26 Feb 2015

A question about : People with chronic illnesses

I am in the middle of another Lupus flare. I am in a lot of pain and find doing basic things, like taking a bath or going to the toilet, very difficult.

Not that many years ago I did a lot of hiking/walking and was an active member of a cycling team, I would love to be well enough to get back on a bike. At the moment I'm overweight due to steroids and have a hard time finding the motivation to get out of bed. I force myself because I refuse to give in, I have a family to look after and also need to work when possible.

I am trying to eat the right things, get plenty of sleep and keep the stress levels as low as I can. I am on a ton of meds at the moment and would love to be off of them one day. Sometimes it just feels so hopeless, then I get angry with myself for being such a self-pitying ninny.

I'm not asking for medical advice - I just want to know how other chronic illness sufferers keep a positive attitude?

Best answers:

  • I can't remember who told me this, but find a picture of yourself as a young kid. Stick it in a frame somewhere you are a lot, and when you catch yourself beating yourself up for what you can't do, look at the picture and think you'd never talk to that little kid the way you are talking to yourself right now, so don't do it to yourself now. It is easy to get into a spiral of what you can't do, I'm right there with you most days.
    I find trying to focus on something you can still do, even if you're really broken and that is just watching netflixs for a while or something, you're still doing something. I taught myself to crochet watching youtube as well so that is my next step up, I might not be able to cook my own dinner, but I can do a little bit of crochet sometimes, when my hands aren't too bad, and see something taking shape in front of me. It is trying to be kind to yourself and finding something small you can still do that you enjoy.
    I struggle so hard to keep working, which means I work and sleep and that's about it. It isn't much of a life, but I think we sound similar in not wanting to give up what independence we have. Sometimes though our bodies don't agree, no matter how strong willed our minds, and you do just have to rest enough to still function else you'll just drive yourself potty. The with pacing build yourself back up, don't jump into doing housework or something straight away though, it needs to be really really slow baby steps, else you'll set yourself back then get frustrated again.
  • Thistle-down I just don't know, I'm not in that place myself but it sounds so debilitating.
    Drug treatment/pain relief does it's bit but that's far from all you need.
    I'd definitely seek some psychological support as being something that might benefit you, self help groups and if anyone can summon the funds and interest on your behalf - therapy.
    When you look at the more advanced forms of help that you might EVENTUALLY get offered all forms of pain management are fully integrated with psychological support. Because when the drugs don't work you need to be helped to find other ways of dealing with things.
    I'm a massive fan of placebos, no know side effects and they might actually work !
    Best of luck hun X
  • Hi!
    I will be interested in replies to this because I struggle to stay positive too. I have Fibro and CFS and I hate it. I am overweight (no excuses really, apart from finding it difficult to exercise and eating for energy slumps). I also have pain most of the time in some area of my body!
    I get really, really fed up and mourn for what I was once able to do (I was slim, fit and healthy and I swam a lot. I suppose now I just try and appreciate what I can do still. I make cakes as a hobby and love my creations, especially when they bring my friends and family happiness!
    I also try and think of how I am helpful to other people. My friend has had a rough time lately and I have been there for her - not that I want or need recognition for that but it feels good to know that she feels she can rely on me.
    I am also able to work part time and enjoy the company there and am good at my job (I think)!!
    It is difficult but if you're up and down then I would say appreciate and enjoy the things you can do when you're able. When you're not so good, then just enjoy taking it easy. (Must practice what I preach)!
  • Thistle-Down.... My positivity comes and goes! Last few weeks have been quite low for me. I have a chronic lung condition with a very weak immune system so catch everything going. Have put weight on due to meds and blaming my low mood on being diagnosed with early menopause.
    One thing that does make me feel a little better is when I do a little bit of exercise. Which is why I have promised myself to swim a little bit tomorrow. Get myself back into it now I'm feeling a little better.
