Regaining control of my life.

[Ampersand]

Hi,

I’m not even sure where to begin here. I’ve been feeling, well... empty lately. I get periods of emotion where I feel unreasonably hopeless, irrationally angry or just downright weird. I was diagnosed with clinical depression and post traumatic stress disorder about eight years ago now, and I guess I’ve been existing with it ever since. I’ve never sought help for my problems, although multiple doctors have recommended I take anti-depressants and see a psychologist. I was very much against being medicated, but now… I’m not so sure any more.

I coped through escapism, writing, playing games, doing anything and everything but focusing on my problems. I still do it, and frankly, it’s ruining my life. Not to mention, it’s no longer working as a coping mechanism. I just can’t focus, I’m always tired, and I’m eating too much for the amount, or lack of, exercise I do. I feel stressed whenever I leave the house, going anywhere outside of the few safe places; that is places I’ve been to before, leaves my stomach churning and aching. Long drives are physically painful to the point of near tears sometimes, I find it hard to relax when there isn’t a bathroom nearby. I’m not ready to explain why, so bear with me on that please.

I get downright agitated when I’m disturbed on my bad days. I fight and argue with my mother, yell at her… call her names. I’ve broken things, said things a rational me would want to punch the irrational me for. I hate it when I can’t control my anger, hate it how it hurts my mother because she’s the only one I lash out at. It’s put a strain on our relationship, and since she is the only parent I have contact with, it makes me miserable to consider where I’d be without her. I feel very little connection to my siblings… like if one of them were to get hurt, I’m not sure if I’d be upset, angry sure, but upset? I’m not even sure if I know how to feel empathy for others anymore. My step grandfather passed away after battling cancer last year. I didn’t cry, wasn’t sure what to feel really. He was a better grandfather to me than my paternal, blood related one. People cope differently, I get that… it’s just… I used to be a pretty caring person.

I just feel like everything’s falling apart around me and the only thing I can do is cower where I am, waiting for someone to kick me while I’m down. I had more written down but the character limit isn't friendly to my long winded way of writing. I'll get around to posting it sooner or later, no doubt.

[Pixie15]

Hi Ampersand,

Welcome to the forums. As you have written in your post you have tried doing it alone in your own way and found it not very helpful. I hope your reaching out here means that you have reached a point where you are prepared to accept other help.

You really have outlined your own plan of action in your post I think. Having tried doing other things which have not worked for you are you prepared now to go and see a doctor again and talk about what other help you can get? You do not have to struggle on alone.

Grateful.

[Ampersand]

Hello GratefulToday,

Thank you for your warm welcome, I appreciate the consideration you've taken to reply to my post. I have stood alone for a long time in what I would call a battlefield of worries, self loathing and stress. Whenever the wind stops blowing all seems calm, something else materialises to make my day worse. Kind of like standing in the eye of the storm. I'd be grateful to have survived that experience only to be buffeted from the other direction once I think I've finally got a grip on life.

If it's not the fridge breaking down, it's our phone line having a major fault. If it's not the car needing yet another service, it's my sibling locking herself in her room all day. If it isn't the knowledge that I know I need to seek help, it's the thoughts in the back of my mind that nobody would want to help me. I grew up in an abusive household, have been homeless, bullied, abandoned by my dad, almost a vegetable and eight years on it's just a constant chore to keep going like this. I battle more with my mental health issues now than my physical health issues; they're almost, if not, as debilitating as having this condition. Eight years has given me time to come to terms with what I can and can't do anymore, but the stomach churning stress and worry is unpredictable, I don't know when it'll strike... which further makes me worry. I'm clinging to scraps of dignity that I'd rather not lose.

As far as my current state of mind goes, I'm in a good phase I guess. Little more philosophical than usual, but hey, if it gets me moving in the right direction I'm going to take that for what it is. I know I need to see a doctor, but I'm not sure if I'm ready yet. I moved town two months ago to a place that has a single doctor clinic within walking distance since our car is in need of a service. I've never been there before and honestly, I'm not even sure if they can help me. A lot of my issues are wrapped up in my medical condition - Transverse Myelitis. Normally I'm tight lipped about what it is... but there's not enough awareness about it. The doctors I saw in the past for this are in an entirely different state. I've been burned before with doctors, it's one of the reasons why I've avoided getting the kidney ultrasounds I need each year.

I feel like they might judge me for locking myself away for so long, for ignoring the cues my body is desperately trying to get my brain to recognise. I'm afraid of finding out just how much I'm messed up, in body and mind.

