Monday, November 14, 2016

Getting very isolated

I've been dealing with plenty of medical problems in the last few months, as usual. I've been dealing with a lot of pain and am not coping too well, emotionally.

I use anti-histamines, mast cell stabilizers, and various masks. They reduce my allergic-type reactions to an extent. But nothing prevents or treats the facial pain, which lasts days or weeks after an exposure. The scent can be perfume, lotion, scented hair products, fabric softener, strongly-scented detergents, air fresheners, scented candles, smoke residue, or a million other things, it seems, that contain these irritants. I'm to the point where I rarely leave the apartment, and I have to be careful with anyone coming into our home.

I am so used to being stuck at home a lot, being sick, being in pain, and doing it all alone 95% of the time. None of that is new to me. It's been 14 years since my first surgery, 13 years since I got my first wheelchair. It is my life. But this fragrance problem is so isolating, so frustrating, and causes me so much pain.

I have multiple diagnoses that contribute to this problem, but no one can exactly say how it got to this point. The chronic migraines were certainly the start of the pain. And it is not unusual for migraines to be triggered by scents. Then, the fact that my migraines became so frequent and often intractable made it worse. The nerves in my face got irritated by the regular high pain levels from the migraines. Then, after my surgery in 2013, my chemical sensitivities got stronger. The biggest reaction was to the hardwood floor varnish in our old apartment (the one where we had to break the lease, because I never could stay there.) Ever since that, the sensitivity to fragrances has gotten stronger and stronger. And the nerves in my face stay irritated most of the time. They often hurt for no reason (like this past weekend). And my face is usually in agony with weather changes.

When I'm exposed to an irritant, the pressure in my sinuses starts immediately. I get a sinus headache and fill with mucous right away. Gradually, the pressure increases into a sharp pain through my trigeminal nerves. It used to be primarily the left one, but currently, it can be either side, or both. I also start to feel like I want to crawl out of my skin, and I feel desperate to escape. I can't think about anything else but avoiding severe pain from starting. I often cry in relief when I can get away.

And staying in a scented environment for more than a minute will increase my pain levels and sensitivity to migraine triggers for weeks.  An example is that I stood in Wilma's vet's office for about 10 minutes last Thursday. The air freshener smell was strong, but I needed to get her prescription food. I wore my mask, and tried to breathe through my shirt for another level of protection. It wasn't enough. By the time I got outside, I started crying. I knew I'd irritated the nerves. My pain level was through the roof all weekend, and everything had to be canceled. No plans. Forget about my to-do list. I couldn't do anything. And I had to just stay at home and suffer, mostly alone. The horrible thing is, Wilma's food wasn't there, so I need to go back into the office tomorrow again. I don't know how I'll do it.

So, I need to find Wilma a new vet. Even though I love her current vet, I can't tolerate the office. I've also been putting off my dental cleaning appointment, because I don't know how I can be in an office that long.

I tried to attend a wedding last month, but barely survived just the ceremony sitting in the back of the church, away from people. The are many events I have to miss and invitations I have to turn down.
I won't be attending holiday gatherings this year, because people's homes are full of scents. Cleaning supplies, air fresheners, scented candles, personal products, etc. It's a minefield for me. And unfortunately, even if the home were to switch over to unscented products in the week before the gathering, these types of smells linger. They literally absorb into the furniture, the carpets, the walls. These household fragrances are so potent, and made to be stronger and last longer. Downy unstoppables, Gain long-lasting detergent, Glade plug-ins, Yankee candles. They all have long lasting effects on a home. Making so many homes off-limits for me.

Even in my own home, I often find the need to ventilate quickly, by opening the windows and blasting the fans and the air purifier. I'm very lucky we found me a new car that is not scented! As even after 4 months, my husband's new car is still too scented for me.

In stores, scent marketing is big business. Each store has a signature scent which is pumped through the air vents. Seriously. This is why most stores are out of the question for me. Kohl's and Bed Bath and Beyond are major offenders. I can't return to them. I can survive Target if I wear a mask near the entrance and near the laundry/fragrance aisles. Walgreens is becoming too much for me to take.

Oh well. It's not like I've been well enough to work, so I don't have any extra money to spend anyway. I buy most of the essentials online. But it just makes me even more isolated. And some trips are necessary.

