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Friends and Chronic Illness

I'm just gonna say it. Maintaining friendships with a chronic illness is tough. It's even harder to make new friendships and meet people many times. There's a lot that goes into this: pain, anxiety, depression, and especially fatigue. Take your pick of symptoms. Having a chronic illness is exhausting. It helps to have people send a message checking in. Or just to talk about something random or that you, the person with chronic illness, is interested in. What's even harder sometimes is not knowing anyone else with your disease. I don't know anyone with Neurofibromatosis type 1. Or with chronic pain. I have family for support and I am very grateful for them. I always will be. Sometimes the support a friend can give is different and really helps. Anyways, just wanted to share some thoughts. Hope everyone is having a good day!

#NFType1 #NF #NeurofibromatosisType1 #Neurofibromatosis #NFWarrior #ChronicPain #ChronicIllness

14 people are talking about this
Community Voices

Suggestions to help pain?

Today is a rough pain day. These have been becoming more frequent but today is an especially tough day. Even with medication everything hurts today... head, abdomen, back, my arms and legs, etc. So I am asking for help/suggestions.

What helps your pain? Be it medication, rest, hot/cold packs, herbal remedies, exercise etc.
Have a great Sunday!

#NF #Neurofibromatosis #NeurofibromatosisType1 #ChronicPain #ChronicIllness #Remedies #treatments

25 people are talking about this
Community Voices

Tough time

It's been a few weeks since I posted. I've been to the doctor's and need to see additional ones and have imaging on my tumors. Having a few new symptoms and more pain. It's frustrating and hard. I can't work right now but I was also told that I'd need a great lawyer to get on disability even though I have a genetic disorder causing bad chronic pain. I want to work and be productive but am having a really hard time with even getting going most days. I'm trying to stay positive but traumatic things from my past have reared their ugly head. And im struggling to sleep well. Also found out my dad has sarcoma. If anyone has advice on disability, pain relief, healing practices, or sleep practices please share. I'd truly appreciate it. Or even tell me something good. I'd honestly really just like to even talk about random stuff, too. Have good day everyone

#NeurofibromatosisType1 #NFType1 #Neurofibromatosis #NF #NF1 #Depression #Anxiety #ChronicIllness #ChronicPain #Tumors #braintumors

3 people are talking about this
Community Voices

Transitions

Life transitions are difficult. They are even more challenging when faced with chronic illness, both physical and mental. I have gone through many transitions in the last couple years. I know it took a toll. And I am recovering. I am regaining my life,albeit slowly. It is not easy as I had an ableist mindset concerning myself only. I pushed too hard for too long. Now I am learning what's right for me in many areas of my life. It is worth the work but it is also very draining work. This is just a snippet of my experience. I fight chronic pain, depression, and anxiety daily. There is a lot to me. There's a lot to each and everyone of us. I thank you for this space. What are experiences on these themes/topics?

#ChronicIllness #ChronicPain #Depression #Anxiety #MentalHealth #NeurofibromatosisType1 #NF #Neurofibromatosis

Community Voices

Music

On Spotify I made a playlist only nf and I don’t know a lot of song and I am just vibing Nf da best for me #Despression #musicuntilthedaywedie #NF

Community Voices

Numb

I think I have reached the point of just shutting down in life. I have nothing left to give. People take and they take and then just walk away like you never even existed. Poof gone. There's a line in an #NF song that says "broken legs but I chase perfection." no matter how much it hurts I try so hard to please people. I don't know I'm still trying to figure things out. Thanks for listening. #ramblings #numb

Community Voices
Community Voices
Community Voices