I have been one of those people with good intentions who have simply said the wrong things, and for that, I’m deeply sorry. I have been there, yet I still don’t know what to say when a friend is in their darkest moments. I need to always remember, I didn’t want to die because I didn’t feel loved, I simply wanted the pain to stop. It helped me to have someone sit with me, hold my hand, and simply be a witness to my pain. It helped me to know that they would help if they could, but that they didn’t try to force this false help on me. I know these things, but it’s very hard to do these things for someone from afar. I can’t simply sit with someone when they are in pain if I can’t be physically with them. Often, when I reach out to someone through texts, or messages, I don’t know what to say after that initial contact. Silence is unacceptable when you are texting. I want them to know that I care, and I simply want to be there for them. I know I can’t fix it, but that doesn’t mean I don’t want to.
Jack Surguy mentions something that I found helpful for me; by accepting that everything changes I can take solace in knowing that these feelings will not last forever. (even if they feel like they will) When I’m am suffering I know that it will end, that is actually my mantra when my emotions are all out of wack, “this will end”. I guess it’s a variation on “this too shall pass”, but that sounds trite to me for some reason. I promise no matter what you are going through right now, good, bad or indifferent, it will change.
I hope you find both of these articles interesting and possibly helpful.
Right now my wrist is killing me, so I need to stop typing, but after the deaths of Anthony Bourdain and Kate Spade, I felt I needed to talk about this, I want to do better. I want my friends (you) to know I love them, that I care, and that I respect their pain. I want them to know this every day, not just times like these.
* photo by W. Holcombe. A red yucca plant viewed while lying down looking at the sky. I found it stunning.
This will just be a short update on what’s going on with me and Akathisia. (literally meaning “inability to sit”). I found a great article explaining this complex side effect to various psychotropic drugs including antidepressants and antipsycotics. If you’re interested: Akathisia by the RxISK Medical Team.
The turmoil I have experienced with akathisia has been unbelievable. The need to move has been overwhelming. I can’t express how intense this sensation has been, it was consuming every part of my life. You can read more about my experience with this side effect in my post “I can’t be still”.
I saw my psychiatrist last week and she took away one of the new medications, but kept me on an antidepressant that often helps with akathisia. I’m happy to say that I’m much, much better. I feel that sitting still is such a luxury.
Finally after a more than a month the restlessness is easing. I still feel figetty and just want to shift and move a bit, but I no longer feel the need to pace until I drop, with still the need to move. My back is still very tense. The muscles have been tense for over a month, they simply do not want to settle. I’m in a quite a bit of pain because of it. I think I may need physical therapy to help calm it down. I’ll be seeing my primary care doctor next Friday for my 6 month visit, I’ll see what she has to say then.
How about side effects with the new medication? After all, can an drug actually cause no side effects? I’m not sure it’s the medication that’s causing it but I’m having a hard time with my cognitive function. That, sounds like I’m brain dead, I promise I’m not, I’m just having a hard time thinking. I have brain fog and I’m very easily distracted, or my short term memory is shot….I’m not sure which, after all my brain is not thinking clearly. Hopefully this is a side effect that gets better. If not, we may be on the search for a new antidepressant. sigh.
I promised this would be short, I’m keeping my promise.
I’m leaving you with a few articles about Akathisia that I found useful during all of this. I learned so much. I’m surprised I haven’t heard of this before.
During my last post I told how I planned to do some journal posts during the month of January. I planned on these being open and honest reviews of my days, then I realized I wasn’t totally honest while writing my last journal entry. I talked about the good things, the things I accomplished that day, but I glossed over the fact that I had a vertigo attack. I just slightly mentioned it, instead of saying how horrible it was. How it stopped me dead in my tracks. How I was stuck in a chair for over 2 hours not being able to focus on anything and being so upset that the day was ruined. (as you know now I decided to risk things and go out anyway, very unlike what I normally do, normally I stick very close to home after having a vertigo attack, but I was determined) During the attack I was scared. It is a very tough thing to deal with. After the attack, I’was exhausted and had to rest for a while before I could do anything else. Everything I did I pushed through. That doesn’t mean it wasn’t a good day, it did turn out to be a very good day. I simply glossed over the rough parts when I was journaling about it.