[Pixie15]

Hi Ampersand,

I did a search for your condition. It would seem that it is quite rare. Did you have a doctor treating you at the last place that you lived? From what I read unless you have made a full recovery it would seem to be a condition which requires you to have ongoing treatment. If a lot of your problems are caused by living with this than managing your symptoms will improve your life. Some medical practices these days also have nurse practitioners who help with this sort of thing.

If you are having trouble getting to the doctors do you have a community center or health center in your new town that you contact to get some advice about that.

I can understand why you might not want to give your condition a name. I was recently diagnosed with a quite rare form of rheumatism which usually affects older people. If I just give people the name they have no idea and then I need to go into all the complications of trying to explain it.

Hope you get some help.

Grateful.

[Ampersand]

 Hello GratefulToday,

First I'd like to thank you for researching it. It's rare enough that most doctors I've spoken to about it give me a blank look when I mention it. I was lucky to have had fantastic doctors when I lived in QLD, but when I moved to NSW I stopped receiving treatment for it altogether, as I stopped seeing doctors regarding it. I don't know if there is a community health centre, but there is a clinic close enough that even I can walk to it.

I've been doing my best to sweep it under the rug, pretend it never happened. Works sometimes. I can barely recall the unpleasant experience that was my hospital stay. Sure I hear stories about how I'd struggle with standing, or struggle with learning how to walk again. Or the time that I was playing around with the monitors by holding my breath (and subsequently confusing the nurse watching them). I'd be shocked if I could recall any of that though. I only remember being surrounded by elderly patients recovering from replacement surgeries. I only remember the countless stares and whispers. What's wrong with that kid? Why are they in a wheelchair if they can stand? I only remember the frustration and loss of not being able to any of the hobbies I once enjoyed.

I'm going to move on from those thoughts. I've got a lot of resentment and negative feelings surrounding my experience which further complicates things. Yes, it does require ongoing treatment. Other than the yearly scans I'm supposed to be taking medication to relax the muscles in my bladder, make it less overactive. I took them for a few months, didn't like the side effects. Then I was prescribed a different sort, which wasn't on the PBS scheme, at the time we experienced financial hardship, so I went without. I've learned to manage it... but if I'm aware that we need to go somewhere I've gotten to the point where I stop drinking fluid and don't eat some hours before leaving the house.

I guess I'm not managing it at all. Looking at all the rational logic on this forum, it's making me think that I ought to stop entertaining the pity party I've been holding for myself.

Thank you for sharing your experience. It's uplifting to know I'm not the only one who needs to explain things if people don't understand by name. It hurts when I tell someone and the best response they have is "Is it contagious?". If it were, maybe more people would've heard about it. Such is life, I guess. Well, I'm starting to feel a little less isolated, writing this stuff.

[geoff]

dear Ampersand, I would like to welcome you to this site and thanks for for posting your comment.

I too had to read up on your condition and it's one of those illness's that they don't know exactly why you have got it, but understand what you have to go through and suffer from and you have written in the 'young' section so you're not that old, but I have to say that you write so well.

I wonder why you have moved from QLD to NSW although this decision probably had nothing to do with yourself, because the support you had is now gone.

Do you have any relations still in QLD, because now you're not in the most ideal place to get the care and attention you need.

It's not so much 'afraid of finding out just how much I'm messed up, in body and mind' that you are messed up at all, it's an illness which would extend to many other issues that would be helpful to know the full extent of what is going on, it's in your own interests, so I'd like to know what you think about this, because by having TM and now mental issues I would believe to be major concerns here.

Firstly is there anyway you can contact your doctors via skype or at least email in QLD, hopefully they bulk bill you, or is this asking them for the world.

At the moment personally I wouldn't go to your only doctor, and I only say this to protect you from being upset, because 2 to 1 on he/she may not know of your condition, so this will then lead to a bad experience.

Click under 'Get Support' at the top of this page and try and find a doctor that may deal in situations like what you have, and here I'm talking about TM and depression or alternatively ring the BB line or web chat, here I am only trying to find some avenues for you to branch down.

Hope we can hear back from you. Geoff.

[Doolhof]

Hi Ampersand,

I too welcome you to the Beyond Blue Community and would also like to say I love your style of writing and explaining your life! I don't do short posts very well, I have always needed lots of words to express myself.

