Is there anyone out there who can share with me how they have coped with the mental breakdown of serious chronic disease ? Having a bad moment and thinking more about my 9mm. I won't do it, cause I think it's a cop out, but not having to deal with this situation is starting to seem like a really good idea.
It's 3;30am here and I'm awake cause my meds keep me awake. I'm crying because I think my asshat business partner and CEO is going to try and convince the board (again) that it would be a good idea to fire me since I'm a medical wreck and not working at full capacity. This is after I agreed to a half salary since I was sick. Keeping in mind that I started this company 6 years ago with my other partner, it breaks my heart that I could be fired from my own company. I considered if I could sue the bastard into oblivion, but, I don't really want to bring the company down- it would hurt the staff- especially my development team, who have been with me for so long that they are family to me. I wouldn't want to risk their livelihood or the dreams of possible success (in spite of the d*ckhead).
I'm looking at the end of the rope, because like many of you, my life is a mere shadow of what it once was. I can no longer do most of the things I could before diagnosis. Now, it doesn't seem like there's much point, watching days creep by, just shuttling back and forth from the clinic, feeling my body slowly (instead of quickly) destroy itself from long term steroids and other meds. the 9mm starting to look better than growing old, crippled and in near constant pain. Those of you who are worse off, unable to walk or have permanent kidney damage , forgive me. At the moment it is hard to see out of the well.
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grindhaus
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I’m terribly sorry for all your going through. You’re not alone— though being chronically ill can feel like a lonely business. A few weeks ago, I was feeling like I hit rock bottom. I suffer from GPA, yet no major organ involvement. My chief issue is chronic head pains and vertigo. A few weeks back I was hit with the worse vertigo yet; I spent the night on the bathroom floor after a bout of vomiting. I continue to feel “off balance” every day. Despite this, I still work full time and muddle through life as best I can. I see a nutritionist and on my last appointment (which was a few days after the horrible vertigo episode) she recommended I call the counseling center at work (I didn’t know it existed). I made the call and saw a therapist the following week. Just taking the steps, and then talking to someone who’s impartial and a professional was a god send. Like you, I wanted to end it all. I don’t own a gun, but was contemplating ways I could escape. The dark thoughts overwhelmed me. Family and friends are helpful, but not like an actual therapist. Have you sought counseling? Please seek help. Maybe legal advice too, re your work situation.
Thank you for replying, it helps just to hear a kind word. I have moderate EGPA, drug-induced remission.
I am amazed you are able to work even while dealing with the vertigo! Being nauseous is just the one of the worst things ever. I hope your docs find a way to address this, maybe a referral to an ENT (ear, nose and throat). My husband once had severe vertigo and went to see a recommended ENT. This doctor is great- he evaluated the problem and prescribed a sheet of daily head tilting exercises- lo, the dizziness went away- and it didn't require any meds.
I've seen a psychologist, and still seeing a psychiatrist. They both want me to take a course in mindfulness for chronic pain. Maybe that will help. But right now feeling so hopeless that it's very difficult to function. I've withdrawn from people and seldom go out (unless to the clinic), preferring to talk by text, email and chat. I can't concentrate on work. I feel distant from my husband. I've found it very difficult to talk to friends, they don't quite understand. My best friend recently suggested my pain was all in my head.
I'm sure this too, will pass. just wishing the 2 prescribed anti-depressants would work.
Oh, I get it. It’s really difficult trying to constantly explain what you’re going through, to friends, family, and spouse. I get tired of hearing myself. It is very isolating. And, that being said, im fortunate to have an extremely understanding spouse.
I didn’t want to drone on about myself in my first response to you. I see or have been seen, by a rheumatologist (2), ENT, pulmonologist, nephrologist, gastroenterologist, neurologist, and opthamologist— oh, and a physical therapist.
I’ve done the antidepressant route, and they can be helpful— tricky finding what works best. They can make you tired too.