Well, day before yesterday was a good day. Yesterday I paid for it, but I couldn’t give in and just rest all day, I had my yearly physical I had to go to. I ached all over and just wanted to stay in bed all day, but I had to go to the doctor and have her poke me a bit and talk about my blood work. I hate going for my physical, often they find something else wrong, who wants to go find out something else is wrong? This time I didn’t find out anything else is wrong. Yay. My cholesterol is still high. The good cholesterol is in good shape, but the bad and total are not in good shape and my triglycerides are too high, as usual. We discussed my diet. First she told me that I’ve lost weight. SIX pounds! Woot! Yes I’m being sarcastic. She was trying to be supportive, but really, 6 pounds in a year, is not good. (She had no idea I’d been trying to lose around 40lbs the whole year.) So we discussed how I could get my weight down and my cholesterol in better shape. I have a friend who has been on the Ketogenic diet for a while, so I asked about that before she suggested anything and she said it was a good diet for what I need. She said it is good for people who have to be more sedentary. The Ketogenic diet is very low in carbs and high in fat. This is very different than I am used to eating. I don’t go crazy with carbs usually, so I don’t think that is going to be too big of an issue, however increasing the fat is going to be odd. It’s just so counterintuitive to what I’ve always done. As soon as I can wrap my head around this and all the sweets from the holidays are out of the house, I’ll start the diet. wish me luck.
Today I’m still achey. I’ve had a migraine all day. I had an appointment with my therapist this morning. That’s going well, I think. Some days I wonder why I’m spending so much money to just sit in there and talk, am I really that hard up for friends? By that I mean that on some days I feel like all we talk about is stuff you’d talk about with your girlfriend. Like, I found out who cuts her hair….now my hair finally has a good cut! But if I think about it, most everything we talk about comes around to something that could benefit me in the long run. So it’s all good.
On the way home today we stopped off to buy more yarn. Yes, I’m really enjoying my Knifty Knitter, so much so I think I’m going to finish my first scarf in a week….or less. I’m thrilled that when I’m all achey and feel cruddy I can still sit and “knit”. I feel productive. I’ve always wanted to make baby blankets for charity, now I might be able to do that. I’m looking into it.
Right now everything is taking much longer than it should. But that’s normal for me. Right now I’m going on 2 hours for writing this post, and I know it will go longer. I keep wording things wrong, can’t think of words, can’t spell, or I simply get stuck. At this moment I hurt too much to think and I don’t want to try any more….it’s just too hard.
It’s very unfortunate that cannibus is illegal in most states. I’ve used it to help me in the past, but it is illegal in my state. I’ve tried cannibus infused coconut oil to help with the pain and sleep, it is amazing for that. I’ve used it via a vape pen during a vertigo attack and it stopped me from throwing up and slowed the vertigo. What I wouldn’t give for it to be legal. I’m having a hard time recently with vertigo and pain, it just makes me think about this more and more.
I think that’s all for my journal entry today. I didn’t mention that I had a vertigo attack yesterday and a small one today, but if I mentioned every one we would be talking about vertigo a lot. However, I think I should mention it every time during these journal entries to bring attention to how often I really do have vertigo.
I hope everyone has a safe and happy New Years Eve celebration!!
Tomorrow in my mother’s birthday. It’s always a bittersweet day for me. I celebrate the day of her birth, but I’m sad she is no longer with us to celebrate. It’s always an emotional way to start the year.
On June 30th my father died. Yesterday was his birthday. I would have thought that I would be filled with sad emotions, instead I’ve been filled with a renewed lust for life. All we know really is life and death, I’m thinking that his death made me realize just how lucky I am to be alive. I may have a lot of hurdles to jump over every day, but I’m alive and I will thrive.
Often when you have a chronic illness life becomes so hard we don’t care to live any longer. I know I’ve been suicidal, more often I’ve simply felt that I didn’t want to wake up. I simply didn’t want to exist any more, it was just too hard. Since my father’s death, I’ve realized that I’ve been wasting what life I’ve been given. Yes, I’m sick and I can’t do a lot of things that a normal person can do, but there are a lot of things I can do, I just need to figure out my limits and live within those without wishing for things to be different. Wishing for everything to be different makes life miserable.
