Feel so alone and ashamed - please, I need advice

[thisishumiliating]

Putting this in chat as the health boards are pretty quiet and the chances of someone seeing this who can help or understand might be slim. I name-changed because I’m so ashamed.

I have a condition that causes chronic pain and was being emotionally, mentally and financially abused by my ex H, and the doctors just kept increasing and increasing my painkillers to roughly the level needed to sedate an elephant - I think I was probably using it for emotional as well as physical numbness.

I moved to the UK, and the NHS saved my life and I’m incredibly grateful; it’s just that part of that involves the fact that I have been trying to decrease, with a lot of really kind NHS support, from a prescribed equivalent dose of 360+mg of morphine a day (150mcg fentanyl). I managed to get it down to the equivalent of about 100mg, and for medical reasons (my condition causes fevers and the patches were no longer safe - they can’t have heat “applied” to them), I had to make a very sudden and big drop to the equivalent of about 20-40mg morphine a day. I want to be well, I want to have a good life with my husband, but it feels like I’ll never get past this. My back hurts so badly that I can’t poop and I’m crying all day. If there is anyone, anyone out there at all, that can help me; any advice at all. I have therapy Thursday, but I just need to know today that this won’t last forever.

I just told the pain nurse today that it was going fine; I didn’t realize the real withdrawals hadn’t kicked in yet. They started about 3pm today. I feel like I’m having the flu, COVID, and a mental breakdown all at once and work needs something done tonight.

I have no experience. But i just wanted to say I think you are very brave and I admire you. Very few people would be able to handle all of this AND even think about work. You are far stronger than you realise.

This might sound daft. But can you work on training your inner voice to talk to you as you would to a loved one in your position? I don't imagine you would berate a friend if the roles were reversed. You would empathise with t ouyhem, you would tell them how well they are doing and keep encouraging them. Talk to yourself with kindness and compassion and look after yourself as best you can. You need to nurture your body and soul to help them heal. Self hatred will not help you.

Just keep going, second by second, minute by minute, hour by hour. This too shall pass.

You are so strong to be doing this.

My mother did the same thing, came off morphine (idk what dose), and I remember how distressing it was just to see her. I can’t imagine how it felt.

That was 25 years ago this summer and she’s never looked back.

I was on fentanyl patches last year, “only” 12mcg/hr, but it was enough to make withdrawal a bit hairy. Nothing like what you’re dealing with, but I am still absolutely certain that you can do this.

As others have said, you seriously have nothing to be embarrassed about. I’m not in the least embarrassed about my withdrawal experience (though like I said it was much easier than yours, I don’t want to exaggerate). The patches were prescribed due to unbearable pain, we knew they were “addictive”, but it was the best choice at the time. Same in your case. It’s just how it works.

You really can do this 💪

OP if the back pain isn’t related to withdrawal and you can’t poop and have weak bones, could you have lumbar region vertebral fractures?
You should feel proud of yourself not ashamed, every bit of withdrawal is a step closer to where you want to be, you’ll get to the top of this mountain one step at a time

Why is everything so much worse at night???

Thank you so much, to all of you. I managed to sleep from about 1 to 6… after I finished my work (5 minutes at a time)!!!! I didn’t even want to try sitting up before I started this thread, but you’ve all been so fucking kind.

I’m going to take it very easy today and watch a lot of Poirot or Murder She Wrote or something and just focus on trying to hydrate slowly without puking (whoever said small sips, THANK YOU - it’s weird how you can’t even rationalize your way through the little things once pain reaches a certain level).

Also I’m looking up heated pads or pillows, based on the comments by the person who hurt their back with hot water bottles and the person who got the heated pillow in the Lidl/Aldi middle aisle (why DONT they have a website called middle aisle, and it would be a random collection of the most popular stuff from the middle aisle).

I have a video conference with my factory in China in about an hour, and then I’m done for the day by 9am.

And as for vertebral fractures @Wreckinball , I don’t think it’s possible? The pain doesn’t get worse with standing or walking; sometimes standing can make it a bit better. I assume that would be completely unbearable. It was the edges of my bones closest to the joints that were previously wearing away (or that’s how I understood it?), but I have a DEXA scan in a few weeks to see where we are now.

And thank you @WilfredsPies and @Tiptopflipflop - I know I would never talk to a best friend the way I talk to myself, and you’re right that I have nothing to be ashamed of. But it’s a very difficult thing; I feel like everyone is thinking that because I have a certain level of intelligence, I should have recognized the fentanyl was causing more problems than it solved. But pain doesn’t give a fuck where you went to uni or who your friends are or what you score on some stupid, meaningless IQ test. You’re right that no one in my position (I can’t be the only one) should feel guilty. I’ll work on reminding myself of that allllllllll day today.