I hate that I'm terrified to go anywhere or be around people.

But from what I've heard, chemical sensitivities have the potential to improve, after you have avoided all irritants for a long enough period of time. I'm just not sure this is possible. Even the smell of cooking can be an irritant. I take Wilma outside and there is often cigarette smoke or laundry exhaust in the air. The neighbors may be painting. So much is just unavoidable.

I'm seeing my migraine neurologist this week. She also specializes in facial nerve pain. So, I'm sure I'll be trying something new this week. Most likely is Gabapentin. The other option may be Tegretol. I have tried Gabapentin years ago, but my pain is a lot different now, so it's certainly worth trying. I absolutely do not want to take any new medications, but I don't think I really have a choice right now.

Looking ahead, if these medications fail to help my problem, or if I can't tolerate them, there are few things left to try. Migraine medications help my migraines, but not my nerve pain (which I admit, even I can't always tell apart.) Botox made my nerve pain worse. My dysautonomia specialist doesn't think I'll tolerate anything invasive. I do terribly with steroids, and they also don't seem to help this pain. So nerve blocks are out. Nerve ablation also seems unlikely to be tolerated.

If it gets to that point, I'll look more into medical cannabis and low-dose Naltrexone. I could always try occasional opiate therapy again, only when the pain is at its worst. But of course, these prescriptions are hard to come by these days. And I have an annoying reaction to opiates, where it acts like a stimulant, so I have trouble resting and sleep is impossible.

Other symptoms I've been dealing with:

My joints are trouble, as usual. But my hip pain became so severe that I had to give up biking completely! Now that I haven't biked in two months, my hip and sacrum pain is almost completely gone. So, yay! I'm avoiding long-term joint damage. But, of course, without that regular form of exercise, my leg muscles are shriveling away, and my POTS is harder to manage. I haven't really figured out a solution yet.

I've been considering physical therapy for a long time. Especially with the new EDS PT manual available, and a recommendation for an excellent physical therapist near me. The main problem with this is that I have trouble getting out of the house, trouble getting to the hospital, and even more trouble being reliable for multiple appointments per week. I would need to cancel at the last minute at least half the time, due to severe pain or other symptoms. Also, my body is injured by so many seemingly simple movements, I'm just not sure if a regimented protocol could work for me. Perhaps if I just work through the chapters on my own, using skills from years spent in PT. (It's not recommended to do this, of course.)
        {For those who have asked, the PT manual is here:}

Walking was such a great form of exercise for me for years, until my feet gave up on me. They became totally disabling. The custom orthotics and compression socks in supportive sneakers only help so much. They keep me able to walk around my apartment, but don't allow for extra walking. (I still need to use my wheelchair to get around a store, or my feet become too painful to walk around the rest of the day.)

Then, the recumbent bike was an even more perfect form of exercise for me. At least 3 days per week, I could get on and ride for 15-45 minutes, depending on the day, and work up a good sweat. My heart was in good condition, and my legs were strong. This worked out so well, until the hip and sacrum pain became too disabling.

I also have very problematic knees. The tibiofibular joints are completely unstable, popping out every time I bend down. So squatting is no longer an option. Even simple bridges are too much of a strain. I have to wear knee compression, plus side stabilizing knee braces all the time now.

So, I'm trying to figure out what's next. I'm pretty sure I'm going to do a free trial at a local gym that also has a pool. Swimming can be tricky. Actual swimming is hard on the shoulders, and no good with a rigid neck. So water walking and gentle exercises are okay, but it's hard to really get the workout you need. Also, I'm not sure how I'll handle the chlorine, as I haven't been in a pool since my sensitivities worsened. I have had trouble in the past with warm water pools, as they lower blood pressure. But at the gym, I can also experiment with different exercise machines, and see if anything works for me. Maybe a rower, or an elliptical. But those can be hard on different joints, too, although they are low impact. I have to try, right?

I'm still doing some very basic exercises at home. Ones I've learned over my years in PT. But only the ones which don't cause further pain, which is really tricky. And I know I need to be doing so much more.

So, thanks for checking in with me. I hope I won't have to miss out on all of the holiday festivities.