Losing a parent can make you reevaluate your life. For me it made me realize I haven’t been appreciating my life. I realize I want to live. I may not enjoy every moment of my life, my life may be hard, but it’s my life and I’m going to live it!
During this holiday season, I wish you all a life well lived.
**all images on Picnic With Ants created and owned by Wendy Holcombe unless otherwise noted.
Today’s #HAWMC prompt is: First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!
What drives me to write about my health? Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.
I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with. I’ve found support through my blog and I hope I give the same.
I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.
I also have other illnesses that I mention along the way. Like Degenerative Disc, Hypothyroidism and others. I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.
What drives me is my illnesses and my love for others. My compassion for others and myself. I write because it helps me and in turn I hope it helps others.
What do I want others to know about my conditions and activism?
Well there’s an awful lot to know about my conditions, as there is more than one condition to cover. I’ll pick just talk and see what comes out.
Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it. The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus. If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease. The progression of the disease can be different for different people. It is normally only in one ear, it can attack both ears. I have it in both ears. It used to be thought that the disease would “burn” itself out. As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo. As can be seen with me that is not necessarily the case. I am deaf now and still have vertigo often. There is not sign of a “burn out” for me. I do want everyone to know that this disease does not progress the same for everyone. just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will. I’m in a very small minority.
Bipolar Disorder – I want people to know that people aren’t crazy when they have this. Being Bipolar doesn’t stop me from living a normal life. I want people to know that not everyone is the same with this too. I am lucky. With medication and therapy I am doing very well, and have been for years. Others are not so lucky. Medication does not work for everyone. Everyone with this disorder has to work hard.
Chronic Migraines – I want people to know that migraines are not just a headache. They are so much more than that. They make you sick all over. Having a migraine for more days during the month than not can put a huge damper on life.
It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.
This is some of what I want you to know about me and my illnesses and why I write. I hope you will join me on this month long journey. Wish me luck that I can accomplish this goal of posting every day this month!
I keep being told by my therapist that I need friends. People I can spend time with, not just friends I text, email, message, blog with….. She wants me to have local friends. We’ve lived in this area for over 2 years and I don’t really know anyone.
My question for all of you is, How do I make friends?
I’m chronically ill, I can’t drive, I don’t go anywhere without my husband, I have a very hard time hearing in public places….
Where do I meet people who are willing to get to know me through all of those obstacles?
I don’t go to church. I did look for a Buddhist temple in the area and there are a couple of places, but they do not practice the type of Buddhism I do. I don’t think I’d feel comfortable there. It’d be like a Fundamentalist trying to go to a Catholic church, they are both Christians, but they are very different. (well it might not be that different)
I don’t work, so I won’t meet people there.
I don’t have kids so I won’t be meeting people through my kids.
I looked for a support group where I’d fit in, I can’t find anything. Before you suggest it, no I’m not going to start one, I would not be able to be reliable enough to do so.
I really think it would be best if I met people who have chronic illnesses, I think they would be more understanding of my “eccentricities” 🙂
My husband works in a small office where there isn’t anyone to really become friendly with.
I’ve met the neighbors on each side of me, one is an elderly couple who prefer to keep to themselves, the other is a family who are always busy. We don’t really fit in with either.
So, any ideas? I’m not adverse to meeting people, I just don’t know how.
My biggest problems are: I can’t go out alone, can’t drive, and my hearing issues.
Really, I’m looking for suggestions. Any body got any??
This past Saturday was our 12th anniversary. With my husband being my caregiver it is hard to find days where we can find time for just us without my illnesses playing a major part. Saturday was one of those rare days.
Recently I’ve been feeling pretty darn good. I have my days of not feeling well, my balance will be way off, and I’ll topple a lot, but for the most part I haven’t had any major vertigo attacks. That’s huge for me. I had a few days last week where I just didn’t feel good. I was afraid I wouldn’t be able to spend our anniversary out of my recliner. But I was surprised. I woke up feeling good, so we headed out for a day of adventure.
