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Sad, lonely and for what?

TopkittenTopkitten Member Posts: 1,263 Pioneering
You know, people keep telling me I am useful and valued. I have no idea why or what they expect of me but today is typical......

I woke this morning with a lot of pain and gripping issues in my hands just because I have to use my bed once again. Finally got out of bed around 10:30, made coffee, sat and had a smoke and enjoyed the coffee, took medication. Started playing some music and played OSRS online. After an hour or so, took a break, made coffee, sat and had a smoke and drink and went back on OSRS. Did this a couple of times more then finally pushed myself to make a couple of cheese and pickle rolls, ate them watching TV, made coffee, smoked, got tired so went and slept for an hour or so. Got up, made coffee, drank, smoked, OSRS for a half an hour and then got so fed up I just stopped doing anything. Then I decided to write this. The pain in my leg has risen ALL day, every time I get up and move about is worse than the last and the first time was almost unbearable let alone subsequent movements. My arms calmed down a bit, the pain lessened and my hands became more usable but I have no extra meds for my arm and neck issues, just what I was put on for the leg, and now my neck, shoulders and arms hurt like h*ll. This evening I have recorded Formula E to watch then I will go to bed, read for a couple of hours then try to sleep for another couple before finally the pain is low enough to let me sleep. I wont eat again because the pain is too much.

Believe it or not but today is one of my better days.

I need to be using a wheelchair which would help reduce pain considerably and I have had an OT report saying so since last November but because I cannot go out officially I cannot follow the procedure to move the Council insists on. I rang Council Housing twice, first time they told me Housing Officer would ring back (he didn't), second time he did ring back and his words were "Stop calling us and wasting our time". After an abortive suicide attempt 8 weeks ago I had help from Reablement, initially once a day but then 3 times a day. It lasted 4 and a bit weeks. Their Physio visited me and promised to get back to me about my other issues (pain control, moving, etc.) but I never heard from her again. Before they finished I got a phone call from someone who said he was a Social Worker and he said he would refer me to a Housing Charity and would get some support sorted and then would look into other issues. A few days later some woman whose English was horrendous rang about care but she didn't have any idea what I needed and couldn't understand me at all. She rang on and off and every time just ended saying she would get back to Social Care. I know why though. When Social Care get involved they are supposed to visit, assess, produce a Care Plan, let me read and sign it and then that goes to the agencies to set care up. This so-called Social Worker hasn't done that. I haven't been treated fairly since a young trainee Social Worker they allocated to me made some horrible mistakes. In the ensuing fuss she was commended for effort, I suddenly no longer needed help and my records had a number of nasty comments added about how abusive I am (records that cannot be seen or changed to be correct). It seems Social Care can say what they like about anyone and there is no way to have it made even approximately truthful. Ofc I have never had any help since Reablement left without notice of any kind, they just picked up their stuff and left.

My arms are such an issue because I now have 2 Cervical ruptures untreated. Why untreated? Simply because a few years ago the Senior Consultant put me down for surgery for a procedure that couldn't be done because he was more worried about his upcoming surgery than my major surgery. Since then a colleague of his shouted at me that I didn't need surgery and was just being a pest. This came after being on the waiting list for 3 years and confirmed by 5 consultants. Now Orthopedics refuse all referrals and refuse to even talk to me when I have been in hospital.

My GP is worse than useless. None of the doctors know much and either aren't allowed the time to find out or can't be bothered to find out how to do the things they should do. I asked for a referral to OT for ASSESSMENT 4 times but each time they referred me for TREATMENT. Finally someone from the hospital Social Care group took pity on me and referred me properly. However, I got given an idiot with no experience as an assessor and the report was awful. It took 6 months to get Social Care to correct it and, when I got it last November, it was too late to use it sensibly. Of the GP I have requested a medication revue 6 times and been ignored each and every time. I have complained about them to NHS England (which is the correct escalation procedure) but they refuse to raise ANY complaint against ANY doctor. They just send details back to the GP so they can continue poor support. I have been rude but they are so money based they refuse to even kick me out (it's called being "Deregistered"). If they kicked me out another surgery would have to take me on but I have called 2 and both refused to take me on because I am Housebound.

I can and do go out for food now and again but I have to take a technical overdose to do it. What I take wont harm me and I am certain of that because I used it before with no problems. However, going out whilst already under medicated causes me great suffering. If I could use my wheelchairs to get about I could probably go out properly but I'm not allowed such luxury.

I'm not allowed a better life due to others mistakes and stupidities. I am not allowed appropriate medication because of incompetence. I am not allowed help because of errors, mistakes and cover-up's.

Now someone tell me again how I am valued and why it is worthwhile trying to extend this miserable and unnecessarily restricted existence.

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.

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    edited August 2020
    Hi @Topkitten, I'm really sorry to hear things have been difficult for you.

    Were you able to chase up the physio who was going to offer more support?

    While you might not find the service Samaritans (116 123) provide to be of use to you, there are other crisis services out there including Shout (accessed by texting SHOUT to 85258) and CALM who offer a helpline on 0800 58 58 58.

    We also are able to make a social services referral on your behalf if you would like us to.

