I can't share this feeling on my online journal, or with my other online friends, and definitely can't share this with my loved ones face to face. So I can share it here.
A month ago, my blood pressure dropped fatally low. It had done so in my sleep. My boyfriend, noting how pale, cold, and unresponsive I'd become in the night, had called 911 and was told that had he not done that, I would have **died**. It put a rightful scare in me. I was also surprised to find that through that scare and the gratitude at being saved was twisted a small feeling of resentment.
Things had been going so poorly - and still continue to be poor, eight months after diagnosis and endless hospital admissions (I've spent well over two months total sitting in hospital beds). Technically things are "improving", in that my kidney numbers and nausea symptoms are improving greatly, but it has not translated into a Happy, Healthy Quirkytizzy yet.
I am tired of feeling so unwell, so consumed by feelings of anger, confusion, and sorrow. I would have considered it a blessing to pass away in my sleep, even as young as I am at 35.
And while I am grateful - terrified and grateful - to have gotten a literal second chance at life, a part of me resents my boyfriend for having saved my life. Saved my life for what? For years more of this endless treatment where the cures are worse than the disease? For decades more of dealing with people rolling their eyes when I have to spend yet ANOTHER day in bed, all day?
I don't know how to deal with this resentment. I am so grateful to be alive, but at the same time, a small part of me wishes he had not called 911. At least I would have gone peacefully.
Has anyone ever felt anything like this? I understand just how selfish it is for me to feel this way, but I feel what I feel. In true honesty, I would not have wanted to die.
But if I'm being honest, a part of me would have welcomed it.
Am I alone in this feeling????
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quirkytizzy
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14 Replies
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I am so sorry you feel this way but I understand. Or rather I don't because I've never felt this way myself but enough has happened in my life that I can understand how a person could feel this way. I spent a lot of 2015 in a hospital bed and it was just an awful year.
But things do change. Hormones come along, old friends are replaced by new friends, symptoms come and go - some old ones go while new ones arrive. But the thing that really matters most to me is being loved and not being entirely alone. You have a boyfriend who loves you enough to be aware that things were critical even in the middle of the night.
So don't fight your conflicting feelings - these don't have to be rational or even fair. But try to put them in context and imagine how your boyfriend must be feeling to have nearly lost you?
And just be aware that you are loved and that's a good reason to find hope that things will change and they probably will improve. 8 months isn't long at all - far too soon to be over the shock of diagnosis but also far too early to be writing your life off. There is so much to live for and Lupus treatments are very effective now. It may take time for the improvements to be clearly noticeable but I'm sure there's much joy to be had for you still.
In my experience autoimmune disease symptoms come and go and nothing stays the same forever. It may take a while for your mind/ feelings and sense of profound unwellness to catch up with your physical improvements as the meds start to work. Hang in there. Don't despair.
If possible please tell your GP how you are feeling and ask to be referred for some counselling - this certainly helped me when I got very low about the medicalisation of my life.
I really suggest some counseling - from some very experienced with chronic illness. I lost my 50's to Lupus & now almost into my 60's I'm effectively 75. It sucks really badly. You can find a path through it all though. It will take a few years most likely but there will be many years afterwards when you really 'live' the life you have. Best Wishes to you. Kaz xx
Hello QT, I'm sure you are not alone in that feeling. Although I haven't experienced it as intensely as you describe, I frequently find myself wondering about whether actually dying would be *so* bad.
Only yesterday, I was visited at home by my HR rep. She told me that I am now officially terminated (!), and no longer an employee. In the afternoon, I saw my GP and tried to enlist his support in taking a more proactive approach to my treatment than my rheumy is currently doing. Not only did he resist, but he (again!) suggested that my overwhelming daily fatigue might be a symptom of depression rather than part of a disease process...
So by bedtime last night, I was in a boiling stew of sadness at facing permanent redundancy and anger at feeling alone in my struggle to make a worthwhile life.
One thought that sometimes works for me at times like this goes:
" I'm gonna get maybe 65-70 years to experience this amazing, beautiful, terrible, loving, hateful, messy, painful, awesome universe. Then - whether I want it or not - it's all going to be taken away. So it's going to take more than a blinking illness/arsey GP/fever/whatever [insert current grief] to stop me squeezing every drop out of my time while I *am* here." Does that make any sense at all?
Aaanyways...this illness is [expletive deleted]. And it's a blinking miracle that we get out of bed at all sometimes. But you are not alone, and if we stick together, maybe we can get through it and find some good things on our journey. M x
Perhaps something to bring up with your GP and ask if you can have some counselling. It is understandable that you are mourning your lost health - and that death might seem a very welcome way out of the treadmill that is being ill. And you need some help to come to terms with it and how your life is and will be for a the next while.
For the moment try to hold on to the fact you have someone who obviously loves you - and he doesn't want you to leave him behind.
Amazing folks that have responded to your post, that for me gives me hope for all of us facing our own day to day downs and ups. I always wondered why I was here and fortunately I have found reasons why which keep me going, sometimes we cannot always see it, especially in our times of despair, sometimes like now you can connect/touch with others in ways you cannot imagine. Today, it was a simple pleasure working with someone young telling of their travels and their hopes for the future and then on my way home an amazing sunset over the sea, just made me smile and breath in a moment of happiness. Thank you for sharing, will be thinking about you and a big hug. ML
I feel your pain i also feel this way. My son found me after a stroke. I have been told if he didn't find me when he did I would have died. Now I'm left with pain weakness kidney failure and terrible memory.
I love my son but I wish most of the time he would never have found me.
No,. I am in a wretched situation for various reasons and all I want is death but I cannot abandon those who depend on me for their care, but when that is over I have plans....
No, you're not. It's grim. And it's caused a bit of friction between myself and the disabled community as, while I understand there may be a push to get people to 'opt out' rather than care for them, I do not fear death. I never have. But I really fear the slow, lingering decline - and for me fearing death means people often cling to life long after they should. But there you are.
Illness without treatment is pretty awful, and can make people feel like there is nothing worth living for. Especially in a society which places worth on how many hours you work, and how much money is in your bank account. Mental health science hasn't made many advances in decades and is incredibly overstretched; waiting lists span for months, and people have to make do in the interim. I've seen the wreckage that leaves behind. It's ugly.
I've felt that way more than once - especially when I have a tendency to look at the years that potentially stretch ahead of me. I have learned to stop looking into a future that hasn't happened yet, and to let go of the past which is long gone, and focus on the present. I know, that sounds so very easy. It isn't. It takes practice. But it's a work in progress; that is what 'practice' means. Take today: I'm currently sitting here with the cat I call Defective Cat sleep-melting off the arm of my chair. The other chair-arm has a homemade cappuccino - I indulged in one of those Nespresso machines, and it's a delight in a cup. I have my space heater on and warm socks on my feet. I have the first of my sown plants for the garden in UsHaus - tomatoes and peppers just putting out their first leaves. I had a chocolate muffin this morning because why the hell not.
And right now, life isn't so bad. The pain in my back fades into the background. The fact I once again slept until 9:30 am (because I seem to be doing nothing but sleep) isn't as much of an issue. I can give myself a pass for only getting laundry done right now - even though a part of my head is whispering at me I should get started on decluttering, gardening outside, cleaning the chicken coop, and probably discovering cold fusion because that's what Normal People Do (yeah, I know). It's not Dave o'Clock yet.
Right now, life is ok. Right now, life is good.
It's a simple thing, focussing on now. It seems pointless. But it's a redirection of what you notice, the little things that make beautiful moments - the moments that make life worth living. The moments that even people without pain, even people with lots of money and fame, even the successful people, completely miss. I call it cultivating the Arte of Doing Nothing; of just taking a really good look around and finding beauty, somewhere, anywhere.
It's not to feel smug or sanctimonious or new-age...it's a form of survival. For me, it works.
I share it as a different perspective. Maybe it will work for you.
I wish you hope. Sometimes, that is all we have.
Hi, Great to hear peoples responses and sad to hear how people feel about their situations. I will speak from two points of view. A fellow sufferer and a nurse.
As a patient I have not had a near death experience, but I have felt the desperation of the daily living of the illness and the burden we think we become. I am usually a positive person and try to put a positive spin on everything, however, I can fall into depression normally led by my physical status, Anaemia, hormones, thyroid levels etc and feel that its just not worth it. I spent an appointment with my GP this morning crying and was told that being emotional wouldn't help.
That said from a nursing perspective I feel you are suffering a form of post grief depression. This was near death. I believe the anger of the illness can take a physical form of your boyfriend now, as he saved you. You are not really angry with him but the situation. The reality of what happened is scary and the illness is to blame.
Please see you GP. Ask for counselling. Blame the illness and then prove it wrong.
One thing I think I have never been told was that being emotional wouldn't help - and a healthcare professional who says that needs a good smack. My GP was lovely when I sat there with tears running down my face - she just reassured me it would be OK eventually. And it has been.
Sometimes I'm embarrassed to be a health prof myself. Yesterday my daughter, who has always had weight issues (had extreme allergies and one time could only eat chicken and rice, so when she could eat did so to excess) was told by her "lifestyle" midwife that she had gained 4 kgs. She is 30 weeks. My daughter was pleased as she had gained 3 stone with her last pregnancy. The midwife was not as; it may cause her body image anxiety after the birth and more to the point the nurse has targets! Really. If this is what academic qualifications in healthcare does instead of life experience and social and practical skills, there needs to be a rethink.
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Gabapentin 
I am a 21 year old female, new to this site and have recently been diagnosed with Lupus. 
I am SO pleased to have found this site!!!! This is really long....and even if no-one reads it-I will just feel better for writing it down!
I'm on the long road of diagnosis
