Tired.

I’m not sure if I can get any more tired.

Daily, I struggle with the pull of my own body’s failings.

How do I shake it off, when each time I think I can, something else is first added on, and then I have to start all over?

The drag of each next appointment. The lack of motivation to work. The slow removal of the ability to work. The diminished quality of my work.

How can I convince myself to continue with school and work, when I can barely keep my head over the “to do’s” continuously trying to drown me? I do I keep up my effort to stay above it? How can I keep up?

The pain is growing. Even just weeks ago, I considered my pain more of a “come and go” type of pain, with a very low level of continuous pain. It has changed. For weeks, the continuous pain has been steadily getting higher on the scale.

I know mine is still nothing compared to so many out there like me, but pain is personal, and mine is overwhelming me. It exhausts me. It makes it difficult to think, to talk, to open my eyes, to smile. I’m tired.

I’m not sure if I can get any more tired.

But then again…I have another appointment tomorrow.

 

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Back to Work

I’m sorry it has been so long since I have posted on here. As I mentioned before, I have started working full time in addition to my three graduate level courses, so I’m very beat nearly every day. I have a couple of updates for today.

I saw a geneticist not long ago and learned even more updated information about EDS, and it really opened my eyes to how little EDS is actually what causes the most pain and problems. Much of the issues I have, like Sjogren’s, sleep apnea, herniated discs, psoriasis, terribly dry, itchy skin, hypertension and more are actually from pre-dispositions in genetics. Interestingly, none of these things are genetic, but they do tend to run in families, and having close family members with them tends to increase the risk of getting them. In our family, that risk increases ten-fold apparently. All of these conditions can be significant issues on their own. All of them can be attributed from my father and most of my sisters and I suffer from many or all of them. With autoimmune disorders, you may not get the same disorder as the family member, but you are more likely to get some autoimmune disorder if a family member has one. Sjogren’s and Psoriasis are autoimmune, and my father has Psoriasis and rheumatoid arthritis and I got Sjogren’s and another sister has rheumatoid arthritis. My father also has sleep apnea, heart disease, herniated discs and other issues. Another of my sisters has herniated discs as well, and most have some sleep problems. It’s funny to me that we have this rare genetic disorder, but it seems to be quite mild compared to the multitude of other issues we have.

With at least one exception.

My sister “J” seems to have the most problematic EDS symptoms of all of us. She gets recurring spinal fluid leaks and more pain and fatigue than any of us. She often must use a wheelchair/electric chair, and is at times bed-bound. With four boys 11 and under, this can be very difficult. It makes it hard for her to do basic things for herself and her family. Her husband is a firefighter and so can’t always be there to help. To get the leaks fixed, she has to go across country to a specialist in Los Angeles. There she can have several tests done and then surgery to close the leak. It is very expensive and even just getting there is very hard for them. They’ve made it work a few times now with help from donations and family. She is so strong, like most with chronic illnesses.

In other news, work is exhausting and I am barely keeping it together. It is so conflicting for me because I LOVE to be working, especially in a job like I am in now, where I am constantly learning so much about my field of interest. This job is just a ‘temp’ job but it has valuable things to teach me. There has been talk of a permanent position, but I feel like I’m being tossed around, unsure of where I’m going or if I will be dropped. It gets a little irritating not to know whether I will have a job in a month or not. However, at the same time I am so tired every day that I know it would probably be better for me physically to stop working again until I finish my graduate degree. The problem is that I love to work, and I really need the experience, because I have very little in my field, and jobs that my degree qualifies me for, also require several years of experience. So I am trying to figure out a middle ground.

Well, thanks for returning and catching up with me, please comment and visit my sister’s page if you can, even if just to say good luck or something.

Love all,

E&O

 

Preparing to Work

I used to work in logistics while active duty in the Air Force, which is likely part of the reason my body is so messed up these days. When I got out of the military I spent about a year home with my kids, then still very small, a newborn and a one year old. Just after my diagnosis with Ehlers-Danlos Syndrome, I got a job as a Secretary in the base medical clinic. Shortly after I started, I was finally able to get some of the initial tests and specialists appointments due to my EDS diagnosis. With each appointment, something new was found. By the time I left that job to move up here, my diagnosis list had grown exponentially. And it seems like they all include the phrase, “you’ll be dealing with this the rest of your life.” Gee. Thanks.

With Ehlers-Danlos, I also deal with Sjogren’s syndrome, dysautonomia, herniated discs, PCOS, Sleep Apnea, Neuropathy, high blood pressure, IBS, and more. Let’s just say, I see about 9 or 10 different specialists, with at least 5 of them on a regular basis.

Going back to work always brings with it certain challenges. I love to work. Being at home these last several months gets me fidgety. Not that I haven’t been busy, I have been studying for my master’s degree. I have so much to do with school, that work will probably incredibly stress me out. I just really like the feeling of working, learning and earning money.

This great opportunity came up for a temporary position where I can learn so much in relation to my degree, and I am excited to start on MONDAY. With extremely short notice, it is a little scary, but I’m just glad I dyed my hair back to a natural color a couple of weeks ago. So now, I need to prepare myself to be able to do everything. I need to prepare for the extra stress on my body, my mind, even less sleep than I get already, only being able to do school work late at night and weekends, and the drain of potentially dealing with dramatic and petty people.

