Freak of nature

[sarahroly]

Having a bit of a down day.

Feel like a freak of nature !! Just seems to be one illness after another. At least with others, they get over their coughs or colds or other ailments . It just feels like a never ending story or a continuous battle. I'm just so pissed off with being unwell (even though I may look fine!!!) I feel like poo. I don't want to continually moan to people but they just really don't get it! WE LOOK NORMAL BUT FEEL LIIKE SHIT.

If only more people were aware of Lupus and how it affects the body.

Sorry all, needed a moan and recovering pneumonia.

Hugs to all xx

[Purpletop]

I know what you mean, the days of waking up in the morning without checking whether your in pain, or can breathe ok, or that you're not dizzy or just simply jump out of bed and rush to work grabbing a Costa cappuccino and a pastry on your way in are a fond memory. Healthy people don't understand because it isn't easy to. I find it difficult to see what the fuss is all about in the days I feel ok, though the lovely lupus reminds me soon enough. I know it is frustrating when those around you don't get how I'll you are - I don't mind generally, only when I'm expected to be at get-togethers and can't, or expected to chat hours on the phone while I can barely breathe, or I have to cancel yet another appointment because I'm too dizzy to get out of the house - and I am being seen as unreliable rather than ill.

Having said that, it is also the case that when I get all these things on top of another I don't really want to socialise, or explain to others what hurts and what the doctor said, etc, etc. at that point, however I look to the outside world becomes irrelevant, I just focus on getting better, which creates a distance from everyone but hey, we all do what we can to survive.

[sarahroly in reply to Purpletop]

I don't tend to socialise any more. I used to love to party, but to be honest with you, now, it all seems like too much hard work. After about an hour or so , I've had enough!

Hugs xx

[Jonathansgirlfriend]

I agree with you 100%. When you look fine, it is difficult for people to believe you are actually sick, so you don't want to complain. Meanwhile, the person next to you with the sniffles gets all the sympathy. My friends get annoyed when I have to cancel plans because I woke up in pain or am just plain exhausted...so I don't make plans with friends anymore. My social life is practically non-existent.

[sarahroly in reply to Jonathansgirlfriend]

Hiya,

Yep agree, too tired but "hey, she looks fine, seems like a hypercondriact"

No , its not that, it's just I have lupus!!!!

I used to be a real party person but now, I don't really ever want to mix xx

Have a cuddle on me xxx

[roobarb]

Don't be sorry for moaning, sarahroly. I always think you've got to get it off your chest (no pun intended with your pneumonia!) otherwise it will just eat you up inside. Stress is sooo bad for lupus, & I think we are more sensitive to it anyway because of our illness. So like purpletop says, do what you need to in order to survive & have a good moan on here to people who understand & will support you through the bad times.

Take care & big, gentle hugs. X

[sarahroly in reply to roobarb]

Thanks roobarb,

My life seems to be one big stress!!!

Hugs back xx

[Adamine]

Exactly how I feel.... You look so... OK But everyday is a struggle.

I've had no voice, bugs, infections, colds one after the other and could tell I was sinking fast - so I actually went to the Doctor this week and said I needed Steroids and GOT THEM!!!

I was amazed!!!! Just crossing everything hoping there will be some improvement even if just slight...

X

[sarahroly in reply to Adamine]

Hi Adamine,

Did u tell the doctor u needed steroids or did they tell u?

Reason I ask is that , I'm not on them yet but feel they will be beneficial to me. I really don't want to go on them but if it will help my illness, I will gladly take them xx

[artemis5]

Eh, don't worry about moaning. Talking to most people about SLE is like explaining migraine to someone who never has headaches... The question is why do you want to explain things to them? If you are unable to perform some tasks because you are feeling unwell then there is no need to explain yourself (or "make excuses" as others like to call it). You have a right to take time off, to make time for yourself, to rest and recover in your own pace and you definitely don't need other permission to look after yourself first! If it comes to explaining how you feel to your close friends and family, well, most of them will never understand so just ask them to listen to what you have to say and accept it (even if they don't fully get it).

[sarahroly in reply to artemis5]

Hiya artemis5

The problem is, the way people look at you, like, here we go, don't tell me, she's not well again!!

I get so peeved with it, I feel like saying, ok, you live a day with SLE and see how u feel or what u have to say xx

[Adamine]

Hi,

Yes - I asked for them!!! - I had no problem. I gave good clear logical reasoning. I've been like this befores feeling so ill and weak and they are the only thing that appears to change the situation (was last on them in June) - he understood and gave me a course. Can't wait for them to work.

I decided last month that I have to take some control over how my body is treated, I have to live with this, not them.

[tiernan]

I totally agree, its hard for people to understand unless they've been threw it that includes doctors! Unlucky for me its on my face so I don't look fine and been on Steroids for over 10years and they have effected my bones and all, so constantly run down, feels good to talk to people that you can relate to x