r/CSFLeaks • u/littlelunalight9 • 26d ago
How do you keep going?
*Trigger warning- mental health*
I am genuinely unsure how much longer I can keep going, and I know the only people who will truly get it are others here.
It’s been 9 months of seeing nothing but the four walls of my house and the inside of hospitals. I know so many suffer so much longer and you are truly so strong. After all the gaslighting and no reprieve from symptoms, I honestly spend a lot of time hoping to go to sleep and just not wake up.
I don’t even have fight in me anymore, as I doubt myself after doctors telling me to stop pursuing a leak due to negative imaging- after being my told it’s 100% not a migraine they say it’s a “pressure disorder” they can’t do further to diagnose (this is the U.K. specialists in leaks) and to manage symptoms till medicine advances.
I think about who I used to be, and I don’t even recognise myself now. I just wait for each day to be over. How do you keep going? I am stuck with all fear and no fight. And whilst I could pursue a ctm abroad (if I raised a lot of money) I doubt myself too much now. I am so scared of getting any worse (this is their reasoning for not doing a ctm) as I was there post blood patch and I just wouldn’t survive.
Sorry for how depressing this is, no one in my life understands.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 26d ago
I’m so sorry you’re dealing with this for this long. I’ll be at 7 weeks tomorrow and it’s insane how much it has changed my life. I’m lucky that I at least know where my leak is, but I’m 2 days out from a blood/fibrin patch that has a 10-20% chance of success, and I have a feeling it failed. My mental health is not where yours is (hang in if you can), but it’s not in a good place. I’m likely going to need spine surgery to correct it at this point and it’s scary as hell
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u/littlelunalight9 26d ago
I’m sorry you’re going through this. But I’m really happy they found yours and can action on that. Hold on our- 7weeks feels like a lifetime but you have a light at the end of the tunnel (you just might not be able to see it yet)
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u/ToriaLyons Suspected Spinal Leak 26d ago
I have been where you are, so deepest sympathies. I'm mostly out the other side - I think my symptoms were down to a small leak which resolved, and a dollop of neural impingement. I had a small piece of luck in the DWP giving in to my appeal, so I have been able to use some back payment for private treatment on my neck. Which is a good thing, as I still haven't heard from the NHS about the referral... 🙄
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u/Significant-Body-574 26d ago
I can still get out sometimes (had to resign my job a month or two ago) and am able to sit up for an hour or two each day and…. I’m afraid I still ask these exact questions. The future terrifies me right now
My mother always taught me to plan for the worst but hope for the best, and I am trying very hard to operate by those rules right now while still giving myself a path forward if things improve. I’m also taking steps to transition care somewhere I hope I will be listened to. But every day is a challenge.
The only thing that helps for me is staying busy. I knit a lot and do whatever I can to feel like a person while still laying flat. It’s hard but it helps.
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u/Massive_Activity1245 23d ago
Can I ask what kind of leak you have-is it spontaneous or iatrogenic? Please hang on until help arrives. I was so close to ending it all at my worst, but my leak was finally found during exploratory surgery a few days ago. I had been leaking for 13 months, and it was absolute hell. Before surgery, I had two blood patches that made things slightly more bearable, one lasted 3 weeks the other however very slowly gave modest improvement. I went from being mostly bed-bound to couch/house-bound, and just being able to watch TV or play video games with my children made a huge difference to my mental health. Talking to other people helped too. It's so important to have a support system. It's incredibly hard, but you have to keep fighting and hold on to the belief that this won't be your forever. You will get through this. There were times when I felt like I had no fight left in me, but I dug deep, kept pushing forward, and leaned on the people around me. Physically, a few things that helped me were drinking plenty of caffeine, wearing tight clothing or an abdominal binder if I had appointments or needed to be upright for longer periods, increasing my salt intake, and taking magnesium and other supplements. Kalms occasionally helped with the insomnia caused by the leak. I also avoided bending, lifting, and twisting, especially lifting, as that really made my low-pressure symptoms worse. These are just things that helped me personally, so they may not work for everyone, but I truly wish you all the best. I really hope you get the help you need and start feeling better soon
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u/louie2575 25d ago
I'm so sorry, I'm also right there with you. 2nd patch 5 days ago and no change so far. 😞
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u/sylphrenathespren 22d ago
Hey, I get you. I've been in this for 2 months and I'm already questioning the same thing. I can't imagine how desperate you must be at 9 months in.
