Mental health issues
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Depression and Disability

RobsRobs Member Posts: 49 Courageous
edited September 2016 in Mental health issues
Depression with disabilities is, in my experience almost inevitable.  It is rarely considered by our GP's  or NHS professionals in general.  l spent about 15 months in a rehabilitation hospital where my mental health was given the same importance as my physical health.

To this end l give an a brief iatrogenic of my own journey over the last 16 years.

l am a disabled person, having had an 18.5 hour surgery for Scheuermanns Decease. My twisted spine has been re built with titanium rods, my left ribs replaced with titanium mesh as has part of my pelivis. l have no articulation of the spine and am 60% weak down my left side.

l get depressed (l am sure most disabled people do), but l am not continously depressed far from it. l have good weeks, bad weeks and very bad episodes of depression. 

Petty Illnesses acompany my depressive bouts.  My body becomes a burden, my Immune system fails me. My bowls go haywire,  my teeth ache, my skin irupts, cracks and bleeds. l turn a greyish colour when l am very down. lt's all physical, all extra pain. There are no merits in all of this, no good comes of it. Happy days.

My senses become overloaded l feel uncomfortable and often disgusting.  My body is telling me l am ill. My senses become overloaded and my mind is full of unwanted sounds, images and memories. I take oramorph and gradually sleep follows. l wish there were a pill that would make me sleep (without dreams) for a week.

After a week or so, l know l have to fight it, it's not a simple case of pulling my socks up, or getting a grip, or any of the other stupid and pointless platitudes.  lt's a much quieter,  grimmer struggle than that.

l have to fight this awful condition, my children and grandchildren help enormously.  And gradually l crawl back towards the light.

Take care Rob.

Replies

  • JudomandeanJudomandean Member Posts: 50 Courageous
    I agree Rob, in my experience unfortunately disability and depression can and often do go "hand in hand"  for me it was the frustration of a high profile High Court case for compensation and loosing on a point of law which took me to my lowest eb, for others if can anything else BUT suffice to say physically disabled folk are NOT being watched for signs of depression, which is a scandal.
  • Chris_AlumniChris_Alumni Scope alumni Posts: 695 Pioneering
    HI Rob, sorry to hear of your struggles with depression. It sounds like you've got some good support from your family, and I would also add that it's worth investigating the support that mental health charities like Mind and Rethink Mental Illness have to offer. For anything disability-related, the free Scope helpline is of course always there on 0808 800 8333.
  • bambam Member Posts: 331 Pioneering
    Hello Rob I think if your disabled only naturally you're going to suffer from some kind of depression. I'm sorry to hear you have had so many health issues. Wow an18.5 hour surgery. that is a long long time. I hope you're feeling good right now.
  • RobsRobs Member Posts: 49 Courageous
    Hi Bam

    l am okayish right now thanks. My mental health is good, but  l had a cataract op on Tuesday,  so my eye is sore. The BBC filmed my operation, for their One Live programme.  

    When my DLA was cancelled and l was invited to apply for PIP, my Surgeon sent a CD of the operation and what he said was a "Stinging letter" as a result l was not required to attend a medical and was awarded the enchanced of both components,  but they said l will get a phone call in 2026.

    Hope you are okay and keeping on keeping on.

    Cheers Rob
  • bambam Member Posts: 331 Pioneering
    Did you ever watch your surgery. I have MS and my MS is a little on the Wild Side. I just haven't been feeling very well the last few days.
  • JoanneMontgomeryJoanneMontgomery Member Posts: 9 Connected
    Hi Rob,  Thank you for sharing your story with us.  I think you would have to be a super human to not become depressed when you suddenly become disabled and your whole life is turned upside down!  Or if you have spent a lifetime battering a condition you were born with.  It is often overlooked by our g.p's and consultants. Well done all those people out there who make that long slog back from the worst times.  You are all hero's.  
  • RobsRobs Member Posts: 49 Courageous
    edited September 2016
    Hi Bam

    Sorry to hear you are going through a difficult period, when l was in rehabilitation hospital, there was a number of patients with MS and l know you will have good and bad periods. l hope it will settle down for you soon.

