Do I or Don't I

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  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Hi Topkitten how are things with you?
    Is your chair comfortable? How are you getting on with your carer?

    I've been too unwell to text much. Still not back to my "normal" self, such as it is! 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    @Topkitten I hope you are good today and got your sugar.  

    @Oxonlady Oh heck, I'm sorry.  Are you taking it easy?
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Hi Cher-Scope, I'm too restless a soul to take it easy, yesterday I went for a rest but my brain was too active, so I wrote a poem. It's a Christmas Carol, actually...
    I can't do much physically but I try to put my brain to work as much as possible!
    It's very kind of you to ask... 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    @Oxonlady Wow! Do we have another creative person amongst us?  :) That sounds very festive, well done you!

    I'm the same, my brain is always on the go.  It's nice to have a little project to concentrate on to avoid boredom and keep the cogs turning.  If ever you want to share some poetry with us I'd love to hear it.
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Cher_Scope, I'll let you into a little secret : I've already sent the lyrics to someone who composes music, in the hope that he'll be willing to set my Carol to music. If he does, hopefully we'll all hear it during the festive season!!! 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,452 Championing
    That's amazing @Oxonlady! I hope we get to hear it
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Thank you, Tori_Scope! Keeping my fingers crossed! 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Sounds exciting @Oxonlady! 
  • Topkitten
    Topkitten Online Community Member Posts: 1,275 Trailblazing
    edited September 2020
    Sorry @Oxonlady, @Tori_Scope and @Cher_Scope   for not replying, haven't been on so much and when I have it all seemed too difficult.

    The chair is ok but having to adapt as yet and the care is helping especially at the moment.

    Unfortunately last week my spine decided it was time to shift again. Initially it was ok but 2 days ago was a nightmare. After being up a few hours it was getting too hard to walk at all. I got through the day but then spent all night awake. Next morning got an hour or two sleep but then gradually got worse again. Today seemed a little better but I am out of ideas how to prolong walking and I am already way past anyone else like this trying to walk. I'm just too stubborn to give in, even to excessive pain. Pain killers are almost useless so I have just kept going regardless but there finally seems to be a limit to what even I can suffer.

    TK
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Sorry to hear this, Topkitten. 
    I'm glad having a carer is helping. Are you under any consultant for your spine? Though I find that it's not often you find an orthopaedic specialist or neurosurgeon willing to provide long term support. Personally I'd rather be treated by Professor Noel Fitzpatrick! He has more compassion towards his animal patients than any doctor I've come across...
    Would it help to cover your chair with a comfortable throw?
    Wishing you relief from pain and increased mobility. Take care. 
  • Topkitten
    Topkitten Online Community Member Posts: 1,275 Trailblazing
    I do appreciate the comments @Oxonlady and don't wish to prevent them but I am old enough and experienced enough to have already thought of almost everything anyone has ever suggested. I have also answered such comments before but, in the interests of being "nice" (I have always been called a "nice guy" and nothing infuriates me more, lol!) I will answer (again and again and... etc., lol!!!!!).

    I am not under any hospital department and most refuse referrals out of hand. It galls me at times that most hospital staff will protect doctor's reputations at the expense of a person's health but that's the way things are now. I am not allowed help, even with new problems such as a new Cervical rupture, by Orthopedics because their most Senior Consultant (Mr. not Dr.) made a big mistake. Currently no doctor in A&E ever wants to treat me and Orthopedics insist that any further treatment requires me to get a "Second opinion", to do so I would have to travel 60 odd miles under my own steam with no hospital support at all. Obviously (as they know very well) I am incapable of the trip let alone doing it without help. The Pain Clinic have refused the last 4 referrals and even the hospital "Pain Team" will no longer assist on the grounds that I am on the best medication options and "must manage the pain personally" (notice not even with GP support is mentioned). I have argued too long and too loudly and with far too much knowledge for any hospital department to want to treat me. What happens if something serious happens? A question I too would like to have answered. I have tried to complain about the lack of treatment but my GP is too useless and too incompetent to even try to support me against hospital wishes and the complaints departments for noth GP and Hospital simply ignore me and my requests. Short of sueing the different sets of people there is nothing I can do and I am not the type to want to do that. Basically I am refused surgery on a new rupture and also on an old rupture for which I waited on the surgical list for 3 years (2 separate stints) and added a 3rd time before the mistake was discovered and I was quickly removed from the list and discharged to cover up the mistake and now suffer as previously stated. As for the lower and different issue they haven't even managed to get the diagnosis right and simply do not understand what is going on. Evidently when I say unique I mean I have a one-off problem that no doctor, specialist or pain professional has ever heard of before.

