Hi everybody, I've just stumbled upon this forum quite by accident and I'm hoping it might help me to communicate with people that understand what I going through. I was diagnosed with lupus just over two years ago and it has completely changed my life. I used to be so active and full of life and now... now I'm just the opposite. I eat well and try to exercise as best I can. Not always easy when all you want to do is curl up in a ball and sleep. I have amazing family and friends and also an amazing boyfriend who supports and loves me no matter what. I still however feel alone in my battle not to lose my mind completely; I miss the person I used to be. It's hard to explain how I feel to people who don't know and to be frank I wouldn't wish it on anybody else. I also do not want to worry those I care about every time I get a new symptom or feel pants. That might make no sense but I hope it does. I'm not very good at expressing my feelings on this subject. If anybody has any hints or tips I would be eternally grateful as I feel I have no control at the present time.
Me in a nutshell :): Hi everybody, I've just... - LUPUS UK
Me in a nutshell :)
Hi there - I’m so glad you’ve found this community.
I come here a lot although I don’t have Lupus but I have Sjögren’s with some overlap. I too find it hard to explain to others and there are no healthunlocked communities in UK for Sjögren’s so it’s quite hard to explain my symptoms - and when I do occasionally find fellow Sjögren’s sufferers theirs is very different to mine so we haven’t much in common. It’s quite isolating.
Anyway I just wanted to say hello. I hope you find lots of support here and make friends with others through this community as I have done. Twitchy😊
Thank you so much for your reply. It's amazing how one simple forum opens up a world of possibilities. I'm glad you've made friends with others on here and hopefully I will be as lucky 
I’m sure you will - it’s a really friendly and supportive forum - even for me and others with related autoimmune who have jumped on board. Lupus UK is a great charity too - well worth joining for good info. X
I hope so, I joined another one ages ago on a completely unrelated web page and it wasn't very active unfortunately. I'm glad it's helped you :). I have joined today so just waiting for my info pack to arrive x
Hello from me, too! You'll find this a friendly and supportive place. Many of us have a mixture of auto immune problems but they are often treated the same way.
I really hope, and expect, that we can help and understand x
Hello and welcome Chuckles0808,
Hope you find it useful to be here. As Twitchy and Lupiknits have said, this is a pretty active site - there's usually someone hanging out., and if you have a specific question or thought, people aren't generally shy about sharing their own ideas and experiences. Like you say, it can be very isolating when it's not immdidately obvious to the people around just how tough things can be. x
HellO Chuckles0808. It's late now but I just spotted your post and wanted to say that it's really touched me.You in a nutshell is me in a nutshell too!
I'm relatively new to this forum but was diagnosed with undifferentiated connective tissue disease...oh well...what feels like a lifetime ago (in reality, about three years). Still struggling to discover a combination of drugs that work for me (perhaps like many here). And struggle with a not so good rheumatologist and a pretty useless GP. No...to be honest...a totally useless GP.
Sometimes (most times) it's such a lonely thing, and I'm not good sharing with others because, like you, I don't want to worry folks or become a moaning mini (something I never was before but fear I could easily become now 🙄).
And yes...I sleep too. Incessantly. Under a woolly blanket with a hot water bottle too. And all those other pesky dreadful symptoms too (a war and peace sized list). And I know exactly what you mean about the lack of control. For me, one of the worst things is not being able to fix things (me) by dint of willpower. Something I hate to admit is that some days I can barely remember who I used to be (but only saying this because I suspect that might be you too).
So what I guess I'm trying to say is that you're not alone. And there are many other 'nutshells' here too.
My life is very different now but I've discovered that I am still in here (somewhere) and there is still more to value, than not (albeit in a different way).
Some of the things I do to try and cope - simple things really. Everyday I manage to find things to laugh at - always myself and sometimes other things too. I notice things I never had time to notice before (a splash of sunlight, clouds in the sky, the shape of rain 😳).
I treasure things - the fact that I can manage to walk a couple of miles (not the old 10-20 but hey, I'm still walking). I talk to everyone I meet while doing my daily mini trots (use it or lose it and perhaps they're lonely and treasure a little chat too). I re-play every conversation I have with grandsons' over and over - the chatter, laughter, their little faces. Family - I pay attention in a way I was not aware that I didn't before (too much work and too little time - none of that now).
