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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To feel very alone?

74 replies

IceAndASlice123 · 08/09/2019 21:51

I'm facing a lot of work stress and threat of unemployment, worried about a hospital appointment this week and have a chronic bowel disease.
I feel like by the end of this week things will be even worse and I am very scared.
I have nobody to speak to and feel I have to put a brave face on all the time.
Aibu to feel alone and scared? I am terrified things could get a lot worse.

OP posts:
tictac86 · 11/09/2019 20:04

I didn't mean that to sound flippant at all. And I didn't mean it to sound careless.

IceAndASlice123 · 11/09/2019 20:13

It's ok. It didn't sound flippant x

OP posts:
bobstersmum · 11/09/2019 20:22

Best of luck tomorrow op. Can you say roughly what region you are in, there may be someone nearby who could meet you now and then. I'm in lancs and I can meet you any school day but will have dd age 2 with me!

tryingtobebetterallthetime · 11/09/2019 20:29

Hi. I am also someone with IBD. I know all too well how isolating and lonely it can be, and how scary tests at the hospital can be. It is particularly bad if you are flaring and worried about leaving the house and not finding a toilet in time.

I wish I could wave a magic wand op and make it all go away, for you and everyone else with these diseases. But I can't.

I find that reading support group forums and blogs can help me at least feel less alone. My husband disagrees but he does not have ibd. It is impossible for anyone who does not have it to understand. Others on the forums know. I find that comforting.

Are you eating ok? If I am flaring I try to get food in that I know I can tolerate. This for me means eggs, soups, a nice soft bread, bananas etc. Not eating will make you feel worse. I also sometimes have plain pasta with a bit of butter and Parmesan.

Try to get enough rest. Fatigue is huge in IBD. I really struggle with it. If you can't sleep, just rest. It is better than nothing.

I know what you mean about thinking the worst. But the test you are having could also mean more or new treatment. I also know what it is like to just become completely fed up with doctors etc., not because they are bad, but because they can't fix me. Being the drug guinea pig is not what anyone would call fun. That's what it feels like sometimes.

Also, the sheer chronic persistence of these diseases is exhausting. You start to feel like a chronic complainer, and, yes, a burden. Try not to think that way.

There is some IBD humor out there that only ibd'ers will laugh at. You might want to check it out.

https://www.healthline.com/health/crohns-disease/quotes#7

Hugs.Thanks

cafenoirbiscuit · 12/09/2019 07:15

Good morning. Just checking in to say good luck for your appt today xx

Yestermo · 12/09/2019 07:24

Good luck for today. The good thing about the day arriving is that it means it's very nearly over!
I find it helps to write things down beforehand that I want to say (including things like wanting to avoid a colonoscopy) as well as what the Drs say.
Please let us know how you get on. Flowers

IceAndASlice123 · 12/09/2019 07:34

Thank you. Feeling very emotional and scared. Just need it over with

OP posts:
Hazhaze · 12/09/2019 09:30

It will be such a relief to get today over with. Keeping everything crossed.

eladen · 12/09/2019 17:10

Hope you got on relatively ok today.

user87382294757 · 12/09/2019 17:37

Hi, just wanted to reply and say I know the feeling- I also have a bowel disorder (recurrent small bowel obstructions due to adhesions) and also found my family minimised it- it is really upsetting and like you made me feel much more alone. My husband also has crohns...even then we still both don't discuss it often as think we both feel the stress and uncertainty it brings...

anyway I found the Elefriends site mentioned upthread really helpful and caring, and wanted to mention also my DH had been helped with Humira..in case of any help...I know what you mean about the bowel disorder groups, I avoid them now as made me feel worse. I was on some on Facebook but it just scared me and they all seemed negative...kind thoughts Flowers

IceAndASlice123 · 12/09/2019 18:43

Thank you.
Went ok but still a bit unsettled. My bloods were all fine but my calprotectin (measures inflammation in stool ) seems to be slowly rising. It is meant to be below 50 and started off as 7.8 then went to 20 and now 26. Doctor didn't seem concerned but a bit concerned about it. I was terribly nervous and probably came across as quite strange so am embarrassed by that. The good news is, no colonoscopies or change in meds for the foreseeable. Still feeling very stressed and lonely but am glad it wasn't as bad as I thought today

OP posts:
Ogham · 12/09/2019 20:39

Hi Ice, so glad it went ok for you today. Hope you’re feeling a little less anxious. 💐

ssd · 12/09/2019 22:09

Am glad you had slightly better news

KatieHack · 12/09/2019 22:50

This reply has been deleted

Message withdrawn at poster's request.

