It’s 1:29am and I can’t sleep. I hurt all over, and I’ve been having vertigo and migraines with all the symptoms that go with it.
I’m posting from my phone so who knows how this will turn out. I doubt I’ll be able to edit it very well. I apologise for errors ahead of time.
It’s been over 2 months now since Stuart got laid off, I’m not tired of him, but I do miss my private time. However, I’ve been having such an increase in symptoms it’s probably best that I’m not alone all that much.
I’m tired. So very tired.
I’ve had a non-stop migraine for almost two months now and I, at least partially, blame my doctor. I had a tele-health appointment with her the beginning of May, right when we were increasing my Spravato treatments back up to two a week and I had every reason to believe that my migraines would get better again. They didn’t, they got worse, and I have no rescue medication that works. I got in touch with her less than two weeks after my appointment to ask for help and she said I need another appointment, so I’ve been waiting two month! The soonest they could get me in was July 17th. I’m finally going to see her next Friday. Now I have a Status Migraine, that’s a bitch to treat. I don’t know if this would have happened anyway, but I feel if I’m in this kind of situation she needs to take care of her patient, so I’m searching for a new doctor. I’m tired of her never being available when I need her.
I had the freakiest, thing happen to me earlier. I was sitting on the toilet and it felt like the toilet started moving under me. Normally when I have vertigo it feels like I’m moving, or the whole room is swaying/rocking..ect. it has never felt like the seat under me is wiggling. Soon I did feel like I was moving, well, it felt like my brain was. It still does just a little, much more if I move my head. I’m so grateful I have an amazing husband who will help me off the toilet and to the bed when things like this happen.
When I got to the bed I could literally feel my brain trying to spin in my head. My eyes weren’t all the way spinning, my vision was a little off, but not like it can be. I rarely have that sensation any more, thank goodness, it’s really hard not to throw up when you see the world spinning around you. It’s hard enough as it is. Right now, When I move my head it feel as if my brain rotates and moves around in my head. My internal gyroscope doesn’t work. My vision spins for a few seconds, and I can feel bile coming up my throat. The only hope for sleep is to lie perfectly still and hope I don’t turn over in my sleep until this has passed.
Now it’s after 2am, I don’t know if the pain will allow me to sleep, but I’m going to try.
When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day. With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick. Other days I can get it all together and don’t look sick at all. It’s those days that confuse people.
I’ve learned that it takes me longer to do things than it does the average human. There are many days that I can’t accomplish anything, but let’s not talk about those days. I want to talk to you about the days I am able to do a few things. The days I appear normal.
Yesterday I started to do the dishes. The dishwasher needed to be emptied, and there were dirties that needed to go in. For a normal person this would just take a few minutes. I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest. I came back after a bit and started on the bottom, I put away the silverware, and needed a rest. After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher. While loading it up I took 2 breaks. Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher. At this point all I could do was make myself a cup of tea. This was the end of my ability to do chores for the day. No one would think that doing the dishes took 3 hours out of my day. I must say that I’m okay with this. I’m grateful I can do the dishes at all. I only wish I could do them every day.
Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time. Boy was I wrong. I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much. I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy. Very dizzy. Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here. (the reason I am dirty a lot of the time 😉 Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours. Luckily I did have the DVR set for my show. I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it. But how many people do you know that can’t get a bath done in an hour?
Then there are days when I seem to be able to go non-stop. Recently I had a weekend like that. We went to a wedding a couple of weeks ago. On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm. The wedding didn’t actually get under way until about 4pm. Luckily, I was just sitting talking with people. After the wedding, we had the reception to attend. On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband. Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving (know that all I did was sit and talk with people). We went back to our hotel, changed and were off to dinner. We were finally back to our hotel around 9pm. I was going full out, all day long. Boy was I beyond tired. Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day. (I did find out that my lip reading skills have improved dramatically.) Of course, I couldn’t sleep due to painsomnia (insomnia due to pain). There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was. This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me. It took a week or more to recover fully. For a “normal” person they could have made the trip in one day. It’s about a 3 hour ride (I can’t drive). We could have gone down for the wedding and come back that night, if I were a “normal” person. Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home. I had a lot of support for this trip or I never would have been able to make it. My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently. The specialist I’ve been seeing for my back called in extra meds for me for the weekend. If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself. I will be forever grateful. While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon. She then came back to our hotel and ironed hubby’s shirt. Without this help, I don’t know if I could have made it.