I love reading, so lose myself in some wonderful alternative worlds whenever I can. And no matter if I fall asleep, or forget what I've read. Not much else to do and plenty of time, so I just do it all again 😆.
I refuse to beat myself with a big stick because of the things I can no longer do (work, shopping, cooking, cleaning, da de da de da - you know the list - but oh I do wish I could do cleaning - how sad is that 🙃)). One the days when I do manage to do something rather than nothing, I look on it as a treat 🤗🤗. Then flop.
Small silly things all, but they work for me (most of the time, if I make them 🙄😉😀).
But have to be honest and say it's never ever easy. And I agree with you - wouldn’t wish this on anyone.
But on the plus side, I'm still sane - just (know why you worry about that one) and I'm still able to hope that tomorrow (or the next day, next week, month) I'll suddenly realise that there's less of the autoimmune and bit more of me.
I read here often not only to learn about this truly wicked stuff, but also because it makes me feel less alone and more 'normal'. And there are some truly knowledgable folks here who always appear with wise words, when needed. Wish I could say autoimmunity rocks, but that's going a bit far, I think.
Anway, only popped in to say a few hello you're not alone words...seem to have rambled on a bit 🤐.
Really pleased that you have amazing boyfriend, family and friends to support you. Just don't forget...you're amazing too.
And you're here now, and that can only be a good thing 😉😊.
Take care xx
'I notice things I never had time to notice before'...that's it in a nutshell for me! 😁 A great post Foggyme, and I'm glad you've shared! Keep posting! xxx
Absolutely amazing person.
Thank you for understanding and posting. You're right in your words. Sometimes the small things in life that were once passed by without a second glance really do make the world of difference. I need to take a leaf out of your book and stop worrying about what I can't and am unable to do anymore and concentrate on the things I can. I need to stop punishing myself. Thanks sgsin. I am so overwhelmed to finally speak to people who really get it. There is nothing in my area and my rheumatologist doesn't really listen either. I laugh because it's better than crying 😀
Hi Chuckles0808. Until I popped along to speak to you, I wasn't aware of what I thought or did. So now I know I can do more of it! So you've helped me too, and I thank you for that 😉😀.
And I know exactly what you mean about your rheumatologist not listening - mine's the same. I rarely cry - but this man makes that happen!
As to punishing yourself - yes, been there too...and oh the guilt of knowing that my illness impacts on all those around me 🤬. Had to unlearn that and it's probably been one of the hardest things.
So good to hear that you're able...still...to laugh. Keep it up and take very good care. Will watch out for your posts to see how you're doing 👍 xx
Welcome to the site Chuckles0808,
I don’t have Lupus but have Scleroderma another auto-immune disease. This is a great forum and people are so helpful, these diseases change our lives but we mustn’t let them rule our lives. Don’t worry if things in the house don’t get done tomorrow is another day, if you need a rest don’t feel guilty about it.
Take care😀
Thank you 😊
Just sending a smile and hug your way. I have a relative with lupus and just thinking about it makes me want to cry. Know that there is much research and walks and things to raise awareness. Maybe go on social media and raise awareness. Yes, you will have bad days. I hope you find people who will share them with you. I hope for a cure!
Hi Chuckles0808! You've done a fine job of expressing your feelings there, so just keep posting! Feel free to vent too, this forum is just dandy for that! You're quite definitely not alone in the feeling of battling to keep your sanity now!!! 🤪🙃😵 xxx
So pleased you have found this site - it is full of very friendly and knowledgeable people who are super generous with their information and compassion. You are not alone with your experiences of lupus, even if you feel so - I recognise them all too well. You are also doing brilliantly to eat well and to be active when you can. I find it helps me if I concentrate on what I can do rather than what I can't and to realise that pacing myself is constructive. Take great care of yourself. With my very best wishes, Lily
Nothing like sharing a lived experience with those who are experiencing the same or similar! Express whatever you feel here about whatever you like, there’s always someone around to listen - you are not alone! Big hugs and a huge welcome xxx
Hi Chuckles0808
Hope today is a good day! I was diagnosed SLE 4 years ago and there’s no doubt it it is absolutely life changing. I was very active, loved walking miles every week, worked full time in NHS and loved socialising.
Four years later I find myself unemployed, maximum walking distance 15 minutes at a very slow pace and alone at home most days.
