I dont know what to do any more

Davidh31

New member
Joined
Aug 30, 2021
Messages
3
My life situation and my symptoms are making me suicidal No one's helping me and I can't care for myself. I live in the UK I've been diagnosed but I can't get any real help. I don't want to live like this any more
 

Jemima

Senior member
Joined
Jul 30, 2020
Messages
456
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi David,

I'm so sorry you're going through this. I know you feel really alone right now, but there are several of us out here who have felt what you're feeling and can be here when you need to talk about it. Please don't give up - it might feel impossible to see it, but it's not always going to be the way it is now. Things are going to get better.

Suicidal urges are something I've dealt with periodically all my life, and the worse period for me was after my fibromyalgia symptoms really got going. My depression was so all-consuming that I just couldn't see my way out the other side, and my brain was constantly telling me the most awful things - about myself, about my situation, and about what I should do. In these moments, we have to try to remind ourselves that deep depression is actually a symptom of fibromyalgia. It's a symptom that can be managed, just like the others. But, I also know that when we're in that place, everything gets warped and twisted, making it really hard to find any thread of optimism to follow. It requires a lot of blind faith, but we just have to hold on, and trust the process with our logical minds until our emotional selves are ready to catch up.

If there's one thing the years have taught me is that every deep depressive episode does lift in the end. That said, it's really important that you do everything you can to help it along. All of the other symptoms of fibromyalgia - the pain, the fog, the exhaustion - are exacerbated by stress, but respond well to self-care. When we get depressed, we tend to ruminate, and we chuck looking after ourselves right out of the window! So, it's important to be proactive and look at everything holistically - and from the sound of your message, focus on your depression first, but with everything else in mind. Believe me when I say that you are more resilient than you think, and stronger than you feel. I believe that people who struggle with depression are hands down the strongest out there, and when you reach the other side of what you're going through you're going to see that in yourself too.

You said nobody is helping you - have you been trying to get help specifically for your fibromyalgia, or have you tried to get help for your depression too? If the former, then I think you really need to reach out for depression support. That might be finding someone you can talk to, looking for a support group, trying medication or supplements - talk to your family doctor about how you're feeling in your mind, not just your body. You can Google resources in your area, or if you want to share with me the broader area of where you are in the UK, I'm happy to look up what local resources you could explore - you can DM me if that makes you more comfortable!

If I can ask, how long is it since you were diagnosed? You also said that your life situation is bad - is that because of your fibromyalgia, or have you got other stuff going on? Have you got friends or family members around you who don't understand what you're going through? If dealing with fibromyalgia is causing a lot of difficulty in your life, then we can certainly advise on how to start to really manage your condition effectively. It's not perfect, and it takes some compromise, but it's really worth doing. As I learned to manage mine, not only did I kick the ass of that awful depressive period, but I also dramatically improved my functioning, pain, and energy levels, allowing me to work and have quality of life again. When we first learn about this condition we read that fibromyalgia has no cure, and it feels like a life sentence - but we have more control than we imagine, and we can learn how to live well while keeping this beast in check!

Some things that you can do right away, even you've got a lot going on: Start doing some kind of short relaxation exercise, twice a day if you can. This could be a breathing exercise, or listening to a guided meditation or binaural beats track on YouTube - the idea is to do something that helps your body activate your parasympathetic nervous system, and turn down the dial on your sympathetic nervous system. Google these systems to understand why this is so vital, both for fibro and depression. If you're drinking a lot of alcohol or not eating well, try to shift to a healthier diet. Also, try to do a little bit of light exercise every day to get your feel-good hormones flowing a little better, even if it's just some stretching. Listen to your body, and rest as much as you can. If you're having sleep issues - which you almost certainly are! - try to do something to help that, like improving your sleep hygiene, and using sleep-friendly supplements. I can talk you through the supplements that helped me if you like, and others can chime in on that too, as we're all a little different! I'll add the caveat that I know doing these kinds of things can feel like a ridiculous drop in the ocean when we're right in the thick of it, but you can look at it as building a foundation that you'll stand on as you start to get better.

I'd love to hear more from you. Feel free to talk to us mad rabble here - ask questions, vent, whatever you need. There are lots of UK members on the forum who might be able to give good advice on navigating the health/benefits system (I'm English but live in Portugal!) Plus, there's a lot more who have gone through the battle of finding steady footing with fibro and depression. Please don't give up - you're a warrior for everything you're facing, and all of this isn't going to defeat you. Please stay in touch!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,466
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
What Jemima writes is excellent, and I cannot add much to it except this:

DEPRESSION LIES.

