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Feeling very low today

TopkittenTopkitten Posts: 943Member Pioneering
I have had many problems recently and very little support which has driven me to the brink of ending things recently.

I was made housebound a little over 4 months ago. I asked immediately for an OT assessment and this took 6 weeks to get done. After another 2 week delay I was on the waiting list. A couple of weeks age this OT referral was cancelled and I suspect it was because I was referred to the wrong department. The surgery claimed to have tried to contact me but did not and it wasn't like I was outside anywhere. I did not deal with this let down very well as it was the "Last straw" and then I got another big push in the suicide direction.

I have been having withdrawal issues since before being made housebound which were wiping me out for the third and last day of the patch changes. Three weeks ago it was bad and I lost all memory of that third day completely and so missed the change-over. I was a bit worried by the lost memory but thought it was a one-off and ignored it except I decided to see how well the residual medication worked after day 3.

On day 6 of the patches I removed them and lost any remaining residual medication but, 24 hours later, I was in so much pain that I put new patches on again. After only 24 hours I lost my memory again but this time I lost 3 days completely. I was a bit worried by the lost memory and contacted 111. The woman clinician I spoke didn't even talk about the lost memory and fixated on my suicidal thoughts. In the end I said to her she wasn't helping and rung off. A few minutes later I called again and was put back through to the same clinician. I tried to re-explain the problem but she wouldn't leave the MH issues alone, like a dog with a bone, and so I just hung up and gave up trying. I was so wound up that I doubled my usual dose of neural pain killers (which are 2 tablets once a day) and tried to sleep and when didn't work took the same again. Slept for 2 hours and then woke up and repeated the dose and went back to sleep. I did this all day and must have taken 25-30 tablets but I didn't call anyone just slept it off. One advantage was ofc that the usual pain was very well controlled. On day 8 the residual medication dropped too low to help and, rather than put new patches on I wolfed down an OD of the neural meds again but a much lower dose this time, intending to drive somewhere and get it other with. I bottled out of this due to the pain I would likely suffer and called 111 who called for an ambulance and I agreed to go to A&E as the ambulance wanted me checked out.

After a few hours I was moved to the Medical Assessment Unit where I was treated not for the pain or OD but for dehydration.. With my MH issues I cannot cope with being put on a ward but despite my telling them so they did it anyway. I managed to sleep for a few hours with the curtain pulled round but when I woke up the Anxiety started it's climb. I spoke to a nurse who pulled the curtain back round but it was too late and I told him I would have to leave. I had used up one of the two fluids they wanted me to take but the doctor agreed I could go after I had seen the MH team. An hour later they hadn't arrived and I was past the point of no return and began walking out. I know that walking that far was going to be incredibly painful but, with the overdose still in my system and the fear and anger I was suppressing I knew I would do it and also cope with a taxi (which I cannot normally do). It took me three quarters of an hour to do the 5-10 minute walk but I made it and got home safely. I suffered heavily for that walking, much more than usual.

I didn't change or take off any patches this time and just moved about as little as possible. I discussed options both before and after this incident but got nowhere except to be told off for not changing them every 72 hours and, no matter what I said, this was the only answer I got.

I figured I would have to work it out on my own (as usual) and left the patches for 12 days, suffering quite badly on the last two days. Then I had an idea. What if I change one patch per day so that each one would give some benefit every day before dropping to residual. As a test I changed the smallest patch (25 microgrammes) and left it two days to judge the result. This definitely worked better and the withdrawal was minimal. Having left it an extra day I then changed a larger patch (50 microgrammes) which I use two of but only replaced one. That evening it went fine and the GP who had visited me the day before was the only dissenter stating that I change them together as prescribed. I checked the prescription and it did not sat change all together, just to change them after 72 hours.

So, yesterday morning, around 10 am I made a phone call to sort out some glasses to be done at home. I then sat in my chair to watch TV as usual. The next thing that happened was that I looked about with some confusion as it was very dark outside. The clock showed 8:30 pm. Confused and panicking I rang the Crisis Line and thankfully the answered. I explained everything and they were helpful enough but the lady suggested I ring 111 in the morning and we also agreed that I did not fall asleep but instead blacked out. I cannot ever fall asleep sitting up and that was the position I was in when I came out of whatever it was. I gave it some thought and realised I had blacked out 3 times for a total of 5 days in two weeks but I also remembered that I have been doing exactly the same thing since before I became housebound. However, earlier ones were very brief (all less than a quarter of an hour) and I had assumed I had dozed off even though I was sitting up each time. The biggest problem was that I would go away to wherever even if I was smoking and I have various holes burned into my dressing gown (I don't get dressed any more) and two holes burnt into my recliner.