It is difficult for others to understand the great feelings of loss we experience. Loss of mobility, loss of employment, loss of income, loss of friendships and even loss of home. But the biggest loss for me is the loss of self. The loss of who I was four years ago.
I too have great family support , but the deeper feelings I tend to keep to myself.
What I do know is it is gradually starting to feel a bit better since I realised I have Lupus! And I need to appreciate what I can achieve! I was so hard on myself.
I wasn’t prepared for walking in the front door of my own NHS hospital as a patient instead of walking in the back door to start my shift. So what changed.
I still wake up at the same time as my alarm for work. But now I have a different daily schedule. After I shower I help my daughter get to school on time every day, then I rest. I walk 15 minutes with my dog who is also my best friend, then I rest. I make lunch then rest. I pick up my daughter then rest. I heat up dinner which I need help to prepare, then I rest. At the end of this list of activities I feel ready for bed but aim to stay up to spend time watching tv with my husband. This may seem like a pretty meaningless and by all accounts boring day for someone but for someone with Lupus a busy and exhausting day. I now feel a sense of accomplishment because in the first two years I needed help with all these simple activities even showering.
Dont be too hard on yourself.
When my Consultant suggested trying arts & crafts 3 years ago I laughed in her face. Really. Now, I find I can sew dolls clothes for my daughter who thinks I’m the best mum ever, make lovely pictures with shells from the beach & enjoy reading books with strong independent women characters to remind me I too am a strong independent woman even if I am not who I was four years ago.
The small things are so important.
I also hired a mobility scooter for a week this summer for the first time. It gave me a feeling of freedom, speed and independence that I hadn’t felt for so long. I visited places I wouldn’t have otherwise been able to go.
I finally see acceptance in the distance. I have Lupus.
I also help my neighbour walk her dogs. But Being outside is good for me even if it’s sitting on a comfy chair in the garden reading on painful days when I feel rotten. If I can’t make it to the garden I curl up in bed with a box set.
I tell my husband every symptom old & new sometimes fifty times a day. I’m sure he doesn’t want to know but I tell him anyway! I find it good to offload. Although he has absolutely no medical experience he knows more about Lupus than most general doctors because he sees me every day struggle to live with Lupus. I keep a wee notebook to remember to tell my Consultant of any new symptoms at my next appointment. If it doesn’t settle or I’m concerned I phone my Rheumatology nurse just for reassurance.
I hope you are feeling a little better today. I think it’s important to know many people feel the same and you’re not alone even if you feel it.
Take care and have a better day
Kerrclan xx
It's all to easy to be hard on ourselves for the things we think we should be able to do and I completely agree that loss of self is the hardest thing to deal with. I constantly find myself asking for reassurance from my partner... Am I still fun? Am I still me? Have I changed so much? I guess I need to more time to come to terms with who I am now. Still me, just a more diluted version. Thank you for taking the time to reply to my post. I feel honoured that there are so many wonderful people in the world that relate to how I feeling xx
I loved your account of doing arts and crafts. You clearly have been seriously affected by your lupus. It must have been so hard to give up your work. I have not been nearly that affected by UCTD and was able to work but can still relate to having limitations, particularly now with autonomic dysfunction. But I have started to paint needpoint canvas. I just completed my first project and will send it to my friend for her birthday. It’s not tennis, but it is a new reward!
Hi KayHimm
Thanks for your interest in my post. I haven’t tried a canvas yet but shall definitely try one. Thanks for the idea. That will be my next project for sure.
I really miss work & was definitely not ready to medically retire but on reflection it was the only option. On balance I get to spend lots of quality time with my daughter & family which I never had with my demanding job.
Thanks again for your kind words. Take care
Hi Chuckles and welcome. What you are going through is in some ways harder than the disease symptoms. It is the grieving of your former self. It made me sad to read your description of being so active and now struggling at times to get out of bed. You can’t rush the process. I am 62 years now after being diagnosed with UCTD in my late twenties. I promise you will find new parts of your self and ways to compensate. I have been very fortunate with mild symptoms and have had a good life. So hoping the same for you!
