Struggling

[Maca22]

Hello. I’ve turned to this site in the hope of getting help by chatting with people who may understand what I’m going through. I’m a 60yo disabled man due to spinal damage resulting from a broken neck 43 years ago. It left me as a partial quadriplegic, I can walk but with a limp, my hands are effected but I’ve been able to cope. Recently I was accepted by the NDIS thinking they will be able to help me with my health issues and living issues I’m having. They haven’t, it’s made my life even more stressful. I’ve also been diagnosed with PTSD and depression and have panic attacks. I’m also having health issues with chronic back pain and losing the use of my left leg which means I’ll be in a wheel chair soon. I’m also losing what little use of have of my hands. This means I’m going to need constant care. I’ve lived an active life even though I was told after my accident that ‘I’d never walk again’, All I heard after my accident is ‘you can’t do that anymore’. I proved everyone wrong, I’ve lived a normal live and done things against Dr’s opinions and believe, things like riding motorcycles, racing go karts etc.
A few years ago I noticed it was getting more difficult to do things, pain levels increased and my emotions changed. I went from being active and never sitting for long to now not leaving the house unless I’ve no choice. I get panic attacks when I have to go out, I’m in constant pain and rely on strong pain medications for relief. I have waves of emotions that I can’t stop, I constantly feel like I don’t want to be here anymore, I’m angry all the time, I get annoyed very easily, I find myself crying for no reason.
The Drs just keep giving me more anti depression meds that don’t work, more pain medications that are morphine based and highly addictive to control the anxiety and panic attacks.
While I have not thought directly about committing suicide I constantly feel that I’d be better off if I was not here anymore, I go to bed hoping I won’t wake up,  I have a close family and good friends who have all been wonderful and cant help enough they are all concerned but I feel I don’t deserve their care or help, I feel worthless and useless. I don’t want to be here anymore!

[Sophie_M]

Hey Bambie, 

Welcome to the Beyond Blue forums, it's a pleasure to have you here.

If you need help learning how to navigate the forums we'd recommend reading our FAQ's here: https://www.beyondblue.org.au/get-support/online-forums/welcome-and-orientation/the-forum-faq-thread...

If you are seeking support for your own personal issues, it is best to create your own thread. If you are unsure how to create your own thread, please read through the FAQ's above.

Looking forward to hearing more from you!

[Maca22]

Hello,

I’m back in the black hole, had a bad weekend with waves of emotions and last night started to have thoughts of wanting to die. I just didn’t want to wake up. At 2 this morning I started to write down how I was feeling. When I got up this morning I talked to my wife about it, she understands better than anyone what I’m going through but feels helpless about it. I assured he that even though I have thoughts about dying I would never carry it out. I told her I’m not frightened of death, I just won’t do it deliberately as I would never put my family through that. I have had several friends who committed suicide and I saw what that did to their families, I will never do that to mine.

She talked me into doing some gardening, we lasted 90 minutes, I struggled the whole time. Every time I move it’s an effort, my legs feel like lead, I barely had the energy to stand. Now I’m exhausted. Tomorrow we will try it again.

All the things I used to like doing in the yard have now become a burden, I just don’t have the energy any more. I just feel like it’s my time, I’ve had a good life but now my body is worn out. My neurologist told me I have the body of a man in his 70’s, I’m 60. He wasn’t being mean just stating that due to my injuries and disabilities he’s amazed at what I’ve accomplished, unfortunately it’s come at a cost and now it’s coming back to bite me. He said with the amount of damage to my spinal cord I shouldn’t be walking and the whole area around the damage is now starting to ‘die’ he had a medical term for it but I don’t remember.

I saw my Pain Management specialist and apart from recommending different pain medications he said there is nothing more he can do for me. It’s becoming more obvious that the medical world don’t have any answers, I don’t think there are any answers. My wife has been saying for years that Drs put me into the ‘too hard basket’.

Seeing my GP in 2 weeks to get a referral to a physiologist or physiatrist, not sure how long it’s going to take to see somebody but I expect it will be months, hopefully it will do some good.

cheers 😞

[Sophie_M]

Hi Maca22, 

We are really sorry to hear that you are not in a good way right now, it sounds like you are feeling the symptoms of your depression at the moment. We think that it is incredible that you have been able to make an effort to do some gardening today, it can feel almost impossible to fo these things so congratulations on giving that a go. 

