People with chronic illnesses - how do you keep positive?

CountingPennies

Keep up posted Thistle. Feel better soon.

CP xx

Thistle-down

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.

Anoneemoose

Thistle-down wrote: »

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.

I'm glad you're home (albeit in a fragile way).

Yes, your circumstances do sound awful and it's no wonder you feel down. You have the option of fulfilling your dreams but are held back by your body. Although I know how restricted you feel, I can't begin to imagine how it feels to be missing out on something you're so passionate about.

Have you had counselling or anything to help 'come to terms' with being ill? I have been having CBT for low self esteem and although not a cure, it has helped a lot.

Take care and look after yourself.x

Thistle-down

Anoneemoose wrote: »

Have you had counselling or anything to help 'come to terms' with being ill? I have been having CBT for low self esteem and although not a cure, it has helped a lot.

Take care and look after yourself.x

No, none at all. I was diagnosed with "suspected Polymyalgia" five years ago ("suspected" as it is rare for someone my age to get it) and most cases are limited to 1.5-3 years, so we never thought this would be a permanent thing. It was only when it got worse rather than going away and I started getting malar rashes and other symptoms that they realized it's been Lupus all along, probably goes back at least 15 years. At the moment they are still trying to get my meds right to control the flares better.

KxMx

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.

Thistle-down

KxMx wrote: »

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.

That's something I needed to hear. A big problem for me is that when I feel ok, I try and get all the things done that I couldn't while I was in bed. I usually do too much and wind up back in bed. The "too much" seems very little, that's why it never occurs to me that it will set me back and yet it always does.

KxMx

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! :rotfl:

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".

Anoneemoose

Thistle-down wrote: »

That's something I needed to hear. A big problem for me is that when I feel ok, I try and get all the things done that I couldn't while I was in bed. I usually do too much and wind up back in bed. The "too much" seems very little, that's why it never occurs to me that it will set me back and yet it always does.

This is me! I am currently sofa surfing because I made a cake yesterday and then did the housework :eek:.

DH helped with the housework but I still did loads. I think I am probably going to have to cut down on the caking but I love it (and earn pocket money from it). The reason I think I had better cut down is because I am floored today and DD wanted to go for a walk round the block and I haven't even got the energy for that.

asajj

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

Thistle-down

thanks again. I've always played the guitar to cheer myself up but lately my fingers are swollen or get numb and make it impossible.

My dh is pretty good at making me laugh - today in the hospital he was wearing my sick bowl as a hat and keeping a straight face while talking to the Drs and nurses.