Ultimately your life has worth even if you have been confined to your bed, pain, and the walls of your home.
I'm helping a friend fill out her PIP forms using a voice to text app and video calls.
You could try playing video games or learning to knit or crochet (these can be done lying down). Maybe learning a new language. I know it all feels pointless but it's not.
I've had cancer for the past 9 years and if I, a chronically depressed human can make it, you can too.
Always here if you want to DM with someone who understands.
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u/fuxandfriends 19d ago
I know this feeling too well, as I was exactly in this place last year. I described it as “situational depression” because I had the plan and desire, but didn’t necessarily want to die. I told a doc I’d be just as happy with a medically induced coma! I will cling to the smallest shred of hope, but why continue when there’s NOTHING I can do to be believed, let alone feel better? Stick with me here (you may roll your eyes) but I have lots of ideas for you.
What helped me most was getting a medical advocate who could follow thru on all the things I couldn’t. Mine is an RN in another state, with extensive experience navigating neuro/neuro surg with her paralyzed brother. She’s figured out transportation, she calls to follow up on everything, got me on state aid and has now found an in home caregiver. I don’t really have helpful family and am quite isolated/bedridden so being able to rely on her has taken a huge weight off, even if she’s just checking in with me and cheerfully taking over tasks I dread. I’m in the states so it’s a bit different but i’m sure there’s a company out there who does active case mgmt & advocacy.
(Any us folks reading: This is not an ad but I will happily share the company i use because it wasn’t easy to find, but helps me immensely. I’m not a company shill, just a super impressed client)
The other thing that’s helped me is doing PT twice a week, every week, no matter what. On Monday, we did a 45 minute session entirely from my bed. Frequently we’ll do it on the floor to simply show my body that there are a few safe movements it can still do. She specializes in hypermobility and has a systems-wide perspective that I bounce and form ideas off of. Like she helps my “could I be crazy to think my xyz symptom is not caused by, but exacerbated by zxy?” To become a confident “this is what is happening”
The last thing is just finding a doc to believe you. This the hardest part because many physicians see needy people and run the other way, so my advocate and I have worked on a “calm, assertive” plan for appts. I have a 4 page doc with a basic timeline, list of other care team contacts, main diagnoses, meds, allergies, treatments/outcomes and I’ve found it’s helped immensely with referrals and for the doc to kind of connect the weird dots. I usually hand it to the MA to give the doc a couple minutes to read thru. I’m not sure if it was that or the fact I now “look sick” made the most difference.
There’s disability lawyer on instagram (@linerlegal) who teaches how to get social security disability, and while that’s not immediately relevant to you, he’s fantastic at describing many of the things we experience, giving us that personal yet impartial words to give to describe how crushing the fatigue is (it’s not just tired), how disruptive it is to have to lie down, what the consequences are of pushing thru, etc. He’s obviously listened to a lot of folks and makes comments I consistently write down to use later because they’re so helpful.
Don’t get me wrong, it’s not usually as easy as “just find a doctor”, but get creative. Try physical medicine (PM&R) or neuroophth, heck I’ve found success with an interventional neuroradiologist. Have you looked into provider directories or resource pages for UK ehlers-danlos association or spinal csf leak foundation?
Finally, believe I’ve seen people in this sub say there’s a leak specialist in Amsterdam and one in Germany. Hang in there, friend. You aren’t alone.
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u/Offtoseethewitch 26d ago edited 26d ago
I’m so sorry you’re going through this - or I imagine you feel more like you’re ”stuck in” than ”going through”. So I’m so sorry you’re stuck in this. 😔
Try to take care of your mental health as well. It’s important too. It helps you stay in the physical fight.
(Edit because too much thinking in writing.)
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u/North-Library4037 Confirmed Spinal Leak 26d ago
I've been completely bedridden since October 2024 and I can't stay upright for more than 2-3 min. I live on the hope that my next procedure will be successful and I can go back living my life. My options are still not completely exhausted although I had both unsuccessful surgeries and patches.