I really hope you find strength in knowing many of us out here understand what it is you’re going through. 💕
Sorry to hear the way you are feeling and I know that at times it can feel hard to cope. I'm going to tell you of my wife's and my own experiences. Different medical conditions but how we coped and managed to overcome them. Firstly, it all started in 2004 when my wife had a heart attack, we lost her for about 4 minutes but she did recover and I became her carer. Then in 2009 she developed Atrial Fibrillation which still has. In 2012 she was diagnose with stomach cancer but with an operation to remove a polyp it. was revealed that it wasn't cancer but the doctors did discover that she had lung cancer and she had a double lobotomy removing most of her right lung. In 2017 she had an eschaemic stroke with a blood clot in her brain. Rapid first aid and excellent medical care meant that she has survived that to with an almost excellent recovery. Last year she was diagnosed with Hyperthyroidism which together with Atrial fibrillation can be detrimental to her heart condition but we're working on that.
In my case, I developed problems in my legs which meant I couldn't walk properly and eventually I had to take sick leave from my work for a year. In 2013 I was properly diagnosed with Rheumatoid vasculitis, with myocarditis and mono-neuritis multiplex. I was registered as being disabled. When I was in hospital I had to visit various clinics and was offered a porter to take me around to them in a wheel chair. Naturally I refused but he still came with me pushing an empty chair! I was walking a bit like Douglas Bader with tin legs but I was determined to walk. At that time, I coined a phrase in Latin, " Nos vivere sed Mori, sed non tamem," which translated means, " We live but to die, but not yet." It was being like one of the gladiators in Rome and epitomised how I felt at that time. I was determined to beat this disease which I now know is a bit like a dog, It's not just for Christmas but lifelong. We can and do bring it into remission but it is still with us.
In my case and my wife's we refuse to be be beaten we do things that we want to, we have travelled to Australia several times, we do garden visits, go to the theatre and visit museums. We do go for walks most days. I started the support group for vasculitis patients in London in my first year of diagnosis and am a trustee of the VasculitisUK charity. I even have sailed, helping to crew an old fashioned pilot cutter over a weekend. I have even learned to cook and have prepared meals for the producer of the Australian Masterchef series which got good acclaims.
There are many vasculitis patients like me, some even worse off than me depending on the type of vasculitis they are diagnosed with but they fight on and continue to do remarkable things. Some even run for charity fundraising for example. We all have skills that we can use to combat this disease and the conditions it can leave us with. We can do so with some moderation in our effort. We can challenge ourselves, doing things that we thought that we were not capable in doing but doing it anyway just for the sake of doing it.
So what I'm really saying is, don't let this disease get you down. You can and you will beat it! Never ever give in, especially to your darkest thoughts.
It seems like you have situational problems as well as your illness although they may not be as linked as you think. (no rhyme intended). You did not mention which of the many types of vasculitis you have. Clearly, you are angry and depressed. Ask yourself what, if any, medications you are on and research if any cause depression. Steroids , of course do in some of us.How long have you been on them? Any attempt at tapering? Dosage? How long have you been ill?
Speak to your loved ones about your problems, and I would strongly recommend seeing a psychologist or psychiatrist to get these feelings out; talk therapy is very good. Don't isolate yourself. If necessary, use social media sparingly to make some new friends; virtual or not.
What you are going through is "normal" under the circumstances. It would be helpful if we knew which illness you are dealing with.
You can see the end of the rope, but that you are reaching out on this site is a good step and a sign that you are not at the end of the rope. Be kind to yourself.
To every problem, there are solutions. I don't know your financial status; but if you can, take a leave of absence and get the therapy you need.
Look for humor; see a comedy; find distractions from your depressed feelings and know you are not alone. Write down your thoughts and describe your daily physical and emotional feelings.
Not knowing more about you, makes it hard to respond except in generalities; time will heal all; keep that in mind.
Join the " Well Being "part of this site and get rid of the 9mm immediately.
Steroids are indeed awful and rough on mental health for some of us, but they are life saving drugs too; maybe your dose needs adjustment.
