Need to sort my head out. Big whinge, sorry!

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Veteran Member

Date Joined Feb 2007
Total Posts : 1050
   Posted 7/4/2011 5:26 PM (GMT -6)   
I'm screwed up, just sooooo very sad recently. I can't motivate myself and everytime I almost get there something happens with my health and I just can't handle it.
I have clinical depression and anxiety trouble any, and am on Trazadone which work wonders to lighten my everyday mood........When things are going well. Before them even if things were going well, I was a screwball mess, so it's a major improvement. But it just isn't enough. Neither is talking about it really but I'm just so full of self-pity, feel free to tell me too buck up, things could be worse. I very much know that, I've seen the really bad sides of CF and it scares the **** out of me that I'm ever gonna get there (good laxative I guess.)
So much in me is unexplained. I have stupid muscles that's unexplained why they don't work how they should. Closest they ever got to a diagnose was to swear it was muscular dystrophy they just needed to find out the type. But a muscle biopsy later they could find no genes to prove this, so it's just a nothing, that I somehow have to live with. I walk with a crutch as my legs hurt a lot anytime I start walking any sort of distance that isn't my front room.
Then last week it was spots that I've been getting since I was a kid, but this time they flared up big. They took a chunk of skin from my leg, and now I have stitches. Without a dressing they feel like they're pulling all the time, with a dressing it feels better but I have no dressings left to use. My skin can only tolerate Mepliex if I have it on for anything more than an hour. The dressings are expensive and the hospital tissues deparment have said I'm not allowed them.
I went today and my lung function in a week has dropped 10%. I've now gone from 95% to 79% in a few weeks. I know there are people with worse lung functions, but I am going through IVF and keep thinking what if......What if my lung function drops to 60% and my consultant decides that I have to stop trying for a baby. It took 2 lots of IV's a month apart to get my lung function from 79% to 93% in January and now I have that struggle again.
They keep telling me about my weight and what I can do with my diet to help me lose it. Even though I've lost 2kg in a week, that isn't enough. They want me from 75kg down to 65kg. That's a big leap and tbh I just don't want to do it. I know what happens when I suddenly start losing weight. It spirals out of control and suddenly I fidn myself being threatened with NG feeds. That's without me even trying though and if I am trying to lose weight and I spiral suddenly, then what if changing my eating habits now is enough to stop my appetite altogether later and I end up in more trouble.
I am worrying so much about everything and I know I shouldn't be, I know things could be worse. I'm trying to get on a course to teach (somehow got to magic up £539) if I don't get on that course, college won't employ me as a teacher even part-time. I'm stuck in this horrible trap with them which means I may not be able to go back in September. This means I will also lose my counselor through the college, and I don't think I will be able to cope with that. I've already lost psychiatrist for 2 years. Another thing I'm worrying about and my psychologist is still on maternity leave and may not come back.
I wish there could be a switch in my head that could just switch all this off so I don't have to worry anymore.
I just don't have the motivation or energy. I don't even have it for my nephews. They want me to play like normal, be the great big kid that I usually am. They are some of the most important people to me and I want them to be happy, but I can't help create that magic and happiness. Yesterday and today when looking after them I just had to sleep. The oldest-4 years old-kept asking me to chase him and play, but I just couldn't. I hate being this way.
I just at the minute feel like a very boring tired out ornament that isn't really much use to anyone right now. I've still been going out face painting to fund raise for my social group, but even the effort I can put into that is gone. I can't put any imagination into anything, I'm just copying a design and moving onto the next kid in queue.
Sorry I really am just whinging now. Just feel so sad and unmotivated and like absolutely everything is beyond my control. Oh and I need these stitches out of my leg. I'll end up with a permanent scar regardless of when they are removed, I always do with anything that requires stitches, so why not now so it can just heal however it wants.
:( :( :( :(
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Post Edited (Gemsi) : 7/4/2011 4:45:59 PM (GMT-6)

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 8/4/2011 10:46 PM (GMT -6)   
Oh, Gem. I've been thinking about you today so thought I'd pop over to CF to see how you are, and am so sad to see that you're so sad, and so struggling.

I've nothing to say, hon, no wise words of advice; just an enormous and very caring hug.

Much love.

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Veteran Member

Date Joined Feb 2007
Total Posts : 1050
   Posted 8/5/2011 5:04 AM (GMT -6)   

An enormous hug back Ivy.

Since making that post, I've had 2 weeks IV antibiotics and they borught my lung function back up to 87%. Not near my 95% but my depression was getting a lot worse despite the nurses best efforts to keep me on my toes, competing against me on the Wii, and I just lied my way through it saying I was ok to the dcotors so they'd let me go. Everything just feels so heavy and like I can't be bothered anymore. I'm still forcing myself to keep busy and keep arrnaging things so this week I've not had a single day stuck in the house doing nothing, but still it's eating away at me. I'm hoing my head will fix itself soon so it'll just leave me alone really. I'm over thinking everything. Getting mad at everyone. Snapping at everyone and being impatient. I know I'm doing all this and can feel it at the time, but all I can do is apologise later when I've calmed down.

Trying to look forward to holiday to Spain on the 16th. I think I'll probably be ok once I get there and out in the sun, but it's just the exhaustion of packing clothes I'm not as looking forward to. It will be all worth it though, I'm sure.

Thank you for popping by Ivy. I hope you are well. What's the weather like over there at the moment. It should be summer here, but leaves are already falling off trees!

Big hugs
Gem x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

New Member

Date Joined Aug 2011
Total Posts : 2
   Posted 8/6/2011 2:30 PM (GMT -6)   
I am sorry to hear. I may have CF too but i have no symptoms yet. But my Ct scan showed lung apices with irregular attenuation (likely fibrosis). I have no clue how that would happen. I am 28 years old and trying to have a baby as well. I also have other health conditions like Chairi Malformation of the brain, lordisis, Hashimotos, PCOS, Asthma (bronchio) and degneration of the cervical spine (thats how they found possibly fibrosis?) I was invited to my cousins son's party and i didn't even go because i just want to lay in bed. I am tired of having diseases take over but i am trying to have a baby and to see everyone with their kids will make me sad. I just want to be strong. I could relate whether i have Fibrosis or not. If I do, it will only make life ten times harder and i just may give up. I am tired of feeling sick and tired. I send you hugs

New Member

Date Joined Aug 2011
Total Posts : 1
   Posted 8/19/2011 12:00 PM (GMT -6)   
Hi dear Gemsi
I'm realy sorry for u & I'm thinking abut u since last night.abut u & myself. I'm 20.I'm not marid & don't have any boyfriend but i love someone & he loves me.for feuther realy i love & want have baby but i think i can't,First Becuse of my bad lung function.i use oxigen full time.i was in hospital in ICU for 2month abut 1year was so terible.
any way,i can't do any thing but only one! i realy bilive praying. I pray for you & i wish u best & a helthy baby. (realy sorry for my bad English)
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