Living with PTSD (Potentially Triggering Material)

Hi @Former-Member - I am feeling a bit better, have just had a 6 week horror stretch. Often happens when I am in therapy, but then... it happens when I am not too. So there you go.

I live with Cauda Equina Syndrome what a nightmare, following a very nasty prolapse of the intevertabral disc between L3/l4 - it compressed my spinal cord from L2 to L5 and caused both bladder and bowel incontinence.) I was overseas in a deeply rural area of a developing nation working, when it happened and it took two weeks to be medically evacuated home, then a futher week of docs appointments, MRI's etc before I could see the specialist. He took one look at it (on Thursday at 4pm slotting me in between patients) and had me on the operating table the next morning. I luckily had some response to the decompression and laminectomy - but do have permanent nerve damage - parastheia below the knee, luckily the incontinence did resolve somewhat but still a bit challenging (no catheterisation or stoma required) and live with chronic back, saddle and leg pain.

All of this hapepend about 5 years ago, it has made my mental health and sense of 'hope' much worse. But I am a resilient bunny and get up again every time I fall.

I am currently dealing with a demented Mum who has just moved into permanent care in June, dealing with her and my family has raised a heap of issues from my childhood that I have kept carefully hidden and soundly ignored and I have been so fortunate to have such a great crew here on the forums to hold my hand, reality check with and to just stand with. I haven't been around much for a few weeks because I didn't feel that anything I said could be trusted nor was I very communicative. I am a bit hypomanic now (in a mixed state hypomanic/depressed), which is when I tend to talk, mmm, ALOT. 🙂 But I am pretty together really, lucky gal to have a loving partner and safe living environment..

I live with Bipolar II and OCD, Anxiety as well as cPTSD, so have my head and hands full with various packets of mixed nuts. 🙂

Thanks @Former-Member - you're right of course. I too tend to struggle a bit if I miss meals.

Would obviously prefer not to do that, but circumstances dictate that.

I had another longer day than intended yesterday and again missed out on lunch, and probably suffering as a result today.

I hope you're doing okay today?

@MoonGal - You really have had a horror 6 weeks havent you? I can related to that I guess because when I have been in therapy on a weekly basis, life is pretty horrible for me too. But as you say I also have my moments when I'm not in therapy as well. Like now.

Oh you poor thing, that is far worse than I had to endure. How frightening to have to go through all that in a remote part of the world. I also suffered a couple of badly prolapsed discs - mine are the L4/5 and the L5/S1. I never had an operation however, as my bowell and bladder was not adversely affected. For me it was mainly nerve pain and muscle atrophy. I could not walk on my left leg for about 6 months. It did improve in time with conservative treatment. One specialist said I needed a laminectomy and another one said it would make little difference to the pain as the nerve damage was permanent. And given the risks of surgery and the fact that I had heard of these operations going wrong and people being worse off afterwards, I continued with conservative treatment.

So like you, I do have permanent nerve damage, parathesia down the left thigh, constant back and leg pain to varying degrees, and also stabbing pain right down the entire leg and the foot. And given that the discs remain unstable there are times that they get themselves out of plumb and I find myself in agony and unable to move a muscle without intense pain. Those are the days I cannot get in or out of bed and crawl around on all fours because I cannot stand up. Barely able to breath without going into severe intensely painful spasms.

So I also continue to live with chronic pain. Life is literally a real 'pain in the butt' at times, as well as being very restrictive. Prior to my injury I used to play a lot of sport, now I cant do any at all. When I am at my best I try to do Pilates classes under strict supervision, but more often than not, I cant do that either. Fortunately my weight has never been an issue, as if I put weight on it would make things that much worse.

My injury happened 3.5 years after my rape trauma which occurred 20 years ago. And it made my PTSD that much worse as well. I had been using my work and my sport as a coping method for my PTSD symptoms. When I suffered my injury I was unable to work for 6 months at all, and since then I have only ever been able to work at best, part time. And sport is now out for me. So I lost my best method of coping. That was really tough for me. And its then that I started to develop OCD, which became my new #1 way of coping with the symptoms of PTSD.

Moongal I am really pleased that you have found such sound comfort and support through these forums and the following of lovely people you have gathered around you.

I find that I have high anxiety ALL the time from my PTSD, but it is during the times when my back and leg pain becomes really bad that I seem to fall into Depression as well and thats when I start having suicidal thoughts. And I worry about that, even though I am confident that I would not follow through. But just the fact that my thoughts turn so easily to that state of mind, is worrying.

You are very lucky that you have a loving and supportive partner and a safe living environment, that must be a great feeling. You do seem a very resilient and 'together' gal, despite all that life has thrown at you, and I admire you greatly for that.

Thankyou for telling me your story, it makes my own seem somewhat insignificant somehow. There is always people worse off than ourselves isnt there? Its always good to be reminded of that.

Hey @Former-Member, I am SO sorry with what you live with too, hard yards. But I want to say something and hope you hear me...

You said "Thankyou for telling me your story, it makes my own seem somewhat insignificant somehow. There is always people worse off than ourselves isnt there? Its always good to be reminded of that. "

My lived experience and your lived experience are not so different, but even if they were, I tend to shy away from shrinking or thinking what someone else lives with somehow diminishes my own lived experience. Likewise I quail inside if someone reads what I write or hear my story and switch and minimise there own experience in comparison.