We notice that you have said you are having thoughts of suicide, if you ever feel unsafe please call 000 straight away. 

If you want to talk to someone about these feelings and have someone help you process them, or simply sit and listen, you can always call us on 1300 22 4636. 

It sounds like you have a number of supports and strategies for when you are feeling this way like writing down your feelings, getting excercise and fresh air, and talking with your partner. Please try and keep these going as they are fantastic ways to make us feel more like ourself. 

Thank you for posting here on the forums and for being brave enough to share your story. 

Kind regards, 
Sophie M

[Petal22]

Hi Maca22,

Sorry you had a bad weekend…. I understand the intrusive thoughts but just remember your not your thoughts but the watcher of your thoughts……. Have you ever tried meditation? Do a guided one for learning to watch your thoughts…. It takes practice but it’s great once you get the hang of it…… I believe meditation got me over the line………. You can learn to just stand back and “ watch” your thoughts……….

Welldone for giving gardening a go maybe tomorrow set a goal for 10 minutes and then sit down and watch something you enjoy on u tube or tv……. Just do what you can do and then have a rest….. that’s ok…..just know your limits and rest when you need to…..

I understand what the doctors said to you in regards to your body being more older than you actually are…… maybe your body is older than it should be but your mind isn’t….just focus on things you can do and enjoy like spending time with your beautiful grandkids and watching them grow up…. Maybe go for a drive with you wife….

I understand your wife feeling helpless but all she can do is support you and I can see she is doing a good job at that, I know when I went through OCD my loved ones didn’t really know what to do because they hadn’t been through it themselves as long as they tried to understand with no judgment and gave me hugs I was happy….

Thats great you are seeing a gp in a couple of weeks hopefully it won’t take too long to see a psychologist…

Hang in there, tomorrow will be a better day……. Take it a day at a time… 😊

[Maca22]

Update:

Been ok last few days. Having Physio twice a week which helps. Seeing GP next week to get a referral to a psychologist or psychiatrist.

Did some gardening yesterday and mowed the lawns this morning. Now out of breath and have absolutely no energy left. Wife said that’s ok, I’ve made a start and try to do a little each day. I noticed while mowing the lawn, all the things I used to enjoy doing I now find tedious and a chore. I have no drive. How do I get that back? It’s a real effort to walk and each step is painful. How do I put the pain to one side so it doesn’t control me and my ability to function?

I’m not looking for answers here, just putting my thoughts out there. You all have been so helpful and I appreciate how you have taken time to respond. Thank you.

[Maca22]

Update:
Been ok last few days. Having Physio twice a week which helps. Seeing GP next week to get a referral to a psychologist or psychiatrist.

Did some gardening yesterday and mowed the lawns this morning. Now out of breath and have absolutely no energy left. Wife said that’s ok, I’ve made a start and try to do a little each day. I noticed while mowing the lawn, all the things I used to enjoy doing I now find tedious and a chore. I have no drive. How do I get that back? It’s a real effort to walk and each step is painful. How do I put the pain to one side so it doesn’t control me and my ability to function?

I’m not looking for answers here, just putting my thoughts out there. You all have been so helpful and I appreciate how you have taken time to respond. Thank you.

[Petal22]

Good morning Maca22,

Lovely to hear from you…. That’s great that you are going to physio I’m glad it’s helping you……. Have you ever tried exercise in the swimming pool?

Im glad your gp appointment isn’t far away I think it’s wonderful you are going to see a psychologist/ psychiatrist…..

Gardening would have been nice just set small goals do gardening for 10 mins then have a rest……. If you feel yourself tiring stop and rest…. Listen to your body…… mowing the lawns I can understand how it would use your energy……. Have you thought about getting a ride on lawn mower? You can still be outside mowing the lawns enjoying being out there but not having so much pain from pushing the mower….. I reckon it would be fun too 😊 even with the gardening I don’t know if you have a big property but you could invest in a gofer or an electric push bike….. it could get you from A to B easier while preserving your energy….. maybe buy some longer gardening tools so not as much bending is needed…..

