NCOT

Hey gumby. I'm still alive - well, I'm breathing :/

I'm not really sure what to say. I'd like to say things looked much better after a good night's sleep, but in reality I haven't had a refreshing night's sleep in years and things never look any better. I've run out of plans and ideas. People (i.e. my mum) keep on suggesting volunteering to me, like that's a panacea for being utterly alone. I literally struggle with getting out of bed and doing the bare minimum required each day to keep me clean and fed. To pass the day, I go on the internet, play a few games on my tablet, or - more occasionally - read a book. None of it really enthuses me any more - like maybe about one day out of every fortnight I'll have a posting session that I actually enjoy. But for the most part even forum-surfing/posting feels pointless and dull to me, which it didn't used to.

Going out for the sake of it doesn't make me feel any better. All I do is wander around the streets and shops like the mindless zombie that I feel. On top of that, I just never know when my stomach is going to play up or when I'm going to have fun with random (and curiously debilitating) rectal urges. The active inflammation makes me feel like turd. The motivation to get out there and join volunteer groups, or whatever, isn't high. Particularly as I feel like I probably won't make any meaningful connections through it anyway. By their 30s and 40s, most people are well established - in jobs, families, etc. I literally don't know of one source of help for single, friendless, jobless people in their 40s with no qualifications, skills or work history to speak of.

In short: I feel exactly the same as yesterday. And the day before that. And the day before that, ad infinitum. I'm tired, I'm a waste-of-space, and I wish I wasn't here.

Well, first of all, thanks so much for writing back.....I was worried. Well, I'm still worried, but at least I know you are out there in the world. You have every right to feel seriously depressed, but you have more ability than you think to connect with others and feel valuable. I think you should maybe start with getting back with the mental health folks and see if there is any other antidepressants you can try. Then I think you need a game plan for treating the Crohn's. If you can start to feel a little more energy, then you might be more receptive to trying out some ideas like a job working from home (your writing skills are impeccable) or volunteering. But I do understand when you feel severely depressed the energy isn't there to have the motivation to get back out there.

I feel like I have lost a lot of social connection since getting sick. My kids grew up and I used to volunteer at all their school activities. I got sick when my younger daughter was in high school. I have one loyal friend, and acquaintances, but I stopped wanting anyone to come over or to go out, because I could never predict how I'd feel. I get it that I have my husband and he's great, but he's perfectly happy not socializing, so I do get lonely. I joined the theater thing more to try to make some friends than being in the play itself. I could care less whether the potential friends I might meet are single or married, or if they have kids. I just want to meet interesting people.....and you have so much more to offer than you realize. I also know you can't see it right now, so I won't keep bugging you about that.

Ok, I know I'm rambling, and maybe not helpful. But my advice for whatever it is worth is to call whatever doc was offering you antidepressants and make an appointment right away. And what is you plan for your medical care? You are inflamed and sick.....it's no wonder you feel so bad. You need to get that under control and things will be better. I hope so anyway.

Don't all IBD'ers feel let down - even those who are managing family and work life with Crohn's Disease? We always compare ourselves to our peers and feel sorry for the space denied to us in career, wealth and health. As an IBD'er ages, the orbits of well doing peers become far more unreachable. We just think about carrying on one day at a time, how much we are dependent on others for our routine tasks, food we can not take, rest/sleep we can not think of, feel guilty of not doing enough for spouse and children.

NiceCupOfTea - Hang in there, we all need your advice like from other veteran members of the forum. I am not in a position to suggest "one source of help for single, friendless, jobless people in their 40s with no qualifications, skills or work history to speak of". An activity I can think of is Travel! - yes, travel to see less fortunate ones around the world. If planned well, travel is not out of bounds for even IBD'ers.

Still breathing :-/

The suicidal feelings have gone for the moment, but I've been feeling a horrible mixture of agitation and braindeadness all day which isn't much better. It makes it hard to think straight or concentrate on anything. (My stomach playing up and lack of sleep probably isn't helping any either.)

