[Hatty]

Hello
May I have a little moan? Just finding it hard to be positive, as everything is hurting so much and I'm just dragging myself around after the children (on holiday so 24/7 of a 3 and 4 year old) trying not to weep. Just saw new doc who was nice basically 'I'm very lucky' and 'lupus can be so much worse'. Well yes. It could be so much worse. My kidneys are indeed doing fine, and so many of you have a much worse time. But that doesn't make me feel better. It could also be much better, in fact like all my lovely friends with whom I go to playground with our children, and who have to push mine on the swing because I can't. And who can let their children sit on their laps without wincing, and get to them in time when they fall off because their legs work properly!
SOmetimes it's just hard to be stoic and positive and yes ho ho I do have a stick and a hat and funny shoes and it's called lupus blah blah yes I look fine.. well, you know. Inside I'm scared: I'm so much worse than I was 6 months ago and it's getting me down. And I don't feel very lucky right now!

Sorry about that. But utterly lovely husband, friends, children, don't really need this from me as they are being so sweet and supportive. I just don't want to be fragile and passive, I want to be getting on with it!

Thank you for listening, I feel better already!

xHatty

 

[Katharine]

(((((((((((hugs hatty)))))))))))))

It really doesn't sound like you're either lucky or fine at all

Comparing our suffering to that of others only works up to a point and to be honest I think it works when you know your suffering will end. That's not something you're so sure of right now :hug:

Have you said to your docs that things are worse now than they were six months ago? Have you truly "explained and complained"?

I'm just wondering if maybe you are not putting up with too much because you feel that you are not that "important" and that you are not "as ill as others". Sometimes we do that and end up suffering unnecessarily when something can be done. It is not only being alive and "not in danger" that is important but also QUALITY of life.

Please remember that you are important and you have a right to complain. It's your doc's job to listen and do his/her best to help - you are the customer and the customer is king (well, you get the drift :lol.

Katharine

 

[x_claire_x]

Hi Hatty, your post touched a nerve, Katharine is so right, you need to let somebody know it isn't quite as good as you are trying to will it to be... I understand that there is much that is positive in your life, but that doesn't mean that there is much that is positive in your body at the moment.. please go and talk to your rheumy to let them know how you are feeling, even if you worry that you are not 'appreciating' the mild thing... it is so easy for people to say things like that when they are not living in your skin... be honest and let the medics know if you are struggling, you never know they may be able to help...but honesty has to be your policy.. and take care of yourself, put yourself first for a minute and I send you lots of hugs whilst you do XXXX
Claire

 

[Douglas]

Howdy Hatty,
I too had a doctor tell me "You are very lucky." And it was the same doctor who also said at a later appointment, "It [Lupus] is a horrible disease." Both correct.
Douglas+

 

[keebler]

(((Hatty)))

I don't like that word "lucky" and "mild" is another word that I dont like.

There is no way that we are lucky to have lupus.hno:
Mild have them walk in our shoes and call it mild.
We can look around and find people who have it worse than we have. That is a given in any walk of life, with anything.

Lupus takes more than it gives and I am like anyone else that longs for the days that I could do anything I wanted. To be able to go outside and not fear the fact if we get to much sun, we will feel awful.

Hatty this is the place that we can come and vent and we know people will understand where we are coming from.:hug:

Love,
Lyn

 

[KarolH]

Have to just Love what Keebler said...........could not have said it better myself.

I love to take my shoes off my feet, place them in front of some unsuspecting individual who tells me how wonderful I look and ask them to walk one mile in them for me.:lol::lol::lol:

Oh boy, great life if ya don't weaken huh!!!:wink2:

Keep your chin up...............as best you can anyway.

 

[Hatty]

Thank you all so much for making me smile, and for all your UNDERSTANDING support! I do indeed suffer from feeling guilty all the time that I'm just making a fuss and so many people are worse off. I had a physio at 11 (when they thought I had juvenile arthritis) who said that basically she saw lots of children who were much worse off and I shouldn't be making a fuss. Even though I couldn't really walk at the time, and had half days at school because I was so tired. I think this has kind of hard wired my head to believe it's terribly self indulgent.
Thank god for you guys, that you do understand what I mean. I feel very lonely sometimes, that I (esp at present) have a good quarter of my brain dedicated to just dealing with the pain - I have to work so much harder to keep up normal (high!) levels of sociability, of brain for my freelance work, of patience with my children. I am someone who communicates what I feel, and yet I can't do that because going 'I hurt ow I hurt ow' is intensely boring for everyone!

Hey ho. Every day at a time. I just saw my rheumy, indeed a new one who is nicer than my previous, and he was nice but can't really offer me any help/change/support with the fact that I'm just much worse since I became photosensitive. Just that it's a horrible disease but I'm lucky (the same conundrum as you, Douglas! Maybe they learn it at medical school

Anyway, thank you again for being lovely. I'm glad I'm not alone in this strange balance between dealing with pain and feeling guilty for admitting it.

xHatty

 

[debatat]

(((((( Hatty )))))) I so understand how you feel. I would also so like to speak to that physio, what a terrible thing to say to a child!!!!!!! I also don't feel lucky and am not a big fan of 'mild' lupus. In my experience there is nothing 'mild' about it. It must be especially hard for you with younger children. I struggle and mine are 16 and 11. You sound as though you are really struggling with pain, are you sure that you are on adequate meds? Does your consultant really understand how it is affecting you daily, with your children etc? I am glad you have posted on here, it does help, I know what you mean about not complaining about pain all the time!! It helps to talk to others who understand. I think the ups and downs of life with lupus get to us at times. The sheer unpredictability and limiting nature of the illness are hard to endure. I am the only one out of a large group of friends who has a chronic illness and whilst I wouldn't wish this on anyone else I do think its unfair. Without the support from this site I wouldn't cope as well as I do. It is so great to be able to say how we really are to people who understand exactly what it is like. I hope you have a painfree weekend.

Take care

Deb x

 

[lin]

Hatty im another one who hates the word MILD grrrrrrrrrrrr!! whats mild about any of this, as everyday is so different for all of us,

sending you ((((((((((((((((((Hugs))))))))))))))))))))) Lin xxxxxx

 

[JacquiC]

Hi Hatty, I totally understand where you are coming from. I have a beautiful 4 year old daughter who is my life together with my husband, however I am finding the summer holidays extremely long and tiring. There seems to be no end to the pain and tiredness at the moment. I am waiting on a referral to an new Connective Tissue Disease specialist as I am hoping they may provide more insite into my illness and the fact that I have gone downhill so much in the last year. (Haven't been able to return to work since May last year.) I know that I am no way near as bad as other people however that doesn't help me on a day to day basis when I try to look after and keep up with my daughter who is so full of energy and life. Oh, for even just 1 day with her feeling like my old self again!

Take care of yourself as best you can.

Hugs

Jacqui