I have dealt with depression, at times suicidal thoughts, for most of my life.
Depression will tell you things that are not true. That it is hopeless, things cannot ever change or get better, there's no reason not to give up, and may more things.
These are lies.

You never know what is around the next corner. The only for certain thing in life is that everything changes. The depression will change, too. It might get better or it might get worse, but it will change. If you can find in yourself a tiny bit of curiosity about what might happen next, you can put off suicidal thoughts.

One thing I always reminded myself of....and I have told it to others.....is that the possibility to check out of life is always there. You cannot possibly screw up and miss out on your one and only window of opportunity to die. So it doesn't hurt to put it off for a while. Say, six months. See what might happen in the meantime. every time I have done that, things changed and I ended up still here. Just a thought.

Write to us here. We can...and will...help if you let us!
 

Davidh31

New member
Joined
Aug 30, 2021
Messages
3
I'm feeling better than I was when I wrote the original message, i was in a really bad place and I feel a bit embarrassed about it all but I'm really glad you both took the time to reply to me it means a lot.
I've been able to back away from the suicidal thoughts, i obviously feel really low but I'm not in a dangerous place right now.
I have a major problem with bladder pain and i was literally having to use the bathroom every 10mins, i had a test from the dr for infection and my kidney function as ive also been having back pain(i think from lifting weights in an attempt to start getting back into shape, that was over 2 weeks ago now but i seem to have terrible recovery time which I'm guessing is normal fibro stuff) which all came back as normal. i really get quite confused by the fibro symptoms and i find it difficult to know if its normal fibro stuff or something terrible is wrong and i need to seek medical attention. i also seem to have really bad health anxiety and the combination is obviously awful. I have also been using kratom occasionally to cope with the pain and let me do more and obviously its not a very well researched plant despite being used for a long time and i was worried it may be hard on the kidneys hence the above symptoms. i have stopped using it in the mean time, i found it really helpful but i dont want to use anything thats harmful.

I held out a couple days after being told the tests where normal but it was unbearable so I called the doctor again and he gave me some antibiotics, i always get side effects so I'm really reluctant to use it but I couldn't see a better option. I still have the back and bladder pain but I'm not having to use the bathroom anywhere near as much and I just sort of generally feel better. I'm left wondering did I have an infection or was it the attention from the doctor or was it sort of a placebo effect. I'm always so sort of suspicious of myself i need to learn to be kinder to myself I think and leave those more difficult psychological questions for when I have my basic needs covered and at the moment I'm not even close. does it really matter why if I've got some relief even if it is temporary?

I've made some progress with both the social services and the department for work and pensions. the social services came to see me today and we set some objectives, they're going to fund a cleaning company to come and clean my flat which is really great news, I've been living in total filth for a while now. Finding out it will be cleaned so i can have a chance to start again was really emotional for me.

I've also finally been sent the forms and appointments on the phone to be reassessed for the benefits I receive as i had those assessed before i had my official diagnosis. i really want to work but I haven't been able to for a couple of years now and I have to be realistic about having enough money to take care of my needs. I don't know if it makes sense but I've been struggling for a long time without knowing why before getting diagnosed and I've had to delude myself about aspects of my life. now I'm confronting those things its so embarrassing and emotional for me its been quite difficult to cope with. I have Asperger's and emotions can be really challenging for me to process or accept, it also makes it difficult for me to communicate with other people successfully especially in text form so I hope I'm writing in an understandable way.

I've never posted on any sort of forum or message board before in my life and I guess I did it out of desperation but I'm really glad I did. I want to thank you again I'm just so isolated at the moment, my mobility is limited lately and there's just no one to talk to in my life about anything. so maybe I can start to visit here to get some more social interaction and learn from more people with more experience living with fibro
 

Jemima

Senior member
Joined
Jul 30, 2020
Messages
456
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi David,

It's great to hear from you again - please don't feel embarrassed about reaching out in a dark moment. For those of us who have felt what it's like to be in that place, we really understand all the second guessing and vulnerability that can strike. Connecting with others who relate can help a lot, and nobody here is going to judge you for even a second on that stuff. Your messages are very articulate, so don't worry about that either!

The pain of bladder and kidney infections is honestly one of the worst things to be stuck with - it leaves you feeling truly wretched! So, whether the sensations are phantom or not, I really feel for you on what you're going through. It sounds like ditching the kratom is probably a good idea - it sucks if it was helping with the pain, but I'd go for doing everything you can to support your kidneys until this pain improves, and work on the basis that they might be vulnerable even if they're absolutely fine.