@gumby - I've tried so many antidepressants and none of them have helped beyond the short term. A couple of them made me dangerously worse. I can't see the point of trying yet another pointless antidepressant and I refuse to move up to the next tier of medication, i.e. antipsychotics. As far as treating the Crohn's is concerned, I've been prescribed Salofalk enemas and suppositories. Not only do I not have any hope that they will work, I'm terrified to even start them. I'm pissed off at starting at the bottom of the medication ladder again, but on the other hand there's not a lot at the top of it either - apart from Entyvio, I've tried just about every top-tier med there is.

In short I think I'll end up having my rectum removed and going back to an ileostomy. I probably won't be able to hold out long enough for new drugs, particularly as it's likely to be several years before anything else is released.

@nssg - I just don't even know where to start with finding work. I feel completely lost.

@scifigal - Thank you.

@cdinhyd - In a parallel universe where I had neither Crohn's nor depression, I'd love to go travelling. But right now, going to the moon would be easier for me - wait, that's travelling too. Never mind.

@iPoop - I'm an introvert too. Conversation tires me out extremely quickly, as does hubbub, loud noise, etc. I've always liked my own company. But I've never actually lived on my own until this year (apart from a few months at uni, but I don't really count that). I hate it. I didn't think I would feel that way, but I actually hate it. How can a home feel like a home if you never have anybody in it? I've lived here since April and not one member of my family has come to visit apart from my parents - and even they don't exactly hang about (and, no, it's not because I spend all my time complaining). I miss having somebody to watch TV with, eat dinner with, that kind of thing. I'm happy with my own company much of the time - but not 99% of the time. I keep reading depressing stuff, like how isolation is used as a form of a torture and how loneliness is twice as bad for you as obesity - but from my experiences I'm also not entirely surprised either.

Uh, so anyway: technical writer. Not sure my brain's up to scratch, but that is something I could consider doing. How would you get into the field?

Apologies for the shortness/terseness of my replies folks - I really am so, so, so, so tired. Feels like it's taken me forever to write this.

Edit: I feel guilty for yet another whinge-fest. I just feel like utter, utter, utter sh!te, both physically and mentally. I'm not up to putting any ideas into action right now, I'm sorry.

Post Edited (NiceCupOfTea) : 12/10/2015 5:56:29 PM (GMT-7)

I'm sorry you feel this way and things are not improving. Some may laugh at my advice or it may piss them off but you literally need to force yourself to do small things everyday. I have had a horibble year out of work on disability twice and absolutely could not function. from my experience the less I did the less I wanted to do, the more I let myself stay home and feel like I absolutely couldn't do this anymore then the more I felt like that. I started with taking baby walks up and down the same side walk at my house and then asking someone to come with me. It is so easy to isolate ourselves but I found the more I forced myself out of my comfort zone the more I started to feel a little normal or more happy. And it may seem trivial but volunteering when I can absolutely males me feel better. I try to find easy things for even when I don't feel well. Like working the angel tree at our mall. It's close to a restroom and I just have to sit at a table but just talking to people and answering their questions for an hour or two instantly makes me feel better and more connected to the world.

Isolation is a dangerous feeling. At one point this summer I seriously thought I absolutely cannot do this for another 40 years, is this my life? It is hard and in my 17 years of my disease it has affected my education, career, and friendships, but I will not let this past summer be what my life is like!

Hey Miranda,
I think you are in a very dark place and so if people respond but aren't helpful, or don't respond at all, everyone is irritating. I wouldn't dare try to speak for anyone but myself, but I care very much about you and I don't have any great ideas. I'm sorry it's so hard right now and I hope your awful mood passes soon.

Do you have any Valium or Xanax? I'm not suggesting you use it as a regular thing, but if you don't have to go anywhere or drive, it might just settle things down.

I suspect you are having a little bit of a PTSD reaction.....you knew the Crohn's was probably back, but you didn't want to actually hear the news and it is bringing back all of the trauma of the past several years. (how's that for armchair psychiatry?) I think the intensity of this is going to pass if you just hang in there a little bit. Try to distract yourself and don't analyze your feelings too much....just breathe and exist for awhile.

I'm going to the read thru of the script for that little part in the play I am in. The director also wants me to be an understudy for the leading role, and I really don't want to memorize the whole script for a part I won't play. I told her that, but I don't think she was listening. I feel like crap too. They are bringing in pizza, and I don't feel like saying I'm sick or have Crohn's.....I think I'll just say that I forgot about the pizza and I already ate. I've lost around 7 lbs in three weeks....not that much weight, but I keep gaining and losing the same ten pounds. (just trying to distract you with my own nonsense) I'll check in later tonight. Take good care.

