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!:D

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.

[brocky99]

I am feeling very down this week had a few crying sessions to myself. I am scared of the what the future holds, I am hopefully due to start dialysis soon and that is playing on my mind all the time. I am not scared of dying but dont want to leave my 2 beautiful children aged 12 and 8. None of my family will get tested to see if they r a match for a kidney transplant, my dad and mother in law have been ill my partner is petrified of needles and hospitals my mum and dad, I think, think I have a cold and I will get better. My father in law has offered to be tested but he is 68 this year and I thik it is too much for him. My mother in law has been fantastic within the last 2 years she attends every appointment with me, she cleans my house if i am too tired she has my youngest when im in hospital so that he can keep in a routine. My mum and dad dont even know when my appointments are I dont see them from 1 week to the next. The most I see them is when I am admitted to hospital which is 3o min drive away yet I only live 5 mins away and might as well be other side of the world. Even when I ahd my fistula I was told not to drive for 2 weeks then I brocke my metatorsal and I couldnt drive for another 4 weeks and I never saw them once not even a phone call to see if I needed anything. This really upsets me and I think of it a lot. My partner burries his head in the sand he doesnt cope very well with illness and at the mo he is working from morning till late every day of the week incl. weekends so I feel as tho I am doing everything and coping with the kids and running the house and alo my illness and the future. Sorry for droning on but needed to vent my feeling before I go daft.

[katarzena]

I completely understand how you feel. When I was first diagnosed and started the therapy all I could think about was death. I even started thinking what would be the easiest way to hang myself and where in my apartment. Now I fell better but stil have my moments and if I got a chance I'd probably do it which is quite sad.

[elephant]

Brocky99 and Katarzena You are doing great trying to manage all that, at the same time it is frusterating to feel alone. Before my kidney transplant 1989, I was extremelly weak and tired, in those days they did not have epogen....had a hemoglobin of 4. Your a strong woman. It is great to vent on this forum, because I lost some friends because they were sick of me being sick. But then they are not my friends, found out the hard way.

[Jack]

I'm afraid that the reality of life is that most people don't cope well with others being sick and tend to turn their backs and get on with their own lives once you are off the scene. It is not their fault, it is just the way many of us humans are made.

Life on dialysis is not great, but it is still a life. Don't pin all your hopes on a living transplant, it may well not happen, but a cadaver transplant is just a matter of luck and time. Mine took 18 months, but was the best thing that has ever happened to me. However, you do need to enter the entire process with a positive attitude, it helps a lot and may even be considered to be a critical factor. You need to get your head straight if you are to cope well with this disease of ours!

Coming to terms with death is something many of us have to go through, but it is possible to work your way through the worry and become comfortable with the idea. It is something we should not be afraid to talk about and this Forum is one place where you can feel safe doing just that.

katarzena - you are not the only one who has planned an exit strategy, there comes a point when quality of life has to rule over quantity, but lets hope that we are not nearing that stage just yet.

brocky99 - vent all you like! you have a lot of crap to vent about and your feelings seem perfectly normal given your circumstances.

Sorry for the fragmented style of this post! ;)

[Hammy8241]

As the saying goes “ a trouble shared is a trouble halved” and just being able to off load it with people who unfortunately, too often do understand some of what you are going through, I find to be a great help.

Despite often being surrounded by family and friends it is often we still feel lonely and isolated. I know I do. This, I find is where this forum comes into its own – uncompromising support without blame, understanding and patience, unbiased views and a knowledge base that is second to none . Guidance & nagging is free!! Also being worldwide there is usually someone able to reply at any time day or night.

I hope this does not sound patronising as it is not meant to, but IMO, you should all be really proud of yourselves, coming here and a saying your pieces. It takes a lot of courage to write so openly and with your hearts. Death is on another thread and perhaps one day I will have the courage to add my thoughts there.

Whilst I agree with what he says, I’m not so understanding as Jack, I say the so called friends can just ‘sod off’, it’s their loss not yours.

[Jack]

i’m not so understanding as jack, i say the so called friends can just ‘sod off’, it’s their loss not yours.

lol :)

................

[Sangye]

Brocky, you are doing a great job for someone who is almost completely lacking a support network. I know I sound like a broken record, but therapy really helps with all that. My own family has nothing to do with me-- no idea if I'm dead or alive. It was awful at first, but I made my peace with it. One thing therapy taught me is that I have 2 choices with how I deal with it: Retreat into a hole and accept their version of who I am (eg someone who is not worthy of being cared for) or Remember that what they think only reflects their own weaknesses/ fears. The first will weaken you, the second will strengthen you. You can expect to have to deal with that choice over and over. It's not like you can declare it one day and it never comes up again!