To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay. We normally appreciate things much more than “normal” people. We care deeply. We can still live a full life, it’s just different than a “normal’s” life. and that’s more than okay.
I’m sorry. I haven’t been paying attention to my blog and I haven’t been supporting others. I’m sure you all think I’ve dropped off the earth….maybe not, maybe it’s just me.
I mentioned in a previous post that I hurt my back. Um, kinda. I started having back spasms as side effects to a medication back in May, then the med was changed and I was put on another that caused akathisia (the need to move – like restless leg all over), this caused my muscles to tighten even more. I saw my GP about it and she gave me muscle relaxants. It didn’t get better. I was sent to PT. It didn’t get better. I was put in steroids, they seemed to help some. I was sent to a specialist, he gave me lidocaine injections in my back. I was much worse the next day. After a couple of days of that, I was once again put on steroids. This time I think I’m having every negative side effect you can have from a short dose of steroids.
These side effects are hell. (they are getting better) My moods, oh my goodness. I’m so sad, I am crying all the time. I’m scared, I keep having feelings of intense fear wash over me. Two nights ago, I was convinced I was dying. I’ve been having slow moving vertigo, I barely see it moving, but I feel like I’m moving, and I can’t walk without help. My head has been killing me. Extreme nausea has plagued me. I can’t sleep. and I’ve had 2 seizures. Oh, let’s just say, I’m going through a rough time. But don’t worry, it’s getting better. I know my mood swings are from the steroids, but it’s hard to deal with. Poor hubby.
Speaking of hubby, he has worked from home the past 3 days. He hasn’t wanted to leave my side. I’m so very grateful to have such a supportive and caring spouse. He makes me want to be a better person.
After all of this, my back still hurts. I still have 2 days of steroids left, and I have exercises to do, hopefully that will get me on the road to recovery. To be clear, according to x-rays I have no damage to my bones, it’s all muscular. The muscles simply will not relax and they spasm often. I have not had an MRI. I cannot have an MRI because of my cochlear implants. If they need more imaging it will have to be a CT scan. We’ll cross that bridge if it comes.
Forgive me this post of self pity. I will try to post more often, and get out there and support others too. I miss you.
Friday was a normal day. I didn’t have a lot to do (bored). I’d been sitting in my chair reading when I got up to let our dog out. I got about a two feet and I ran into this:
again…..and did this
About 4, or was it 5, years ago, I tripped on my walker and broke my foot. At least that time I was using it. On Friday it was just sitting beside me. I haven’t needed it lately, but I keep it close, just in case. A little too close to my foot as it turns out.
It hurt, like it does when you stub your toe, I didn’t think it was broken. It just didn’t hurt enough. I had this discussion with another chronically ill friend and she said the same thing about when she broke her foot. It really speaks volumes as to how differently we feel pain.
Stuart talked me in to going to Urgent Care to get it checked out since I’d broken it before, and was told it would be easier to break again, I decided it’d probably be a good idea. (I hate to say it, but knowing we have met our out of pocket maximum for the year, made it an easier decision.) I hobbled in Urgent Care, got checked in and was seen right away. I had an x-ray and the attending physician said my x-ray showed irregularities. She couldn’t tell if what she was seeing was all from the last break or if it was a new break. She thought it was broken, but a radiologist needed to read it to be certain. I was sent home with The Boot, and the radiologist would call on Monday. They did, and it is broken.
This time it’s not as bad as it was the first time. I didn’t twist my ankle or anything like that. I’ll be in the boot for 4 weeks instead of 12. It’s hot and heavy, but it is taking good care of my broken foot, for that I love my boot.
On the other end, I started physical therapy (PT) for my back last week. What’s wrong with my back you ask? I’m not exactly sure. I did fall, so I might have wrenched it then. (that was over a month ago). I had severe akathisia (the need to keep moving) for over a month. This caused me to constantly tense my muscles. It’s possible, my back just never calmed down. I also have arthritis in my neck, this is causing a lot of pain recently. PT will hopefully help that as well.
So far, I feel like the PT has been aggravating my arthritis. I discussed this with my physical therapist yesterday and he did a few things differently. Hopefully, these changes will improve the pain and still help me get stronger. If not, I know I can talk with him about it and we will work to make it better, to make me better. I’m so impressed by this office. Appointments are supposed to an hour long. As most of us know, that normally means you are actually seen about 45 minutes, sometimes less. My normal amount of time at this office is 1 hour 15 mins. Yesterday I was there for an hour and a half. I hope I get the results I’m looking for, it won’t be for lack of trying.
