Lived Experience Forum

[daybyday_]

My whole life I was a fit, healthy and mostly happy person. However at the very start of the year, at the age of 29, an incident out of my control occurred which has now left me with severe, chronic and debilitating pain in both of my legs. I struggle everyday not to break down, not only reminded by my pre-pain life, but how this now impacts my current life so heavily. 

My emotions and thoughts jump from anger from the situation wishing I could go back in time and change things, depression over my pain and anxiety over the future. How one decision, one second and your whole life can change. 

While I am surrounded by friends and family, I also feel more alone than ever. I go from not wanting to talk about the pain and try and pretend it’s not there, to having complete breakdowns all alone because I can’t come to terms with the situation.

it is physically and emotionally draining going to constant doctors, specialists, doing more tests to hear the same things, with nothing really minimising the pain. 

as shit as the circumstances are, I still try very hard to be positive. Even saying that though, it is hard to be positive, but I am trying. I would be comforted to know if anyone has gone through anything similar, or lives with a chronic illness that causes pain to everyday life and how people stay positive, stay strong, manage day by day and stop themselves from falling deeper into depression.

[tyme]

Hi @daybyday_ ,

I'm hearing you. Thank you for reaching out. I'm hearing how had things have been, yet you are pushing through as a way of coping. 

I'm sorry to hear about your injury. I read that there are times where you grieve the life you once lived and compare it to life now. This is only natural. Grieving is a process. There is not timeframe for this process.

As much as you are staying positive, I read that you cannot deny the fact that thing have changed. I hear how lonely and isolated it can be, even when there are people all around. 

Do you have professional supports you can talk to to help you process some of this? 

When I read your post, what came to my mind was the idea of Radical Acceptance. That is, to accept the things that cannot be changed. I'm not sure if this website will be helpful in explaining what I'm tryign to say.

I just really want you to know you are not alone. Everyone experiences loss at one point or another. In my early days, I remember scrolling through social media and seeing people 'move on' in life and think to myself how 'happy' they were. This brought a lot of sadness in my life. It took a long time to stop longing for the things others had so I could focus on the things I had in the moment in case it also passed without me realising. 

Hun, please know you are not alone. I can totally resonate with what you are saying, and I just want to send you a warm embrace - because you are worth it.

My heart goes out to you.

[D1ng0]

Morning @daybyday_. I can definitely empathise. I also live with chronic pain. I really feel for you. It's so, so draining and difficult in itself, let alone adding the strain of healthcare coordination. It takes a lot of grit and strength to do what you're doing. I've found that many people don't appreciate the energy we put into healthcare, or don't appreciate how exhausting it is, so I want you to know that your efforts are appreciated by me.

I also experience the mood swings you referenced, and what I view as "hope swings," when I go from being optimistic to being completely despondent. From what I've learned about chronic pain in a quest to understand my own condition, those swings are typical. It doesn't make them easier to deal with, but you're definitely not alone in what you're facing. Chronic pain is experienced by so many people, and it often touches every part of our lives. Swinging from one extreme to another is normal. If I can offer you any advice, I'd recommend avoiding the coping mechanism of pretending the pain doesn't exist. For me, that was a very harmful mindset. It was/is a part of my hope swings. I'm still combatting it.

I won't pretend to have all of the answers. I am extremely depressed. I think that the most we can do is keep seeking support, be kind to ourselves, and absorb the reality that chronic pain recovery can be a long journey. You may fall deeper into depression, as I have. It doesn't mean there's no hope for you personally.

If you are surrounded by friends and family, definitely confide in them and keep those relationships alive. I have practically zero support from friends and family, and it's made my pain worse. Definitely reinforce your support network, and be honest with loved ones about how much pain you're in. That means you're being honest with yourself and others. That lets others know what your needs actually are.

I hope you're doing okay, this morning.

[SkySeeker22]

Hi @daybyday_ 

I can't totally relate to your situation, but I know how it feels to have an incident out of your control turn your life completely upside down to a place where you never even imagined you would end up.  The constant appointments with Doctors, specialists, rehabilitation etc can be so draining and while each of these professionals have notes and records on your case, having to explain things to people who should know better can make you feel unheard and unsupported.

Something that helped and still does help me get through the really tough and draining days of having to deal with all of the appointments is setting out a small window of time in the day just for myself.  A time I know where I won't be interrupted by anyone or anything and can just do something just for me.  When I struggled to get out of the house, this may have just been washing my hair to make myself feel a bit nicer, or sitting down with my cat in the sun with a cup of tea.  Whatever it is, block this time out in you calendar/diary/tell people you are unavailable and do something just for you.  I found this really helped me with feeling that I had control over something in my life, until I gained the strength to slowly take back control of other things, to build back a somewhat normal life.

I also think its important to allow yourself time to grieve the life you once had, and recognize that although your life is different now, there will still be aspects of yourself and your past in the person and life you now are and will be in the future.

Is the pain something that you can ask your doctors about getting more of a handle on?

I hope my ramblings are helpful to you

Warm regards

SkySeeker22

[Asgard]

Hi @daybyday_ 

Read your story and it certainly struck home for me in a roundabout way. My dad was diagnosed with MS at 38 and went from being a very active guy with 5 very young children to a guy who was now reliant on two sticks to get around.  I remember asking Dad how he and Mam coped back then.  They were very philisophical, they didn't know much about MS back then, but they knew they had 5 kids to care for.  Dad said Mam allowed him to cry for what he had lost for 2 days, then after that it was all about living the life they could lead whilst living with MS.  He said it was all about acceptance, you can't live in the past with "what ifs", the cards have been dealt and its up to you how you take it from there. 

So glad that you have a good support structure around you, they become the framework of your new life.  All the very best  🙂