Having been asked to ring 111 my OCD kicked in and I ended up ringing them after only 20 minutes. The usual call handler said a clinician would ring within the hour. In fact they skipped that and an out of hours GP rang me little over an hour later. She was more concerned about things and said I should make my way to A&E. However, I pointed out why I have problems with using taxi's unless I am extremely wound up and even if I got there I could NEVER walk into a busy A&E (more than 2 people is busy for me) and would turn round and go straight time again. She grudgingly agreed to let me stay at home but to ring 999 if anything changed. This comment set off my OCD and I rang 999 within 10 minutes, with much the same result but this time the Paramedic insisted on sending me an ambulance despite my stating that it seemed such a waste. It was some hours later when the ambulance crew turned up. After I explained the situation they gave me a quick once-over and then we discussed A&E. We all agreed A&E wasn't particularly suitable and, unless I was going to try to kill myself, I didn't need to go. I assured them I wouldn't that night and they left with me apologising for wasting their time,

I now have to try to get a GP interested in my situation, which is not going to be easy, As too which hospital department I should be referred to I have no idea at all. So, I am left at home and have had a headache ever since I woke up, nor have I gone to sleep. I am worried about how to make it clear to the GP about the problems but, I suspect they will want to stop the strongest medication and that would not only mean that I will suffer a lot of extra pain it will also mean that I will be unable to even leave the chair without the pain crashing through the roof. As for using the rest of the medication until whatever change they make comes through I haven't a clue on how to move forward.

Apologies for any bad spelling, for one reason or another I am finding it difficult to concentrate properly as well as suffering more than usual. I am having to correct one or two spelling/typing errors in every line of text and it is taking me ages to type all this. Apologies also for such a long post.

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

  • MatildaMatilda Posts: 2,596Member Disability Gamechanger
    Sorry you are feeling low, @Topkitten.  Unfortunately, there is limited help people can give online rather than f2f.  Why have you become housebound?  You could search for befriending services in your area.  Or for immediate support, phone the Samaritans.
  • janekim96Pjanekim96P Posts: 44Member Courageous
    Sorry to hear about your struggles @topkitten I feel like you I wouldn't be able to go into hospital cause if my anxiety but atm I'm reducing my pain meds too it's very hard and I sympathise with sleeplessness it wears you out I know I live with it daily plus the chronic back pain,not going out of my flat I'm goin out of my mind also waiting to hear back from the DWP PIP review form I sent back in August I can only suggest that you talk to your doctor about all the problems your dealing with but good luck hope all goes well and you feel better soon 😊
  • TopkittenTopkitten Posts: 943Member Pioneering
    edited October 2018
    I became housebound when I was trying to go out and the Fentanyl patches were running out because, for some reason, my skin can override the method of restriction that makes them last 72 hours, @Matilda. At that time I was going into withdrawal on the third. Since then I have gotten worse twice (happens every 2-3 months) and it seems the bigger discrepancy between the amount of Fentanyl and the amount supplied then the quicker I take it out faster still. Originally I noticed this in the 100 microgramme patches so the GP and I decided to use 2x50 microgrammes as they are better tested and used much more than the 100's. The reason for the bigger discrepancy is that the GP refuses to increase the Fentanyl any further because someone decided that 125 microgrammes was a limit beyond which a lot of people get no extra benefit and more side-effects. I have asked 3 GP's to work with me on it to see if that's the case but they just trot out the average response, even though I have explained and they have seen in the past that I do not handle opiates like most people.

    [edited by moderator] I have tried to stress this sort of thing to the GP but they do not understand the condition and have never had to handle such high doses (as a general rule only terminal Cancer patients use more towards the end). Consequently, as I started suffering for a day and a half every time I went out I spoke to my GP and we agreed I should not go out any more. I have tried a couple of times but a few weeks ago I just went a mile or so to a shop, got some money from a machine and came home all in about 3/4 of an hour.... I suffered massive pain for 8 hours and withdrawal for another 20 hours. The pain was simply too much to cope with plus I have become worse again and now exhaust the patches in only 24 hours.