We had a few plans for the day. Stuart asked me what I wanted to eat on our special day and I wanted crab legs. So we found this little restaurant that is on a small lake. I love being close to water. I was such a happy girl when we were sitting there on the water I teared up. After our wonderful lunch we walked around the lake and watched the ducks. We took pictures and just enjoyed ourselves. We then went out of frozen yogurt. The whole day we flirted like teenagers. It was such a good day, but it wasn’t over.
We stayed in a hotel for the night. It had a big whirlpool tub, and was in the ritzy part of town. We decided not to go out for dinner we instead went to Whole Foods and loaded up on the Salad bar and went back to our room. That may not sound romantic but it was so nice to just curl up in bed with my hubby eating salad. 🙂
It was a very romantic day. We had planned to do more on Sunday but we were both exhausted from our anniversary celebration. We came home and just vegged. I slept sooo much. On Monday I was still paying for our little adventure and felt like I was catching a cold, but by Tuesday I was feeling well again. Which was great timing as Stuart had Tuesday off and we decided to go back to the boardwalk and just walk around and watch the ducks. We had ice cream outside enjoying the beautiful weather. It was a very relaxing afternoon. Sometimes even though I know I’ll pay the price later the price is worth it.
It is so very important to take the time to spend as much “us” time with your significant other as you can. My husband is my caregiver. Even when I’m too sick for days like Saturday (and Tuesday), we try to take some time for us. We may curl up and watch a movie together, or have a special dinner, just sit and talk…anything that makes things special. One big thing we do a lot is flirt with each other a lot. I am not able to follow through on a lot of my overtures but it doesn’t matter, he knows I want to. That is what is important. It’s important that even though we can’t be as intimate as we’d like as often as we’d like that we let each other know we’d like to, but it’s okay that we don’t. It’s okay that we just cuddle, that we are with each other, that we are so in love that not being able to have sex as much as we’d like isn’t going to come between us. And it makes those special nights in a hotel all the more special. 😉
I want to tell you a little about something that is going on with me. This is very difficult to talk about. Admitting this is happening to me is difficult. Talking about it is difficult. It shouldn’t be this difficult, but it is.
You may remember back in February I was hospitalized for having seizures and it was then determined that I do not have epilepsy. It was thought that a medication I was on may have caused the seizures but that isn’t the case, I’ve had more seizures since being off the medication. (some people prefer to call these seizures events or episodes instead of seizures since the brain is not firing like it does during a true seizure.) I do not have them regularly, and I haven’t had many, but I do still have them.
“A seizure is a temporary loss of control, often with abnormal movements, unconsciousness, or both. Epileptic seizures are caused by sudden abnormal electrical discharges in the brain. Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges. They are stress-related or “emotional.” They are sometimes called pseudoseizures, but “psychogenic non-epileptic seizures” (PNES) is now the preferred term.” -1
The type of seizures I get are psychogenic non-epileptic seizures (PNES). By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder called a conversion disorder.-1 “For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.”(Kelley)-1
Since many people with epilepsy have normal reading with an EEG, PNES is diagnosed by an EEG with video monitoring which has to be read by a specialist in epilepsy. Diagnosis this way is nearly 100% accurate. There are about 10% of patients with epilepsy who also have PNES.
“PNES, unlike epileptic seizures, are not the result of a physical brain disease. Rather, they are emotional, stress-induced, and result from traumatic psychological experiences, sometimes from the forgotten past. It is well known that emotional or psychological stresses can produce physical reactions in people with no physical illness. For example, everyone has blushed in embarrassment or been nervous and anxious as part of a “stage fright” reaction. Today, we also know that more extreme emotional stresses can actually cause physical illnesses.”-1
As my psychiatrist said, my brain just gets to the point where it decides it can’t handle any more and says screw it. I’m seeing a psychiatrist for medication to help with anxiety and my normal bipolar stuff, and whatever else comes up. I’m seeing a psychologist for therapy to try to figure out what is causing this. I’m not going to discuss what is causing my seizures because frankly we aren’t exactly sure yet.
