depressed.

[sandwiches]

I am not having a good day today, i just feel like crying. I sometimes wished i wasn't here. But i just try and put those thoughts out of my mind. I feel i have no life. i thought that after i had my transplant that i would feel better, but all i feel is despair. There are days when i think to myself that i made the wrong decision in having a transplant but then i think of the person who died so that i could live. I have no one to talk to who understands what it is like to have lupus. Everyone thinks that i am alright after having the transplant but i can't say that i am not as everyone thinks having a transplant is a cure. Thank god for lupus unlocked. I don't know where I would be without it.

[Alan55]

Cheer up sandwiches we all have days like this along with all the strange pains and odd feelings but we know that tomorrow should be a better day take care Alan

[sandwiches in reply to Alan55]

Thanks alan. I know tomorrow will be a better day.

[adrian_holland]

Today's thought of the day.....What use is the 'Spoons Theory'? When all you ever seem to pick up are forks, and what good is that when you never have a clue how many you had to start with?

[overnighthearingloss in reply to adrian_holland]

.....or if uri geller is about and bending them all.

Everyone feels down at some point. Its normal..What this disease does is forces you to make changes. Sometimes it is possible to fight back but sometimes you just have to make compromises

Take it a day at a time

[sandwiches in reply to overnighthearingloss]

I am fighting back, just having a bad day today. I am trying not to be too down but sometimes something just clings onto me and i don't know how to shake it off.

[sandwiches in reply to adrian_holland]

thanks for the theory adrian. Who knows how many I picked Up, just needed to stop picking them up!

[Hidden]

Hi sandwiches, I can understand to a degree, as my brother has had 5 kidney transplants. He is of course grateful to the doners family's, but that does not mean he was on top of the world, when he received them. I know you will be on masses of anti-rejection meds and having plenty of hospital visits. Like you, he has other illnesses to cope with, so not fighting fit. He does suffer with depression from time to time, and this is all health related. The surgeon he had all these years, retired. (A very long history between them as, my brother was the first child in uk to have dialysis and transplant). The surgeon forwarded lots of hospital notes to him, as he felt they would get,'lost in the system'. These contained details of the doners, and my brother has not been the same since. As all the transplants have failed, and he now lives on dialysis, he feels he failed the doners. He has been offered counselling, but refuses, as he thinks it's not manly. As you so rightly say, it is not an instant fix. It takes a lot to come to terms with.

[sandwiches in reply to Hidden]

I had counselling when i was on dialysis. I was very depressed after being on dialysis and being in and out of hospital for over ten years. It was a big help for me, I was seeing her once a week at the hospital that i was having dialysis. I no longer have counselling as i didn't feel the need to see her anymore. Maybe I need to talk to someone so I don't always feel so down all of the down. Thanks for your reply.

[Hidden in reply to sandwiches]

No problem, wish my bro would see someone. Take care.

[sandwiches in reply to Hidden]

Thank You.

[mstr]

Hi, Sandwiches, sorry you are having a bad day. I'm not surprised as your body has undergone a massive change and a huge emotional turmoil. Just try to take it all one day at a time....I can't imagine the changes you have gone through. Do tell your GP/health professionals too if the depression will not lift as they will be able to help you. Take care xx

[sandwiches in reply to mstr]

I saw a doctor once before about my depression but all he wanted to do was put me on anti depression medication which i refused. I don't want to be reliant on them. Thanks for your reply.x

[mstr in reply to sandwiches]

It's such a difficult one isn't it and of course you have to do what is right for you. If meds isn't the way forward it may be that you can get support. It's such a huge thing to go through so being able to talk about how you are feeling to someone other than friends/family can help. Of course......the other alternative is to say how you feel on this site which is wonderful. I find that there is always someone on here who has been through similar situations.....and that helps so much knowing others understand. I hope things get easier xx

[sandwiches in reply to mstr]

It's good to talk especially on Lupus Unlocked. Thanks for the reply.

[Slowmo]

Sandwiches, sorry you're having a tough time and I hope that you do pick up soon. It's inevitable to feel low when faced with chronic illness let alone when dealing with major surgery. You did do the right thing in going for the transplant and I'm sure you know that 99% of the time but like everyone you're bound to have off days.

