@Katieee97
Hi there,
Sorry to hear about your health care struggles. It's so defeating to hear doctors tell you there's nothing wrong. I was told that I had anxiety and wasn't managing my pain well enough and needed to learn to cope better. Turns out an upright MRI showed I had an Arnold Chiari Malformation and I needed brain surgery. The pain was real, I felt justified, and post-op I'm doing much better with pain. I defintiely had mood swings when I didn't have any medical answers. My family was supportive, as were my professors in college, but it's hard to explain soemthing that has no vocabulary. It's hard to get people to acknowledge that the pain is real without a doctor's backing (which is a shame, but unfortuantely true).
What kind of pain mgmt techniques do you use? Epson salt baths, heating pads that curve around the neck, topicals like tiger balm can all help. Do you think your job exacerbated the pain because you were bending your neck to look down as you prepped food? Is there any way you could use adaptive devices - a neck brace or cervical pillow - to give you relief outside of work? For me the biggiest thing was creating a set of expectations and listening to my body. I know now even post-op that I can't keep my neck bent long without pain, so I have my computer at an eye level height. I also use hemp oil (totally legal) from Charlotte's Web for pain. It's been the most successful drug compared to most opiods/prescription medications like lidocaine.
I think mood swings are pretty normal for your situation. If you're not getting enough sleep, if you feel upset about your support network, or if you're disappointed by the limitations that your body is posing then of course you might feel hurt and upset. I know that I had to go through a grieving process after I learned that I was handicapped and secured my diagnoses. I had to change some life goals to things that my body can manage, and I definitley felt loss and grief making those choices. That's not to say I gave up on everything. I had to put some goals on hold until I could secure better pain management. Even now I have put off travel plans to come up with a more accessible set of trips. I have managed to secure accommodations at work and I can do some work from home which puts me close to all of my adaptive devices and holistic treatments. I'm not sure if you could do any work from home (catering, writing a cook book, etc?) but it greatly helped me.
Looking back at the period in which I was in the most pain and undiagnosed I felt very lost and scared. I was worried all the time about my future - would I have a partner, could I have a family, could I maintain a career? Now at the other side of things I still struggle with health issues, but I have a network that is more capable of supporting me because I have learned to express my direct needs to them. I've been open and honest to them about being depressed and feeling loney in this fight, and they have adapted to become allies in my fight. It is hard to find the words, when I first tried to explain it to people I often wrote them letter on how I felt and what I needed - it was easier than speaking to them. It also forced them to read the letters, think about the situation, and get back to me. It took away the casual nature of a conversation.
It's hard to negotiate disability when you lack a good support structure and the future seems so unsure. I would recommend looking out to bloggers and finding a support group you can physically attend in your area. It is really positive to know that others are struggling and adapting, and can give you hope for the future. A few years ago I was wondering if I would have to live with my parents for the rest of my life. Now I live half way across the country and I'm completing a PhD program. It took a lot of work and forgiveness - I had to learn to accept my limitations and then creatively find ways around them. It's scary and isolating to feel like you're the only one going through this, but I promise you you aren't.
Feel free to PM me any time!