I'm tired and going to go to bed straight after this post. I've calmed down compared to 2 hours ago; spoke to my mum on the phone. That helped a bit. Going over to my parents' house tomorrow.

Gumby - No valium or xanax here. Won't be able to see a GP until January now (if then, knowing this practice), and it will be hard persuading them to prescribe tranquilisers. They dole out antidepressants like they were candy, but apparently tranquilisers and sleeping pills make you addicted after one pill. I seem to be fairly resistant to the effects of certain meds as well, which doesn't help: I was prescribed a one-off dose of 5mg valium once and it didn't really have any effect. But the doctor was acting like I'd be so drowsy I'd barely be conscious - she kept on warning me to be careful, it was ridiculous.

PTSD doesn't sound too far-fetched to me. I do feel like I have been through some traumatic experiences; not all Crohn's-related but the majority are. Even my recent flex sig was grim: despite having both sedation and pain relief, I can remember bits of it and it was agonising. I was crapping blood for an hour afterwards. I had an accident as soon as I changed into my regular clothes. I suppose all of us on this board can relate anecdotes like that, but me, my ability to take adverse events in my stride has massively decreased.

Can you not just make an excuse to refuse the understudy part? It does seem rather a large role to force on somebody who's brand new.

BRelaxed - I felt suicidal again earlier on. It seems to come and go in waves for me. At the moment it's just ideation, I've got no intention of actually acting upon the thoughts. I'm such a massive wuss in the face of the slightest pain nowadays, that does help to deter me. What used to help me, but doesn't seem to so much anymore, was thinking that life was short but death is very, very long: I could rationalise holding on that way. And it does still sometimes help, but not when I'm at my worst. Concentrating on survival makes sense.

I'm having a psychological assessment on the 18th December. I don't want to pin my hopes on that, because I've been let down in this area a few times before. Hopefully it might lead to therapy but there isn't any guarantee.

I'm not sure about what jobs I'd like to do. If I had my time all over again, I'd probably go to medical school and become a doctor, or try to. But time, money and health are all resoundingly against me on that one, so maybe I'll look into iPoop's idea of being a technical writer.

scifigal - I'm not allowed to have a dog or a cat where I live. It's absolutely standard for housing association flats unfortunately. Otherwise I probably would get a small dog (not a cat, as there's nowhere it can really go around here - Green Park it ain't).

No worries, there's no rush at all.

I'm at the waffly stage of tiredness now, so before I can start afresh on another tangent, I'm gonna call it a night and say goodnight folks.

iPoop - Thanks. Sounds a bit vague. I'm sure employers would at least want previous experience, if nothing else: I can't just see walking straight into a writing job.

DCJ - I'm sorry about your son. I know some people claim that autism is a gift, but it seems to be mainly the internet self-diagnosed who make such claims. From my perspective, it has been a curse. To be fair, I don't think it need be as bad as all that, but I grew up in the least empathetic, nurturing enviroment imaginable. I imagine with better parenting and non-***** for siblings, an autistic child could do considerably better. But depression and anxiety do seem to be almost a core component of autism.

I can't stay a couple of nights a week at home - my dad made that crystal clear to me a few days ago. I sort of see where he is coming from, and I don't entirely disagree with him. But he's so weird he'd probably object to me coming over an extra day in the week, even if I didn't stay the night. Even though nobody could make their presence less obvious than me: I literally hole myself up in my mum's bedroom most of the time.

So yeah, the whole situation is a bit weird and ****ed up really. All I ever wanted was a "normal" family, not the freakshow I actually got. (My mum is actually okay, or would be if she wasn't a semi-alcoholic and always putting my dad first my entire life.)

Time for bed, I think...... :/

Skyflyerjen said...
Maybe your main character will have Crohn's or is depressed or something similar, where you can write from experience.

They'd never get out of the house. Not much of a story <_<.

I have always enjoyed a good story, but I've never been good at thinking them up. I suppose I could always try writing a short story... no idea what it'd be about though :-/

A short story is a great place to start! That way you hopefully won't be pressured to make it longer and longer. The possibilities of what you can write about are endless.