been feeling really down for a few months feel as if I am just sitting here waiting to die. everything seems to cause stress, wondering if I will get reassessed and found fit to work, constant criticism from my mother for everything I do, feeling of worthlessness. thought if maybe I could work I could get enough money to come off benefits [problem one solved] move away from my parents [problem two solved] plus I would feel more useful. but then lupus hits me and all I want to do is sleep, hydroxychloroquinine made me dizzy and I'm back to square one doing nothing. it's catch 22 and I just can't break free. are there any charities that could help me work? I know the job centre is supposed to help but I fear being found fit for work if I so much as mention it to them.
how do I change my life and rid myself of stress - LUPUS UK
how do I change my life and rid myself of stress
Hello suzannah16,
Sorry to read this post and sorry you are having a tough time.
Is there any pattern to your flares? Maybe try and keep a diary. I know myself when I’m bad I can not do anything, but when I’m good I can achieve so much.
It’s ok to be off sick from work sometimes. This would be the area for you to assess how often you are ill.
I manage to work, I want to work, I don’t want to be ill, I don’t want to be different i want to have as normal a life as possible, and this at times is achievable and of course at times is impossible. I do believe in positive mental attitude and This really helps me at times.
Only you can take control of your situation. Pen to paper can help you process your own thoughts
Xx
hi lisalou, flares whether they are fatigue or pain seem totally random, to me at least. but usually seem to come when I am feeling good and feel I want to achieve something It's like they are sitting on my shoulder and pounce when I feel well just to remind me they are there. I suppose I want someone to do the hard work eg find me a job that is willing to take me and pay me, I have done too many job centre schemes over the years where I am just free labour but not good enough to employ when a paid job come along. if someone could just present me with a paid job without the hassle of interviews and cv i'd try it right now I feel too mentally tired to even look and see if there are any jobs.
I so feel for you Suzannah. Forgive me if my suggestions sound a bit pie in the sky but I wanted to say something at least.
I do get very low sometimes but I think I’m relatively fortunate as have a very practical husband and 3 young adult sons who often phone and stop me becoming too isolated.
If my parents had still been alive I think they might have been very critical of me too and told me I was making my poor health a reason not to try harder.
But then they ignored their own poor health and both died suddenly and prematurely as a result. However at least they lived to the full while they could whereas I often feel I’m living at half mast these days, mainly due to fatigue.
If I’d got my PhD funding then I’d definitely have invited you to participate in the drawing and group discussion workshops that I had planned as part of my research. But as I was unsuccessful with the one funding application I made - and as, like you, I struggle with untreated autoimmunity and heavy fatigue, I have given up on this big ambition now.
Instead I’ve set my sights on smaller, more achievable goals because I’m 55 with longstanding autoimmunity and, like my parents before me, I want to live as fruitfully as I can in the present. We can’t escape our genes or the deal we get dealt with our health but we can try to enjoy the things within our reach at least.
So I wonder if there are any local groups you could join who meet up and focus on other things in order to briefly escape everyday problems and worries? This focus might be on folk singing, stitching/ crafts, drama or just whatever ticks your box. Even tai chi or Pilates classes geared towards people with mobility issues seem to be available in most places.
I haven’t looked into this for myself yet because I’m relatively new down here and one of my dogs has separation anxiety so it wouldn’t be fair to leave him barking for hours on him or our elderly neighbours.
I miss my island world a lot socially having lived there for so long. But I’m much more focussed as an artist since I arrived here and one day maybe I’ll be more proactive again about joining in social events.
But then I am not living with parents who make me feel hopeless as you describe. Although I sometimes hear them chastising in my dreams!
Also I wonder is there a local Lupus UK group near that you could join perhaps? Even volunteering can give us focus and be a good way of meeting new people with things in common. And volunteering doesn’t count against you if you are claiming benefits either. X
hi twitchy, I'm just a year younger than you but feel the same age as my parents who are in their 80's. the problem with joining groups is people, most of the time I find people either overwhelming or irritating. I think it must be the mood swings so joining groups just doesn't appeal. as for working even if I found a job I thought I could do I doubt if an employer would choose me over a healthy person. i'm not qualified to do anything I just have common sense but that is generally not a quality employers seem to want. I wish I had a talent like you have with your art maybe then I could use that but I am more enthusiastic than good at crafts. I suppose my main interest is animals but since my dog died in march I no longer have any pets, my mother told me she wouldn't care for another dog if I got one and had to go in hospital again and while I understand she feels too old to do this it's not like I ever asked her to walk my last dog just feed him and let him out in the garden a few times. she did get somewhat irritated by him during his last few months through no fault of his. I've tried asking around to see if anyone wants a free dog walker in my area but no takers, I couldn't do this for work as I couldn't be reliable same time every day.
It's possible to do the dog walking. There's a site called Borrow My Doggy which matches people who would like to walk a dog with people who aren't able to walk their dog as much as they would like.My dog has made many doggy and human friends by being "borrowed" . I've made friends with borrowers too.
As an owner I pay around £40 a year to cover insurance in case of accidents. Those wanting to borrow pay much less, again to cover insurance. No money exchanges hands otherwise.
If you think this is a possibility, try. One of my borrowers suffers from anxiety which is helped by being with a dog. She can't keep one where she lives, but they can help each other.
hi lupi, it was one of the first places I tried but no takers. no one in my area who enrols on there seems to reply, I also tried pet fostering Scotland but they don't seem to operate in my area, little communication from them since I replied just terse comments that they can't find home checkers in my area so I guess they are not operating here or they would have someone.