Well done OP, glad you got some sleep.
in a few minutes (well, about a hundred, but you/we are taking this one minute at a time) your work will be done and I am sure your body may relax a teeny bit more with that pressure removed.
yes it was me (and others probably) who said tiny sips.
same with food, sometimes meals are overwhelming but half a biscuit do-able.
its not forever, it’s not a long term healthy eating plan but that isn’t what you/we are doing here.
and what a brilliant idea for you to watch comforting tv later, again its a manageable plan and hopefully a distraction.

That’s a genius idea, an online shop called The Middle Aisle!

My favourite comfort watch when I’m ill is Monk. It’s a detective with OCD, very funny, very light and fluffy.

Great that you got your work done! And now you're closer to your Thursday appointment. Good plan to watch detective stuff and just exist. Little by little you'll get there 💐

I do have chronic pain but not at your level.
I became addicted to a prescription drug which took 10 years of my life. I was also acquiring it illegally.
I can remember making the decision to come off it and having to tell my GP.
I can remember those first days and weeks thinking I will never survive this.
I found NA quite helpful and I was bedbound so I did a few meetings online. It was interesting to hear other stories.
You have needed medical pain relief so perhaps it’s not the same as heroin addiction. But it’s the same process - someone in pain seeking relief from it.
I am 10 years clean. I never thought I’d do it.
You will get there.
I can remember watching every single episode of Dawson’s Creek - don’t ask me why as I am nearly 60 - and finding it soothing.
Had a few people check in on me each day.
I just wanted to say I have never been through your physical pain but I think you are very brave.

Hi @thisishumiliating wanted to add to those saying you have nothing to be ashamed of at all. It's so sad that you feel humiliated - I wish you didn't feel that, on top of all the pain and sickness you're feeling. From the outside, what all this looks like to me is amazing courage. Addiction is nothing to be ashamed of - it can happen to anyone. And admitting it and doing something about it are things to be so proud of. I hope you feel better as today goes on.

@thisishumiliating - you are being very brave - I am glad things are a bit better this morning.

Re: Water intake - if struggling to drink - sucking ice cubes or ice lollies such as those hi-juice orange or lemon ones, can really help.

I am in a similar position with numerous health conditions.

The best thing for me was to stop working. That might not be an answer for you but while you are adjusting medication taking time away from work might help.

You are not alone.

You are so brave. There is nothing humiliating about your struggle. Your pain and condition sounds horrific, and I am so sorry you are suffering so much. It won’t cure your pain, but I’d say try and do everything you can to be as comfortable as possible. Heat pad, pregnancy pillow, lovely blanket. Netflix and audiobooks to try and distract yourself (no mean feat, I’m sure). It sounds like you have a lovely supportive husband who can maybe make sure you are hydrated and are getting lovely nutrition.

Again, nothing will take away what you are feeling, but you deserve to be as comfortable as you possibly can. I’m sending you a mass of well wishes and I hope that this awfulness passes so soon. You are brave, you can do this. You are so strong. 💐

Also please come back here and talk/vent/get support. I’m sure I’m not just speaking for myself when I say I’ll keep an eye for your updates and we are here for you!

Do you want any ideas for comfort shows/audiobooks/podcasts? I have loads!

Ask for Etoricoxib!!
This is specifically for AS I have spondyarthris in my back same thing and this is specifically targeted for the pain !!
U need to go back on your arthritis medication to control the inflammation I saw u mentioned tnf pen !
This is to control your immune system response to stop the inflammation attacking your joints it's doesn't stop the pain it slows down the progression of the arthritis u will still need pain meds !
Best thing for me with mine is walking everyday if u can !
Also I don't know how old you are but menopause can alsoake.joint pain worse !
Hope this can be some help I a very painful condition to have x

@ThisJadeBear I think… there is a lot we don’t understand about the human brain. I have never met an addict who was totally at peace; it’s always a form of self-medicating, for physical and often emotional pain, or just inability to cope, and while my doctors didn’t call it addiction (they just kept saying I was “building up a tolerance” so the medication needed to be increased), the effects are exactly the same and I think we do a disservice when doctors pretend they’re not - people don’t realize that they’ll be going through the same thing as if they were withdrawing from an illegal drug and it’s so incredibly hard on your body, mind, and spirit. I might talk to an NA facilitator about whether it would be right for me to attend meetings. Please don’t feel any shame; you were trying to survive, and you’ve already done the part that’s proving so hard for me! Hearing about people like you gives me hope for myself.