Today I wanted to make people aware that psychogenic non-epileptic seizures are real. People cannot control them. People often refuse to accept the diagnosis because of the stigma related to it. Family and often physicians do not understand that the patient cannot control what is happening to them. I wanted you to know that you know someone who is going through this, and I have no control over it. I also wanted people to know they are not as rare as you may think, “in the general population the prevalence rate is 2-33 per 100, 000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia”.-2
Hello. My name is Wendy. I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease. Unless something amazing happens, they are not going to go away. Sometimes I feel I need to make this statement before anyone speaks to me.
Recently I was asked a few things about my health. This was not by people who see me often, or have much knowledge about my illnesses. This is how I handled a few of the questions, some of it was good, some not so good.
Have you tried yoga? It can really help your balance. I used to do yoga regularly until the Meniere’s Disease got so bad and I ended up on my face during a class. It can only help your balance if you have some to start with! After having a disease ruin your balance system, yoga isn’t possible. (ok, this may have been a bit harsh, and some people with Meniere’s may get some help from yoga, I don’t know. However, anyone as advanced as I am, who has been through Vestibular Therapy and still has balance issues all the time, cannot do yoga. And if you have had a disease the compromises your balance for as long as I have, do you not think I would have heard about YOGA by now?)
I heard about these positions you can get in that will make vertigo go away. Why can’t you just do that? There are maneuvers you can do to help certain types of vertigo. However, there are numerous causes for vertigo and what causes mine can not be helped by those maneuvers. (do people think my doctors would just let me suffer this much if it was so simple to “cure” my vertigo?)
Do you think this could have been caused by all the drugs back when you were younger? Okay, this one caught me off guard. I thought, what the heck is she talking about? I may have experimented a little when I was younger, but she wouldn’t have known that. I must have looked shocked and said,“nooooo?”She then explained, “All those psychiatric drugs they put you on.”I was shocked. How could someone think that the treatment I received for my mental illness caused me to get chronically ill? I’m sure I looked shocked when I answered,“No.”“Well I was thinking….” I stopped and said,“I know many people with Meniere’s disease and really we have nothing in common except some of us have relatives with the same disease. They have no idea what causes this.”“That’s good to hear, I’ve been so worried about it.” “Well there is no need to worry about that. The medication I’ve taken for my Bipolar did not cause me to get ill.” AHHH!
This last question has continued to plague me. Is this one of the reasons people do not seek help for their mental illness, they are afraid of what side effects the medications may cause?
I have Bipolar I disorder. I take medication for it. I also try to keep a good sleep schedule, eat well, keep my stress controlled, and see a therapist…there is a lot more to taking care of yourself when you have a mental illness than just taking your medication.
I have never been afraid of taking my medication. Each time my medication is changed my doctor and I talk about it. We discuss exactly what it is supposed to do, any side effects, if it will react with any other medications I’m on at the time, and if the side effects are worth it. I don’t just take a medication not knowing what it will do to me. No one should do that. If your doctor does not automatically discuss these things with you make sure you ask BEFORE you fill your prescription and start taking a medication you are not familiar with. I also advise you to read the information the pharmacist gives you about your new medication just in case your doctor forgot something. It happens, doctors are human too.
I have decided to take a medication even though I knew there was a chance it could cause damage to my thyroid. It did. I now have to be on medication for hypothyroidism. Am I upset that the medication caused this side effect. No. I went into this with my eyes wide open. At the time there were very few medications to treat Bipolar I and I decided the pay off from the drug was worth the side effect that it may cause. I’m still happy I decided to take that medication and have those years as a stable person. Truthfully, I would take it again today if that was the only medication that would keep me stable.
I would hate to think that people would not seek out treatment for any illness because they are afraid of the side effects of the medication they might be put on. Become informed. Know what the medications will do. Know how it will help you and the side effects it may cause, you decide if it is the right medication for you.
Many of you may be thinking that there are times that a certain side effect is unknown. You are right. There are many stories of someone who took a medication and had a severe reaction. There are stories of people taking a medication and years later they find out that it hurt them in ways they never knew it could. These stories are not typical. We simply can’t live in fear and not be treated because of the “what ifs”.
I can tell you, if I hadn’t been treated for my Bipolar for all these years, my life would be totally different, and not in a good way. I can almost tell you for certainty that I would not be alive to write this post. I will never regret taking the medications that helped save my life.