People with chronic illnesses - how do you keep positive?

CountingPennies

Another netflix fan here. Only just recently signed back up for it as they have a much wider range of stuff with subtitles now. Hard of hearing too so reply on them.

Hope the steroids kick in for you soon Thistle.

Work was pretty quiet today, so it went ok. Tired now so will make sure I have a good night sleep before i'm back in tomorrow.

CP xx

lemontart

I have cfs/fibro amongst other things so often stranded on couch as cannot easily get up stairs so laptop, internet, netflix and freeview are my saviours for some form of sanity as well as some interaction with outside world.

Anoneemoose

I'm so glad this thread was started. Although I hate thinking anyone else is suffering, it is such a relief in a way to know others know how you feel without having to explain.

Gentle hugs and lots of spoons!!xx

Thistle-down

Anoneemoose wrote: »

Although I hate thinking anyone else is suffering, it is such a relief in a way to know others know how you feel without having to explain.

Gentle hugs and lots of spoons!!xx

My thoughts exactly!! :grouphug:

Thistle-down

Ummm, ok... :undecided

izzy65

Hi, I have SLE, Lupus, too, after reading this thread I can relate to so much, the pains, the guilt of affecting the family, the tiredness, the grieve at losing the life I had, lupus has destroyed my body I am on dialysis because of it and have had two failed transplants possible can blame lupus there too and a medical history that's beyond believe but I want to stay positive and get as much out of live as I can so wishing everyone here positive thoughts for as productive a life as is possible

Racheldevon

Hi


Sorry to hear you're having a flare up at the moment. I too have a chronic health condition, that thankfully now I'm in a better place with, although I still have it and flare up unpredictability. Certainly I can related to your experience, I had a really bad spell for many years, which left me in bed a lot of the time and really impacted on all areas of my life. I was dosed up to the eye balls of lots of different medications, mainly painkillers /antispasmodics etc which had significant side effects. I didn't want to spend the rest of my life on these drugs and reached a bit of a turning point...


Here are some of the things which have made a huge difference to me personally:
- I decided I wanted to get off of my medication, and did lots of research which suggested that on-going physio was going to be necessary long term alongside pain management approaches.
-I looked at which consultants were highly regarded in the field of the condition and managed to persuade my GP to refer me to London to see him.
-Through this it opened up other local pain management clinic services - I really had to push locally to get anything though - nothing is offered very openly I found. Through this I was able to get viable quality physio, access to hydrotherapy, acupuncture (all through the NHS pain clinic), you also see the clinical psychologist and superintendent physio.
-I quickly got disillusioned with NHS physio and found a fab private physio who has made the biggest difference to my daily functioning and wellbeing.
- Therapeutic input/counselling has been very helpful.
- Undertaking regularly pilates/other exercise appropriate to my condition has been important.
-I see someone for acupuncture privately, I find the more traditional acupuncture better than the western trigger point style often done by physios in the UK.
-I completed an 8 week mindfulness based stress reduction course at the local university in associated with the NHS, which has a strong evidence base for patients with chronic pain/health issues, I've continued this practice regularly and it really helps me.
There's lots of other bits I've experimented with, I guess it's quite an individual thing, but for me, felt like I shifted to be in control of my condition, not that it was controlling me, or that I was at the mercy of doctors and other people doing something to me, but that I had a choice in how I viewed and managed it.