    By exhausting them it means I am fundamentally getting through day 1 with triple dose (i.e. 375 microgrammes) then they start running out and I start withdrawal dropping from a massive amount to very little in a few hours. It is this crash that causes the blackouts, I believe.

    I haven't looked to get anything arranged about visitors as I was hoping to move to a wheelchair accessible place but those hopes were destroyed by a mistake at my GP surgery. At the moment I just want to try to get things more even and that is why I was going to try changing one patch every day instead of 3 every 3 days but even changing a single larger patch (50) lost me 10 hours and I don't think there are any other ideas to try except to stop using Fentanyl. If they do that I will not be able to walk at all.... ever!!!! Remember that Fentanyl is the strongest pain killer used by prescription and is 50x to 100x stronger than Morphine.

    I will ring the surgery tomorrow but I don't have much hope as the doctor's there are too conservative when they don't have a script to follow.

    The sleeplessness I get is caused by taking a low dose of Pregablin. It works the best on me for pain control but a bad side-effect limits me to a low dose, it gives me night terrors. At my low dose it just gives me unremembered nightmares whenever I sleep.

    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.
  • MatildaMatilda Posts: 2,596Member Disability Gamechanger
    @Topkitten

    Hope you do get some help from your GPs.  One thing you could try.  If your surgery has the same system as mine, wait until your surgery has closed and then phone.  You will be asked if you want the out of hours service.  When connected, you state your problem and the operator will get an out of hours GP to call you back in about an hour.  I have found these out of hours GPs very knowledgeable and helpful - though they can only give advice, they can't prescribe.  This is quicker than phoning 111 and having them contact an out of hours GP.
  • Sam_ScopeSam_Scope Posts: 7,361Administrator Scope community team
    I am so sorry you are having such a difficult time @topkitten ;

    You are a member of our community and we appreciate you.

    If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected]

    You might also benefit from reading MIND’s information on how you can help yourself: http://www.mind.org.uk/information-support/types-of-mental-health-problems/suicidal-feelings/how-can-i-help-myself/

    If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.

    @Matilda says, a good port of call would be your GP, do you have anyone to support you in going with you? 

    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,361Administrator Scope community team
    Although we encourage members to share and talk about their mental health challenges, we will remove anything deemed as a safeguarding issue, this means things like describing a method of suicide or self harm. If you have any questions please dont hesitate to get in touch by emailing us on [email protected]

    If you are struggling with thoughts of suicide, them you can speak to the Samaritans on 116 123 - they are qualified and experienced and can offer support.
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 943Member Pioneering
    I have tried contacting my GP this morning as I agreed with the out-of-hours GP but despite calling every few minutes from 09:30 until 12:00 all I get is a busy signal. I can't say that I am bothered at all tbh I have given up on getting any help from them anyway because they just don't want to know.

    It seems I had another blackout or absence or something last night as well but only for 2-3 hours this time. It also seems that I must have come out of it before going back because I was watching American football on the red button when it started and had the light off but when I finally came out the light was on and I was in normal TV mode with the control in my lap. I don't think I smoked this time so I guess that was lucky but I do seem to have cut my foot at some point this weekend when, as far as I can remember, I never caught it on anything.

    I am unsure why I am not worried by all this. You would think it should be something to worry about but I don't think I care whether I get through this or not now, Doesn't seem to be worth worrying about a future that I don't want anyway,

    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.
  • MatildaMatilda Posts: 2,596Member Disability Gamechanger
    111 can put pressure on GP surgeries, though they have to be able to get through to them of course.  Today 111 doctor got surgery to phone me back earlier than they probably would as I needed my painkiller for sciatica dosage increased urgently.  111 doctors can also make home calls out of hours if they think it necessary.
  • TopkittenTopkitten Posts: 943Member Pioneering
    111, ambulance crews, police safety check teams and the hospital can all send reports to Social Care as well as GP surgeries. I have had many of all types. From what I gather the reports are filed by the receptionists (at my surgery) and doctors only look at them when an appointment is made (assuming they bother to read my notes which most don't due to being massively thick). The same seems to apply to Social Care who have been ignoring referrals for me for 6 months.

    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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