    To answer your question, l did watch the surgery with my surgeon's.  l was surprised how agricultural the early part of the surgery was. They made Anterior, Posterior and Lateral cuts (Down my back and front and joined them together with a cut from my back to the front cuts) they used a hammer and chisel to re shape each vertebrae and a bolt cutter to remove all the ribs on my left side. They dislocated my left arm and tied it to my right arm round the back and put my heart and lungs on my chest. lt think the worst thing was that they woke me up every hour and ask me questions, like wiggle your toes, when were you born etc., this was to make sure they hadn't paralysed me ( in which case there was no point in carring on). But to see my heart and lungs moving up and down on my chest, huants me to this day. The removal of all the discs and screwing all the vertebrae together was a little hi tech. They minced up all the bone, discs etc., to use to fill the gaps. Then they screwed all the vertebrae together and fastened four titainium rods to my new shaped and solid spine. There was some jiggery pokery magic they permoformed and l woke up 18.5 hours later with an epidural in my neck to keep me paralised for the next three months (happy days).

    The language used by my doctors during that 18.5 hours was a little agricultural too.

    l hadn't realised the scale of the whole surgery, there were three orthepeadic surgeons, three anethitists and two neuro surgeon's working shifts.

    During the ensuing weeks l had dozens of visits from various nurses, radiologists etc., saying hi Rob, you won't know me, but l helped with your surgery. l owe a masiive debt of gratitude to Mr Marks and all the brilliant staff at the Royal Orthepeadic Hospital in Birmingham.

    Anyway Bam, sorry it's a long diatribe,  but is was a long two years.

    Take care Rob



  • RobsRobs Member Posts: 49 Courageous
    edited September 2016
  • RobsRobs Member Posts: 49 Courageous
    Thanks Joanne

    Actually,  l had been a rugby player and trained twice every day. l have never used alcohol in my life, l mention this only because life seems a bit unfair. 

    l considered myself a decent hard working bloke with five children and to have all that taken away in a couple of terrifying weeks makes me a little angry.

    It seems l was born with Scheuermans Decease, but it wasn't diagnosed until l was 38. l can't blame the doctors really, it is very rare, but was lucky to be referred to Mr Marks at the Royal Othepeadic Hospital in Birmingham.  l was at work the previous day and the following day, l was told l needed massive surgery or you will die soon.

    Life is a long and dusty road,
    With a hot and heavy load

    And folks you meet aren't always kind
    Some are bad,  some are good

    and some have done the best they could
    But l can't help but wonder where I'm bound. (Tom Paxton)

    Keep well Rob
  • bambam Member Posts: 331 Pioneering
    Thank you very much Rob. That's the problem with MS people don't understand that you're going to have good days and bad days. The good days are never great and the bad days are horrible. I'm sure everyone here knows that feeling. That surgery sounds intense. I've been in the hospital a few times because my MS and yes they would wake me up every 4 hours to check my blood pressure and my temperature. It got to the point that there was a few times that I barely woke up for them to take the blood pressure. Slept right through it.
  • RobsRobs Member Posts: 49 Courageous
    edited September 2016


    Bam this is a scan taken during the surgery. They had screwed all the vertebrae (as you can see) but titanium bars hadn't been inserted at this point. I don't think l could use this photo on my blue badge though haha.
  • bambam Member Posts: 331 Pioneering
    Hello Rob did you send me a link? I couldn't click on it.
  • RobsRobs Member Posts: 49 Courageous
    It didn't upload, but it has now, l changed it to a jpeg.
  • bambam Member Posts: 331 Pioneering
    That x-ray is intense and scary. I feel bad now for complaining about my MS to people. My doctors show me my MRIs to me all the time. I'm fascinated with the scans.
  • RobsRobs Member Posts: 49 Courageous
    I know how you feel my friend.  It seems everytime l have to go to hospital for a scan the doctor looks at me and says "what's Scheuermanns Decease" it not particularly inspiring when the doctors are asking me.

    Don't ever apologise for your condition, it's not our fault. l have dozens of MRI, CT and Dopler Ultrasound scans, as you say they are very intriguing. 

    But l often wonder what good will come out of all the investigations. Sometimes there can be six or ten students watching and asking questions.
  • bambam Member Posts: 331 Pioneering
    I go to a teaching Hospital. So, they bring in the new Young doctors to talk to me. My doctor will usually ask me if it's ok if they're in the room and I just say no. Yes, it's amazing to me too sometimes I will see a doctor and they'll tell me they know very little about MS. To be honest I've never heard of that disease. I have seen doctors and they would tell me they know very little about  MS . It doesn't seem very encouraging when your doctors never heard of your disease or know very little about it
  • RobsRobs Member Posts: 49 Courageous
    The Royal Othapeadic Hospital in Birmingham is where our injured soldiers from Afaghistan were air vacked into. l got to know some of them quite well and when l was transfered to The Royal Leamington Spa Rehabilitation Hospital, some of them came there too. l know the main MS consultant was a Neurological Surgeon and guess you see simular medics.

