[Marshmellow]

Gosh I’m not really sure how to say this without sounding ungrateful but I need to get it off my chest and maybe someone will understand where I’m coming from.......
I’ve only been formally dx for a month and feel like I have been hit by a ton of bricks as I can’t get my head round the fact I have this illness and the seriousness off it-I keep wanting to cry and feel abit apart from the ‘normal’ world, unable to relate to ‘normality’.
Lupus has really restricted my life and due to not being dx properly by the first consultant – (he discharged me with a helpline number as he felt everything was under control!!!! Even though I was in such pain and so fatigued I’d had to cut my hours at work significantly and move back home to my parents at 29). The disease therefore has progressed to beyond joint pain and fatigue as I tired to ignore it and continue on.
I have just been put on CellCept after a sort course of steroids as I am having liver/kidneys problems. Cellcept is making me feel sickly and headachy though it is getting easier.
Anyway my point is I have some fantastic friends but I am getting increasingly (and perhaps irrationally due to me over emotional state) irritated when certain people. I’m not the sort to easily admit I’m not coping and do tend to soldier on and put a brave face on it but recently I have not been strong enough to do that so am a bit fed up with trying to arrange to meet for a coffee or chat with certain friends who say-‘we are here for you…just let us know what we can do’ only to be told-‘can we leave it till next week I’ve not got much done in the house this week’ or ‘that’s no good for me but tell you what we’ll have a trip out when your feeling better’. I fell like screaming but I CANT COPE NOW AND NEED SOME HELP PLS JUST SPEND A BIT OF TIME WITH ME!!

Am I losing all perspective here?

Thanks
Rachel

 

[LolaLola]

Rachel, You are not losing your perspective. You are in crisis and need your friends now. You are obviously brave and like to soldier on but I think you need to tell them that you need them now. That is what friends are for.
Also is there anything we can do?
Sending Hugs,
x lola

 

[Marshmellow]

Thank you lola

it's motivated me to learn how to use the chat room as i have never done it and decided it's a great way to have support from people who 'get it'

Rachel

 

[elle-co]

I'm very much like you that I just tend to soldier on and put on a brave face. this usually ends up with everybody forgetting my problems and off loading their terrible days on me. I have lost count of the number of times i have sat listening to how awful someone's cold is, and how unlucky they are to have picked up a cough. argghhh!!!!
to be honest i have learnt in time that I have one or two close friends that will always be there for me, whenever i need them.
Tell your friends how you are feeling and give them the chance to be there for you. If not we are always here, whether you need a chat or just the chance to scream :hehe:

Elle x

 

[ALWIN]

You are not losing perspective. Unfortunately few people are really good when people are sick, and we are lucky if we have even 1 friend who is good at these times.

I have 1 particularly good friend who really does not understand, but she is always there at the end of the 'phone. We are both to caught up in our own lives to arrange much face to face stuff. I thank goodness for her, and anybody else that is unfortunate enough to get me on the 'phone droning on for hours about trivia ... because I am trying to distract myself from feeling miserable.

I think your idea of going onto the chat room is a really good idea. I have always found people kind, interested and tactful.

Good luck.

 

[nicky00]

Having a chronic illness takes some adjustment, physically and emotionally.



Coming to terms with the fact that your life is no longer as in your control as it was before and what you took for granted , you can now observe only in other peoples behaviour in how they natrually dont have to think the way you do,is far more than a sobering thought.
It is life changing.

Im not going to bang on about all the miserable stuff to do with lupus that others do not experence. The page is not big enough.

Its a difficult one for me to answer re the asking for help as Im not good at it either.
It would be nice if they 'showed' you how much they care but I suppose if they dont know then, they dont know how to help.
You could always say something but pick your moment. Sometimes we just want somebody to aknowlege what we have said and nothing much more.

For me I think everything re my perspective with ' normals' just shifted.
It took me a long time before and during diagnosis to get my head around how ' everybody else has shifted into something different', lack of understanding, how alienated I felt from the rest of everything really.

I know the weight of feeling ill and how it takes over the body and soul in ways others cant relate to makes me feel Im not coping.

Who would cope given the same circumstances. For me it seems that despite knowing Im ill, im still expecting things to work for me, how i think they could or should be.
They dont.

The only thing that makes me feel I can cope is if I getting support medcially, the medications are working on so me level I can cope with and that Im constantly trying to find out more to improve my lot.

I have a freind with a chronic disease and she dosnt totally get it...figure that one out. The thing \I think that separates us is the awful feeling like Im bordering on flu etc etc.

Do you know what tickled me this xmas is how most of my family and friends came down with something flu ( ish). I observed:wink2: how they coped, how their mood shifted,how everything took them a huge effort, how they felt like the 'holidays' were being wasted as they had to spend time waiting to feel better.

Of course I very carefully referenced it to lupus without making a huge thing of it.
With my friends I would say something just like ' yes I know' yes, yes I know' and keep nodding my head in agreement.
Then I would slip in a symptom they had not mentioned or forgot to and then would agree with more yes 'es and ummm ah huh....s.

I would say yes just like lupus and go leave them to think...go to the toilet .

