The poor people who suffer from this dredfull illness

[Sussex12]

Hello my name is Beverley and I have suffered with lupus for a long time when people look at you they think there is nothing wrong with them on the outside people can't see or feel the pain your in they seem to think your well but every day people struggle with this dreadful illness me and loads of other people should not have to suffer like this its do unfair as family around you watch you get worse and there is nothing they can do to help but I do find on being positive really help but for the last few months I really have suffered bad thank you to anyone who reads this meny thanks

[Chanpreet_Walia LUPUS UK]

Hi Beverley,

Welcome to the LUPUS UK HealthUnlocked forum. We have a really lovely and supportive community who are always willing to help!

We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK Contacts who you can chat with over the telephone. To download or request the pack, please click here lupusuk.org.uk/request-info...

[Melba1]

Hello Beverley, so sorry you’re suffering badly at the moment 🙁. Hopefully a better phase is just around the corner. Are you well enough to see friends, do a bit of gentle exercise? I sometimes find that helps when the disease gets too overwhelming but also obviously sometimes we can’t do anything until the worst passes.

Lots of love to you

X

[kayraw]

Isn't it hard when an illness and pain don't actually show, we try to hide it don't we as well, I am ok when I am work, its only when I leave I feel so bad, walking back to my car after having sat for 6 hours is so painful, I've been given a parking space a little nearer work but its still a long way when each step hurts. I know my colleagues don't see my pain and must find it hard to understand, when I'm sat in the chair I am really ok, but I used to walk my dogs when I got in from work and can no longer do that; all I do is sit down again to get some relief, I have a bulging disc by the way and I think something else as yet undiagnosed that causes pain in all my muscles and in my soft tissue. If we had a stick people would know something was wrong but because there is no clue to how we feel inside it is very difficult. Keep on being positive, I generally find that if I am distracted the pain feels less, its always worse when you're on your own. I have started listening to meditation etc at night on my tablet and this has definitely been helping me sleep, I haven't tried it during the day but people who do say it seems to help. Good luck on your journey and I do hope you get some relief sometimes from your illness x

[Lisalou19]

I seem to be on a rollercoaster of symptoms at the minute. Most days I feel so rubbish, but I will put on my trainers and walk, as I’m mentally not letting this body of mine give up on me!!!!!!

Walking is also good to process your thoughts and let out emotions that are not easily let out. I often shed tears thinking why can’t I just be healthy , but I empower myself by pushing forward with a strong mind. X