    They do not even learn about Scheuermanns Decease at med school because its so rare (1/30,000,000) so do not expect them to see a patient in their working lives.

    l found it quite amusing when the students were sent to see and examine me, in pairs. They measured scars, looked at scans, took notes etc., and some even whispered "what is your condition" l never told them.
  • bambam Member Posts: 331 Pioneering
    Not a lot of doctors no a lot about neurological diseases. That scan still looks really painful to me
  • RobsRobs Member Posts: 49 Courageous
    You're correct when you say not a lot of doctors know much about the workings of the brain, my Neurological Surgeon said as much. Regarding the scan looking painful, it is. consequently my main doctor is a pain management specialist.

    l remember one of the theatre technicians coming to remove the staples about a month after surgery. She was told by Mr Marks to remove a few staples, after she had been doing it for three hours, and had to count each one there were over 2,600 of them. l never felt anything as l had an epidural in my neck and was quite cheerful.

    l recently went to see an ENT specialist, when he scrolled down my file on the computor and came across some of the scans, he gasped and shouted OMG and suggested we share a pot of tea before he started the examination.  l must say he went briefly pale.

    l take quite a lot of pain medication from oramorph to oxycontin (better known as hill billy heroin)

    How apt are we poor to proud.
  • bambam Member Posts: 331 Pioneering
    LOL hillbilly heroin. That's what we call it to . There is a big problem in America with people abusing oxy
  • RobsRobs Member Posts: 49 Courageous
    I know its abused in the US. l was reading an article about pain meds on dotornet usa. They are now advocating that GPs should be allowed to prescribe canibis, l can't wait for a skunk cake on my monthly prescription. 
  • bambam Member Posts: 331 Pioneering
    In California where medical cannabis is legal. LOL it is extremely easy to get a prescription where I live for medical cannabis. I smoke medical marijuana but sadly enough I'm out and can't buy anymore until Saturday. I'm not really big on the edibles  however the Captain Crunch  ones are really good.We were just talking about pain meds. I just came back from the pharmacy picking up morphine which I really need right now. A lot of people will go to pain clinics and get prescriptions for Oxys and then turn around and sell them.
  • RobsRobs Member Posts: 49 Courageous
    Bam l have never tried cannabis in any form, but I'm all trying it , l remember Paul McCartney saying that it was less harmful than rum punch, that was after he had been arrested at JFK for processing cannabis. 

    The medical options in the UK vary, some say it causes paranoia, others say it's great for pain. I'm all for trying it tough.

    Actually, talking to my pain management consultant, his view is that pain control has not really progressed for over a hundred years, after all Morphine used to be a cure all in Victorian times sold as lordum. Oxycontin is only a refined version of Heroin and phosphate of codine has its origins in cannabis.

    I don't think pregabalin is any good, most of the hipnotics are heroin based in any case. However, l do know that a few of the MS sufferers say they benefit from the use of cannabis. So bring it on.
  • bambam Member Posts: 331 Pioneering
    A big hospital in the United States did an experiment to see if medical marijuana actually benefited patients. They found out medical marijuana only really benefited people with MS and epilepsy. Are you sure that it was Paul McCartney who got arrested at JFK. I heard it was John Lennon and John Lennon was convinced that Paul McCartney called the police and turned him in. I heard supposedly they got into a huge fight and didn't talk for a long time after that. In college I took a history of rock and roll class. Greatest college class ever.
  • RobsRobs Member Posts: 49 Courageous
    edited September 2016
    You could be right about John Lennon, but l do know Paul was done at some point. If Marijuana (Lady Jane) is found to be a benefit to MS suffers, it must be beneficial to me. l say that because drugs they keep offering me like Pregabalin, Gabapentin are used and formulated for epileptic patients. 

    Because l have a lot of nerve damage l am regarded as having an ABI (Acquired Brain Injury). So, the doctors keep trying to get me on these hipnotic drugs, but they just make me sleep.

    Personally l was never a hugh Beatle fan, and last time l was in New York, l bought every CD by Bob Dylan, Judy Collins, Joan Beaz and of course Woody Guthries (The Dust Bowl Ballads were never released in the UK) l could get my hands on. Happy days!
  • bambam Member Posts: 331 Pioneering
    I really love that kind of music. I Really Love Led Zeppelin. I wish I was alive during the British Invasion of America with music. Just great bands and great music
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