I am getting very stressed this week — Scope | Disability forum
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I am getting very stressed this week

Topkitten
Topkitten Community member Posts: 1,285 Pioneering
edited October 2017 in Mental health and wellbeing
I have become stressed about my meeting with a specialist on Friday. It is making it hard to sleep, hard to get anything done and I am tired and hardly sleeping. I feel so pressured that I have just this one attempt to try and convince the specialist that without this 'Experimental' surgery option I will be facing being housebound within a few years, especially as it will also mean another surgery at that time.

Why are we put in situations such as this, where we have to explain and justify our potentially disastrous situations to people who don't understand and, most likely, aren't interested anyway.

All this is on top of having to attend hospital which I am frightened of doing because of so many bad experiences over the last 5 years or so.

I really cannot figure out how I am going to cope.

TK
"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

Comments

  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello Top Kitten sorry you are going through this I know it is not easy these decisions.  I do understand this as I have many operations on my hands and now am struggling to do the simple things like doing up buttons and other such things.  I wonder if it is worthwhile having a look on the web to find out what this experimental surgery is about.  Just a suggestion.  You have been supportive and may I say wise comments you have given myself and others.  Nothing is easy is it as life plods on.  I had so much stress going into hospital myself that I had to say to family just let do this and leave me alone.  I do not need the constant harassment they give the staff especially my mother.  Who made the situation worse.  So with every time I went in made a diary for myself.  Wrote down all the positives and may I add the advantages of surgery.  How it would help me and benefits.  What could be the negatives and the disavantages.  Made plans after wards some thing to look forward to.  I used this for my feelings and emotions.  I know this is not easy.  I hope and pray that the surgery works out for your benefit.  That is another brief point in hospital they often have a chaplin.  One I believe the reassurance they give you is very supportive.  I have had problems with certain medical prodecures before they operated.  Talking to someone like this rested my mind.  Take care best wishes .  Hope any of this helps.
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    You're in my thoughts and I have everything crossed that things go the way you need them to, @Topkitten
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I saw the specialist and I am more confused that ever. Firstly it seems that the head of department is even more of an idiot than I thought he was. He told me long ago that my first fusion was C4/5. It wasn't it was C5/6. So if they fuse C6/7 there won't be one in between after all. Secondly it seems he misread the MRI. The new doctor showed it to me. Because it has taken so long the body has been trying to resole the problem itself by growing the bones together to fuse the disk itself. Whilst it isn't complete and would take a long time to be so it will most likely prevent them carrying out the surgery I am supposed to have. Had I not complained they would have opened me up for no reason at all.

    So now I have to go back to investigation. A CT Scan and Nerve Induction test must be done to see if it has been too long waiting and whether an operation will achieve anything.

    I guess I won't be laid up over xmas but will have to start waiting and trying to cope with the problems much longer.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    edited October 2017
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  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    edited December 2017
    Hello @Topkitten  just typical is it these doctors never get anything right.  So I hope things do go smoothly for you.  I hope and pray it works out.  I know the struggles you have endured.
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Ty both.

    I think I normally break most of those sleep rules, will be difficult to change that much. Will try one at a time I guess.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello@Topkitten I just wanted to say I have used these sleep rules and some of them apply most nights.  I have pain issues and do not sleep very well and even have everything from night frights to sleepwalking.  Especially coming into winter and need to adjust sleep patterns.  Heating in bedroom too hot or turn off tv an hour early always an issue.  As I age need to sleep earlier and get tired.  Diet changes worked for me anything like pulses or pasta evening meal more relaxed.  It is a trial and error medication also a bummer getting it right and taking it with food two hrs before bedtime.  I have warm milky drinks with honey or toast wholemeal with honey helps and aids sleep if I can not drop off.  Any changes are hard and it took me a while.  Best wishes 
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