@sashh I should mention, in addition to my DH, I also have the most supportive bosses in the world. We all thought I was going to die, so I’ve already been off work for a year. I’m on a phased return and only at 4 hours a week right now, but this week, even that was too much.

@Nomorecoconutboosts Do you have a camera installed in my house?? Ha. I got down two crackers and a half a biscuit and that’s enough to take my medication with (I have to take steroids every morning for Addison’s caused by the steroids they gave me for the original disease when it spun out of control after COVID - believe me, I know how absolutely fucked it all is).

@PrizedPickledPopcorn Love Monk! I used to watch that and Psych. I’ll look them up on demand.

@IlovePond DH got me freeze-pops so that’s definitely going to be some of my fluid intake today; thank you so much for accidentally reminding me they were in the freezer!

@FlyingUnicornWings Yes, I would love any and all recommendations. I woke up at 6, couldn’t get back to sleep, met with the Chinese at 8, and now the world’s longest day has started - I feel like I’ve already been up 20 hours. I know it’s just bodily sensations but wow, they are unpleasant. And of course, last night I passed out before taking the laxative and now I’m sitting here wondering if I should just give up and take the laxative now, even though that may mean it kicks in at about 7pm.

@DoYouWantHalfThisSandwich Yes, I was in Humira, and it’s the only thing that worked. And yes, it’s weird @Girlwithavibe - yes, I suspected that all it can do is bring down the inflammation, but the effect it has on my pain indicates maybe that what’s already been damaged causes less pain than what’s currently being damaged. So yes, I’ll definitely talk to the doctor about Humira on Friday, unless the doctor has a better recommendation.

I know you are trying heat as a reliever. Have you tried cold as well? You can get freezer packs for this or a cold bath if it is possible with your mobility etc. My pain is nothing like this so I cannot comprehend what you are feeling but I find a cold compress better than hot for inflammation.

I just got my boss’ feedback about the work I did last night (it was just one email) and the whole thing was wrong. He had to practically tell me how to re-write it. I’ve been working for them for a decade and nothing like this has ever happened before. I slept half the day away trying to escape the physical pain and then woke up to a kind but “please redo this all” email from my boss, basically showing he would have been better off using ChatGPT than relying on me. My bosses have been so kind to me; I want to crawl into bed and never come out again.

Right, one blip in a decade means they're going to look at this as "oh thisishumiliating was obviously having a bad day" and forget about it.

They're NOT going to do what I suspect you're doing and deciding this erases the previous decade and represents your value as a person. It doesn't.

Do you need to take time off sick?

@decorationday I’ve been off sick for quite a while and this is supposed to be the start of my phased return at 4 hours a week. I may need to stay off sick until I see the neuro-physiologist on 4 June, which I told my bosses today. But yes… my boss already told me not to beat myself up, but I just feel like puking.

I've just popped on to say I hope you're doing ok.

It's really common for people to think they're ready and try to return to work a bit too soon so really don't worry about that. It says so much about your character that you tried.

If you haven't already, I find cosy bed socks and nice clean jammies do wonders for bringing a wee bit of comfort

You are amazing. Tumeric is very good for inflammation but isn’t great taste wise but powder, boiled water, hiney and lemon are bearable or mixed in with mango or banana smoothie. I find solace in re reading childhood stores - in my case that is Chalet School stories or pony books. Just very gentle and relaxing. I also use a calm cary which delivers a small tens machine like pulse into your palm. It won’t take away pain but could distract a little. Best wishes for this evening and tonight. We are designed to feel more pain at night, seemingly. I hope sleep comes to you.

Nothing to add op, just sending you support. You can do this!

@OldCrohn (Do you have Crohns? If so that’s such a clever username). Thank you so much. Not up to showering or even the hot flannel mentioned earlier but clean jammies are definitely possible. Husband did a bunch of laundry and folded it while I was sleeping. That man saves my life by existing. I feel like I’m even letting MN down now @CoastalCalm @DoYouWantHalfThisSandwich @FlyingUnicornWings @Girlwithavibe @IlovePond @Nomorecoconutboosts @PrizedPickledPopcorn @Puffinsandcoffee @Shakethedisease @TheHatOfHappiness and the rest of you, I’m so sorry. I hoped today would be better but it’s even worse.

You are not letting us down! You are surviving and still trying. That’s a triumph, under the circumstances!
Hang in there. One breath at a time.