    Can I just clarify, are you currently registered to a GP surgery? If you feel your pain medication is not adequate at the current prescribed dose I would suggest speaking with your GP to see if it can be increased or changed. 

    You also can use an NHS directory to see what mental health support is available in your area. Some of these might be self-referrals so you wouldn't need to see your GP.

    If you do feel like you might be in danger, please make sure to call 999, or go to your local A&E department.

    Community Partner
    Scope

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  • janer1967janer1967 Member Posts: 9,108 Disability Gamechanger
    Hi @Topkitten Sorry you are feeling low but that you have had a reasonably good day for you.

    Try and think of all the things you have achieved in the day rathwr than what you havent done, getting out of bed even can be a challenge but you did that so well done and you even made food and went online

    Do you have a wheelchair ? have you contacted wheelchair services. Also there are often some very cheap ones on selling sites like ebay or maybe put a wanted ad on a selling site

    Have you tried to get a new GP you can always request one without having to be taken off your current GPs list

    Try and think of the good not the bad I know its easy for me to say and think of the positive not dwell on the past 
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi Topkitten, I'm sorry to hear of your predicament. I identify with a lot of what you are experiencing. 
    Yesterday I was in such horrendous pain that I had to take extra steroids, something I hate doing. 
    I get upset because I have yet to be given a proper diagnosis. I think rheumatologists as well as neurosurgeons and other specialists are just not enterprising or even interested enough to investigate patients properly. 

    Also, regarding social services, 17 months ago my care hours were unjustly reduced and I've actually started legal proceedings to put my point across. I really don't need the stress of going to court but they left me with no option. 
    . I have a wheelchair (from the wheelchair service) but I can't go out on my own, I need my carer but we don't have enough hours allocated now, so basically social services have forced me into indefinite lockdown!

    I'm wondering if there's anything you can do to make you feel better, taking it one day at a time?
    Are you able to order deliveries online?
    Could you perhaps get some fruit juices or smoothies as well as water to keep you hydrated instead of relying on several cups of coffee per day? Perhaps add some fruit for variety and ready-made snacks so you don't have to prepare something yourself when you are in pain? I have to do all these things myself because I can't stand up so can't prepare meals etc.

    You are probably younger than me so I don't know if Age UK could offer you any assistance. 
    It's very frustrating when the agencies who should be helping you refuse to meet their responsibilities. 

    I wish I could help in a more practical way but at least you know that there are people here who understand how you feel. 
    Take care, wishing you all the best. 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Thanks for the replies.

    Ok, to answer some questions......

    No, I cannot chase up the Physio she is part of Reablement and they are finished with my case and it isn't their fault that no replacement has been arranged, that's Social Care's fault.

    I have been assessed by Mental Health 4 times and given no support. Their reasoning is that if I received appropriate support with the physical side I wouldn't be suicidal. So they basically tell me to go away.

    I'm housebound, I can only go to A&E by ambulance. The treatment varies between good and bad but I never actually get any ongoing help.

    I have 2 wheelchairs, an electric scooter and a car fitted with hand controls and a hoist it's just too painful to use much.

    I have tried 2 other GP surgeries both said that as I was housebound I would have to stay where I am.

    I have tried online ordering but it gets too much walking back and forth to the kitchen. I go out for food for 2 reasons, the food and seeing other people (just getting out). If I use the meds I am not supposed to I can manage to go out (with bad suffering after) but I don't want to waste them unless I go out as I cannot get anymore. Although I was on patches before at a very high dose my current GP refuses point blank to let me go back on them (idiots abound).

    I have had dealings with Age UK before but since then their prices have gone up a lot and money is tight.

    Don't get me wrong, my life is quite comfortable in a lot of ways, it just isn't a "Life". I have always been gregarious and outgoing and having 3 or more years of the last of my mobility taken away due to ignorance and stupidity just leaves me wanting to go to sleep and NEVER wake up. Being comfortable just isn't enough when I could have so much more. I have tried being rude to GP staff and just arguing with GP's has got me kicked out of 2 surgeries in the past. However, this surgery is so desperate for money that they wont get rid of me so I can go elsewhere. All the problems seem to stem from an incompetent and money-grabbing senior GP.

    Today is not so good, was hard to get up this morning, just another boring day like every other one with nothing to break the monotony. I haven't even heard from my kids since Fathers Day. Not even to ask how I am. So saddening ....... I obviously failed to bring them up properly.

    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.
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi Topkitten, I don't know which store you get your online deliveries from? I get mine from Tesco and I've put a note on my order to say that if my Carer isn't here then the driver needs to bring my shopping in the kitchen and put the cold and chilled items away for me. The drivers have always been helpful, I've not had any problems. Do you feel you could try again? I certainly couldn't lift or carry any shopping. Good luck, I do hope you find something positive to hold onto, despite all your challenges. Take care. 
  • leeCalleeCal Member Posts: 3,355 Disability Gamechanger
    @TopkittenI haven't even heard from my kids since Fathers Day. Not even to ask how I am. So saddening ....... I obviously failed to bring them up properly.
    I’ve had exactly the same problem with my kids, I have four and I didn’t get one card. I had two of them phone on that day and two let the days and weeks go by without a word about Father’s Day, as you say saddening at least, actually it’s painful. And like you I thought I’d failed to bring them up properly but Im wondering about that because I know I did. 