Have you tried to find out if there is a lupus group in the area you live. I've made good friends by attending meetings in my area and have attended social events and so on. It's good to be around people who know how you feel.

Please take care and I wish you well.

[sandwiches in reply to Slowmo]

I don' t know if there any lupus meetings in my area. as i have no transport, it can't be too far. I rely o n lupus unlocked a lot for support. If there is any in nottingham I would love to know where there are. Thanks. Your words have been appreciative.

[Chris21]

Hope today's a brighter day xx

[sandwiches in reply to Chris21]

Thanks chris21.

[SLE15]

As already said, we all get days like this.

So don't put pressure on yourself to be "fantastic" after your transplant. I think it is easy to get caught up in stressing about feeling how others think we should. And then it's like, are they right? What's wrong with me? Why don't I feel like I SHOULD? What does that even mean!?!

You know your self better than anyone else and only you can know what you need from one day to the next to keep yourself going. So as long as you do keep going and keep fighting, then today is a win.

Sending you happy thoughts,

SLE15

[sandwiches in reply to SLE15]

Thanks SLE15. I will keep it in mind. Already thinking happy thoughts.x

[Purpletop]

I get it. Life is good while we have hope. When we are healthy we believe that illness will never hit us, or if it does, then it will be one that is easily recognisable and easily treatable. While healthy we imagine that, should illness touch us, we will carry it out on our feet whilst just popping some pills here and there.

Nothing prepares us for serious illness, or an illness that's not that well known, nor curable or one that is so dangerous to our bodies that we have to chose between being killed by medication or by the disease. The more we descend into the vortex of knowledge about what ails us, the less sure we become that we will come out unscathed and the less hope we have that life will right itself in the end.

And then we start thinking - if we are going to die anyway, is there any point in making such an effort to stay alive?

Here's the thing - that question is valid from the moment we are born. It is only our perception of the future that changes. But try and consider this - if you're here anyway, why NOT prolongue it? Give yourself permission to live. I'm not saying that you need to be wildly happy (no one really is all the time anyway) but just be content that you are here, that you can still see the sun outside, that you can still enjoy to look at a flower, that you can still smell a perfume, that you can still get annoyed at people (which means you still care). You don't need a grand plan for life, just being alive after such trauma as the transplant and illness is a huge achievement.

As for others not understanding - they can't! Yes, they can be a bit more sympathetic but deep down they can't get it. Try not to blame them, just take care of yourself by yourself, no one loves you more than yourself.

I know it is hard now but little by little you will come out of this - we were born with fierce survival instincts, regardless what our upset minds are telling us, our bodies will make us keep going.

[sandwiches in reply to Purpletop]

I am making sure that i take care of myself and not others. I think the problem was that i had to put other people before me,now that i don't have to anymore i need to make myself happy. Thanks for the reply. x

[mstr in reply to Purpletop]

Purpletop....you have said this so wonderfully.........hope is what keeps us going....and you are right that instinct to fight will kick in and the resilience to hang on in there. Great words!

[Paul_Howard Partner LUPUS UK]

Hi Sandwiches,

I'm sorry to hear that you are low. Have you made contact with your nearest lupus support group? It might be helpful to meet some other people who will understand you and offer you some company and support. If you need details for your nearest group, let me know whereabouts you live and I will send you the details.

It may also be worth talking to your GP about your low mood if you haven't already. They may be able to advise you on some therapies that could help.

[sandwiches in reply to Paul_Howard]

Hello Paul Howard. Can You let me know where the nearest lupus group is in Nottingham, it can't be too far as i have no transport of my own. I haven't spoken to my gp yet but it would be worth talking to him. Thanks for all of your help everyone.

[Paul_Howard Partner LUPUS UK in reply to sandwiches]

Hi Sandwiches,

Your nearest group is the East Midlands Lupus Support Group. Here is their website with their contact details for you - eastmidlandslupus.org.uk/co...

[sandwiches in reply to Paul_Howard]

Thanks a lot, paul. I will get in touch with them.