most unspeakable, seemingly endless grief - and 99% of the time suffered it in silence. Not even sure how to articulate it to myself - let alone anyone else. So much of the basic functionality the vast majority of human beings take for granted have been ripped from me never to return. I’m incontinent, impotent, can no longer walk more than five or so steps. 7/10 on the EDSS scale. It’s beyond surreal. Whilst not in any way denigrating your experience, being completely honest, If I could still occasionally walk 20,000 steps, i’d feel like the luckiest person alive. On days like yesterday and today, everything feels pointless, hopeless. Trust me, for what it’s worth, you are very much not alone.

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Therein lies the rub…

I know there are people who would willingly knaw their own limbs off to be as healthy and lucky as me, however this does not stop me from feeling cheated and massively hacked off about my situation on occasion.

Knowing that it is all relative does not help.

The best I can do is to be aware of my situation and try to appreciate how others might be feeling.

We are all dealing with various levels of crap.

Mick

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