    Different things work for different people. Forums for people suffering from similar things often help. Knowing that your not alone. My kids help and definatly play a part in keeping me going when I'm very down.
    Maybe this thread could be something that helps you? I'll happy join in and cheer you along! We could support each other
    CP xx
  • I've been ill for many years with ME. Like you, Thistle-down, I was very busy with outdoor activities for pleasure and had a physically-demanding job. It's very hard to get used to being inactive.
    I think you have to let go and mourn your old life, just as you would if someone died. In a way, our previous selves did die when we got ill.
    Years ago, I was stuck in bed, listening to the radio and heard a fit person lamenting about busy their life was and how they didn't have time to do things like sit in the garden and watch the birds. I thought - well, I have plenty of time to do stuff like that. It seemed silly that busy people wanted to have more time and people like me who had what they wanted were wishing they could be busier.
    I decided to live much more in the moment and find something to be happy about in small things.
    It's much, much harder to do when you're in pain. Unless I really overdo things, I'm not in pain any more but I remember feeling swamped - as if the pain was the only thing that existed in my world.
    I hope you can find some relief soon.
  • you are all so lovely, and it helps just knowing you are there.
    I had a bad night, woke up with my eyes almost swollen shut and a terrible rash, just on my way to the hospital. Will post more when I return
  • Keep up posted Thistle. Feel better soon.
    CP xx
  • Thank you all!
    I'm back home now, pumped full of steroids and antihistamines. Feeling a bit better but my eyes are still very swollen and sore. They were going to keep me in but decided I would probably rest easier at home.
    The thing that has really got me down even more than the not being physically active, is that I am a singer/songwriter. It's my passion, what I live for, aside from DH and kids. I have only had the courage to put myself out in the public eye for the last 6-7 years and things are now starting to happen for me.
    I was contacted by a guy who is much further along in his career than I am, he heard me on the radio and asked if I would open for him on his UK tour. It would have been a huge boost for me, a lucky break that could open untold amounts of doors. I had to say no because I couldn't commit to being healthy enough to do it. I have no idea how I will feel when I wake up each day.
  • What good advice you have gotten already.
    I am 27 and for the last 9 my health has been getting worse and worse; no diagnosis which equals no treatment, what little I can do medically for it I liken to using a sticking plaster for a gaping wound!
    I try and find pleasure in the little things. I love a bubble bath and seeing the stars on a clear night. I follow and enjoy a lot of tv shows. Getting Now TV (previously only had Freeview) 14 months ago improved my home life enormously!
    I try to accept my illness and the limits it can impose.
    I try and find things I enjoy that I can fit in with my limits- at the moment I am studying online, at my own pace, which has given me a huge confidence boost and shown me day to day I can cope better with things I have previously tried to avoid where possible.
    I learnt long ago not to fight my illness all the time and not to try and be happy all of the time. I need times where I can mourn the life I should have and be depressed, in order to pick myself up and carry on a few days later.
    I also joined an online forum based on one of my problems (ties into suspected over all cause) which has been a huge help and support to me.
    I recently got some medical advice in terms of pacing and management techniques, even though my attitude was "I know my illness best" I do, but an outside perspective, and chatting to medical professionals who were understanding, helped me enormously.
    Not only did I take advice about how I could pace, I re-assessed the things I was already doing myself and was able to improve on those.
  • I'm so glad I could help. Both the CFS/ME OT and Pain management team taught me about just that viscous cycle, and how to try and break it.
    I used to just rest after activity, it never occurred to me to rest before hand too!
    I'd think, "i'm feeling ok so i'll get up and do X". Now it "I feel ok, so I will do X, after I sit for 10 minutes".
  • I don't have any chronical ilness but of course there are times that I feel really down. I try to do things that would make me happy. Reading is one of them.
    I also have sound files that I listen. Try to find some information about mindfulness on internet.
    I always loved crafting but I 'm not very talented. So my creations are... Let's say nursery level