You're not alone with the weight training frustration. I have also thrown myself into some really awful flares by trying to start weight lifting again (identity crisis attached!), and it's a conversation that comes up here quite a lot. Having already been checked out by your doctor, I'd also run with your thought that overexertion is behind how much worse your feeling now, combined with cumulative stress. The good news is that this should mean that you can pull the flare back by being extra careful and gentle with yourself for a while. You're totally right to just lean into the relief that you're feeling so far and not overthink it - when we can manage it, letting things go can knock the wind right out of the sales of anxiety!

I'm so happy to hear that you're getting support with cleaning your place, and hopefully financially too. There is no shame in needing help - sometimes we simply can't do it alone with fibro, no matter how much we wish otherwise. As far as deluding yourself goes, I'm certain that we all do that! This is the kind of illness that leaves us doubting our own judgement, self protecting in an unhealthy way by boxing off certain things in our minds, or getting overly self-critical if we aren't careful. Self compassion and kindness is key to moving past these kinds of pitfalls - something you've already identified - so trust that instinct too! It actually sounds like you're doing a great job of working through some seriously challenging introspection. Don't forget to give yourself credit
🙂


With your health anxiety in mind, I'm imagining your probably pretty stuck in a very stressed out state? I had a really hard time with that, and a psychologist helped me pull myself out of it. Stress is just about the worst culprit for aggravating fibromyalgia, and we easily get stuck in a vicious loop where stress triggers symptoms, which in turn trigger more stress, and so everything just escalates.

One of the things that the therapist taught me to address this was the idea of "radical acceptance", which includes learning to sit with our symptoms and recognise them (rather than either trying to ignore them or catastrophising, which were my two default settings!) while reminding ourselves that the symptoms of fibromyalgia aren't a threat. They are horrible to experience, but they don't actually hurt us, so we don't need to go into fight or flight. It felt counterintuitive to begin with, but with practice, this really helped me.

Alongside reading about the parasympathetic and sympathetic nervous systems, the other thing that you might find useful is reading up on psychologist Paul Gilbert's theory of the three human emotional systems. His work centred around our inclination to bounce between what he calls our threat and drive states, and learning how to instead move into a soothe state. You might find it interesting!

This forum has been great for me, and it's always wonderful to welcome new people. Whether we are giving or getting advice, venting or joking, or commiserating with each other through difficult periods, it really helps with feeling seen, understood, and connected. I hope you find that here too, and will look forward to hearing from you in the future!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,466
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
David...

There's nothing I can say that would improve on what Jemima has said. Her post above covers everything I would say and more. So I will second all of it.

I used to lift weights as well and getting from there to being accepting of the fact that I no longer can really do that (only with the lightest weights, nothing over 5lb, which is not at all satisfying as anyone who has lifted knows), has been a very long and difficult process. I got through it, though. You will too.

Don't be embarrassed. I fully understand that as well, but we have been there, and know what it was like for us. We are here for each other, and for you. The truth is, speaking for myself, doing what I can to help others on this forum helps me as well, so never be reluctant to ask for help.
 

seniorzala

Member
Joined
Mar 18, 2020
Messages
18
Reason
Relative
Diagnosis
02/2020
Country
HU
State
ZA
Davidnak
Urologiai -kismedencei vizsgálat történt?
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
269
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Hi jemima 💋 tomorrow I have a hospital appointment it’s the type of 1 I hate 😡 so cos I don’t do well with travelling I’m staying somewhere nearby +guess what, I’m right by a stall that sells the most AMAZING doughnuts, they all warm and full of cream and they stick a flake in the middle of ithem 🤤 tempting as it is I’m going to take the backroads😁hope your ok speak soon x x x
 

Jemima

Senior member
Joined
Jul 30, 2020
Messages
456
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Aww, amazing. That's a will of steel!! Good luck honey. I know how strong you are, and that you can handle anything the universe throws at you - because you've got magic in you! See you on the other side 😘
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
269
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I don’t why your name is grumpy git, your really funny, I like funny+ I’m tough to make laugh 😂
 

Gardener

New member
Joined
Jul 14, 2021
Messages
8
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
My life situation and my symptoms are making me suicidal No one's helping me and I can't care for myself. I live in the UK I've been diagnosed but I can't get any real help. I don't want to live like this any more
 
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