[nettyunicorn]

Hi all sorry bout this but need a bit if a whinge,

i am so fed up with feeling so terrible all the time. I know there are people much worse off than me and i should be greatful that at the moment it seems that all my nasty symptoms are not life threatening or at least not immenently so, but why is it that we are expected to live half lives struggling to work etc and wondering if we will be able to get out of bed in the morning. i'm feeling down and exhausted after a particularly bad migraine attact with vomiting etc. and await appointments for renal unit and a scan on gall bladder. Have waited another year to see rhuemy(appointment oct) and i know he wont take me seriously once again. he gives me a few steroid jabs for pain that work for a few weeks and sends me away for another year!
Is there nothing i can do?
Sometimes i feel like curling up in a ball, if that were possible(ouch!) and sleeping for years and years! but life has to move on and my children need me!
Work is getting harder as legs swell so much now i come home in agony i just wanna cry. they are even still swollen when i wake! The meds they give me dont seem to do anything so what is the piont of taking them! They make me feel sick etc!
Sorry poor me! feeling sorry for myself and buck up!!!!!! I know i should but cant seem to right now!
I need a big hug and someone to understand what i'm feeling and i know many of you have and still are in my position! sorry to be such a downer!!!!

Netty:sad:

Take care all and i'm sending my hugs to you all!!!!!!xxxxxxxx

 

[Marshmellow]

dear Netty
don't aplogise for being down, it gets to us all and we have every right to a therapuetic moan

sending you lots of hugs :hugbetter::hugbetter::hugbetter:

and hope you feel better soon

love Rachel

 

[helloos]

Hi Netty.


Here's the hug you need....

But I am wondering what medicines are you on? Can you bring someone with you to this appointment in October that can help point these things out to the rhemo?

No one should be left in pain or unhelped. Maybe making a list of your questions and bringing someone to help speak with the doctor might help.

Who is treating you for the swelling and do they see this swelling at your appointment? If not, I was just thinking to take a picture of it so that you can show this rhemo the pics of the swelling.

I know it is frustrating and many people go many years suffering without proper treatment and help. It is just not right ! So you have to keep fighting for yourself and when you need a push to fight for yourself and not to give up, come on here and someone will help you.

We have all felt this way - hopeless- but you have to hang on and continue on with your search for help and answers. If this doctor cannot help you, then say just that. If you can't help me, can you please send me to someone who can because I cannot live like this....... I had to say this sentence and it got their attention.

I hope that you feel better and know that we do understand and that no, you are not alone. Hope you feel better.

 

[lazylegs]

Hi Netty,

Sorry to hear you are having such a bad time. Hugs, hugs, hugs to you sweetie.

Once a year appointments is crazy. The doctor should be checking you more frequently than that. Once you have this appointment you should request to see a different doctor.

When you see the doctor let him know how bad you are struggling. Tell him you would like to discuss other treatment options. You might even want to ask for some leave time from work. Request a pain management appointment. Try whatever it takes to let him know you can not continue on in such misery.

Take care,
Lazylegs

 

[raspberry]

Fed up being sick and useless

Hi Netty

I know just how you are feeling. I was feeling very similar about a month ago, my meds weren't working, I was tired all the time, felt totally useless and worthless and fed up with life. I even thought God hated me! It does get better, but you just have to listen to your body.

If it is telling you to rest then you must as much as possible. Can you not elevate your legs when you go to bed, a couple of pillows under the mattress is better than in the bed, more comfortable. the ideal thing is to have you ankles just higher than the heart when you go to bed. make sure if you wear socks that they are not close fitting round your ankles. I found that make the swelling much worse. Someone else was talking about a very good migraine med that was very good, imgram I think it was. I too know about how debilitating headaches can be, mine has lasted for about 3 months now,
Go to your Gp and insist on seeing another rheumy, you have the right to a second opinion, or ask to be referred to a pain clinic, you also have that right, they can help with pain. Can you get someone to go with you for your appointment? I always take my hubby, he gives me the confidence to speak up and also backs me up, as I also had a rheumy who said i was too fat and lazy and that is why I was feeling so ill! Write a list down of all you are feeling, in a bullet form, so that you can be concise and precise in what you want to explain to him. Sending you lots of hugs and love, I really do understand, but believe me the dark sad days DO go away and get fewer and the good days get more and more.

Lots of love Rosie