[melanie ann]

hello all, been a while since i have posted, have been on but havn't been able to talk or help... gonna just type if you all don't mind.. think i have been in a bad place, pain, moods,confusion,pain, long periods of bed...not sure what caused it, upted my meds alot, doc's gave me diazipam ? don't know, but took me somewhere where i didn't like, not just the pain, maybe depression...cant explain it..finding it so hard to talk to anybody....lots of family stuff, father with alzitmers (cant spell it) maybe he has brought me round, he told me this morning he didn't know who i was !....i couldn't ask if was because of how i have changed or because he is ill..but god it hurt..so please i need your help, i have been back to the docs and explained how i feel and they want to take me of the diazipam, try something else..i know it's prob more to do with my family life then anything else, stress, gets hard here sometimes, not to sure i have the strength to deal with it..friends are a little low on the ground at the mo, everyone always thinks i can deal with anything.. i don't want to feel like this, i really don't , this isn't me... i want me back !! oh i am sorry to go on, i just feel the postive me is disappearing,it scares me...

 

[Katharine]

Hello there,

I had been wondering how you had been getting on but I'm sorry to hear that it's not so good

The positive thing is that you have talked to your docs as something does definitely need to be done. When you get to the overwhelming feeling of not being able to cope you need help from somewhere and if you're not getting it from family and friends (and sometimes even if you are), then you need help from somewhere else.

Have they suggested maybe a referral to someone who could possibly give you some counselling as well as working with meds?

There are plenty of other people here who have far more experience of this than me, hopefully they'll be along soon with some good advice,

in the meantime hugs :hug:
Katharine

 

[LolaLola]

Dear Melanie Ann,

Hi there, please don't feel you need to support any of us at the moment, you have your own worries. Let us be here for you. Just spill it out for us.
Love Lola x

 

[wheeliefab]

hello sending you hugs, hope you feel better soon. I think I understand how you feel and it's horrid to feel your positivity draining away. however please remember that things can get better. Also keep pushing your Dr for proper support, councelling, possible referal to mental health team etc

I've had bouts in past when I've been depressed, in lots of pain, or just finding it hard to motivate myself to even get up, and for me I find setting myself just one task for the day such as making a favourite meal or forcing myself out of bed and going for a short walk have helped me get the "spring back in my step".
It's at the times you least feel like doing anything that doing something has most benefit. I also think that following lupus diagnosis we all need to give ourselves time to grieve for the "old you" and adjust to the "new lupus you"

Personally the more "in control" I can make myself the better I feel. Actually just staying in bed too much does not help me so I try to force myself to be up before 11am every morning regardless of how bad I feel (believe me this can be really hard at times and I've even been known to go back to bed a few hours later but just the act of getting up, dressed and having breakfast often helps me)
I use a technique where I allow myself a whole "do nothing" day resting/ sleeping/just feeling sorry for myself with the promise that the next day regardless of how crap I feel I will do something - this something may be as simple as "I will phone a friend", "I'll read a chapter of that book", "I will have a pamper day where I have an aromatherapy bath, put on make up, try out clothes combinations to see if I can revamp my style with what is in my wardrobe" or it may be more ambitious eg "I will go swimming", "I'll tackle that job I've been putting off". Just doing something where I'm a bit more active or doing something other than thinking about how much pain I'm in does actually help me.
Friend can also be a great support so try re-establishing contacts with positive supportive people, or making new friends who accept you as you are "lupus and all"

Positive affirmations also work. (you say them or even better write them down -even if you don't believe it at the time they do work) here are a few:-

I love and approve of myself, I am safe

I trust the process of life, all I need is always taken care of, all is well

I now chose to create a life that is joyous and abundant, I am at ease

I allow my mind to relax and be a peace, all is well

I release the past, I live in the now in peace and joy

Divine wisdom guides and protects me at all times, I am safe

I freely and easily release the old and joyously welcome the new

I give myself permission to be all that I can be, and I deserve the very best in life, I love and appreciate myself and others

I am willing to change and to grow, I now create a safe new future

Hope this helps, best wishes for feeling "as well as you can be" soon

By the way your fathers comments are very likely to be due to the alzhiemers and not anything to do with you (my friends mother has this and often does not even know who her husband is) however try not to let his condition stress you out (stress makes lupus worse) and don't be affraid to ask for outside help for him, or to stop doing things that take your energy/ because people think you can cope - I think you need "me" time and there is nothing wrong with saying to others sorry I can't do that at the moment

 