Hazhaze · 13/09/2019 01:02

Well done for getting through it. Don't worry sure drs are used to nervous and they didn't find you strange at all. xx

Defenbaker · 13/09/2019 01:52

Hi OP,

Joining the thread a bit late but wanted to say that I sometimes have episodes of IBS, and with me it's usually caused by stress/anxiety, so I can understand how the stress of your work situation might be exacerbating your condition.

It's hard when you have problems and worries that you'd like to talk over with a close friend, but have none around to lean on. I'm in a similar situation regarding feelings of isolation, as I have no close friends (they all let me down in the end, so I stopped bothering with them), my parents are dead and I am not close to my siblings. DH is great but I would love to have close female friends. I doubt it will ever happen now, as I'm in my 50s, but at least MN offers a bit of social interaction of sorts, and there are lots of kind people on here who offer support and ideas, so I'm grateful for the MN community.
Take care of yourself OP, and keep posting. You're doing the right thing in sharing your worries here, you will get lots of support from others who have similar problems.

tryingtobebetterallthetime · 13/09/2019 02:32

I am glad it went ok and no dreaded colonoscopy. They are no fun, I know as I have had quite a few. I am sorry your first was so awful for you.

Please keep posting if you need support. You are not alone. I understand about support forums, and it is true that people don't tend to post when they are doing well.

Take care, op.

eladen · 13/09/2019 06:48

I am glad nothing horrible has come of it. The inflammation could be anxiety driven - anxiety does cause inflammation in the body, so try not to worry extra because of it. The important thing is the doctor wasn't worried. If you focus on taking care of yourself emotionally that can only be a good thing.

And I bet you didn't seem strange for being nervous. Most patients are nervous in those kinds of appointments. That's your anxiety talking and being mean to you, it's not true.

Thought this morning reading pp comments about Facebook being scary/negative... There's a youtuber "LetsTalkIBD" who is super positive.. Her name escapes me this morning but she posts all manner of things from funny stories to her tips to coping with bad days. And (I thought) she manages to do so without coming across as terrifying or bringing on "the end is nigh" type feelings. Even when she's been posting about her own bad patches. She has Crohns and an ileostomy (just so you have an idea on her perspective before you decide to look her up or not).

Might be something else to explore to feel less alone / connected to others? I expect there are others like her who wouldn't make you feel more afraid/hopeless.

Hoping you feel proud of yourself today for getting through yesterday. You've done really well.

Fcukthisshit · 13/09/2019 07:24

I have some weird inflammatory bowel disease too and my calprotectin levels vary between 20 (ish) to 1300 and I always have normal blood results. It’s not easy to live with when it flairs up and can be incredibly painful. Do you have access to specialist nurses during flair ups? Maybe they can suggest some channels of help with how you are feeling? X

Stoic123 · 15/09/2019 20:29

Hi OP- hope you had a nice weekend.

Sarcelle · 15/09/2019 20:37

ThanksHope you are feeling better about the week ahead now that your hosp app is over.

Cryalot2 · 15/09/2019 20:46

Just seeing this, am glad all was ok at hospital for you. I am another ibd and only too familiar with the colonoscopy. The prep proceedure I find most difficult.
There is a fb support group.
Loneliness is dreadful, my dog ( small breed) has helped no end

rubyrubyroo · 15/09/2019 20:56

I have 5 year old and 2 year old - DP at golf all day Saturday and Sunday- never do things with us.
Today had tickets for circus - 5 yrs old asked DD three days ago as she wanted him to come - today 2 hrs before we were leaving DD told me he has to go for golf - could come for 1 hour AIBU??

IceAndASlice123 · 15/09/2019 23:05

Thanks all.
Feeling very down still, lonely and like I want to run away. Can't help but feel I am on a hamster wheel at the moment. Stressed about soon to be obvious unemployment and working with someone new who isn't very kind or patient. There's moments you just need a hug and someone to listen and I don't have that. I feel very relieved that my appointment went ok but because I don't feel completely at peace and overjoyed I feel guilty.
Thanks for the kind words everyone x

OP posts:
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