Sorry about that. I suppose I'm just one of the lucky ones.
I can relate very much to grumpiness around people. And I’m really aware that having a vocation such as being an artist is incredibly helpful when it comes to processing or having an outlet for the experiences and emotions attending autoimmune diseases. I get into my studio and I’m able to put a lot of the negatives into my work and then have less targeted bile towards those who have upset me. In fact I can almost measure how much I’m getting into my studio and working or not by the tone of my emails, posts and comments here and texts and phone call conversations.
I thought Eekt and others have made interesting suggestions and perhaps you might write or undertake some kind of distance learning course with the OU as you clearly have a good brain.
Also my friend with Addison’s, severe osteoporosis and Sjögren’s has fostered dogs sometimes. People with dogs often need back up of a dog loving minder for a few hours/ days whatever and so much nicer than kennels. So perhaps you need to advertise this a bit more with posters or cards or on Facebook? X
always the voice of reason, your posts often make me feel better. I thought about OU but haven't a clue what I would aim for, I've never had any ambition to do anything probably why I feel in such a mess now. I used to have a brain but now it seems foggy most of the time, I would read a book or two in a day I loved maths but I haven't been able to read more than a few paragraphs for years as my mind wanders. I have tried many crafts but the results are not very good, I've been trying to teach myself to crochet from youtube since Christmas, I start something and lose interest fairly quickly the few jumpers I've made I hate by the time I've finished them. I tried signing up with a few doggy foster agencies and have only been accepted by one but it's been 3 months and they haven't sent me any dogs, I tried offering free dogwalking in my area but no one contacted me. If I tried advertising the doggy bit even without payment that could be enough to lose my benefits as it would be considered as working I couldn't do it regularly enough to charge. I just feel like I open doors and they all have brick walls behind them.
changing the subject how did you get on with all the sun we had this year? do you get lupus rash? it seems to be one thing that so far I don't get, health wise this summer actually made my body feel good if not my mind, wonder if I can get a transfer somewhere sunny on NHS for health reasons 
maybe enough sun would help my mind too if it lasted long enough
I do think our state of mind and how we manage our health are intrinsically connected.
For example I currently have a young PhD student from China shadowing me for a month in our studio - and it’s really made me up my game. But also she’s lovely and extremely mature for her years so I’ve loved learning more about her family and upbringing in rural China and she’s been learning stuff from me too I think.
Then, when I suddenly had the overwhelming fatigue today I just bedded down with the dogs and slept while she wrote up and researched and did a sketchy floor plan for her research which included me curled up asleep in the dog basket!
I’m not being paid and there is no clear benefit to me career wise, but it’s just so great having someone of a very different age and culture to chat to in between working and dog napping - and we have established such a lot in common despite the obvious differences. Such an unexpected source of joy really!
I can’t advise you on how to find similarly diverting stimuli Suzannah as it has to come from you of course. But so far you’ve said that you love dogs, you enjoy maths (can’t relate to that at all I’m afraid - numeracy-and me aren’t friends) and not wanting to compromise your benefits. So from this I think there plenty of hope for you to find something that could focus your concentration. For what it’s worth I drift off all the time so barely read books further than first chapter these days.
But if the topic is sufficiently close to my passions I can easily soak up related information - particularly if it comes in the form of short but well written research, articles, really engaging detective dramas, YouTube videos and one to one conversations. I’m obsessive by nature so not good at processing information unless it feels very relevant to me in this time and place. X
You're in a fix and not getting the support you should have - but you do have a remarkable talent: putting emotions across powerfully in writing! 😊 Pen to paper, as Lisalou suggested! Send your doc a letter in advance of your appointment (next week?) as there might not be time to talk about all your feelings. List all the things you would 'like' to do for the Jobcentre - it's called 'support group' for a reason! - and see where they can help: it might be an animal care course, or a volunteering opportunity, or a short-term work placement, or a place in supported employment, where a special adviser will work with you AND the employer so you can both benefit the most without any adverse effects on your health.
PLUS - this one's a bit left of field - there are great chances like the Churchill Fellowship (wcmt.org.uk/apply/award-cat... where you could get a scholarship to travel and see how things work in other countries: maybe how progressive countries - like Germany, Norway, even Australia! - support folks like you in happy working lives....deadline is 18th September, OUCH! But writing the application would be no problem for you!
It's very cruel, but it's going to be up to you to get the ball rolling, and I wish you all the very, very best! 💪💪💪 xxx
Suzannah 😗, there are places like the Chisholme Institute, a few miles from Hawick but VERY remote (chisholme.org/Volunteer/vol... where you can volunteer and live for a day or two, or weeks. This one is 'Dedicated to the art of self discovery': it's non-religious but you can join in meditation if you want to.
They encourage you to get in touch with them if the small cost to cover food is difficult - they look at everyone's circumstances....obviously Ewan McGregor pays the full whack !! 🤫 🤫 🤫
Maybe even a day or two away from normal life would help you focus? mo xxx
I am so sorry that you are feeling so defeated...I am older most likely. I mostly struggle with fatigue...unless I get touched by the sun..then RASH.... my joints feel better I guess because I take hydroxychloriquine...when I am slammed with fatigue(at some point every day) I feel like I am waiting to die also.... yet like you, continue to move forward . Xx
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