    Mine are in their late twenties and early thirties and say they are busy. To me that sounds like an excuse until I think back to when I was their age, desperately trying to make something of myself to impress my parents and my peers and most of all my girlfriend. Secondly parents were of the past, I did have strong feelings for them but they were always something of yesterday. They were also content in themselves whereas I was frustrated by the world. They didn’t seem to understand my problems but just thought they could smile away my worries and concerns about today. They were slow, I was fast thinking. They were unfamiliar with the modern world, modern jokes, and modern technology was viewed as nothing more than luxuries, beads and baubles. I phoned home but they were frankly sedentary in their ways and stuck in some fifties time warp, or so it seemed to me. They had no news and I had tons of it but none of it really interested them, nothing really impressed them about what I was doing. They just smiled and wished me well and went back to the dahlias or shelling peas.

    They brought me up properly, I brought my children up properly too. Do we as parents need to blame ourselves? I think not entirely actually. Perhaps I am a little boring, and out of date compared to a young dynamic person and perhaps sometimes I offer platitudes based on the past experiences I’ve had of hormone fuelled living. For their part I think they are under valuing the wisdom I can offer. But I wonder as I write, wasn’t it always this way between old and young. 
  • OxonladyOxonlady Member Posts: 381 Pioneering
    LeeCal, I agree with everything you say.
    I used to get upset when my son didn't answer my texts and didn't phone but I realised that he's just trying to establish himself and gets quite stressed with work, paying the rent etc. So now I just keep him in my prayers and never make any demands on him nor have any expectations. He will contact me when he is ready. I will be waiting while getting on with my own life. 
    It's become important to me to remain emotionally independent. 
  • leeCalleeCal Member Posts: 3,355 Disability Gamechanger
    Hi @Oxonlady I think there is another big difference in these times in that once upon a time, not long ago, and for millennia before, skills and knowledge was passed on by word of mouth in person mostly. Now there is the internet and many of those old skills are not needed either because they are anachronistic or because the processes are now automated. The elderly were a treasure as far as these things were concerned and by one to one interaction also had the opportunity to pass on a little wisdom, perhaps morals,  teach patience and dexterity. 

    The internet is of course a valuable resource and a lifeline to many so I’m not advocating getting rid of it, impossible now anyway. But it does explain a little of how things have changed and the relationship between old and young has been altered.
  • Denise11Denise11 Member Posts: 99 Pioneering

    Topkitten  Just a thought.  If you ask for a wheelchair, ask for an electric one so that it won't put so much pressure on your already painful arms.

  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @Denise11, I have 2 manual wheelchairs and an electric scooter but I cannot get them into or out of the house because it isn't adapted and I am not able to follow the normal moving process and no one listens when I try to get help with the idiots at Social Housing. The doors and corridors here are too narrow to use a wheelchair indoors.

    @leeCal, at the beginning of Covid lockdown I contacted all 3 of my children and offered to try to help if they needed money. Both girls said they were fine and that was my last real contact. I got a card and photo from the youngest on Fathers Day and no other contact at all. The eldest girl visited on Fathers Day but stood at the gate with her girls and it was hard to talk, no other attempted contact. The girls are in their mid to late 30's. My youngest is a boy of 25 at the start of the lockdown I helped him get a part time job and he even stayed at mine 2 or 3 times as it was nearer me than where he lives. He also called almost every day. Since the day the regular worker went back and he got no more work (6 months ago) his only contact was a text late on FD. I've tried calling but none of them ever answer. Not one of them seems even concerned whether I have had Covid or not.

    I went through 2 divorces when my kids were young and they stayed at mine every weekend ALL weekend and we visited my Mum and her Dad (while he lived) every weekend. When Mum died a few years ago I don't think ANY of my kids had seen her for 4 or 5 years and certainly never called her. They gave cards and presents to me to deliver (when they remembered). In the months before Mum died I was the only one visiting her and helping her go out every week. Not even my Sister managed that and, because I mentioned it and it embarrassed her once, she now will have no contact with me, not even an Xmas card.

    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.
  • leeCalleeCal Member Posts: 3,355 Disability Gamechanger
    edited August 2020
    @Topkitten commiserations. I understand your point of view about your children entirely.
  • leeCalleeCal Member Posts: 3,355 Disability Gamechanger
    Hi @Topkitten how are things today? Keeping cool I hope.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Not great @leeCal, never been sensitive to heat or cold before but now it is increasing the pain a lot. Haven't done at all well.

    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.
  • leeCalleeCal Member Posts: 3,355 Disability Gamechanger
    I’m sorry to hear that @Topkitten, perhaps a cool shower would help.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Lol, @leeCal, therein lies a major problem. In order to continue walking, even though the pain is still bad, I have had to strap my ankle up to restrict movement. However, when I had care they took it off and put it back on. With just me in comes off and goes on as little as possible. Unfortunately I can't shower with it on. Bending far enough to reach my foot is the issue.

    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.
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