Chronic Pain (Disabilty Forum Discussion)
Welcome to a discussion about chronic pain. I will post a new question every day and tag people who have been participating. This will go for five days. Feel free to jump in at any time.
What are your methods for coping with your pain? If you like, you can share your illness, your pain level on a scale of 1-10, and how long you have been living with this.
This is Question number three:
Have you told anyone about what you are experiencing?
How did you tell them?
@BlindGrapefruit
Skye s Family knows and does very well by her overall.
@Fireskye13
glad to hear it!
@BlindGrapefruit Haha I think I go a bit TMI with some people but the last year has been hell so I just don't give an F anymore. Open book, if some people don't like it they can distance from me.
My husband has always been in on how I feel about everything.
@BlindGrapefruit I tried telling my family and they ignored me and I can't tell my friends cause they already think I'm lazy because I'm antisocial. I have given up really on telling people, I just feel bad all the time.
@leibabu I hear what you are saying,I have given up also.
@BlindGrapefruit
Greetings people's! I am Sarah, Sykes alter. On Trying to help while she's away.
Skyes pain is caused by a car accident when she was 6.she has a traumatic brain injury. She's not in pain daily,but Sometimes the migraines get bad.
@Fireskye13
Sorry the pain is so bad, it is good to rest and take care.
@Fireskye13
Welcome, Sarah.
@BlindGrapefruit
Greetings grapefruit, I'm incredibly sorry for the late reply, Skye didn't get tagged apparently.
I appreciate the warm welcome. Its been awhile since I've been here on cups.
Have an amazing day fare the well!
@Fireskye13
late replies are always ok, I do that too sometimes <3
@Fireskye13 I hear you. Migraines can be crippling. I suffer from them as well, 24 years. Sometimes music helps- depends. Sometimes hot showers 🚿- temporarily. I get them for several days at a time so it's just one hour at a time. I welcome suggestions too.
@resourcefulStrings3902
Oh my gosh 24 yrs that's horrible. Idk if this is allowed to say here,guess I'll find out lol. But lately I been using thc, its helped alot.
This is Question number four:
What support systems do you have in place in order to help live your life to the best of your ability?
What would you like to be put in place?
@BlindGrapefruit I do have a team of specialists and the rare blood clinic especially has really been helpful, plus they have had some staffing changes all for the better. My husband is super supportive. My parents and sister can be judgemental and say the wrong things, but I do know there are always there for me if I need anything and they love me. So not always the best emotional supports when going through a hard time, but they do their best.
I do wish I had better medical support. There's been a lot of medical mistakes, a fair bit just due to how the system functions rather than individual doctors. With rare stuff the knowledge isn't always there.
I'm also missing some of my usual stuff right now. It's been a long time since I've had a good, professional massage. My massage therapist did come by to my house after my biopsy to help with the tension in my neck, but not being able to lay down it just wasn't the same - although I was very thankful she came by then, it's not how she usually works. Once I was healed I had a massive flare of eczema and then COVID hit so it wasn't even allowed. Massage therapists are allowed to work now, but my risk factors mean I'm not going in yet.
@AffyAvo
I am always impressed with how you handle your medical team and keep them educated as best you can. I have also felt I did not get the support I needed, and doctors are often not well informed. I hope you are able to get a massage soon!
@BlindGrapefruit
I have my Family they are my main support system.
I'd like to do more for myself I think.
Question number five:
If you could say anything to make people more aware of your illness or illnesses what would it be? Do you think there are any positives to living a life with your illness?
@BlindGrapefruit I feel like I am often educating doctors about my illnesses. I wish they were just more aware, or if I was to do the educating that it was a standard part of medical school! I do mentor medical students, but if't just a few, it's not an entire class.
I don't think of my illnesses as positive at all. There have things I have done and learned that are positive, but were choices. Ie. Since I wasn't working/in school I was able to spend time with my sister & nephews during her mat leave.
@BlindGrapefruit
Most people Wouldn't don't realize I have a injury, most people look at me and see my size and assume ima jus a little kid.
A positive not so much living with it, but my Family has become more aware of invisible problems and have started educating themselves and dad say Hopefully others about invisible injuries.
@Fireskye13
Education is very important, especially for invisible illness. I am happy that your family makes the effort to learn more. I hope that more people will become aware through your efforts. If there is anything we can do here to improve awareness please lets us know!
This thread is still active if anyone wants to participate
Hello! I've recently been diagnosed with Degenerative Disease (back pain). I'd like to know how to cope with it at work... I already do the lifestyle and ergonomic tips they post online.
My current system is I do desk-work one hour then do exercise steps the next alternatively. But that cuts my progress in half.
Tips and advice are welcome. Thank you!
@orangecountymscassie
We don't typically offer advice per se. The idea is that we give emotional support. And we are not medical professionals. However, I have gotten tips from people that helped me so I will pass them along. I find that soaking in an Epsom salt bath in the evening helps the next day. I have muscle pain so this may not work for everyone. Heat is very useful, I use a simple thing that is shaped much like a sock and has rice in it and can be heated in a microwave. It can be placed in the lumbar area of the back or it can go around my neck or wherever needed.
I work from home and I make use of cushions. I find it easier to work in a slightly reclining position. It seems to help my back.
Some of my favorite cushions: https://www.amazon.com/SOOTHE-CISER-CERVICAL-SHOULDER-RELIEVER/dp/B000Y4YO54 and https://www.contourliving.com/backmax-foam-bed-wedge-body-cushion/
Hi all, I am a long tearm wheelchair user, with multipl conditions causing chronic pain. In short I'm good for the scrap heap.
I have spent years on very high levels of opiate based drugs and I am now drug fee and feeling better now than taking all the pills. Sadly their use had done more than than good over the years.
It is lovely to be able to introduce myself to you all and hope We get t9 chat soon!
@magicWillow76
WOW! You have done an amazing job! I am so happy for you and also so impressed! Welcome to the community! We have a chat room in addition to the forums and we have guided discussions several times a week. We also have weekly check-ins here in the forums and discussions and icebreakers, I hope you enjoy participating and getting to know everyone! Feel free to message me anytime! I may be slow to respond but I get around to things eventually. Much love. <3