The other amazing thing that happens as you begin to choose to value yourself is that others will begin to offer help spontaneously. Probably not your family, but other people you meet in life.

Take care of yourself. You deserve it. :)

[elephant]

Yes, that is why I start mentally to take charge and live life!

[DEE]

i have defferently realised who my true friends are since dxt and have learned to accept this ---their lose not mine DEEx

[Kimbangu]

Interesting thread this. I recently lost 2 VERY old friends who I hadn't seen for several months. They live about 90 miles away. We had been corresponding by email. They knew all about my WG but when I turned up at their home you could almost sense their disappointment that I wasn't bald, wearing dark glasses and using a zimmer frame. In fact they seemed incredulous that there was anything wrong with me .....and there was an "atmosphere" to say the least. Based on this experience I'd say that part of the "new reality" involves looking at your friends, family and acquaintances and deciding which ones are truly supportive, and which ones are just enjoying the freak show.

[Sangye]

I'm sorry that happened to you, Kimbangu. I've had this reaction, too. I've often pointed out to people that the only cultural image we have for serious illness is cancer--wasting away, ashen, sunken eyes, etc.... We don't have any way to understand looking fairly normal but being extremely sick.

[Col 23]

I too suffer good and bad days and on the bad days I had exit plans galore. Now I trick myself by saying when I get organised then Ill do it. Knowing that I will never get organised. I also start to think of how awful this would be for my children. But at the end of the day I just cry and keep trying to think of a way I can get out of this nightmare. Sometimes just trying to find a distraction or if I can getting out of the house helps. I keep thinking there must be something Im missing. If all else fails I make a cup a tea in beautiful pot/teacup and make fairy cakes. We at least have each other when times are tough. Not well at the moment so if this doesnt make sense thats why.
heres to cheers and less tears.
Col 23

[brocky99]

Feeling a bit better today, had a long chat with my sister last night and she has said she will look into what is involved with a transplant, she is worried because she has a 3 year old and doesnt want anything to happen that will affect her daughter, but at least she has said she will have a think about it which makes me feel as tho someone cares. I think my depression and other feelings have just been a combination of the last 2 years, In Aug 2006 we took over a local pub and this had always been my dream I also worked fulltime then part time in a small office with only another 3 people. I worked there for 14 years but the office shut in June 2008 and so I miss the intense friendships I made with the people I work with although I see them quite often its not the same as day in day out. When I knew about the redundancy, I was happy because I was going to concentrate on running the pub and it would mean my partner cud go back to work, but I started with the joint pains end of may 2008 and by July could hardly walk or do anything for myself never mind run a pub. Then in Oct when they rushed me into hospital and diagnosed WG and I realised I was very poorly we had to make the decision to come out pf the pub trade. So I feel as though I have lost everything in 2 years, my job, my pub, friends. And I just sit at home all day because I have no energy, I have worked 2 jobs since the day after leaving school at 16, even on maternity I was back at work within 6 weeks with both kids and I also used to go in twice a week before that and take the baby with me. I have alway been very active not sporty as such just happy to run round after everyone and get involved in different things in the community etc., but now I cant do anything because I dont want to let anyone down. People look at me and say You r looking well, but as we all know its not the outside it whats going on inside that makes us ill and tired. I am a very positive person normally but have just had a week of feeling sorry for myself which I also think does u good because it makes u reflect, and the only way is back up which when u get there is a high if u know what i mean. So hopefully this week I will be on my way back up, got a family Barbecue later on so hopefully that will start the week off nicely and its fathers day tomorrow in UK so think we having another barbecue, make the most of the sunshine, we dont get it very often in Manchester, UK its normally raining. We dont get sun tans we just go rusty lol.

[Col 23]

Hi Brocky
Can totally relate, its not all depression but grief for our losses. Its easy to say look forward instead of back. I suppose its also loss of dreams. I also hate letting people down and they also do not always understand when you can look sort of okay but feel lethargic and sick. I just keep saying distractions distractions and even if its little or a small task Ive done something for the day. WGs seems like a game of snakes and ladders, good day, bad day, up and down emotionally. I was usually the one that motivates, coordinates, parties, gets excited about new things and was so energised. Now its weird to experience this new me. I keep saying this is temporary and I try so hard but I always fall into a heap when I push it. All I can do is try to do what I can on good days and accept the bad ones.
Hope this doesnt sound too depressing just that Im in bad day land at the moment.
cheers Col 23

[katarzena]

It does sound depressing but most of us feel that way. Especially the ones that are newly diagnosed and suffering awful prednisone side effects. The depression goes away for sure, it did for me since I've been much better and on low doses. I still have my moments but I know it is temporary and I have to get through this. I have many examples in real life of people going through treatment and they're completely fine and happy now. They all say the same thing to me: think positive and things will get better!
My aunt helped me a lot (she's a doctor) by telling me: this is the way it has to be now and you'll get through this just like others.
It helped a lot

