People with chronic illnesses - how do you keep positive?

Thistle-down

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?

pathtofreedom

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.

Armchair23

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

Anoneemoose

Hi!:hello:

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)!

CountingPennies

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

Mojisola

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.

CountingPennies

Anoneemoose wrote: »

Hi!:hello:

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!

This is my problem, always have some sort of pain. Think sometimes people think i'm a hypochondriac, lol.

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!

Me too! Love to bake when I have time! Also mourn over how I used to be!

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.

My friends always come to me for advice and to cheer them up. I love this, makes me feel useful.

I am also able to work part time and enjoy the company there and am good at my job (I think)!!

Me.... again!! Work part time and bosses understand I need time off at short notice. Have great friends there and love my job!

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)!

Practice what you preach..... I swear to god I could have wrote this post myself!! :rotfl:

CP xx

Anoneemoose

CountingPennies wrote: »

Practice what you preach..... I swear to god I could have wrote this post myself!! :rotfl:

CP xx

It is good (yet bad) to know people are in the same boat. One of the difficult things for me is people's preconceived opinions of illnesses such as ours. When you try and explain that you have been off for 3 months due to extreme fatigue and pain, they look at you like you're making it up!!

I have just returned to work after 3 months away and I am struggling a bit but getting there. While I was off, I slept A LOT but was also bored and fed up of only being able to do that. People don't seem realise we don't choose to be this way.xx

so_very_confused

pathtofreedom wrote: »

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.

At times I think I am the only person having to spend the best part of two days in bed in order to be able to work my three nights. Work is all I o anything else in life has to wait for annual leave and that includes the housework. I can get miserable at times but just keep putting one foot in front of the other. What price our independence

Thistle-down

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

Anoneemoose

Thistle-down wrote: »

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

Aww no. Poor thing. I hope you get some answers and feel better soon.xx