I’m happy to say that my migraines are still much, much better. I’ve had a few, but nothing like I was. I haven’t had a lot of vertigo. This past week I’ve had a few times where I’ve had really fast spins that last for just a couple of seconds, or very slow movement that I can barely see (but it makes me very nauseous). Overall, I’m feeling healthier than I have in years. I don’t know how long this will last, so I’m trying hard to make the most of this time.
I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.
Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..
I didn’t expect to have vertigo almost all day the day before surgery.
I didn’t expect to have vertigo in the waiting room right before surgery.
I didn’t expect the intense pain after my surgery. During surgery the back injury that just got better was aggravated. I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain. To make it worse, I couldn’t move to make the back and sciatic any better. I was stuck, in so much pain. We could not get this pain under control. I have issues with pain medication. Everything makes me hypersensitive, I feel like things are on me, it makes me itchy. So I was only prescribed Tylenol and Tramadol. This didn’t do it. They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain. Luckily, it didn’t last long. I decided I’d rather itch. They tried Hydrocodone. nothing. I don’t know what all was tried. at 2am they tried Toradol, this is a NSAID given by IV or injection. I’ve had it for my migraines before. This finally worked. Probably in conjunction with everything else. I finally fell asleep. Only to be awoken at 4am to have my blood drawn. Then at 6am for something and at 7am because shifts changed….it was an exhausting. But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.
I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.
I did get out of bed the first day and walk a little, I was told I did great. (the intense pain hadn’t started yet) I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy. I didn’t expect to have a vertigo that afternoon. During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist. No afternoon PT, no going home. They also had to make sure my pain was under control before I went home. It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery. (ugly thing) I didn’t expect to HAVE to sleep in a chair for many nights after I got home. I didn’t expect to cry from the pain so much, after my surgery.
I didn’t expect my sister to come and help. I am very grateful. I didn’t expect it to be so hard for Stuart to stand back and allow someone to help. He said he’s just used to doing it, it’s hard to ask someone else to do things. Yep, I know that feeling. It’s very hard to ask others to do things. Especially, for me to ask for the little things. It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect. Yep, I’m having a hard time asking for things too. I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me. It makes me feel so helpless. Eh…I guess I am. (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)
I didn’t expect to have vertigo every day since my surgery.
I didn’t expect for Stuart to have to take off a second week from work. (I think he got in a little bit of work the second week…but not much.)
I didn’t expect…..
I didn’t expect to have a death in the family two days after my surgery. It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad. He was young, in his late thirties. He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead. The autopsy has been inconclusive. There are still test out, but they don’t expect to find anything. They will probably have no idea why he died. They also found out a lot about him that his wife had no idea about, it is very, very sad. It also makes you think…..and think….
I didn’t expect for one of my father’s friends to die the next day. I knew him growing up. He worked with my father, they used to Barbeque (or barbecue in some parts) together. When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good. We used to have picnics and things over at his farm. He let me touch my first cow, it was much softer than I thought it would be. He was 12 years younger than my father. As you get older you see more and more friends die, I wonder if my father is having a hard time with this? I’ve noticed he goes to a lot of funerals. That’s a subject that would be hard for me to broach with him.
I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st. She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died. I’m in complete in shock about her death. I keep looking for updates to her blog in my email. I look for her to chat with me on Facebook. I heard from her in some way nearly every day. It may not have been personally, but I always knew she was there. Now she’s not. Just like that….suddenly her voice is gone. Her thoughts are not in my life any more. Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family. We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts. The one thing we disagreed the most about was our feelings about the chef Alton Brown. She hated him, I love him…..it was quite a debate on one of her post! I will miss you Laurie. All the support and love you gave me, and our friendly banter. May you be pain-free in a nice warm place near the ocean taking a walk with your father.
I didn’t expect my dearest friend’s mother to die this week. She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months. I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long. I loved Kathy very much. I wanted so much to be there to help care for her. I wanted to be there for my friend and help her through this difficult time. Now I can’t be there for her again. The death of her mother is going to devastate my friend. She was closer to her than anyone. They talked daily. They were best friends. Her mother’s illness took a toll on the family. Yes, she will have a lot of people around her, but I know she needs her best friend. It is extremely hard not to be able to go. I am so tired of feeling useless. But this should not be about me, it should be about Kathy. She was such a strong woman. A single mother, raising 3 children mostly by herself. She was so generous and kind. She worked so hard and hard and hard….and she gave and gave and gave. This probably gave her more joy, but from my view I wish she had been able to take more time for her. She was just about to retire when she got sick. I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children. Please don’t put off living until tomorrow. Kathy was one of the best people I knew. That sums it up pretty well.