I like the idea of having added dimensions rather than lost abilities, thank you ☺x
Thank you everybody for your kind words, I feel truly blessed to have happened upon this forum. What a difference a day makes 😊. I wish you all well xxx
Hi chuckles0808 and welcome to this community. I totally get where u are coming from and I know how u are feeling. I was diagnosed with cutaneous lupus last year and hadn't even heard of it even though I'd had symptoms for about seven years. The diagnosis hit me for six n I have been very depressed and angry at times..why me etc?! I'm on strong meds and don't feel that my life is under my control anymore. I've gone from being independent person into one that needs constant help. I have had to go into a wheelchair as I have ulcerated feet n that is incredibly hard for me to come to terms with ( I'm not there yet) . I talk to someone at MIND which helps get these feelings off my chest confidentially..I have a loving husband and two wonderful grown up daughters who are very supportive n understand my frustration..four rapidly growing grandsons as well!! I am blessed!! Sometimes it's hard to see the woods for the trees but u might actually find that u find more pleasure in smaller things..when I have done something that I considered small before..I really congratulate myself..I was being sarcastic at first but now I really do tell myself that no matter how small the fact that I have done it...whooopeee!! People here are all living with life changing illnesses n I find lupus UK really informative. Stay as strong as you can and talk to this community as and when..especially when doctors don't make sense.. there's usually someone who has had a similar experience. Best wishes and big hugs 🤗🤠 xxx
Welcome! Things will improve but it can take a long time and be up and down on the way. Finding things you can do rather spending your precious energy on lamenting what has been will help. I was diagnosed 11 yrs ago so this is from my experience! I took up art and now selling my pics!! Take care
Me in a nutshell was me in a nutshell nearly 40 years ago! I couldn’t have put my feelings better if I had tried. I hope they find a drug regime that works for you sooner rather than later. Get as much information about your illness as you can and share it! With friends! With family! Talk about how you feel and how you don’t want to feel like that as much as possible. Information is power. Good luck and much love xx
Hi Chuckles0808, I was diagnosed w unspecified mixed connective tissue disease around 2003. Have many manifestations of lots all autoimmune ‘stuff’..RA, ILD, Sweets Syndrome, Lupus, Raynauds n so on. On oxygen 24/7, CPAP at night. I’m going to be 81 this month and still kicking...I do have good GP, Pulmonary n Rheumatologist doctors. I have some my own ideas n methods (doTerra essential oils, raw apple cider vinegar for skin rash on head n face, etc). Find what works for you. Do what your drs say n tell them what you are doing for yourself that works. Stay in control of your care, hopefully you have family n friend support as I am fortunate to have. Many Blessings to you, Meantime
Hello Chuckles0808
It does feel like a lonely journey sometimes and everything you said I could have written myself. I got diagnosed 5 years ago and, like you, have really struggled to adjust to the 'new' me. It's a bit like a bereavement. I've found that the feelings of loss don't go away they just get easier to deal with over time but we're all different.
I can't top the fabulous post by Foggyme 👏 It makes such a difference when you can read the words others have written and hear yourself saying them.
Take care. 😀
Hi Chuckles0808 ,
Welcome to the LUPUS UK Community Forum. I'm glad that you've found us and it is excellent to see so many supportive comments from other members for you. I hope that you will continue to find this a helpful place for information and support.
Have you spoken with your doctor about your feelings and sense of loss following your diagnosis? Have you considered something like counselling to help you talk through the changes to your life? We have an article on our website about depression and anxiety which includes information about lots of support services available - lupusuk.org.uk/coping-with-...
If you'd like to chat to more people with lupus in other ways from this forum too, we have support groups across the UK; you can find your nearest at lupusuk.org.uk/regional-gro.... We also have a network of trained volunteer telephone contacts. If you'd like to speak to someone in this way, please let me know and I would be happy to connect you.
If you would like any more information about LUPUS UK you can request or download one of our free packs at lupusuk.org.uk/request-info...
Hi Chuckles,
I experience everything you expressed.. You miss you as you were, and no matter how many loved ones and friends you have, you are still alone in your illness.
Chronic illness changes who you are. Like you, I would like to curl up in bed, but force myself to move, even if it's to walk from one room to another. I only leave the house if I absolutely must and I feel very diminished and much less confident than I used to be.
I don't have Lupus and initially diagnosed on blood work as positive for GPA; then that diagnosis was changed to PMR/GCA.
For awhile, I stopped thinking about it, trying not to medicalize my life by constant visits to specialists and tests and more tests. Now I am flaring like crazy and after getting down to 4mg Prednisone, I may have to bite the bullet and up my dose.
Yes, Chuckles, we miss what we were before. As many others have said, we have to adjust to a new normal.
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