Some of the things I am doing, is getting as far ahead in school as I can right now, and setting a to do list that allows me to check off every assignment, every reading, every lecture that I have to do. This app, Wundlerlist. is working perfectly for me and allows me to make lists of different types of tasks. I have started using it for other tasks I generally forget easily. Lists are extremely useful for someone with brain fog. Also, I am doing all the cleaning and laundry that I can manage until Sunday. Sunday I am going to relax as much as I can, maybe use that day to do as much homework as possible, because Monday is going to be a crazy new schedule.

What do you do to prepare for work or to help with the stress of working or for changes in schedules or activities?

Illness Army: Diagnosis of a Chronic Illness

This post was featured in the Illness Army Series by Cass at Indisposed and Undiagnosed. Please view her blog for some great posts from many suffering from chronic illnesses.

 

Diagnosis of a chronic illness.

At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.

But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.

These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.

Here is a list of 10 things you can probably still do:

  1. You can tell people you love them. You don’t have to be able to do everything for them. You don’t have to be the one to cook or to clean or to fix things around the house. You may not be able to show them love in ways that you used to. But, you can find new ways to show them. And even in the hardest of times, you can always just tell them that you love them.
  2. You can smile encouragingly at others that may be going through a hard time as well. If you see someone getting out of their vehicle, parked in the handicap spot, you can smile at them. Even if they don’t look sick, you know they could be going through so many things, and with all of the other rude people in the world, you can be the one to brighten their day.
  3. You can accept help and support. Others want to be helpful. You may not be the type of person to ask for help easily, but sometimes all people want to do is be able to be there for you, to be able to help in any way possible. Give them that chance every now and then. It will help both of you.
  4. You can follow doctors’ orders. This is a hard one sometimes, but it can make a big difference in your everyday health, pain levels and attitude to do the things the doctors suggest, whether that includes just taking your medications on time, doing exercises, eating healthy, keeping a positive attitude, or just making all appointments.
  5. You can kiss your family. Love them. Kiss them. Hug them. All the time. Don’t hesitate to give them love.
  6. You can laugh. Laughing can be healing. It can improve everyone’s attitudes. It can change your whole day for the better. Laugh whenever you can.
  7. You can live. You can live your life. If something is keeping you from doing something you want to do, find another way to do it. If walking through the store is too much, don’t be afraid to use the motorized carts. If you want to take your kids to the amusement park, plan ahead and do it. You may have to rent a wheelchair or cart, or bring a walker or cane, or take tons of breaks and drink tons of water, but you can do it if you really want to.
  8. You can help others. Even something small, like a dollar in the donation can at the store, or something big like heading a fundraising campaign all make a difference. Sometimes the simplest things can be a great help to someone else. Try doing something once a day that is purely to help someone else. Helping others brings joy.
  9. You can dream. Dreaming gives us a chance to live a different life. You can fly, swim, jump, walk, run, or do anything you want in a dream. You don’t have to wait until you are sleeping. You can close your eyes and just imagine it. See it happening.
  10. You can be happy. Sometimes people think that because you are smiling, that means you aren’t really hurting or sick. They just don’t understand chronic pain. I don’t think anyone could truly understand chronic pain without having it. A life of chronic pain means that our pain tolerance is pretty high, and that sometimes we can still walk and laugh and smile, even though we are actually dealing with some significant pain. We have to. You can live happily if you want to. You can smile and laugh and do what you want. Don’t let the actions and comments of others dictate how you live your life.

Diagnosis of chronic illness is hard. It is hard for the one diagnosed, for the family, and for the doctor. As long as everyone is understanding and supportive, everyone can still live a happy, loving life. You can do things. They may be different things now, but you can do them.

Forgetting to Remember

I’m reading my favorite book series again, as well as listening to the audiobook of another series I read just a few months ago, and watching a TV series that I have  seen numerous times in the past. Not at all the same time of course. I know many that do not read books again, that don’t bother watching the same shows over again. For me though, I must if I want to remember the stories. At least not remembering what happens in these stories means I get to experience the story as if it was the first time.

But books and TV and movies are the only things that I forget. I have missed numerous appointments, forgotten playdates and events. I always forget something important when grocery shopping and even detailed lists don’t always help. It is called “Brain Fog.”  It is a symptom of two of my conditions, Ehlers-Danlos Syndrome (a connective tissue disorder) and Sjogren’s Syndrome (an autoimmune disorder). It causes some memory loss, confusion,  problems with clarity, and that feeling like what you want to say is right behind a door in your brain and you just can’t get it open. I used to be a good writer. It was easy for me and words just flew out without hesitation. But even just this post has taken two days because the words no longer flow. Sometimes, I have to use a thesaurus to try to figure out the right word I want to use.

It helps when people remind me of past events or facts, things that happened, etc., but it doesn’t always make me remember. My spouse has gotten upset numerous times because I forget things that are important to him. In the morning he will tell me something that he needs to do, or ask me to do something for him, and minutes later, I have completely forgot. When I fail, he will tell me that he told me, and I still can’t remember. It seems that I only have clear memories of things that were very significant, and even then, only few specific details, if any.

I look at photos and even with evidence, I still find it very difficult to remember. Lately, I have really been struggling with it, because I don’t want to forget my life. I have considered writing in a journal every day so that I can look back and read about my life, but I forget to write in it.

I wish I could describe how upsetting and scary it is to forget everything, to be unable to bring my thoughts to words, to not be able to explain to my husband or to my kids why I can’t remember details, conversations, or even what day of the week it is.

Sorry, for rambling on about this, but I needed to get it out.