Changes Coming

[vhnewtotn]

Seems that with the change in the weather comes the instability of the attacks. My right side acts up like clockwork, and the migraines have been less severe since the Botox treatment on Sept 5, but if I miss a single dose of muscle relaxer the tingles start so bad and I know something bad is coming.

The other side effects that have increased are also worse, the super sharp needle pokes that are triggering somewhere every minute. Seems the heavy pain of them can have the edge taken off if I have a constant dose of advil, aleve and tramadol, but certain places where it acts up are unbearable; tops and bottoms of my feet, sides of my knees, elbows, certain toes, and recently a new one that took me by surprise, my tongue! It is a muscle, but who would have been prepared for that kind of painful sensation that nothing can help. I didn't know whether to laugh or cry.

Obviously can't cry since we all know that if we cry it makes our heads hurt worse, a cruel joke since sometimes a good cry is very healing. Watched "Love and Other Drugs" today, and couldn't help crying at some of the hardships she went through at not being understood and the whole days spent trying to get a single prescription; I had to let lose and cry knowing how many of us go through so much of that hell with everything that goes with all that we deal with other than the TN in our lives.

Of course it brought on a migraine, but I didn't care. Felt good to cry.

For days now I have felt such low energy I've barely been able to get off the couch for basic needs. I have huge guilt knowing about the food that needs to be cooked in the fridge, protein I should be eating, should should should should should should......

I have orders to go out, pressure from family, classes starting tomorrow, appointments to go to, shopping that has to be done even minimally, and just getting dressed or reading the outline for the class is more than I can do.

Throwing out nore food makes me want to beat myself up more; I'm so hungry and have no money to do much except work with what I have, and that takes hours to prepare, and I can't stand that long. Everything that is so small in regular life is overwhelming in my day to day life that I just want to give up most days.

Minimizing my pain all my life has been what I have had to do to get through for everyone else, but now it is so bad there is no way to do that any more, and most of the people I minimized it for have long gone. I don't begrudge them, it just feels so lonely.

After all the years of crippling migraines I have only had about 2 weeks of them getting lighter so far, and it's taking some getting used to. I supposed that is putting a new perspective on things and shifting how I feel as well. Hard to imagine them being lessened after over 20 years of severe illness and daily dealings with them; too bad I had to trade it for TN.

Still looking forward to some answers to my sleep disorder as well that has the doctors stumped, where I don't go into REM until after 3am. The graph is amazing to see on paper. They have never seen anything like it, but I'm so happy that someone has finally captured it and now they believe me.

One of my drs suggested capsasian cream for the needle jab trauma to counteract it, but the problem with this is I never know where it will be, and my skin is so sensitive I can blister frion anything with peppermint in it, so putting hot pepper cream on my skin doesn't sound like a great idea.

I hate going to sleep since the nights are so hard, but the headaches are worse if I stay up all night. Also I have to make most of my food from scratch since processed food makes me react horribly with my IBS.

Funny enough I had my physical recently and my 'physical body' levels are all so normal, it's all neurological, nothing that anyone can see. People in my apartment building gossip about how I am taking advantage of the state and the government by being in the housing and on disability (which I am fighting for). It's a horrible feeling to be judged so harshly by my own neighbors and everyone that sees me when I go out and park in a hnamdicap space.

Just now I found myself woken up suddenly, fallling asleep out of sheer exhaustion from the pain. I get about 45 minutes to an hour at a time when I'm trying to function.

Back to work, to the guilt of not getting anything done in it.

Vanessa

[tkal]

Having an "invisible" disease is so hard when it comes to other people. Before TN I had and still have major depression. Some of my in-laws think I am just lazy. My FIL response "what do you have to be depressed about?" but my MIL is wonderful. She too has an invisible disease and I researched her symptoms online for years before I found something that might be the illness she had. She took in info I had gathered to her doc and after seven years of suffering the docs were able to treat her and the treatments worked! Confirming the diagnosis. She has her life back and is always thanking me for taking the time to research it. My point is that unless someone else has been through it, they can't really understand. The sad thing is that everyone gets sick in their lives and they are going to experience the same behavior from others that they did. You have to fight for yourself because no one will do it for you. It gets so tiring. When I was diagnosed with TN after years of dental pain and soooo many root canals and surgeries I was relieved, until of course I found out that it's just going to get worse as I get older.

It sounds like you are trying so hard. I don't know about your family but it sounds to me that you need a break. Not that you'll get one from the TN, IBS or Migraines. I too am on disability and my husband, my mother and MIL have been wonderful but the pain is too much. Cooking is impossible, I know. And being on all those meds are awful as well. I had to stop going to school, it got to hard to concentrate. I have migraines as well as IBS too. You should know that IBS and depression go hand in hand because the same neurotransmitters in the brain that regulate mood are the same ones that regulate the gut. Odd but true.

Excuse my language but F*** the neighbors. You are fighting a war here. You may win a battle or two here and there but the war goes on. Make you life, as much as you can, simple as you can. If you have to make your food. If you can eat fruit, then eat that. If you can make something, make the easiest thing you can and eat things so you won't be hungry, even if they are high in fat or calories. Starving yourself is not going to help anything. If you can only drink those awful medical drinks to give you nutrients, do that.

You need a strategy for this war. If the food spoils so what? Are you really going to think about spoiling food when your leg has been blown off? Nope. Are those appointments really necessary? What about a phone appointment for the not so urgent things. I always go to my neurologist and go and get my B-12 shot but have to make my psychiatry appts by phone because I just can't get out of bed.

Right now you are at a point where everything that is not necessary has to fall away. It is lonely but you are in a crises mode. Your energy must be hoarded for the necessary things. Go to get yourself food and then rest the rest of the day. People don't realize that energy is a precious resource and can only go for essentials. People with chronic illnesses know this. And there are people out there who are suffering and when they see you they know you are suffering too. I can always spot a person going through depression. They have a certain "uniform". Dark but comfortable clothing, not always clean. A little too long between showers, the circles under their eyes from not sleeping. We are the walking dead.

I know I can keep spouting out "you can do it" but it's not going to help. I can give you tips and they may or may not be helpful. Sometimes I listen to music, sometimes it helps sometimes it doesn't. Some of us are just plagued with so many chronic illnesses it's crazy.

Guilt is horrible and not always rational. And very difficult to control. I get that a lot and I can't control it either.

one thing, no matter how small, at a time, with plenty of rest in between.