    Sorry if this comes across wrong it's supposed to be tongue in cheek but it's almost 4am on yet another sleepless night (3rd this week) due to the pain refusing to settle enough for sleep.

    TK
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Hi Topkitten, I understand... 
    I was also talking for myself when I said about lack of support from the medical profession. So I do sympathise and I agree with everything you say, mistakes do get covered up. Even by the Health Ombudsman...
    Please let me know if there's anything I can do, even if it's discussing something completely different to take your mind off things. I'm also up all times in the night... 
    On the other hand, if you'd rather I didn't keep bothering you, please say, I'll understand. We each cope in our own way. 
  • Topkitten
    Topkitten Online Community Member Posts: 1,275 Trailblazing
    Np @Oxonlady, I just never remember who has read what, memory gone, lol!

    I don't get bothered and I'll talk to whoever wants to, I just no longer have much energy to go through all the issues over and over like I used to and tend to just pick a few threads here and there.

    I guess I miss some people out and don't help them as I maybe ought to but I just see so many of the same threads. Maybe someone with an encyclopedic memory could just divert people but, as I said, my memory has gone bye bye. :smile:

    As for alternative subjects...... I don't really do anything any more except play a few games and watch TV and post here now and again. That's about all my life sums up to now and it's shrinking.

    TK
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Have you managed to get a table for your laptop or are you still balancing it on your legs?

    One thing I can't do is play games, my co-ordination is not great. I can just about manage the odd board game at Christmas! 
  • Topkitten
    Topkitten Online Community Member Posts: 1,275 Trailblazing
    I have a table for over the chair @Oxonlady but I need another that will fit over the bed. Because I use a 4 foot double most don't fit. I could get one that might go under one side but the bed is unusual and only has a clearance of about an inch between the base and the floor and none of the tables I've seen state what clearance they need.

    TK
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Oh, I see what you mean, Topkitten. A 4-foot-long table would be too long and there's not much space for the base to go under the bed... You'd need something specially made, that would be expensive, I suppose.

    I hope you get to watch something enjoyable on TV today and get some sleep at some point. 
  • chiarieds
    chiarieds Online Community Member Posts: 16,672 Championing
    Hi @Topkitten - I wonder if you looked at the link I sent previously. Here's the info again:
    'Is a laptop rest for your bed worth considering? e.g. from Amazon:
    There's a customer's photo there showing his gaming laptop. This link will show you others to consider, or search for 'laptop rest for bed.''
    Perhaps something along these lines may help. :)

  • Topkitten
    Topkitten Online Community Member Posts: 1,275 Trailblazing
    I did manage finally to get some sleep @Oxonlady and although I got up when my cleaner arrived I went back to bed and slept until 2pm, with interruptions for nightmares that is. TV-wise I keep forgetting to turn it on until the evenings so never look for anything interesting.

    Ty for the reminder @chiarieds. Unfortunately something like that would press the cover onto my leg and increase the Neuropathic pain so it has to be something floor based. I have seen something on Amazon that would work, albeit quite expensive, but I don't trust them since someone else used my bank details to join a British over 50's dating site. As Amazon were the only other British company that stored ALL my details it had to be them. I tried to explain to them it was likely an employee but they just sent a standard reply that my account was ok. I have refused to use them since simply because I don't trust their security. No company should store all bank card details, it isn't safe despite supposedly being "safe" sites, and Amazon's insistence on doing so is just to speed up ordering. I prefer my safety over their speed.


    TK
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    edited September 2020
    @Topkitten I'm glad to hear you are okay if somewhat sleep deprived  :(  We understand there are days when you won't have the energy to post or feel up to it but will keep checking as we care about you and your wellbeing.

    I hope you have a restful weekend.
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Hi Topkitten, sorry to hear about your nightmares. I've noticed that I get them when I'm really unwell with infections. I get them a lot as I've been on steroids for over 15 years. Once the infections are treated, the nightmares stop.

    I have to say that I use Amazon a lot and thankfully have never had any problems. I do get some unwanted emails but I just delete them. Some are from various universities, dating sites, shops. All unsuitable!!! But I don't let it bother me.

    Take care. 

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