You will get your drive back …the more you get out and do things every day the more you will start to enjoy it… it creates motivation the more we do things every day they become a habit….

I understand it’s painful to walk…. Maybe just do a little bit, but really look into investing in some electric things for you….. motorised push bike ect…… you could even go out with your wife on walks.. she can walk and you ride your motorised push bike or gofer…… saves the pain but you get to enjoy doing things together…….. you can even do a gofer up in your favourite footy colours? It could be fun designing.. the grandkids would love it…

I enjoy chatting to you Macca22 my friend, I’m so glad you have found our forums helpful 😊

Have a lovely day…. Keep pushing forward I know you will…… “ what lies behind us” and “what lies before us” is NOTHING THAT LIES WITHIN US 💪

Please keep up dating us I’m always here to chat to you😊

[Petal22]

“ What lies before us” and “ What lies ahead of us” is NOTHING COMPARED TO WHAT LIES WITHIN US 💪

[Maca22]

Me again. Been going ok, good days and bad, pain levels have been really good so the bad days are from emotions.

The panic attacks are coming more often but not as severe as in the past, I find that I’m taking more medications to calm me down. If I don’t take a pain killer or the medications for spasms daily I get very agitated, shakes and everything and everybody annoys me. I wake up feeling good and even felt happy for the first time in years, but by lunch time I’m a mess until I take something. It doesn’t help that I have no privacy and can’t talk to anyone on the phone without get multiple questions about who was that, what were you talking about etc.

I’m worried that I’m now dependent on medications and don’t know how to get off them. All the Drs I’ve seen in the last 12 months have prescribed more tranquillises, more opioid based meds and more anti depressants.

All my medications have been approved by my GP and pain management specialist.

When I did mention to them of my concern about becoming addicted they both said the same thing ‘I’m on such low doses and I’ll probably have to take them for the rest of my life anyway’. The specialist told me to take one medication every day even if I have no pain, he said it builds up in my system which keeps the pain at bay. Neither were concerned about me becoming addicted so I have to trust them?

Im seeing my GP on Wednesday to get a referral to a phycologist or psychiatrist hoping they can help me.

I’d like to find help with the panic attacks from other people who have or used to have them. They would be of more help than any Dr, phycologist or psychiatrist.

I’m hoping to find something similar to group therapy but obviously this won’t happen until after the lockdown, I don’t even know if such groups exist.

More to follow.

[Petal22]

Hi Maca22,

Nice to hear from you and thanks for the update 😊

Thats ok, you will have good days and bad days…. Eventually the good days will out weigh the bad days….

Thats great you have woken up happy that’s awesome ! I understand with your pain that as the day goes on you would get agitated….. take your medication as you need it when you need it….please don’t deprive your self of your pain medication if it helps you great! Just learn to manage your medication…… I understand you get worried about becoming addicted and how you are going to come off it but please don’t worry…….. as your specialist said you probably won’t come off it so don’t worry , if it gives you a better quality of life that’s great…… your medication has been approved by pain management specialists so just try not to worry…..

I understand how you become annoyed at people asking you questions about phone conversations just give them a smile….

How exciting your seeing your gp on Wednesday for a referral….. I’m sure they will be able to help you…..

I used to have panic attacks……. they were horrible! I suffered with severe anxiety OCD….. this disorder came with severe anxiety the sensations going through my body were extreme…. during a panic attack everything went so fast…. My heart would race id sweat…..my mouth would be dry….I couldn’t focus they were very scary..

I actually did a group therapy…. I did metacognitive therapy for OCD this therapy really changed my life…. I learned so much from it…. as I learned this therapy I stopped having panic attacks because I learned all the things that were leading me towards one…. I learned to disengage from the cycle I was in…… Ive now recovered from OCD…

Doing a group therapy was great because there were Another 12 people in the therapy with the same condition I felt less alone….

I think it would be great for you to do a group therapy… maybe see if metacognitive therapy is a fit for you?

The things that helped me during a panic attack was trying to keep my attention on the present moment and not inside my head….. really taking in your surroundings and really listening to a conversation….

Mindfullness is great

Practice slowing down your breathing……

Put your attention on your breath when your mind wonders bring it back to the breath…. Use your breath as an anchor….

Im here to chat 😊