I didn’t expect writing this post would make me feel better.
Trying to hold on to the good days, thinking life will stay that way forever is fruitless. It will change. And it has.
My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.
I had my hip injection on September 11th. We got Kiki that evening. It was an exciting day. I expected to be sore that night. I expected to possibly be sore the next day, but would probably feel better….and continue to get better. That didn’t happen.
I’m not sure if the shot did anything. I don’t think so. However. on the night of September the 12th, I got up and went to the bathroom. I started to sit on the toilet and lost my footing and fell, hard, onto the seat. My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it. The big hurt was my hip. OW! The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN! I have been in constant pain in this areas since that night. The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8. I had Stuart give me a Toradol injection. This really helped. Toradol is a nonsteroidal anti-inflammatory drug. (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.) Since this worked to take most of the pain away I was sure I hadn’t broken anything. I was also hoping the cortisone shot would kick in and help. So I waited….
The cortisone didn’t help. I went back to the doctor on the 18th. She was disheartened. She suspects that my pain may be coming from my spine, and maybe also from my hip. She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor. (she is actually a PA in the office, she wants me to see a specific doctor in the practice). I will have the CT scan on Friday. (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.) I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.
How am I handling all of this? Some days very well. Some days not well at all.
I have had a hard time not getting really stressed out about this. I’ve been creating “what if” stories in my head. My mother started having back problems in her 50’s and it really changed her life. She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back. There are many reasons I believe this, I won’t get into them here. What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing. This is not a mindful thing to do. It does NOT make things better. It makes it worse. The stress builds, and everything spirals out of control. When I think like this I can feel the depression creeping up over me. It is oppressive.
Then I try to be more mindful. Being mindful is hard. It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better. I’m trying. First, I am trying hard to stay present. I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios. I could have something easily fixable. If I have something that is more difficult to deal with, I’ll deal with it. Either way, I don’t have any idea, so stop speculating. Keep my mind in the present, right here, right now. That is the least stressful thing I can do.
I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her. I can’t even feed her. I can’t take her out. I can’t care for her at all. Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki. We would not have adopted Kiki at this time. Does he regret it? No. But would he have done it? No. So I have been having that emotion that simply doesn’t help…..guilt. I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs. I can’t focus time on training her. I feel guilt. Ugh! useless!
Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do. Haven’t figured all of that out exactly, but I will. Yes, this is not how I planned for things to go, so I need to change my plans. I have been playing with Kiki more indoors as much as possible. She will bring me a toy and I will throw it. She brings it back and drops it in my hand. (how cute it that?) I have taught her to sit before I’ll throw it again. (really, she was already doing that most of the time.) I will hide it and have her find it. (I think this is a newer thing for her!) So we are working on some training. It’s just different from I planned.
Then I go back again to how I feel about my body, and what is happening. My Meniere’s is acting up big time! I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious. The pain will not allow me to sleep or rest enough. I can’t relax. Also, it is Rag Weed season. I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion. My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room. When the noise started I kept asking Stuart, “what is that noise?” He looked at me funny. I said, “You don’t hear it do you?” I realized it was just me…dang. Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point. I’ve never had that happen before. I’ve had very loud tinnitus, but I’ve never had that it that loud for that long. It continued to be loud for the whole night but it did dial down a bit.
I hate to say it but, I’m just one big vertigo attack. I try to control them but that is exhausting too. Most of the time I’m spinning at least a little bit. I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy! I keep focusing on my breath…grateful I am still breathing. Then I laugh…they say breathe, take a deep breath..ect. It’s not like we are going to stop breathing. It is something we do. Do you ever really focus on your breath? Really think about it? If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect. So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath. How it works. I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even. and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine. It is working pretty darn good. It’s my body. I like it. I love me. I’m at peace with it. I accept it the way it is.
Now that is mindfulness. That is what paying attention to your breath is supposed to be…..wow. I feel better, right now. I know this isn’t easy. I’ll be working on being mindful forever.