[chilli]

i have been with my partner for 14 months now and since my diagnosis i have hardly seen him.

he says he gets stressed when he thinks about my illness. this makes me extremely crazily mad with him because he stays away-i get upset when he finally puts in an appearance-he gets upset bec. im moody so stays away.....and so it goes on.

i have spoken to him about how i feel when i am calm and when i have been mad but it seems to fall on deaf ears.........nothing changes. i have become suspicious and paranoid and worry constantly that he is seeing someone else bec. i dont have the energy for anything romantic.....this is a man after all who professes such great love for me?????????

i should leave him, pack the few things that he has here and drop them off.....but as sad as this seems.....if im honest i dont want to be lonely, and i feel like any attention is better than none...besides its better the devil you know.... my world has gotten smaller since i developed panic disorder and agoraphobia and the lupus dx knocked me for six and i know i am depressed. my counsellor says not to make any major decisions yet, but i am so hurt by the way he has been that i feel miserable (and look it) all the time.

my friends are few and far between and i lost most of them when i got ill with the pd and aggy. out of the 3 close friends i have left; 2 i hardly see bec. initially they couldnt deal with seeing me so depressed etc and now are too wrapped up to even call.

i am hurt beyond belief by the people i care about practically abandoning me.

the family i live with get on with their lives and i think that theres complacency when it comes to me being ill, bec. they are used to it and do not take anything into consideration, for example the other day my niece said to me when i ws complaining of feeling wiped out ''why are you tired? you havent done anything all day have you?'

my counsellor is right....i feel invisible. as i write this with tears falling i am wanting to break free and escape but the agoraphobia has me virtually a prisoner in my own home and i have to watch everyone going through the motions of getting ready to go out for the night; answer ringing mobiles when mine hardly rings and making arrangements with friends to meet up.

the one friend i have has children and a partner so is usually reluctant to go out or doesnt have any money.............

as you can see i am having a bad day today.....so thank you for 'listening' .

i dont like feeling sorry for myself but i invariably do......

oh and i got turned down for dla and a ccg so that doesnt help either.

 

[Taree]

Hi Chilli

Your frustration must seem overwhelming!!!
Do your family, friends and boyfriend have enough info on your conditions or do they just think you're "sick"? They don't sound very sensitive to your needs. Families seem to have a way of blocking out the things that they don't want to see and boyfriends... well... if ever I gain some understanding on that front, you'll be the first to know!

I know loads of aquaintences who would do the same to me if I were in your shoes. The few friends I have are friends for life, I would rather have 2 or 3, even just one really good friend instead of 100 people who don't really care.

I would very much like to be your friend so please keep in touch!
Hope you're feeling a bit better today.

X T X

 

[neongirl]

(((((((((hugs)))))))))), Chilli, you certainly have a lot to deal with:worried: My dad had agoraphobia/paranoia/depression. He was able to recover through the use of medication and therapy, so hang in there, there is hope and things will get better:wink2: . I think your counsellor is giving you sound advice when it comes to not making any major decisions right now.
Do you have any hobbies you like to do, or might want to try? I ask because woodworking really seemed to help my dad, it was something that he found peacefull and soothing, and it was challenging enough that he had to focus all of his attention on what he was doing at that time, which made him worry less. As for the "friends" falling away, I think everyone has a lot of people like that in their lives, good thing is they are easy to replace if you should wish to do so, easy come, easy go.....however I agree with Taree, better to have very few true friends than 100's of aquaintances8)

 

[Katharine]

Hello Chilli,

I can just hear and feel your frustration :hug: and believe me, at times in my life I have been there and know all about the fear of being alone.

The thing is, that once you get over that fear and learn to be alone and genuinely don't need to be with anyone, you will then find that you bump into someone totally unexpected and wonderful.

What I find very clear from your post is a huge lack of self esteem and confidence in yourself as that wonderful human being that you are. You have a disease - fine - but you ARE NOT a disease. You are a person who is well worth knowing in your own right!

After my divorce (which came about in part due to similar problems to yours), I found myself alone for the first time in thirteen years. My children were only with me half the week. At times, I thought I would climb the walls, and I did my fair share of hysterical tears at times.

The first thing I did was to be sure I actually left my house. I knew I had to, had to force myself. At that time I was still working and it saved me, at least 5 days a week. The weekends were ****. I got myself a dog, and, as I had no garden, that meant walks around the village (I live in a very remote area) three or four times a day. I was no longer the anonymous divorcee that lived in that rented house. I was the lady with the nice dog. My dog was also great for hugging and crying into. He never got upset. He never shouted at me and he remained totally faithfull!

A friend of mine dared me to put my profile up on an internet site for meeting people. I thought she was off her head but a few months later, I thought, what the ****!

Meeting people through the internet is just as dangerous as bumping into them in the local pub. On my profile, I just put down friendship and didn't supply a photo as I only wanted long distance contact and people to chat to at the weekend. I "met" several people with whom I had good laughs. I found that chatting with people on msn was so much easier than feeling shy in real life and that it was amazingly easy to read between the lines and truly know people.

There are loads of people that I never kept in touch with, we maybe chatted once, quite happily, and never did again. I met a few people in person, had a drink, or a nice meal and then went our separate ways.

One day, I "met" someone from Brussels (which is 2 hours away from me), we talked and talked and then realised that we talked for hours. Then he wanted to meet me. I didn't. He lived too far away and I (by this time) loved being alone with my dog and my kids. He insisted. I eventually gave in. And he upped sticks and came to live with me 6 months later. Last October (not even 2 years later) we got married. I had said I would never marry again. I had decided that I never ever wanted 2nd best. I was worth more. And I was truly happy alone. But, as they say "never say never".

Haha - now you know more about my life than many do, I have rambled. I think I manily want to say that whatever happens, you need to be happy. This situation is not making you happy. You are worth more, so so much more and there are people out there who are willing to take everything that you are on board. Your illness shouldn't even come into it.

Just for info. I wasn't diagnosed when we met. My hubby new nothing about lupus. He was never afraid. Has adapted to everything and just goes with the flow.

Now, if you can follow that ramble it confirms that you are a truly intelligent worthwhile person :rotfl:

hugs,
Katharine

 

[Katharine]

P.S.

In my ramble, I kind of "ignored" your other issues such as agoraphobia. I simply gave you my experience as my take on it. It seems that you are well followed up by your counseller and are working really well on that

All I wanted to get across is that you are worth far more than you seem to think!!! I wasn't making light of your problems.

Katharine

 

[Sage Hen]

Chili,

It seems to me that you are still newly diagnosed. You are still adjusting to having a disease..if so. You sound depressed, to me also. Mood swings could be related to all three..disease, depression, and feeling as though your friends, and boyfriend are not there for you emotionally..or physically.

A loyal dog as Katherine suggested could be comforting to you. I agree, with the advice your counselor is giving you, about making no major decisions now.

Maybe, getting your mind off of feeling so bad, would be of some help..to you?
Listen to some beautiful music, or read an uplifting book..Do some special things for yourself..Maybe, a med adjustment would be helpful to you also?

I do hope that you feel better very soon.

Love,
Sandy