Are you able to speak with your GP or consultant about your emotions? And if the inability to sleep is a problem, and night time is when the demons , come out, ask for a sleep remedy. You may not be getting enough sleep, which can make us all feel awful. And do a kind thing for someone else.
Keep us posted; people are here for you , and we do understand that you cannot just snap out of it; possibly hormones are at play as well, and that can be treated as well.
You are imagining a bad future. It is just imagining, not reality. Stop and smell the roses figuratively or in a florist shop. Give yourself a treat.
Chronic illnesses impact people physically, emotionally and mentally.
This is a lot to deal with if you don't have support. Your work worries are stressing you out too.
You should ask for help. Your GP could prescribe medication and suggest counseling groups in your area. I had a breakdown 14 months ago. I had symptoms that indicated my vasculitis may be back. The understanding of the term chronic hit me hard. Counseling helped me deal with it, understand it and accept it ( up to a point, but I am more positive now).
I hope you will seek help and that your black thoughts will be erased soon.
I don't know how long you have been ill, what type of illness you have and how it has affected you, but I am much better now, 4 years after diagnosis. I work full time now although many days I just go to bed after work.
Living with vasculitis is a rollercoaster of a life!
My heart goes out to you, and so sorry for what you are gong through. There is a light at the end of he tunnel.chronic illness and pain does change you , your relationships, work, social every part of your life.I have GPA i have gone through the vertigo, vomiting headaches etc. Everything that most of your replies have expressed.
i no longer work and live alone. I can tell you my Dr. referred me to a physical therapist who rest the crystals in my ears. i know it sounds odd. but it works. she showed me head and neck exercises to do. I can feel when i working up to a episode and do my exercise
it works and lasts about a year, then i need to go into therapist again and am good for another year Gettin that under control really helps get your emotions and depression.
You will get better and you will change, try to embrace the change, very difficult for us independent women. I have found i have learned a lot of things about my self and the life i live and have lived. i understand your family and friend do not get it! that is their problem not yours to try to get them too.
Take care of your self, Give this whole thing to God, illness, your business, and partner, how you are changing and everything. Rest don't beat your self up for not doing things you used to do. Rest,a positive attitude, and God.
Thank you so much, all of you who responded. It really does help to hear all your thoughts. What we all have in common here is an ongoing battle to live, to reach for some semblance of normalcy. I admire all of you who have continued on and achieved so much-- not letting your illness get in your way. It's inspiring to know that it's still possible.
After that horrible night, I just picked myself up and started working and staying busy. I didn't let myself dwell on the negatives. By afternoon I felt much better, at least I had a sense of greater calm and felt I had turned a corner. Your notes and kind words helped me not feel so alone.
Warning: long rambling disease summary to follow--
I have EGPA (churge-strauss), diagnosed a little more than 2 years ago, after a long year of puzzling illness, asthma flares and a tour of emergency departments. Things began to heat up when severe chest pain put me back in ER. They noted super-duper high eosinophil levels then. Eosinophilic pneumonia. I have nodules in my lungs seen on the CT. They gave me prednisone again, but not enough. 2 months later back in the ER with intense leg pains. I lost much of the sensation in my feet, but yet could feel intense pain. I couldn't stand or walk when I got to the ER. They took a tissue biopsy from my left calf, to confirm the proposed diagnosis by the attending specialist. My lungs, and legs were most affected, but a blast of prednisone quelled the onslaught of eosinophils in legs and nerves. After I got out of the hospital, I underwent a battery of scans and tests to rule out everything else. I know a lot about diagnostic tests now. I learned how to walk again properly, sort of, after several months of physical therapy. I still had an uncomfortable numbness in both lower legs and feet. It felt like walking on two stumps with pins and needles in the feet that I couldn't quite feel. I had a tendency to trip, not lifting my feet high enough. I fell on the stairs once and mangled my toes on the left foot. In the following years, I went up and down in strength and wellness. My steroid dose was hovering about 30mg, but tapering slowly. In spite of daily antibiotics, I still came down with a persistent chest cough. Up went the steroids... Got gastroenteritis twice (omg I thought I had never been. so sick and miserable my whole life)- both times back to the hospital. Found out I'm sort of sensitive to morphine (really bad anxiety attack).
