Does anyone else just get to the point where they can't be bothered anymore. I'm so fed up with having to deal with all the complicated systems of lupus. Sometimes I find it hard to talk cause everyone has so many different problems.
Sorry if I've put a downer on anyone but just had to get that off my chest
Sometimes it just takes writing it down and hearing from others that we know *exactly* what you're going through to give you a new lease of life. I don't know about you, Clairebear, but I always find I'm much worse off in the dull days of January and February, when it's been raining for weeks and the house is filthy because I hurt too much to even consider dusting . . . but then something will happen - a pair of bluebirds in the garden did it for me this morning - and I metaphorically gird my loins and get back on the horse. This is *such* a horrible disease - but yesterday my friend had a tumour removed from her salivary gland and she has to wait two weeks to find out if it was cancerous. Last year she lost the hearing in the other ear (due to a growth) and 2 years before that she lost her husband to cancer of the larynx. And last night, when my friend and I blagged our way into hospital after visiting hours to see her (wonderful nurses: a *lovely* change!) she was laughing with joy because she can still smile (a possible side-effect of the surgery). It sounds so trite, to count your blessings when some days I feel like I don't even remember what a blessing is, let alone have enough to count them, but it is (sadly) true`: there's always someone worse off. And here's the thing that keeps me going when I hurt like **** and can't get out of bed: every day is a step nearer a cure. We already have far better drugs that we did, and medicine is coming on in leaps and bounds. So just because we don't have a cure yet doesn't mean we won't - it may be a month or a year or even a decade, but I for one will be ready and waiting! Hang on in there, Clairebear: things will get better!
Thank you x
Often. But despite that, my body gets up in the morning, enjoys a cup of coffee, laughs at jokes and basically carries on living regardless. Who am I to argue, so I just get on with it. Chin up, it happens to all of us once in a while.
Hi Clairebear,
I'm sorry to see that you're so down at the moment. Do you have a good relationship with your GP? Maybe you could jot down how you are feeling and give it to your GP on your next visit if you are finding it hard to talk to somebody.
They may even be able to provide some additional support for you.
If you need to talk, obviously, please continue to use this forum as much as you need, but please also get in touch with us if you'd like somebody to talk too as we have contacts all over the UK that have lupus themselves so they can understand and are there to listen.
You can reach us here at the National Office on 01708 731 251.
Take care,
Hayley
LUPUS UK
Hi Clairebear,
No you haven't put a downer on anyone, we've all been there and this forum is there to give support to each other, even if we are in a downer. The nature of the beast is innumerable symptoms that we have to cope with but rest assured you are not alone, and you are definitely not alone in getting fed up with it! I couldn't agree with Carcrashgirl more, find something in each day that pleases you, don't worry about the housework, pace yourself hour by hour. I normally decide to do a very small job, that would perhaps take 10 minutes and find that the distraction sometimes works so that I can do a bigger job. Having said that, some mornings the main job of the day is to get up!! Lazy cat or what?
Try not to worry, the downer will pass eventually, just take it day by day and know that we are all here to help so if you need to get it off your chest, then go for it!
Here's a hug to try to help.
Kath
Thanks Kath x
Sending you a hug Clairebear....it's tough feeling so low. We struggle with managing the condition, it's unpredictability, lack of exercise due to fatigue/condition and for me anyone I have to make more of an effort to socialise as there is so much effort needed and the fear factor that we won't be able to make it on the day. I can relate totally as had a kidney infection this past week too and have also felt unmotivated and flat. It's wearing have a chronic condition and watching others live their life normally is also hard. It is hard to explain to others how it affects us as it changes so regularly and I think we seriously 'underplay it'. It is really important for us all to remind ourselves that lupus is chronic and that if we need meds to help with low moods then that's ok. If we had a broken leg we would put it n plaster. Somehow we beat ourselves up that we are not coping if we have to get help for depression when it really is a sensible option if it does not lift. In the mean time I try to remember what my grandmother used to say....."Tomorrow is another day when everything will go your way". Here's hoping Clairebear I really do xx
Thanks for the hug and kind words xx
Hi clairebear, like everyone has said, we all have these days. I am slowly beginning to accept that maybe I do have depression from time to time. I never link it to my lupus. I seem to have convinced myself that it's 'everything else' !!! The problem for me is telling a doctor. Because pre-lupus, I was dismissed as being depressed and anxious, I now feel like I can't admit it to any medic. It's as if I will be going full circle, even though I am diagnosed. I'm also afraid that if I talk about my condition at the Drs, they might keep throwing it back in my face. Sounds daft but I went through a lot to get where I am now. Maybe it has scarred me. !!! Hope this feeling passes for you soon. Take care.