Your lived experience, grief, losses, PTSD, loss of sport, loss of safety all of it is hard yards lived. I salute you for still being here 20 years later with a gift to write, a lovely sense of humour and a clear self-mandate towards self-care.

I stopped saying things like "there is always somone worse off than me" and I refute the self-silencing and lack of self-empathy that engenders in me. It's like saying to myself (or having someone else say) Suck it up princess! That is a huge flag to me that empathy has walked out the door (either my own towards my self or other's toward me or whomever they are addressing).

So I do hope we can agree that I am as astounded and feel as deeply for you and your lived experiences of injury and pain and trauma - as you do mine. We resonate I think because we have similar stories. I do hope going on we can be on an equal care-field, because we are both awesome, resilient survivors. (As are all my friends here!)

💖

Thankyou so very much @MoonGal I really appreciate what you just wrote. Its brought a flood of tears, but they are kind of happy tears. Like someone understands. And thats a nice feeling.

@Former-Member, 💜 I am so glad that my empathy post connected for you. I think we are tribe. 💜

I am very fortunate not to have muscle wastage as part of the constellation of my physical problems, I have avoided that one. So sorry to hear of your muscle loss and bad limp. I used to feel embarased by my limp , now I think it is something that shows I lived an interesting life. 😷

As to the physical extent of the aftermath of the Cauda Equina/prolapse... The moment my surgery scar healed I started swimming and aqua-excercising. I was in the pool every day - and I would walk the half length of the pool 20 times up and back (250 metres) hanging on to the side for balane and swim freestyle 40 full laps (4 kilometres) a day, modified to a very small kick as normal kicking this made my pain worse. It conincided with a hypomanic period so I went for it hell for lather for 3 months! <some good things come from being nuts). As the swelling and imflammation receded I did get a few points of feeling back into the sole of my foot. I clearly remember the day I realised I had feeling in the sole of my foot again, I got out of the pool and those non slip tiles with the big nodules the size of 20c pieces all over it and I FELT the tile, I burst into tears!

Before that walking was really difficult as I had to visually check my foot touching the ground and lifting I walked with a forearm crutch, I was determined to get rid of the crutch because I have dogs and walking a dog with a crutch is difficult. I eventually stopped using the crutch after about 6 months. Sometimes I wish I still used it because I suspect my limp would not be so bad with that extra support, and limping is bad for the lower back, it's a vicious circle,

I have a slight drop foot/drag that gets worse when in a flare up or very tired and constant heightened ankle pain, because the anesthesia affects my knee I don't have knee pain in that leg any more (small mercy but I can tell by swelling that it is having a hard time if I have done too much walking). I too have a very bad limp that gets worse when my back is in spasm (like you say a literal pain in the butt). Some days I am beside myself with pain, but recently I have started using pain patches again (not allowed to mention medication types here though) and that has helped the muscle pain enourmously . I also have forminal narrowing at L5/S1 and my S! joint is unstable so the sciatic nerve is compressed (which is a different issue to the causa equina). My shin bone is totally numb (parastehsia) and the two muscles either side - the tibialis anterior and soleo - react with allodynia (painful to touch out of proportion to the touch). I also experience neuro-things like sharp pains (on top of the constant pain) in my shin bone, bottom of my foot, inner thigh and saddle area.
That suck-the-air-in-sharply feeling. The worst thing though was the total and permanent numbness, a loss of feeling in my, ummm, lady parts (the word is prohibited, starts with c ends with s).

If I accidently rotate my spine from right to left I lose my left leg all together and fall down. I have learned to sleep on my left side, knees together slightly drawn up - it is rare for a rotation to happen but when it does, like you it flares everything up. I use a TENS unit (this one) when my back is acute or in spasm and it is amazing. I went overseas in 2015 and used the TENS everyday and it helped alot - as it was a road trip I was in the car alot but as a passenger which is not as hard as driving. I find more than 20 minutes driving (or sitting, or standing, or walking, LOL!) really impacts my nerves. I use a mesh back support in the car and used to use it in my typing chair but it broke I really NEED to get another one!

Every one is different depending on which of the myriad nerves in the Cauda Equina were permanently damaged.

I salute you for your tenacity and keeping on keeping on with work. I worked for another 5 months after my back injury and surgery once I went back to work, then was made 'redundant' (long story there) and I tried over the following two years to work office jobs, but always fell over at the three to four week stage. Eventually I had several consults with my Doctor to determine if some of the other pain issues I was having could be resolved, this resulted in a full hysterectomy and double oopherectomy in 2014 (after which I went throughly nuts for 6 months post surgery) I eventually withdrew from the workforce as I was an 'unreliable employee" in late 2014. I do a bit of online volunteer work for a small NGO - web & graphic design work now and keep house. Vacuuming is my worst enemy! I read alot of books and spend too much time in FB. I would love to start swimming again but developed bursitis in both shoulders in 2013/2014 so can’t do freestyle or back stroke anymore. 😢

Oh wow, look at that... I went on and on 😃 you asked! 😏