Eventually tapered down to 8mg, then my Eosinophil gremlins came back- to stave off the flare I was prescribed 4 weeks of Rituximab infusions. On the first day, despite antihistamine protocols, I still had a bad reaction in 30min. Back to the ER- good thing it was next door- boy isn't this fun. I managed to get through the next 4 sessions, but I felt like zombie with flu symptoms most of the 4 weeks. And then, I felt a little better for a while, it wasn't the miracle cure I hoped for though.
My legs, lack of sensation, pain, has gotten a lot better, but is still with me daily. My biggest problem is the crushing fatigue. There are many days when I can't move from the bed, shaking with chills and sweats. My labs are holding steady, so my rheumy thinks everything is grand, I'm not feeling the elation yet though. My meds have apparently hammered my immune system into whimpering submission. (just don't get sick dont get sick dont get sick...)
For the med list, it's evolved over the years of course, but the current list includes:
Prednisone 10mg, Azathioprine 100mg, Advair 500/50, Flucatisone spray, pantoprazole, amlodipine, bupropion (wellbutrin), gabapentin (neurontin) 300mg, duloxetine (cymbalta), Vit C, Vit D, and B12. and 4 rounds of rituxan. I'm scheduled to have a maintenance round this Monday . I hope it improves my energy level. Labs are run every 6 weeks currently to watch things, make sure my liver doesn't collapse etc. When I thought about it, I've been on and off the steroids for most of my adult life to control the asthma.
Apologies for the long story- but it's sometimes interesting for us to be able to compare symptoms and experiences.
Thank you again, all of you for sending your thoughts and advice. This is the only place where I KNOW people will completely understand and share similar stories.
Thank you very much for detailed summary of your meds. I send you positive thoughts and wish you will be at 100% . Since EGPA is so rare the more information is out there hopefully it will help scientist to understand it better.
Hello Grindhaus, thanks for sharing the details of your situation and so sorry you have been feeling so low. I’ve been ill since 2016 & was diagnosed with GPA in 2017. It took a while to discover that high dose prednisolone makes me manic and last summer I got acutely suicidal. Reducing the dose immediately reduced the risk but has not yet eliminated it, even though I’m now down to 5mg. I have been monitored by mental health services ever since and got some counselling from this January. It has been hard, but helpful. One of the things it has been helpful to start to do is distinguish between the scary suicidal thoughts and my sadness about that this disease has done to me and my life. I couldn’t do that on my own, it’s too scary. So I really hope you get some good support soon. And I’m sure the rituximab will give you some energy back.
Please, please, please do not resort to that! I may not personally know your battles but I can certainly relate to the struggle of living with chronic illnesses. The fear you feel with every doctors appointment, the side effects from the medication and the constant worry about my future. This is no easy battle but you being here is a testament to resilience you've carried thus for. I find my comfort through faith. But if you are not religious, I hope you have friends or family who will continously support you. Stay Strong! x
Hello Grindhaus, I was interested to read your story.
All of the suggestions above are great.
One of the most beneficial things for me has been meditation. Shifting out of the yuk story into the space of peace and calm, behind the thoughts. Where everything is OK. No effort is required.
Suggest if you are interested YouTube
Rupert Spira and others.
I find listening to birdsong or anything else in nature combined with relaxation diaphragmatic (belly) breathing & chill music is useful. Get really close to your feelings and resistance will shift to allowance & softening. Pain will reduce and coping will be easier.
Don't give up pal been there nearly jumped off a bridge had to give up my business my goal now I've picked a piece of garden I'm gonna weed it then move along a bit more just slowly to keep me occupied you need something as for your business I had the same problem unfortunately until they are in the same position people think there's nothing wrong stay strong pal
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