Hi 6161
I so agree with you, I haven't forgotten the bad experiences from the medics I have had even though they were years ago! Your blog was very moving. You've been thru so much. Keep fighting.x
We definitely all understand this feeling and have days/times like that. I recently found a counsellor/life coach in my area who specializes in chronic illness and in just a couple of visits went from feeling like you to much much happier. It helped to speak to someone who wasn't family. I hope things improve and the outlook becomes brighter.
Hello there clairebear
Glad of your post: that you let us know how you're feeling
Very much feeling for you. Am 60 now, and joined lupus uk and this forum just over 2 years ago when my lupus was recognised. Before that i had spent a lifetime coping with the system in isolation, my infant onset lupus undiagnosed. I became very withdrawn and felt very isolated, but, ok, for years I coped well enough for those around me not to see how low I felt emotionally and how increasingly poorly i was coping emotionally....and that I was feeling as if I couldn't be bothered anymore cause it was all so hard and unrelenting...but, of course, my physical/health probs were obvious to all)
Like shannonB, i finally reached out towards therapy. My good fortune was that I already knew my therapist in another context, but if I hadn't had her to turn to, I feel sure I still would've found the right counsellor. Anyway, we worked well together, and I gradually discovered a new way to look at my life, which helped me to feel happier and more at ease with my predicament...and meanwhile, I found both a rheumatologist with the insight to recognise & treat my version of lupus AND i found lupus uk: my local support group meetings have led to several very special friendships that have stood the test of time, as has this forum. And l feel this all is down to me learning how to do the reaching out thing
So, I'm glad of your post, and I'm glad you're here
Take care
Hi we all get like this at times and so I sympathise w ith you. Talk to you doctor and tell him you're feeling really down. I did and my doctor put me on fluoxetine and it does help. Don't leave it too long because it's hard to get back on the level. The people on this site understand your feeling so keep posting and you will get good advise. Good luck and let us know how you get on. X
Hi clarebear.
I feel the same as you at the moment fed up and feel quite ill but i have a fantastic GP but i feel like i don't want to mention anything anymore as it seems like i am always moaning, Its very difficult to live with but i have to keep telling myself i have to keep going but its very hard.I am in the middle of fighting my ESA claim they are on my case and its only been 9 months since i filled all the forms in it does not make sense i have been warded DLA for life but we no thats not quite true as its gone over to PIP but i did receive a letter saying they would not bother me till 2015 so i have a bit of breathing space but i am finding it so hard as we seem to be all made to look like liars.
Sorry for the moan i am on 26 different medications , oxygen, nebulisers, the whole system is crazy.
Take care xx
Hello Clairebear
I was having a particularly bad day yesterday so can entirely sympathise. And people on here were so nice!!!
I have friends to dinner this evening so that worked me up yesterday as I couldn't get out of bed. Never mind - they can have supper instead of dinner, and it may come out of some well disguised tins. They are old friends so you don't need to maintain a front with them.
Carcrashgirl was right in that we can hope that treatments will improve and that there might be a cure someday. I know some lupies also have diabetes, which must be real fun to manage, but look how that treatment has improved (My daughter has that). And I know that whenever I go to hospital I find people who are so much worse off.
So Clairebear, lets hope for a better day tomorrow
Lots of hugs
Margaret
You're not a downer!I'm right there w/you~EXHAUSTED!
Hi ClearBear,
I just call it 'restart'!! I need a couple of days to be left with myself (usually during the weekend, that's why my husband doesn't like weekends), go through depression, cry, think, evaluate, question why me (I am a good person, I've not hurt anybody), yes why not? Me-I can take more, I am not afraid, I will win, and back on my feet again.
My little boy aged 3 gives me the lots of power to motivate myself and behave as a person without Lupus & APS!!
All the other days, I am doing much better than my husband, more active, more responsibilities, more smiles!!
Always remember that it doesn't matter how many times you will fall down, What it matters is the number of times you will back on your feet!!
Love,
Sophia
Hi clairebear, your entitled to voice your true honest opinion about your experience. I can relate. How long have you been diagnosed? I'm sure a lot of people including myself can relate to your experience
Flare up & fed up 
FED UP WITH BEING FED UP & TIRED
Fed up now :-(
Flaring and fed up
