Chronic illness


My fear of flare ups

 Chronic pain is horrible. Chronic means; something negative which is long lasting. 

My pain is complex, I have multiple kinds all over my body.

The chronic pain started when I was 10 ish due to my nerve damage from Neuromyelitis Optica. I was on gabapentin to manage it – which is used for moderate to severe nerve pain. It worked for a few years. 

 Since then it has gotten progressively worse. Between stress, steroids, NMO, being overweight, using a wheelchair, weather changes, over doing it, being bed bound and deconditioning my body is a painful mess. 

Anyone with chronic pain knows that we have “flare ups”. During a flare up the pain and related symptoms become considerably worse. For me it goes from bearable to unbearable.

 After a huge flareB46D4B8D-D9D3-4B89-B4CA-788BAFCE7626.jpeg up in January 2017 which lasted 6 months I have developed a real fear of having another flare. I was on oral morphine 24/7 during that time and completely bed bound besides appointments and really struggling to cope mentally. I felt so awful I wanted to just die. I couldn’t bear it. I had no hope it would ever end or I’d get any relief.

  Fortunately the horrid flare eased off eventually but I remain on daily morphine as well as other medication. 

 Any time I’m having a bad pain day now my Anxiety is instantly increased because I don’t want to feel like that again. I realise anxiety makes it worse but I can’t help it. To be honest the mental affects were worse than the pain itself. It was so scary. I’m so scared that it’ll happen again and I really won’t cope next time. 

 It’s hard because I’m still bed bound, super pained and fatigued so I can’t do much else to prevent a flare like exercise because I’m not doing anything to cause one in the first place!

 It is so frustrating. I hate wasting my life away in bed when I have so much to offer the world.  I’m taking it upon myself to find other pain relief methods such as holistic/herbal remedies, alternative & complementary therapies and other pain medicines – if anyone has experienced relief from this, let me know!

 My doctors are amazing and help me so much, but like myself they don’t know all the options available for me. So I am searching.They work 5 days a week 9-5 and don’t have time to do that research so I’m doing it myself. I plan on finding out how else I can manage this awful pain and fatigue. 

My health always comes first for me so I’m prepared to try what I can to be my full potential. I’ll feel more prepared for the flares knowing there are other options for me to try. 

During that awful flare what helped me was knowing as research develops there will be more options available to patients even for those who have tried everything already!

This post was written as an insight into the difficulties patients with chronic pain face for Pain Awareness Month  feel free to share your personal experiences below.



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