Dealing with chronic pain
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Having a bad time again

TopkittenTopkitten Member Posts: 1,258 Pioneering
I am really having a hard time accepting my current situation. Having spent 6 months trying to get my GP to medicate me appropriately he has left it until after I have become housebound to explain why he will no longer increase the meds further. I am left with questions going unanswered going round and round in my head and leaving me desperate to get out of this stupid life in which I get treated so badly. I have no one to talk to about any of it......

Why was I allowed to be put into this position by my GP instead of him informing me in advance so I could prepare?

Why does the MH Crisis Line only answer during 9-5 hours and never when I need them?

Why do people always tell me to ring the Samaritans when I have openly stated that I have done so in the past and it only makes me feel worse?

Why are we allowed to get into a state where we cannot cope, have no way to improve, are almost completely non-functional and when ANY animal in such a state would be put down because it is wrong to inflict significant unnecessary suffering?

These questions and others are making me want to find a way out... again. I am told to ring for help when I get this way but there is no one except the 111 service to ring and all they will do is send an ambulance and all the ambulance crew would do is take me to A&E and where I can get no help by going. Even, like recently, when I agree to go they will not let me see the one group of people that might help me. I am left all alone, unable to cope, unable to accept that I have been treated so badly again and even my family won't contact me let alone see me.

My eldest daughter has upset me today. She posted a few new pictures which was fine but the comment was awful considering she NEVER contacts me any more. The comment was "Always remember to make time for those you love and care for most in this life"! Do I assume from that statement that she no longer loves or cares for me any longer?

I can't find any way out of my situation that involves living and I can't cope with carrying on as I am and I had more bad news Friday.

Because my GP didn't explain things to me and doesn't take any action unless I ask him to things have gotten worse. As soon as I knew I was housebound I asked for a referral so that my living accommodation can be changed as I need to start using a wheelchair indoors. That request was over 6 weeks ago and 4 weeks ago I was told by MH that all I was waiting for was for someone to be allocated to do it. Turns out that statement was *********! The letter asked me to ring them by next Friday so I assumed that's when someone was coming but I had to call for it to go ahead. No, ofc it wasn't. It is going to be another 15 weeks before anyone will come round. Even once they produce a report that says I need to move I expect it to take 6 months to find somewhere (assuming I can even get there to see if any place is actually suitable). That means that in total it is going to take a year.... and so far it isn't even 2 months. There is absolutely no way I can exist here for that long even at my current situation. As I get worse every 2-3 months I will continue to deteriorate through that period.

Because of mistakes by Social Care I am not allowed a Care Worker so cannot get care help. My children range from never speaking to me to never remembering to contact me. My friends are all gone. I have no relationship to fall back on. My parents are dead. My greedy and selfish sister cares nothing for me. I have nowhere left to turn for help and am not well off enough to get help on a private basis.

Why should I even try to keep going?

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

  • MisscleoMisscleo Member Posts: 646 Pioneering
    I really get everything youv said here. And in different degrees most of us have experienced the same problems with the people who surposed to be "on our side" like family or those who should have helped us with money & housing and couldnt be bothed.
    Theres no answer to it all. Our MPs should do more councillors should do more family really should do more to help us
    Good luck
  • feirfeir Member Posts: 388 Pioneering
    edited July 2018
    Idk. I'm still going but i have dependents to stay here for, they do care for me also so i feel cared for (and a little guilty as our roles have reversed). Being cared for does help a lot but sometimes i'd still like to end my life as i don't really have one.

    I've just about stopped fighting my circumstances. As a rebellious person with a high level of emotional intelligence this goes against my ideals and causes me to become more depressed as i accept there's not much help out there and nobody with the means to help me gives a fk really, as a neglected child who became a woman in  a messed up society where mild, covert abuse was pretty much considered normal i suppose this also makes it easier to accept that people will neglect you or just see you as an end to their means or useless, our whole society is still based on this thinking but you can see people are becoming more aware of issues outside of their own and empathy levels are increasing, even so most still do nothing about it and may not even know how to.

    I'd love to retain my independence despite others opinions on me as valuable, it's supposed to be a given human right because it's essential for our wellbeing but we can see people also go hungry or homeless too and so know that human rights mean nothing unless they are implemented. And so i accept it. The world won't change because of people like me, i stopped caring too for my own well being. Hopefully it's temporary as i don't like it.

    So i'd like to add, seeing as these forums are becoming more mental health focused, if anybody actually thinks i am mentally ill because i'm depressed i'd argue that i probably am not and that my brain is just coping with my circumstances in the best way for me, unfortunately (or fortunately) it did this by restricting my ability to function. It makes me stop caring because when you're helpless what else can you do?

    I don't know why you should carry on, a year is a long time to wait for change but that change is an option for you at least if you can hold on somehow. I know i've personally changed some things by not giving up, i feel i might get to a point again where giving up is not an option anymore and i will be able to fight.

    Unless you're daughter tagged you in that picture don't take it as she meant you. She may just have liked the sentiment or been hinting that someone else should contact those they care about, she may even be reaching out to someone to contact her. It seems you might need to reach out to your family though and make yourselves vulnerable to them and see how that goes, but without any support with that idk how capable you are of doing that especially as any rejection is likely to be painful

  • TopkittenTopkitten Member Posts: 1,258 Pioneering
    You know, I really should know better by now to stop doing what people tell me to and just stop asking for help. It's so soul destroying having it refused over and over.

    After a number of calls recently to 111 and speaking to them and out of hours doctors, ambulance crews and A&E staff I tried telephoning the people I should contact yesterday. I called the GP, MH and the Council.

