Fed up

[LouLamb]

Fed up with everything. I literally can not cope with all this anyone . It's really getting me down . Not gonna bother with medication anyone . I really couldn't care less.

[Paul_Howard Partner LUPUS UK]

Hi LouLamb,

You had an appointment with your consultant today, is that correct? How did it go?

I would really try to encourage you not to stop taking your medication. I'm aware that it can have nasty side-effects but it is being prescribed to you for a very important reason. If lupus is not well-controlled with treatment then it can have very damaging effects on your health, the risks of this are unfortunately even higher in young people like yourself. Lupus can affect organs such as your kidneys, potentially with no obvious symptoms until the later stages of damage. Therefore treatment and regular monitoring are essential.

Have you discussed your low mood with any of your doctors or with your family? I would encourage you to do this because they can then look at what other support might be available for you. If you'd rather speak to somebody else, you can call our office from 9-5 mon-fri on 01708 731251 or I can provide you with a telephone number for one of our volunteer contacts who have lupus themselves? You can also chat to Samaritans about anything at any time on 116 123.

[LouLamb in reply to Paul_Howard]

I don't care anymore that's how I feel at moment

[Paul_Howard Partner LUPUS UK in reply to LouLamb]

Have you spoken with your parents about how you feel?

[LouLamb in reply to Paul_Howard]

She told me to just get on with it and take my tablets

[Paul_Howard Partner LUPUS UK in reply to LouLamb]

If you are unhappy with the care that you are receiving from your consultant, you are entitled to a second opinion on the NHS. You could ask your GP to refer to a different consultant?

If you feel that your current consultant isn't doing what they should be, you could also lodge a complaint with the departments PALs team.

[Hidden]

I can relate to how you feel. I attend group counseling and individual counseling in the hopes that I will feel better in the future and be doing something productive in the meantime despite being in pain and having low energy. I have learned a lot as a result for what its worth. Sometimes you just have to wait things out and see if they improve. Medication or supplements (Sam-e) may help your mood too.

[LouLamb in reply to Hidden]

Feels like i've been waiting for ages. I think to myself has the doctor really got it right. I think is it all in my head or is it real. I just can not get over the why and how.

[Hidden in reply to LouLamb]

I have no idea Lou. Maybe people have different forms and stages so some respond well and some don't. All we can do is wait and see.

[Bacardibabe76]

Oh Loulamb

I am really sad to see you are not feeling any better.

I totally agree with Paul, you need to speak to someone and tell your Doctor.

You are so young and have such a life ahead of you, and you will bring this rotten condition under control. Please try and keep positive no matter how hard.

Please please ask your doctor for some help if you can't talk to your parents.

We are all here to support you as much as we can.

I hope you feel better soon.

Xx

[Freckle1000]

Loulamb,

Its true prednosolone has some nasty side effects, but there are a squillion different other alternative immunosuppressants out there and creative ways of taking them that can lessen the side effects. Get your Rheumatologist to work ' with you '. Negotiate. eg. - For now you could take the prednisolone with the express mutual understanding and promise that at a set time, under propper medical monitering - you will go off the stuff - no mucking about. Potentially the mind space you're in now can all become a bad memory.

You are the one that is in control of what medicines you take - that is your bargaining chip when negotiating with Doctors. Any Doctor with a conscience will negotiate with you on that basis.

Just be sure to go in there well educated about Lupus and Medications.

The last thing you want is to become sicker and have to take mind boggling doses of medicines just to remain alive.

[ell2 in reply to Freckle1000]

Hi Loulamb, I can truly sympathise with you. I used to think along the same lines and tell myself I don't really have this illness, I just need to try a bit harder - it's all a mistake. I'd then cram as much into my day as humanly possible and then be so sore and tired I couldn't move at all. It was like a cycle that went on and on until I faced facts. It's hard I know but I learned that I'm much stronger than I thought I was. The med you are on prednisolone made me depressed so perhaps that is why you are struggling just now, depression is draining and causes that feeling of hopelessness. You deserve to be given the right medication that works for you. We, on this site, are all rooting for you so go get the right meds that will improve your quality of life and make you feel less stressed and more at peace. Great big gentle hugs coming your way Loulamb, and we all want to know how you progress. Ell xxxx

[Hidden]

Hi Loulamb, please call the number Paul posted, it would be better to speak to someone when you are this low. You mentioned seeing your nurse in February, could speak to her? I know when I was first diagnosed I spoke to an occupational therapist, I just off loaded once a week, it kept me sane.x