You might have to wait till your friends are illl to make your point finally.

I doubt it tho.


It all just takes time Rachel if you ask me...

There are very few people who actually understand what you are talking about. if they even try to then you are lucky. If they dont understand but put their efforts where there mouths are then you are most fortunate.

Good medication can make life more managable, then the whole world changes.

Nicky

 

[Katharine]

Hi Rachel,

I don't think you are either unreasonable or ungrateful though, most unfortunately, life has taught me you might be being "unrealistic". Now, I don't mean that in any mean way whatsoever.

For many things in life, not just illness, true friends, those that want to be around when you're not OK, are very few and far between.

Events early on in life taught me not to count on my so called "friends".

Lupus was the same really. A lot of people only want to know you if you make them feel good! Basically, if you say "I'm fine" with a big happy-smiley face they think you're pretty cool but if you don't then they suddenly lose interest.

I had enormous problems with work colleagues and "friends"...in French there are two words "les copains" (those you go out for a drink and a laugh with) and "les amis" (friends). I had (and still have) a lot of copains but I know that they are not the ones I count on and I must admit that I would no longer put myself out of the way for them either (one does learn).

I am also lucky to have some very good friends and they are often the most surprising people. One couple springs to mind. They are people that I hardly knew, people I used to know from another life (when I taught their daughter to ride and helped her school her horse) but they have had an implicit understanding of me being ill from the word go. I would arrive at their house (often filled with serious party goers) and they would immediately say "you look tired" - now this is not on a bad day, they just noticed where other people would be asking you to look atfer their kids as you had "nothing better to do". They would then manoeuvre me to a nice big armchair, sit me down, go and get me a drink and come and come and talk to me, without anyone noticing I was getting "preferential treatment". They could see when I was in pain and couldn't stand. And it was oh so refreshing not to have to explain (or worse make excuses). On one instance they had made a lovely sauce that one dipped bread in...when they asked if I had tried it, I very quietly said that I didn't eat bread (without going into it causing heartburn etc etc.). Two seconds later, the lady arrived with a bowl of cut and peeled carrotts which I could dip in the sauce - No fuss, just pure kindness and consideration.

Long story that doesn't tell you much but I have to say that when I was diagnosed I did kind of go into a pretty isolated shell. Thankfully that wasn't hard for me as I used to be very used to living/working alone and I am also very lucky to have a very good "friend" by my side in the shape of my husband.

I still see my "copains" from time to time but, to be honest, I'm not really bothered if I do or not. It can be hard letting go sometimes but, after a while, I just couldn't waste the energy on being who they wanted me to be. Now, either you take me as I am, or you don't.

Now when I say this, I'm not saying you have to let friends go, I'm just saying that what you're experiencing is sadly very normal. Those friends that are there will become very precious, the others less so.

crikey, I must be tired, hope you could follow half of that,
huge hugs to you from a cyber "amie" :hug:

Katharine

 

[LolaLola]

Dear Rachel, I don't get into the Chatroom very often because I generally use a laptop with very high security settings. I do sometimes get in from my elderly Desktop. Hope to catch you there sometime. Whenever I have been in Chat I have found the people there lovely, very lively minded and positive.
If ever you want to PM me for a moan I am here.
I am probably very fortunate in that one of my best friends in the non lupus world is deaf but otherwise healthy and my other best friend is blind. The three of us get on well. Having different diasabilities means that we all respect each other, there is no rivalry over symptoms, no trying to out do each other. I am very lucky. I haven't known these people all my life, Wendy I met about 9 years ago, Mel only a couple of years. I introduced them to each other and it is great. All our Husbands get on too. I help them out on the Computer, they help me out by cooking better than me, giving me massages etc. I have become style advisor to Mel, if she wants something like a coat from e bay, she tells me what she wants and I look up possibles and describe them to her.

I am very lucky. When I was first really ill it was hard. When you are still coming to terms with your limitations yourself and wondering how to explain to people, it seems like getting people to understand is doomed.
What you say about flu over Christmas, my Husband has recently had some serious knee problems and he openly admits he didn't know what pain was like before. Also he had to use a crutch for a while and hated it. It is fair to say most people can't put up with a lot if they are usually fit.

I wish there was something I could say to help you. You are not coping badly, we all get bad spells, sometimes I feel physically sick thinking of things I used to do that I will never do again. The other day my Husband took hold of my hand, and I screamed- it really hurt but imagine how bad he felt. He was only being affectionate. You have lost a lot at the moment, you may get some of it back with medication, but you do need acknowlegment of your losses.
There is no other way of putting this , illness sucks!
x Lola

 

[lin]

Aw bless Rach, sorry o cant write loads right now as i feel crap too, but just wanted to give you a ((((((((HUG))))) and say it does get better, and worse and better, think we all get up and down, and as fr the DX yes it takes some sinking in hun.

thinking of you and wishing you much better days ahead
your frined Lin xxxxxxxxxxxxxx
pm anytime hun xxxxxxxxxxxxxxx:kiss::grouphug2:

 

[Rose Maclean]

Friends

Hi Rachel,

I am sorry your are battling. people don't understand this disease at all. I can't tell you how many times I have been asked if I have tried Aloe Vera! What i have learned through this disease is that I have 2 friends and one of them is my husband. the rest are well meaning acquaintances (spelling?). We have a saying here in South Africa. A friend in need is a pain in the ***. I think that a lot of people would like to offer help, but would rather you didn't take them up on it. Sad indictment of our society hey?

