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woodbine Community Co-Production Group Posts: 7,143 Disability Gamechanger
Every now and then I go through periods of depression, I become emotional, fed up, lack interest in everything etc etc. I know the cause, it's what happens when you have a chronic illness from which you know you will never recover and have had it for 23 years, something I do realise I am not on my own in on here. I try my very best to hide my depression from those around me and those I love.

I suppose it all came to a head yesterday when I was talking to my nurse about my mood and other stuff, I just broke down and she said John we'll stop here if you can't continue. 

I said no I need to talk about this. It didn't help, and as i already take meds for depression and low mood I didn't want any more (I take 19 different meds as it is). I have had counselling 3 times in recent years, the last time I got something out of it as I put something in.

I'm sorry to go on as I hate whinging, but actually just sharing this helps in some small way.
I was asked yesterday if I had thought recently about taking my own life, I said no because I have been down that road once before and I'm too much of a coward to try again.

Thanks for reading.
John x
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  • Oxonlady
    Oxonlady Member Posts: 459 Pioneering
    Hi @woodbine, sorry to hear about your low mood but actually I have experienced the same with chronic illnesses, so I do understand.
    Some illnesses, such as Parkinsons, cause chemical imbalance in the brain which leads to depression. Other illnesses can cause very low mood by the very fact that they are chronic and perhaps even degenerative. We lose some of our freedom, sometimes mobility deteriorates and often there is chronic pain. 
    It's understandable that restrictions and limitations are felt as impositions.
    I try to distract my mind with various things I enjoy, such as music or reading. Sometimes though the pain is overwhelming and I can't do anything apart from stay in bed. 
    I wish I could say something to make you feel better, John. I wish that you may find something that helps you. 
  • janer1967
    janer1967 Member Posts: 15,099 Disability Gamechanger
    Hi @woodbine

    Sorry to hear you are feeling low it is good you can talk.about it and opened up to your nurse as well as on here , that is often the hardest 

    It is good to let it out every now and again 

    I don't really suffer with depression but sometimes the reality of our disabilities hits us all.. 
    I have thought a lot recently about how my life has changed and compare it to what my life was like 5 years ago b4 all this started.  I suppose I grieve fir my old life 

    However I try think positive that it is now just a different life 

    You know we are always here for you even if it is just virtual 

    Keep talking don't bottle it up 

    Wishing you well 

  • lisathomas50
    lisathomas50 Member Posts: 5,498 Disability Gamechanger
    Hope you feel better about things soon I know how you feel glad you have the support 

  • Cher_Inactive
    Cher_Inactive Posts: 4,412

    Scope community team

    edited April 2021
    Hi @woodbine and thank you for sharing these private thoughts with us  <3

    I can relate to some of what you say and do think there's a bit of a gulf in services for people with chronic illnesses.  The focus (understandably) has been on the medical and treating the body to bring about periods of remission but missing from this picture is the mental impact of dealing with years of fluctuating wellness.  I know there are moves to bring about a focus on the psychological in services for IBD patients and I can imagine in the future this will happen for epilepsy services too - although I appreciate this is of little consolation at the present time!

    In the mean-time, It's good to know that you spoke about it with your nurse so openly.  You did exactly the right thing and I'm glad your last counselling sessions were helpful.  I think it might help to revisit those in your mind and in-particular the specific pointers that came out of them that made a difference.  Plus, don't be afraid of opening up to your loved ones as you have done us, I'm sure they'd want to know how you were feeling to help in their own way. 

    While I know you'll be no stranger to seeing us put these signposting links to others on the community, if you ever need them please do reach out.  For support with mental health, you can always contact: 
    And just to reinforce what others have said, look after yourself and know that your community friends and the team are always here if you need us.  Take care and I hope you have a nice relaxing Wednesday. 
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  • leeCal
    leeCal Member Posts: 5,076 Disability Gamechanger
    Sometimes a certain combination of drugs can make you feel emotional and depressed, but whatever the cause I hope you can feel a bit brighter today. Chin up old chap. ?

    “If you think you are too small to make a difference, try sleeping with a mosquito.”

    ― Dalai Lama XIV
  • NotReally
    NotReally Member Posts: 47 Courageous
    woodbine said:

    I suppose it all came to a head yesterday when I was talking to my nurse about my mood and other stuff, I just broke down and she said John we'll stop here if you can't continue. 

    I said no I need to talk about this.
    I feel you here; I've had the same experience many times, especially so over the last couple of weeks. 

    Hope you're doing a bit better today. If it helps, I tend to take the view that I've made it this far and I'm more clued up about both myself and life in general, so I can damn well make it the rest of the way.
  • woodbine
    woodbine Community Co-Production Group Posts: 7,143 Disability Gamechanger
    @NotReally i like that, i've made it through some really bad times and maybe it will get easier from here on? 
    My biggest issue if i'm honest is that I have this nagging feeling eating away at me that I've let my loved ones down, and I suppose I actually mourn what I have lost in the last 23 years.
    However thanks for all your kind words of support, you are all super stars !
    Be extra nice to new members.
  • Dragonslayer
    Dragonslayer Member Posts: 2,045 Pioneering
    Hi there. I hope this finds you well and in good spirts.
    I have experienced times like the ones you mention. I am also taking around the same amount of tablets you take. And I am undergoing many visits to nurses and hospital for intravenous drips, on top of that I find it hard to just walk. All of which goes' on seemingly forever. My biggest regret is how this affects my wife. Doe's it hold her back from doing certain things like traveling for instance. Of course it doe's and she certainly didn't sign up for all this.
    But what befalls us in life is a lottery, some of us believe we drew the short straw. It took me a long time to accept my condition but now I deal with it much better. I did this by talking to her about things and how it affects me and she now comes with me to my consultations  You are not letting anyone down, your condition, like mine is a part of who you are. Talking about it like you did by starting this is the first step down the road.
    Keep well and safe.
  • Tori_Scope
    Tori_Scope Posts: 8,170

    Scope community team

    Hi @Oxonlady :) Thanks for sharing your experiences, tips, and kind words to woodbine and other members. Sharing personal experiences can be difficult, but go a long way in helping others feel less alone, as well as hopefully being useful to you in terms of getting things off your chest. 

    We just wanted to pick up on your point about chemical imbalances causing mental illnesses such as depression. As Mind have outlined here on their page on the causes of depression:
    The human brain is extremely complicated. Because antidepressants work by changing brain chemistry, some people have assumed that depression is caused by changes in brain chemistry which are then 'corrected' by the drugs.

    But the evidence for this is very weak, and if changes to brain chemistry occur, we don't know whether these are the result of the depression or its cause.
    Many people with chronic conditions experience mental illness, including depression, for a range of reasons. If you're ever worried about your mood, you should always tell a medical professional, or someone you trust. 

    Thank you for sharing this with us @woodbine :) I'm sure it'll help others to feel less alone. You're certainly not whinging, so please remember that we're here if you need us. 
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  • woodbine
    woodbine Community Co-Production Group Posts: 7,143 Disability Gamechanger
    I was hoping I might have "bounced" back after a couple of days, sadly this has not been the case and i'm feeling really bad today, can't put my finger on why which isn't unusual when I become depressed, it tends to last for as long as it takes for me to as my mum would say "pull myself together".
    I'll get there hopefully but this time seems to be hitting me really hard.
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  • janer1967
    janer1967 Member Posts: 15,099 Disability Gamechanger
    Sorry @woodbine it could be the effect lockdown is having as well not seeing friends and family 

    Hopefully as it lifts you can see more of those close to you 

    Take care you can get through this take time to do things you enjoy 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    edited April 2021
    Hi @Tori_Scope -  I've looked at Mind's article, from which you gave a partial quote, & note at the end that references are available on request. So instead I looked online, &, for any that might be interested, I found these medical papers:  for any that watch the first following video, please note the mention of astrocytes (somewhat refuting Mind's article).
    The latter reminded me of a post I did last year after attending the American Syringomelia & Chiari Alliance Project's virtual conference, where one of the lectures was about the Gut-brain axis. Please see:  which mentions amongst other disorders depression.
    @woodbine, & hopefully others, if you can spare 30 min, I feel it's well worth a watch for it's knowledge, & insight.
    Please also watch this video (with apologies for the mention of Chiari 1 Malformation & Ehlers-Danlos Syndrome) but if you watch it right through to the end, it would be another 30 mins of your life well spent, & I feel is also relevant. Please see:
  • lisathomas50
    lisathomas50 Member Posts: 5,498 Disability Gamechanger
    My depression can be caused by lupus it just happens for no reason but when I have a reason to feel depressed my lupus then also kicks in so doesn't help which is why I ended up where I was but hopefuly comeing back slowly 


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