    I started with the council, explained my living situation and lack of ability to look after myself and asked if there was any way to speed up getting into accessible accommodation rather than waiting 15 weeks for an OT assessment to prove I needed it. The lady was quite helpful and said she would contact those that needed to know and she also asked if I wanted to consider sheltered. When I agreed she said she would contact them too and someone would get back to me that day. They didn't.

    Second stop was the GP and I spoke to a lady on reception who listened, went off to discuss it and then said I should speak to a doctor later in the day. The doctor did call and I explained that the pain was so out of control that I couldn't cope with washing, showering or eating and that I was so distressed and depressed I couldn't stop thinking of ending it all. I also explained about the 15 week delay with OT. She told me to start taking Tramadol at maximum dosage and that she would contact OT. I stated I didn't have enough Tramadol to take 8 a day and she agreed to prescribe more but seemed confused about getting the prescription to the chemist housed in the same building.

    I called MH last and was told that the people I should speak to weren't in but someone would get back to me later. They didn't.

    I was struggling badly last night.

    I got a call from the sheltered accommodation people today. The woman was a complete idiot! She started out asking where was my application and I explained I hadn't made one yet as I had no proof I needed accessible accommodation and wouldn't have any for around 15 weeks and was told not to apply yet as any application would be for the wrong type. I then explained my situation and she started getting annoyed with me. 4 times she told me to apply to move and each time I repeated that I had been told not to until something was worked out or I could prove what I needed. She wouldn't accept this answer. 4 times she told me to contact Social Care. I explained that, in order to cover up a trainee's mistakes, they had lied on my records and blacklisted me from having a Care Worker. I also explained that in the last 3-4 weeks I had been given 4 referrals 2 with a status of "at risk" and all had been ignored and that they hadn't even bothered to contact me to let me know I couldn't get help. I also explained that if they can ignore the police and hospital staff they would certainly ignore me. Not only would she not accept this she made it clear without actually saying so that I didn't know what I was talking about. She finally said that she would be ending the call, that I must apply to move and that...... this is where I hung up because she had no idea. She had obviously never been seriously injured and had to deal with the idiots I do regularly trying to get help and, like most healthy people, could not accept that the truth could be anything except what she believed it should be.

    A little later I got another call, this time from MH. It wasn't, as I had been told, someone I knew but someone on reception. She quoted from my assessment 6 weeks ago that decided I wasn't coping because of pain and lack of support from the surgery (not that I have actually seen this decision). I agreed that for that week I was desperate due to a lack of medication being supplied and that the people I saw did help. I went on to explain that I was in a bad way because my GP didn't have the guts to tell me he wouldn't increase the medication until after I was housebound and that, after 6 weeks of being housebound, all I could think of was ending it all. She asked me if I had seen someone from the Crisis team and I said I spoke to someone in A&E about a month ago who threatened to section me when I wouldn't cooperate and when I said "Please do then you can sort out my medication for me" she left in a great hurry,  She said that the GP should have referred me to the Pain Clinic and I told her that he had but when I contacted the Pain Clinic they said I must attend a seminar and follow-up appointments. After I told them I was housebound they said they couldn't help me and discharged me immediately. By now she was getting confused and finished with maybe I should be assessed again and I should wait for another appointment despite me interrupting her saying I doubted I could keep going long.

    Whenever I tell people I cannot keep going all I ever get is to be told to contact these people and, when I say I have done, they obviously think I am not being honest and tell me to contact them again. What is the point of being given repeated advice or trying over and over to get a different answer when I have been refused help a couple of dozen times? I do get people saying I would be missed and agreeing I shouldn't be treated this way but what I need is help and that is the one thing I cannot get and probably never will. So really, what is the point?

    I know what I need to do but don't know if I can manage it physically. Maybe I should at least go that far tonight and see if it's possible.

    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.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Oh I'm so sorry to hear about your difficulties @Topkitten, especially when you've gone to lengths to try and pursue things yourself- I know how frustrating it can be when communication breaks down and not everybody is on the same page. How are you feeling today?
  • TopkittenTopkitten Member Posts: 1,258 Pioneering
    Well, I haven't heard from MH nor from Occupational Therapy not even from my GP. Nothing else from the council too. So it was totally pointless trying. The only reason I haven't done "anything silly", as some people call it, is because of the difficulty in going out to try.

    With pain levels the way they are and how they increase so quickly I am unable to keep clean or eat properly and no one that matters seem to give a damn. With the constant, almost daily, withdrawal symptoms causing hot and cold sweats I feel absolutely filthy. Fortunately I eat so little that being down to eating properly once a day isn't causing me any issues apart from the occasional need to grab a cake or sweets when I get cold drinks most days.Mostly though that isn't a hot meal, usually just cereal for breakfast which is quick and relatively less painful. I really miss having coffee though. I guess it's a good job I have only 1 visitor (my cleaner) because I suspect that both I and the house do not smell great.

    I am generally really low every day and having little or no interest in trying to do things is just not really like me but I simply cannot cope with losing the ability to walk at such short notice because my GP didn't inform me sooner about hitting the maximum dosage he would prescribe. He won't listen to me or work with me to try out higher dosage, he has just left me completely stranded and having had no time to get anything in place before it happened. I feel angry and sick deep down to have been let down in this way.

    I've had a few people tell me to contact Social Care but if they can ignore Police Safety reports and Hospital referrals they would certainly ignore a request from me but when I tell people I'm blacklisted due to them putting lies on my records to cover up their mistakes the most common response is to have a go at me for telling lies or for not trying. Certainly stops me wanting to chase things up when I get that sort of response especially when all they are doing is trying to get out of doing something they could do but is difficult or complicated. They just want to dump it back on someone else instead.

    Sorry, not one of my better days, not that I get any better days any more.

    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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