Take care and always remember that this forum is here fr this purpose amongst others.

Hugs, Rose

 

[Hatty]

Hi Rachel

It's so horrible to go through this, and I really empathize with the feeling of isolation, that everyone around you has no understanding of the difficulty it costs you just to smile sometimes. What I would say is that you do need to be honest with the people you really feel you can trust, your really closest friends. I had a long discussion with my best friend and she said she just couldn't tell when I was feeling bad (and my husband has said the same), that I needed an LED screen on my forehead, otherwise he just didn't know. You know 'Lot of pain, needs to sit down' or 'Ok but rather anxious and breathless' or 'Very much in need of gentle cuddle!'. Friends just don't get it unless you understand. It is better to be honest and say 'I'm really struggling today, is there any way you could come round, it would be so cheering to see you' - it is great to feel needed by someone you really care for, especially if all you need to do is go and have a cup of tea and a giggle with them. Which is often all it takes to get perspective on the world and not be swamped by pain.

I think sometimes it's important to give your friends a chance, to be honest with them, to allow them to support you by showing them how. I'm still not great at talking about how I feel to friends, but I'm getting there (I've had 20 years practice and at 31 I should have made SOME progress!)

I do wish that more people knew about lupus though! Grr!

Hugs and understanding of how you feel,

x Hatty

 

[Marshmellow]

Thank You All So Much

I Don't Feel So Alone In My Lupus World Now!!
Love Rachel

 

[Fairy]

Hey there,
I'd say I've got two or three friends I can talk to about illness stuff (I generally choose not to, but that's just me). The rest, I stick to 'safe' topics of conversation, not because they don't care, but because I know they find it awkward - they genuinely don't know what to say.

I'd like to think that before I got sick that my friends would feel comfortable talking to me about stuff that was troubling them - but if I'm honest, maybe I would've been one of the people changing the subject too. I don't know. Having to deal with this has certainly made me more patient and understanding of other people, even when they're obviously 'dying' cos they've got a cold. I'm just trying to say, that maybe you shouldn't be hard on them? Possibly? Or maybe I'm just a bit too soft? Hmmm. Either way - talking to people in the chat room, or maybe one or two friends you can ring when you need to (if not meet face to face) sounds like a good plan. Keep the rest for talking about films etc - everyone needs a light topic of conversation sometimes anyway.

Also, hang in there with the cellcept - I had to stop taking it cos of bone marrow issues, but while I was on it, it was ace (once the stomach issues settled).

Take care
:hehe:

 

[onetay]

Hi Rachel,
It is ok we have all been were you are, and it does get better. Remember this is only advise so take it as you will.

The brave face has to go, you are dx with a disease that is understandablly upsetting you as it did all of us. Take a day to think about what you think you can and can't do right now and convey them to your friends and family. It is ok to say you are too tired to go for coffee for visit on the phone at the moment. It is also ok to say you need to rest as that is very important to listen to your body and what it is telling you. You sound so much like me with the brave face. I did it for my parents and children so they would not worry about me. I have learned over the years that all that has a price and one I am unwilling to pay any more. I don't mean to sounds so negitive only supportive.

We are here if you need us. I have lost a lot of friends because of the lupus but my true friends and family are still by my side and will stay there no matter what comes with this disease. It is possible that your brave face has convienced them that you are ok and can still do what you did before which we all know is not the case. I wish you the best with your struggle to find inner peace and except what is a hard thing to handle in any case. I would hope that you would talk with your doctor about a form of anti-depressants that might help you get past the blues and see more clearly to a brighter future.

 

[Monica3]

Dear Rachel,

I'm not sure I can add more to the great comments others have offered up. You are still coping with receiving this diagnosis and I'm sure your friends are also trying to figure out how this will affect your friendship also. If your friends all know each other, would it be possible to send out an e-mail to them as a group, something along the lines of, "Hoping to get out for some coffee and chat today, who can meet me?" or even stronger, like, "I really need to get out today and enjoy some good company, anyone up for a break?"

I have not tried the chat room yet, but I hear it is full of nice folks. It might be a good idea when you can't get out yourself or it's late (if it runs at night).

Also, have you tried a local Lupus support group? If you have them at all, they might only be monthly, but you might meet new friends or find it particularly helpful when you are flaring or need a lift.

It does take time to take in the diagnosis and the potential impact on your life. Give yourself time. Give your friends time, but after a bit, you might find that your friends change...that's only natural. And don't beat yourself up for it. Live and learn...
Monica

 

[Douglas]

Howdy Rachel,
When one is sick a lot friends behave one way. When one is Dx'd they behave another.
Suffice it to say, Lupus changes everything, even friends.
You are definitely not alone!
All the very best.
Douglas+