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11-29-2013, 09:39 PM   #1
valleysangel92
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Just need a vent

So it's 2.29am in the UK right now and I'm wide awake again (thankyou pred) I use some social networking sites and they seem to become full of internet 'doctors' at this time of night, wanting to know why I'm awake, and then trying to give me a million ways to help, even though most of them don't work and are myths, or wouldn't work for me because they would interact with x or y condition / medication.

I know these people mean well, but they never wait for the full story, they just wade in. They seem to think that I choose to be up this late in pain every night, like it's supposed to be fun?

It's taken me literally all week to get back into my GP (calling every day until Thursday) and get things sorted so that my gi now knows what's happening and is arranging tests and for me to go see him soon in clinic, which they also don't get, they think it's as easy as just call whoever and your seen and cured in 2 mins.. Sorry buddy, it doesn't work like that in the real world!

Also, I'm sick of the 'oh is it a girl thing ' or 'oh.. You're pregnant!' (would be a total and utter shock since I'm not active) comments if I say that I'd rather not say what's going on or if I try to say it's private. I've even had people in the past posting all over fb that I was an attention seeker, who lied about being sick to get attention, and who also lied about what happened in a previous relationship (highly abusive/violent, I was 17-18, I don't really parade it around -_-) .

Of course, I am not referring to anyone on this forum, or thankfully my boyfriend and my family, or my closest friend (I've known her since I was a baby) . Sorry about the rant, just having one of those weeks and needed to get it out!
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin

Last edited by valleysangel92; 11-29-2013 at 10:03 PM.
11-29-2013, 10:01 PM   #2
ronroush7
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Sorry you are having a rough time.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-29-2013, 10:11 PM   #3
Jennifer
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I'm glad that you were finally able to get in touch with your doctors and will hopefully get the help you need so you can start feeling better. As for the internet "doctors" well, just try to not let it get to you. Personally I hate them less than my family "doctors."
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
11-29-2013, 10:15 PM   #4
valleysangel92
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Thanks both

I do try not to let them get to me, it's just tough when some of them are very close to me (or were anyway) but they make no effort to actually understand my condition, but I've always been there for them whenever they've needed me, they even credit me for saving their life at one point.
Sorry. I guess I'm just tired, emotionally I normally bulldoze through everything, it's kinda the way I had to be when I was younger, and I never grew out of it ( that relationship didn't help as I'm sure you can imagine) so people just think that I can deal with everything. I'm so glad I have this place! Even if I do feel like I'm whinging somewhat :P
11-29-2013, 10:35 PM   #5
Jennifer
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You are free to whine, bitch and complain as much as your heart desires here. We all understand and agree 100%.
11-29-2013, 10:43 PM   #6
ronroush7
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Amen. Vent as much as you need.
11-29-2013, 11:29 PM   #7
PVail
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Having this condition is soo frustrating and people no matter what they think cannot understand how devastating it is . I suppose people / friends get frustrated not being able to help and find it hard to believe that you can have a variation in your illness all the time. It drives my wife mad that doctors keep passing me off with this and that and basically go round in circles.
Above all you know yourself that IBD is for the long term and there aint no quick fix . I think after giving up my career as a musician and having to re train in a different line of work ( which i hate ) i've come to accept a good day is a good day and should be cherished. The bad days well I suppose i keep them mostly to myself . Im aware now that my friends and family do not understand even though they think they do .
But I do feel that accepting it and trying to take control of my life has been the biggest step forward for me . Just taking a step back sometimes and taking a deep breath , seeing a bad situation and deciding not to get involved and just being a bit more on top of things i find really helps deal with people especially when your feeling down .
I have stopped looking for the answer. I take meds , they have side effects . Educate yourself on what your taking and try to work with it , ask advice from people who have done this ( on this Forum ).
Above all keep positive.

Peter
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11-30-2013, 12:05 AM   #8
valleysangel92
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Thankyou Jennifer

Having this condition is soo frustrating and people no matter what they think cannot understand how devastating it is . I suppose people / friends get frustrated not being able to help and find it hard to believe that you can have a variation in your illness all the time. It drives my wife mad that doctors keep passing me off with this and that and basically go round in circles.
Above all you know yourself that IBD is for the long term and there aint no quick fix . I think after giving up my career as a musician and having to re train in a different line of work ( which i hate ) i've come to accept a good day is a good day and should be cherished. The bad days well I suppose i keep them mostly to myself . Im aware now that my friends and family do not understand even though they think they do .
But I do feel that accepting it and trying to take control of my life has been the biggest step forward for me . Just taking a step back sometimes and taking a deep breath , seeing a bad situation and deciding not to get involved and just being a bit more on top of things i find really helps deal with people especially when your feeling down .
I have stopped looking for the answer. I take meds , they have side effects . Educate yourself on what your taking and try to work with it , ask advice from people who have done this ( on this Forum ).
Above all keep positive.

Peter
Hi Peter, thanks

I think that is the case with my family, and my boyfriend ( he absolutely hates one of my doctors because they ignored my symptoms for almost 5 years and is convinced that I'm now this bad because of that)

But some 'friends' and even certain family don't even try to get it.. Like my sister thinks she knows what I'm going through because she has a bad shoulder.... And I know she doesn't, and I'm actually ok with that, since I want to be a nurse, I started a nursing degree, and the first thing your taught is pain is individual so you can never really 100% know what someone is going through, because even if you have exactly the same condition, because it will feel different to them than it does to you. Currently my education is on hold while my doctors try to figure me out. To be totally honest, I don't want them to understand what it's like, because I don't want them to feel this way.

I guess the thing is that my friends are just used to me being sick. I've been progressively getting sick and then diagnosed with more and more conditions since I was twelve and so they maybe just think this is another thing I'll deal with and carry on. My family appreciates that it's not, and one or two of my friends because they know I wouldn't of given up uni easily.

I know there is no definitive answer, and to be honest a lot of these people try to 'help' me without me asking for it, which I guess is sweet, but sometimes it's strangers (I live in a village, nothing is private for long here) who think I just have a tummy ache from a bug or something. I'm very open about my conditions to people who want to know, it's the way my mum taught me to be when I was younger and going through my coeliac diagnosis.

I think I have a fairly good understanding of my current meds, but I'm hoping that I'll now be given a maintenance med, so I'll be making sure I know which questions are good to ask when trying to choose one. I did health studies in college and part of that was about long term conditions and how they can affect the life of a person, like every aspect not just the health. My doctors have always praised me for being a relaxed patient, and for taking control of my health at a young age ( my parents gave me a lot of independence despite my illness, they were determined I wouldn't be wrapped in a bubble as long as I wasn't making myself sick by deliberately sneaking gluten or something) . They have often been surprised at my level of cooperativeness and the way I always have thought out questions. (sorry I hope I don't sound big headed)

And I love this place, there's no pressure here and you can just let go, which Tbh I have never really learnt to do that well, I've always been the type to be more worried and care more about other people's problems than my own, it's the nurse in me I think. I guess what happens is that someone randomly tries to help, finds out they can't and then gets upset and frustrated, tells me blatantly that it 'sucks' or 'its really really sad ' or tells me that they 'feel really bad ' and instead of telling them to quit feeling sorry for themselves like I sometimes should do, I end up playing mother hen and trying to help them, but it's hard not to get a bit down when people are constantly telling you how much your life sucks.
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