[melanie ann]

katherine,lola,wheelie....thankyou for your words,this is what i hear all day " pull yourself together what about me " i hear that alot here at home,friends family ect....something i know that i wouldn't hear from anyone on here..
wheelie thats a good idea... thankyou.. katherine sorry not been intouch... lola thankyou..
im am trying to kick myself into doing something, katherine it was going so well, i remeber telling you on msn..i don't know what happened,like someone just threw me into a black pit after having kicked ten bells out of me..my head is clearing, from a fog and the intense pains i was getting in it,not to mention my body..i feel like something is holding me back from getting on...i keep having real bad dreams (when i sleep) im smiling walking about and i get hit by something that knocks me off my feet, and thats where i stay..overe and over again...so i am tired to through lack of sleep haha whats new with that.. god i am so moody, one min fine next ripping someone's head off, it's like i have had a complete mood transplant..my legs won't work...but doc says that's in my head !! because of my moods ....hands well work through the pain on that one, can't do much without them.. body eek..or yuk..
god i have just read this back....i hate to moan, i hate being low, i hate me...i don't want this ,thought i had come to terms with it...i havn't...will see doc again this week about counciling, think i have to..i just need to ramble..don't see remo till april now..might change that..i need to change so many things...i know have to find a way of dealing with this...i feel like a child having a tantrum, well i have been told that by the nurse..but thankyou ladies being able to ramble helps

 

[Katharine]

Hey Melanie ramble away!!! No worries, that's what we're here for.

Just one thing that is really important - You must never ever ever hate yourself!!!!!!

Believe in yourself an others will believe in you!

I know, it's easy to say and when someone first said it to me I thought "yeah sure" but it is really true and you should have it in mind all the time.

Katharine

 

[karen.w.]

((((((melanie))))))

I really feel for you :sad: you sound so down,I'm glad you are able to open up to us though I hope it has helped.

you have already been given good advice melanie I just want to add that if you feel up to it try & pop into chat & we will try to help or just be there to listen.

just remember that this isn't you this is the illness..family problems on top don't help so it's not suprising you are feeling overwhelmed.
you are still new to this disease,still going through a period of adjustment & not established on your meds at the moment.hang in there,it will get better.

counselling is a really good idea at the moment,to help you through this,I hope your gp can arrange this soon for you.good luck

sending you big hug's melanie :hug:
take good care..karen x

 

[melanie ann]

back again, blimey i have started rambling can't stop now.... thanks for that katharine
this could be a good thing, it's all happening today, head is spinning...i have just had a visit from a so called friend, having a go at why i havn't been in touch with her as she has had a bad cold !!! and that i am not much of a friend...i havn't heard from her in about 2 months, she got upset when i couldn't go shopping for her ! she saw i was on the internet, on this site .and wanted to know why i chose to come on here instead of helping her...
so i showed her my posts and the replys, all of them, and what kind and supportive people you all were, and that's what i needed.. not the abuse i was getting from her..so i went and printed that normals letter in the family section and sent her away with it...this will sound bad but i feel better for letting her know how bad she has been behaving towards me...i just hope that isn't selfish as i don't normally have a go at people at all and never like that....eek...told you it was affecting my moods

 

[LolaLola]

Dear Melanie Ann,

Glad you can vent it, and really Well Done for standing up to your "non-friend",
I can fully appreciate that you would rather use your limited energy here, where people care about you.
Almost all my best friends are fellow lupies, because we don't need to explain it all to each other. Sometimes "Normals" just don't get it, so use your energy for you.
Big Hug for progress so far,
x Lola

 

[melanie ann]

i have been doing a lot of thinking last nite and today, had a bit of a problem again with hubby last nite, which kind of has determined how i feel today..i have had to make some major discisions today, prob not such a good with emotional state and ect, but when is it a good time...i have spent a lot of time reading things on this site, talked today to lots of people. i can't go on like this...all of this is effecting me so bad, i have had constant hand shakes for over 24 hours now (not had that before ) heart going like the clappers constantly. the emotional stress on top of lupus and fribro is just to much..im letting my children down so much and i hate that..so now i have made the dicison i now have to find the strenght to do it.......thats the scary part, anything has to better then this !

 

[Katharine]

Hi Melanie,

I don't know what kind of decisions you are talking about but please remember, as you said, that your emotional state is not the best.

I think a decision to get some counselling and direct support is about all you should do for now unless you have a decision about a holiday away from it all someplace nice and comfy where someone will look after you!

Please feel free to get in touch with me if you want to talk,
hugs,
Katharine