Depression / Anxiety

[gwenllian111]

Hi guys

Do you suffer from depression as perhaps, a result of WG?

I have had periods of depression over the years, but nothing so bad as what i'm currently experiencing. I have terrible death anxiety. I get so scared (am so scared) of death, that it's all i think/dream about and I think about my death all the time. I get really wound up and frightened, I want to see my children grow up, and don't want to die...

This, as a result, makes me a very bad hospital patient. I get really anxious, and try at all costs available to me, to discharge myself.

What can I do?

I dream about my own death, and calling out to my grandad because i'm on my own and can't find anyone.

I'm just so scared. Are there any ways of dealing with this anxiety pro actively? I hate feeling like this. My next Ritix is on Friday, and I have a fear that I won't leave the hospital. Help. :-(

[Sangye]

Oh Gwenllian, I'm so sorry you're suffering with this. You need to get help from a therapist. Since you've had Wegs for so long (and at such an early age) and you've had so many complications, it's no wonder that you have anxiety and depression. You might have PTSD (post-traumatic stress disorder). Very common with all of us. Please see if you can find a great therapist to help you. I started with one as soon as I got dx'ed and I still go every week. I couldn't have survived without it.

[gwenllian111]

Sort of glad i'm not the only one! I have found talking therapy helpful in the past, as I did have some a few years ago after the traumatic birth of my first little girl.

WIsh I could rationalise the whole anxiety I experience, but i'm finding it hard to pull myself out of it. Very frustrating!

[DEE]

i gave in today and had a session with a counciler which my work place are paying for and the one thing that came out of todays session is how many emotions we use up trying to deal with this dieases
she suggested instead of filling my head with all the different feeling wether good or bad to write them down just for me
i didnt know were to start so i found a list on the net of different emotions infact 40 and when i went through them i realised just how many i use up in just the past few days and when i put the reason why i felt a certain way it became alittle clearer that its alright to be this way we have lots to deal with
the other side to it is i was actually speaking to some who i have never meet it was a teiephone session ( my choose) someone outside the medical or family box ! who also to me to stop judgeing myself to harshly
not to look back but forward i know we tell each other to do these things but not always easy i know
i dont know if this is of any use but im going to give these things a try an other way forward is she said was to write down the things you want to do even if small steps
i think its worth a try as my brain somet
ime has overload too DEEx
please take care of you

[Jack]

Something else you should consider is the effect of Prednisolone if you are taking it. This can have a big emotional impact on some people. Otherwise, some feelings of depression are perfectly normal - who would not be a bit pissed about getting this awful disease? However, obsessing about it and having constant anxiety needs some external help. Don't be afraid to seek it, there is no shame involved.

[JanW]

I agree with Jack. I know the few times I was on pred even at fairly low doses, I had a lot of depression, and I know that some people have terrible anxiety.

And your current sat levels are no doubt playing a role. Not having enough oxygen will do that to you.

Please seek help and whatever medications you need to combat the horrible effects of this traumatic disease.

[Brooke]

I have been on zoloft due to the anxiety I get from the prednisone. I am tapering off of both right now though. I usually had it at night time and there were times the only thing that would help is for me to call my mom and I would go to her house and she would talk to me to calm me down and rub my back and tell me everything is ok. I'm a total mommas girl though! haha.

[Hayley]

Gwenlillian, I am so sorry to hear about the anxiety and depression that's just awful. As everyone has mentioned prednisone can have serious mood effects. I too was diagnosed at a young age and lived in denial for years. Going to a therapist is the greatest thing I could have done. Once I accepted my disease and looked forward rather than at the past not only did my anxiety decrease but my ANCA blook count went down. Learning how to find balance in life and with your emotions is essential. The therapy I received as a child is what has made me who I am today. In December I will be a licensed child life therapist and look forward to helping other children. Don't be afraid to talk to seek help.
You are in my thoughts and prayers.

[elephant]

Gwen, I was felt desperate last year, and so thankful my family( mom, mother in law, father in law) was here. I could not of done it without them. It can really overwhelm your life. Getting a therapist involved will help you deal with all this. We are here for you!

[Hammy8241]

Gwenlliann, a trip to the man (or lady!) in a white coat (have you noticed they never seem to wear them nowadays do they?) has to be they way forward. They have the skills to get our concerns back under our control.

I don’t know if any of this will help, but when I was in trouble and seeked assistance, this is what got me out of the doldrums .


1. Try to keep busy
2. Don’t fuss over trivial issues
3. Use the ‘law of averages’ to downscale worries
4. Co-operate with the inevitable.
5. Decide just how much anxiety a thing is worth and refuse to give it any more time.
6. Don’t worry about the past.
7. Prioritise issues and Live in day-tight compartment. (only tackle problems that have to be with dealt with today )
8. Then ask yourself: What is the worse outcome that can possibly happen?
9. Prepare to accept the worse.
10. Try to improve on the worst

I found the bold items a great help when I was having problems and I still use them every day now.

A friend who was diagnosed with cancer was also concerned about her children not having a mum when they grew up. Eventually she came to terms with the fact she may die and tried to improve on the outcome. How improve? She bought a video and recorded a birthday message for each of her children for every year until they would be 18. The first couple were very hard but as she did more they started to become fun and a focus for her. Just trying to suggest that by channelling your fears into something positive can help a lot.

Good luck for Friday and I'm certain we will talking to you next week. After all the hospital won't let you die as it ruins their statistics and creates loads of extra paperwork for them!

Gwenlliann, do keep talking and please do continue to update us on your progress. You are not alone even if there are a lot of miles between us all.