Unlike Grateful Today, I have not researched your condition, but from what you have written it does sound like it can be very daunting trying to live a "normal" life.

You have tried so long to take control of your life and make the most of it the best way you can, but maybe now is the time to try to allow another Dr and a medical team to assist you.

Last year I thought I had my depression and stress under control but in reality, it had me under control and I totally lost it and needed to be hospitalised before I acted on thoughts that were very dark.

I have had to put trust in my Dr as he has changed my medication and referred me to people who can help me in my journey to recovery. Physically I have suffered from back problems that had me basically living on the floor for a couple of years unable to do much at all. I cope now after an operation and with strong pain medication which dulls my brain functions and thinking capabilities.

Despite that I am able to work part time and can manage so many things I never thought I would ever be able to do again.

So I would like to encourage you to seek out the Drs in your area, and be patient with them if they don't know of your condition. You can help the Dr to understand and comprehend what you are going through, you can be the teacher here!

I'd also like to encourage you to write a note or a letter to your Mum to let her know how much she means to you if you are unable to tell her face to face.

Wishing you well with all of this, cheers for now from Mrs. Dools 

[Pixie15]

Hi Ampersand,

I hope you do manage to get yourself to the doctor to try and sort out a better way of managing.

If you are basically making yourself hungry and dehydrated in order to feel comfortable to leave your home this is not a good situation to be in. There might be a way to deal with the side effects of the medication you had before. Still having some side effect might be better than becoming isolated in your home. Especially as you have moved to a new state away from your family and friends.

One consolation as you have found by posting here is that living in the digital age you do not have to leave your home to get some support.

Grateful.

[Ampersand]

Dear Geoff,

Thank you for your welcome, I appreciate it! Also thanks for the compliments on my writing comprehension. I use writing as a coping mechanism, it helps to express my thoughts and feelings. It has been a bit unreliable of late, though it served me well in the past.

I am twenty two years old, and I’ve had TM since I was fourteen. I was diagnosed with Depression and PTSD a few months later, while going through rehabilitation. Like most cases of TM, mine was idiopathic. Onset of the condition was acute, one week I was playing soccer and being a typical teenager, the next I was belly up in ICU struggling to stay alive. I learned pretty quickly that life is never as it seems. I’m a bit of a pessimist these days, but I’m working on changing that approach to life.

Elaborating on how it’s affected me physically: I am in the partial recovery group. I have weakness in the limbs, incontinence (urge/overflow), and hyper reflexes in my legs. I become exhausted at a faster rate than your average person and have horrible sleeping patterns. Due to the incontinence I’m waking up anywhere from one to five times a night to use the bathroom. Depending on how exhausted I am, I’ve been needing  ten to twelve hours of sleep lately, which may or may not be made worse by my Depression.

Initially we moved from our hometown to SE QLD three years ago, this was to give my youngest sister who was being bullied at school and online a fresh start. Also to get away from our father, more on that later. I had a GP there who treated me with respect and had prior experience with TM. The move to NSW occurred as my mother’s partner was relocated, and again three months ago because of another relocation, he’s in the Defence Force. The GPs I saw in the last town were very unhelpful, so I’m going to give the ‘Get Support’ thing a try. Thanks for the recommendation.

The only relations I associate with in QLD is my eldest sibling, and my Nanna who is visiting us at the moment. Until recently I hadn't been in contact with my sister for some years, she moved out following an argument and was a bit standoffish for a long while. Things have been patched and our relationship is on the mend, but we're not as close as we used to be. My Nanna is likely going to move down here in the next year, her eyesight is on the way out and thus she's moving closer to her own support network (us).

[geoff]

dear Ampersand, the conditions you have described must be absolutely awful for you, and no one would understand the inconvenience it causes you, we can appreciate what you have to go through, but only you and this applies to other people only know when you wake up at night and have to go to the loo, I'm sure there are many words said, and I don't blame you.

When any of us reach out to someone and offer our support it's just so lovely for them to reply back to us, you know this makes our job much more worthwhile, because it's all free what we do.

In my first reply I forgot to mention about your PTSD, and I wonder if this was by the accident that happened.

Mrs. Dools has said that you will be the teacher to some doctors and how true this is, so are you able to print some information off the net about TM, because for a doctor it would be intriguing to get to know all about it.

We are so keen for you to reply and keep us informed, as we are here 24/7 or at least someone is, but then we can catch up on posts we have missed.

You know I can see a big future for you, but firstly lets get you the help that you need. Geoff.