[Jack]

Thanks for sharing your thoughts Col and Brocky, I think most of us can relate to them. I'm feeling doubly useless at the moment with all my mobility problems. Just getting out into the garden has become a major adventure and most of the time I am just sitting watching TV or browsing on my computer. I push myself to do as much as possible, but this only extends to making coffee or a sandwich. It would be easy to get depressed about the situation of knowing that I will never really be mobile again, but my target is to achieve some sort of level that allows an acceptable standard of life. I think this is possible, but progress is so slow! The secret is to set yourself achievable targets. :)

[katarzena]

Jack can you explain your mobility problems? Are they related to wg itself or medicines over years you've been on them?

[Jack]

Lots of problems with osteoporosis due to 25 years on steroids. Foot and leg pain perhaps due to Wegener's, but may also be steroid side effect. Muscle atrophy due to steroids. Recently fell down stairs and broke knee, wrist, shoulder etc. which I am now working to recover from.

[Deanne Hull]

Gwenlliann

There is no shame is seeking help, thats what we are all here for. I agree with every one and it is good to talk to someone else outside of your circle, it can help you with different strategy's to deal with everything, just take one day at a time and be kind to yourself.

Deanne

[pberggren1]

We are just one big therapy group.

[brocky99]

Now back from barbecue, unfortunately I fell asleep good job it was at my sisters and everyone there knew me. Tired now think I will have an early night tonight. The only prob is I will then be up about 2 in morning, but my housework will all be done for the morning thats a bonus of not sleeping at night thats when I tend to have the most energy. Col 23 hope u r feeling brighter tomorrow, this disease is so unpredictable I can have a good day and think great and plan the next 2 or 3 days with fun and the next day I am totally shattered and all plans go out of window so I like you have learnt to take one day as it comes, its the kids I feel sorry for because they never know if we r going out or not, but I do try my hardest to do things with them, but at 12 and 8 they do understand. I hope I will be ok on Monday cos we r having my 3 yr old niece for tea and I know I will be up and down and running around after her all afternoon but sometimes it worth pushing it and she is definately worth pushing it for, she is a bit young to understand she just like to feel the buzz in my arm where I had the fistula. Oh well I think its bed time. Take care till tomorrow x

[Jack]

When I have trouble sleeping in the early hours of the morning, I get up, but try to sit and relax in front of the TV rather than doing things (not that I can do much these days :( ). I then find that I can fall back to sleep after about an hour.

[pberggren1]

I too find that sometimes I have more energy in the middle of the night.

[brocky99]

Well didnt get too earlier night it was about 11ish, was awake for 5 tho and have been up from then, watched lasts nights big brother and done 4 loads of washing, washed up, had breakfast, just having a brew and then going to garden centre for presents for fathers day for the dads, (always last minute). Another barbecue later again at my sisters, she must be mad, and Bingo tonight Sunday Night is the 1 night I keep free for Bingo, I go with my sister I just hope we come home with some money in our pockets. Its a nice sunny day again in Manchester for a change hope it lasts for a few days, u always feel brighter when the sun is shining I think. Hope u all have a good day x

[Sangye]

I like your avatar pic, Brocky. You sound happier today-- nice to see. It's a rollercoaster.

[Hammy8241]

Brocky, Sue (my better half) is also off to Bingo tonight. Good luck.

[brocky99]

Yeah!!!! Won £200 not a bad nights work, if I say so myself. Tired today though, it was too busier weekend for me 2 barbecues and bingo, could do with chilling today but had my 3 yr old niece since dinnertime, we have been park and had a sandwich and picked my youngest up from school, my daughter just took her park so I can have 20 mins of peace. Roll on tomorrow, I think I will be doing nothing, Hospital Wednesday and Thursday, so tomorrow definately a day of rest.

[Hammy8241]

Cool. Well done. Did a lot better than sue (won £10 = £50 loss on night) Still some you win, lots you lose but it is good fun. I go too when we can afford it. It takes your mind mind of everything as they call the numbers so fast - so easy to let your concentration slip and miss a number. Sounds like you deserve your rest - enjoy.

[brocky99]

Mine and my sisters other halves think it only costs £20 for the whole night whereas on average we prob spend around £70 each but to be honest it isnt very often we come home with nothing sometimes its only £10 each and I have won a £1000 before now and her £500 so we dont do too bad but I do like my bingo more because its one night a week where like u said u dont have time to think about anything else but numbers. Having a chill out day today, doing nothing its great just prob surf internet all day.