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Life With Lupus

Hello all


#1

Hey all.

I’m pretty new to this so please bear with me while I collect my thoughts.

I’ve finally taken the first step to acceptance of my diagnosis. It’s taken nearly a year, a lot of tears, pain and my first horrendous flare up to get me there. However I think this is the start of me taking back control. I’m sure a lot of you will understand what I mean when I say that. So here’s a little about me and my struggle…

They finally figured out what was going on in May 2016. After many visits to the doctors for one thing or another and however many antibiotics and painkillers and NSAID (to which I am actually allergic - yes that was a fun day!!!) I now have a face to fight.

I found the most trying time was prior to my rheumatology appointment. Going to and fro from the doctors and trying things that did not work to trying to struggle on my own because I got sick of people telling me it was in my head and that maybe I wasn’t feeling how I said I was feeling.

I’ve always been such and active person and enjoyed going to the gym and doing several exercise classes including pole fitness. I used to exercise at least 5/6 times a week and was so full of life! I now find It a struggle to do a 20 minute yoga flow and dare not even think about any weight bearing activity. The amount I used to do vs what I can manage now (only a year down the line) terrifies me! I’m hoping when I get this thing under controll and get my meds sorted I will be able to pick up doing a little bit more, however it makes me sad to know I am no longer the person I was and will probably never find that part of myself again.

I’m currently trying to make some positive changes in my life. I’ve just cut out caffeine to see if that helps with the headaches. I love food and healthy eating so I seem to be doing okay on that front however my sleeping pattern is terrible. If anybody has any advice on that front I’m all open to suggestions. I find fatigue is one of the most debilitating and infuriating parts of this condition.

I’m lucky enough to have a wonderful, supporting family and partner. He helps me more than he’ll ever realise simply by accepting this condition and the changes it has made to me and our relationship. When he says we’ll get through this I know I’m not on my own. I know it’s hard for them to see me in pain and sick and not be able to do anything about it and for that I feel incredibly guilty.

Anyways, I think I’ve rambled on for long enough. Hopefully I’ll get to share anything I find helpful along the way and add support to this network of people.

We can get through this together :slight_smile:

Thank you for taking the time to read my story!
Xxx


#2

I totally understand where you are coming from in so many ways. I was recently diagnosed and it made so many things make sense. I too have a wonderful partner who is so very supportive and can’t seem to sleep more than a couple hours at a time. I’m currently trying yoga and meditation to try to relax with minimal improvement but it is improvement so I’ll let you know how that works out. I was using Advil for inflammation but was told I can’t anymore as it’s damaging my stomach so I’m trying to deal the aches in my joints and headaches without taking the harsh stuff. I will share anything I find helpful along the way As you said we can all get through this together. If you ever need to chat I always have my phone. Best wishes


#3

Thank you for replying to my post.

Likewise, if you need a chat or just a rant. Feel free. I’m happy to listen and help if I can. Unfortunately, I’m still experiencing new symptoms (mind I suppose everybody is as this thing has no set path) and I have a million questions that I hope to get answered.
One thing I do find useful is to carry a notebook around with me. I make a note of my symptoms and what I’ve done that day if I feel unwell. I’m trying to figure out what my triggers are and I’m hoping this might help. I’m also keeping a food diary to see if anything in my diet might not be helping me.

I do yoga but have not tried meditation yet. My rheumatology nurse suggested anything to do with ‘mindfulness’ in terms of trying to help me sleep - I’ll let you know if I find anything useful


#4

Welcome to the group


#5

Well I was recently diagnosed as well. I, too, am allergic to NSAIDS but I am able to tolerate Meloxicam. I take it everyday and it usually keeps the pain at bay ( until the flare up shows up.) I truly wish you all the best. :pray: