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Archive for the ‘Insomnia’ Category

Well, I gave myself a nice, long hiatus from the blog but I think it’s time to dust off my writing chops and give everyone an update. I am making some minor-leading-up-to-hopefully-major changes and need to get back to tracking them (and how I feel about them).

First off, I have consolidated some of my vitamins and supplements, which is nice since it means fewer pills each day (although the ones I do take seem to just keep getting bigger!). I also started tapering off my anxiety medication today, which, of course, is a source of anxiety in and of itself. I am a little leery about tapering at a time when I’m making lots of changes which I am nervous about, even though I know that it’s better for me in the long run. I am considering starting to see a therapist regularly again, and if so it will be someone new, I think.

My weight is pretty much horrible. After breaking my foot (twice) I just didn’t get back into exercising regularly and tipped over the 250 mark. Aside from my clothes not fitting and feeling ungainly (not to mention stretch marks), it also started to affect my Thyroid levels. That really scared me- my thyroid is one of the few things that felt manageable, so it was a real motivator. I started trying to lose on my own and decided that wasn’t enough, so I joined <popular weight management plan>. I had success (and failure) with it in the past, but the new version seems to fit my needs better. In two weeks I’ve lost 4.2 pounds, with a total weight loss of 11 pounds in six weeks according to the doctor’s scale. A nice start! I know that the first few weeks are usually easy- it’s sticking to it long term when the weight loss slows down that is challenging,

Of course, hubby is behind me 100% and is hoping to ride my coattails to some weight-loss of his own. We also talked it over and agreed to get me a treadmill. The elliptical was aggravating my hips and knees and my doc was not keen on my using it. It means that we will have to finally clean up The Box Room to make space, but that’s something that we’ve been needing to do anyway. That reminds me, I really need to buy a lamp for that room, too. I am looking forward to  walking every day whatever the weather without bugs or humidity- it is finally cooling off here in Florida, but now it’s also getting dark earlier. Do you use a treadmill that you love? Please let me know! I’m looking for good ideas. After some debate I decided not to go with a manual because of my knees- I know it is a better workout and is easier to move, you can use it anywhere (and, of course, cheaper) but if it is too difficult it won’t be used.

Another motivator for weight loss and exercise is to deal with my (newly diagnosed) sleep apnea. I have a pretty severe case. Hubby has been warning me for a while, but a family member was diagnosed with moderate recently and it finally got me to schedule a sleep study. I go back for the next round soon to test out a mask. The sleep study itself wasn’t bad- the tech was a sweetheart and she is currently struggling to identify an autoimmune disease of her own (probably RA). It was like staying in a moderate nice hotel except you are hooked up to a dozen or so wires. I had really weird dreams (about the sleep study of course. Also- I do not recommend reading about werewolves before you fall asleep. Just saying.) Oh, and make sure that you REALLY wash the stuff out of your hair that they use to attach the sensors- that was a gross discovery after I was already halfway to work. I may take a day off next time- I was pretty zonked the next day (they had me up later at night and earlier in the morning than I usually sleep). The results were frighteningly clear, though, that it’s important that I take care of this. I like the idea of being more rested and alert. I think the hardest part is cutting out caffeine for the study- I gave myself a week and a half to slowly taper but still have been fighting headaches and migraines. I am keeping my intake low and may phase it out entirely.

So what else? My flu shot yesterday was a breeze- hardly any soreness, so I hope that it will be another smooth year. My allergy shots are now every other week (unless I get chomped pulling weeds in the yard- then I get a week off). I had an ergonomic evaluation at work and had to make a bunch of changes. I’m just waiting for them to install my keyboard tray, hopefully tomorrow. The split keyboard is taking some getting used to- having it at the proper height should help. I am trying to replicate all the adjustments at home as well so I’m more consistent, and bought myself the same keyboard and an adjustable office chair. I wish I had that of that sooner!

I think that’s more than enough for now. I’ve had some fun trips I may write about and my family will be in town for a few days and I’m really looking forward to seeing them. I hope that you are all as well as possible!

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The weather in Florida is finally cooling off and less humid- I love it! I can wear my sweaters without looking ridiculous and sweating to death. I spent some time weeding over the weekend, just to enjoy the delicious weather. It has also been quite breezy for the last few days, and I love to watch the sun sparkling on the pond.

Of course, cooler weather has its costs, as we all know. My osteoarthritis has been making itself known in my hands and left ankle. Not too bad, but after months of not having to bother with splints and canes I can’t help but be a bit disappointed that such lovely weather makes it harder for me to enjoy it in walks and bike rides. My fall allergies are also kicking in, but it’s still worth every sniffle!

In addition to hardly posting here any more, I haven’t been doing much with social media in general. I check Facebook periodically, but hadn’t been on Twitter in months. I randomly thought of a Twitter friend and logged on to send her a note, only to see that she hasn’t posted in almost two months. In our particular circle, dropping off the radar usually means a bad health turn- I’m hoping that she’s doing well.

I have been keeping up with my Tumblr however- I can look at pretty pictures even if I’m not great at actually communicating with people, lol. I caught up on a backlog of images the other day- please stop by if you have a few minutes (link at the top right there —>). That inspired me to log into Pinterest, which I haven’t done much with in a while either, only to discover that I have 194 followers! I am rather stunned, to say the least.

So what else has been going on in my life? Well, my best friend was visiting for a few days which was wonderful- it was so good to catch up and play cards and eat yummy food together. We only see each other once or twice a year- chatting online is lovely, but not at all the same. He also introduced me to one his oldest friends who lives fairly nearby and we found that we have tonnes in common, so I managed to get a bonus-new-friend out of his visit!

My health has been quite good, overall. I could be sleeping better, but I was like that before the thyroid and RA and what-all, so that’s really nothing new. I’m into the rhythm of my training workshops and enjoying them immensely. I am pacing myself as best I can so that I’m not so gutted by the end of the day, but it does wear on me. I think it’s the main reason for my social silence- I’m an introvert and it takes a huge amount of mental and emotional energy, so I need quiet “me” time to regenerate. We have a couple weekends coming up when we’ll be at hubby’s parents’ house in the woods and I’m hoping that the lovely weather lasts so that I can put up my feet, read, and maybe spot one of the resident foxes.

Oh- one nice surprise happened today: I reached into my purse and found a brownie that I had purchased last week and then forgotten about. I think it is nicer than finding money in your jacket pocket!

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Leslie Rott of Getting Closer to Myself is hosting this month’s Patients for a Moment blog carnival. It’s been a while since I participated in one of these, but my writing inspiration has been dry as of late, so I’m hoping this will give me a jump-start.

Leslie’s question is: What’s your Achilles heel when it comes to illness? We all have that one thing that pushes us over the edge, as far as chronic illness is concerned. What is the one thing, no matter how seemingly minor or severe, that really gets to you?  And what do you do about it?

I feel that I have two. One is something that completely wrecks me emotionally. The other makes managing my health enormously harder.

From early in my illness, before my first diagnosis, the event that really frightened me and helped me realise that something was Really Wrong was when my hair started falling out. With my ups and downs of medications, treatments, and illnesses, few things knock me more for a loop emotionally and psychologically than losing my hair.

Hypothyroidism makes it fall out. My medication to treat my thyroid makes it fall out. Stress makes it fall out. Chemo makes it fall out.

You can see how this is a bit of a concern for me.

With so many factors impacting my hair, I keep a close eye on my hairbrush and clothes, as it’s often the first sign that something is off. This has made me just a bit paranoid about it. I have tried both shorter and longer hair for the thin times, special shampoos, making sure I get enough omega oils, etc. I’m at the mercy of my body and my hair shows it.

There’s not much I can really do about it, except not let it bother me too much. I don’t think that I’m overly obsessed with my appearance, but hair loss triggers something deep in my psyche.

My other Achilles heel is one that affects just about everyone with a chronic condition: sleep.

I’ve written before about my struggles with insomnia and my success with melatonin. While it’s not a 100% fix, it has gone a long way to helping me regulate my sleep.

That said, bad nights happen, and they always seem to bring friends. My mini-vacation last week was interrupted by some poor sleep, which kept me from accomplishing everything I hoped to do. A couple days over the weekend on top of that and I’m dragging today.

A few nights of poor sleep wrecks my mood, I’m more likely to eat comfort foods, and I ache more than usual (which is saying something).

Again, there is little that I can other than what I already do to manage my insomnia- it’s mostly a waiting game. I’m contemplating taking another day off sometime soon just to rest and recoup. *sigh*

So, what are the things that throw you off the tracks?

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Every now and then, I discover that something is Wrong, but I don’t know it. If it’s been this way for, well, pretty much always, so how am I supposed to know that it’s not supposed to work this way?

Case in point: melatonin.

I have dealt with varying intensities of insomnia for, I guess, pretty much always. I do some seriously crazy gyrations to keep it manageable. After a particularly long and nasty bout, I started 3 mg of melatonin each night before bed. It has worked wonders in helping me fall asleep faster, thereby getting more sleep. I wake up groggy and fatigued, but I ALWAYS wake up groggy and fatigued- it took yesterday’s appointment to point out to me that I shouldn’t be that zonked in the morning and we halved my dosage.

Looking back, it’s fairly obvious that the melatonin was doing its job a little too well, but compared to what I experienced before it was still an improvement. How was I to know?

I am super-fortunate to have good doctors who are willing to work with me and ask the questions that I don’t know that I need to ask. That said, I am currently trying to get approval to start a new course of treatment. Usually, communication between any two of my doctors is pretty good- paperwork might take a little longer to get passed around than I’d prefer, but things are otherwise manageable. In this case, I need three docs to sign off, and the third (and still unaccounted-for) is notoriously hard to reach. I am hoping that the planets align in a mystic conjunction sometime next week and we’ll take things from there. I am trying not to get my hopes up too high, but any improvement would be welcome at this point- I’ve been in a holding pattern with my treatment for a while now and just can’t accept that I can’t be at least a little bit better than I am right now.

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Positive: I have started taking melatonin before going to bed. This has gone a LONG way toward dealing with my sleep issues. I fall asleep faster, and if I wake up in the middle of the night, I fall back to sleep faster. I even managed a glorious 9+ hours Saturday night- wow! I am still a long way from waking up refreshed, but quantity of sleep is helping make up for lack of quality.

Neutral: I am trying to hunt down the relaxation recording we used last week. It is Time Out from Stress, Volume One by by Matthew McKay and Patrick Fanning. Unfortunately, it’s pretty old and the only options I can find are cassette tape (!!) or download. The goal is to play it on my stereo while falling asleep. Tapes are fragile at best, so if I can’t find it on CD then I’ll need to buy the download and either burn it to CD or get an MP3 player dock and manually stop it. None of these options are really ideal, but it works *really* well so I think it’s worth the effort. I’m going to purchase the download today so I can listen to it during my lunch break in my office.

Also Neutral: I have a new electric toothbrush. This one is SonicCare and it will take me a little time to adjust. I really feel the vibration and have to be careful not to bump the plastic against my teeth. The smaller brushheads I bought will help. It honestly doesn’t feel like brushing my teeth at all, but my teeth feel very clean afterwards. Supposedly it will lighten my teeth as well, which I doubt will happen unless I give up tea.

Negative: The three middle toes on my left foot have been very stiff and painful the last few days. They appear to be slightly swollen, which is not really a good thing. I am trying a bunch of different things to deal with it, but if it doesn’t improve significantly soon I’ll call my rheumatologist. It makes walking very painful and I hobble.

I had a good, relaxing weekend and played more video games than is good for me- I’m a bit behind on housework because of it. We celebrated hubby’s birthday with his family yesterday and sat on the back deck in the lovely weather for his traditional birthday dinner and cake (lasagne and sour-top cake). His actual birthday is later this week, but they will be travelling.

My goal for the week is to replace my worn-out work shoes, and return the too-small shoes I ordered online. And book plane and hotel tickets for the family reunion in May. And sort out the prescription insurance claim. *sigh*

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*Waves*

I am here but not doing real well. Stopping my allergy meds has had a bigger impact than I ever imagined, and the reactions I’m going to see the doctor tomorrow about are much worse. Add a run of serious insomnia (is there such thing as un-serious insomnia?) and I’m barely functioning. Gave myself a day at home since I really needed to be at work yesterday and tomorrow, but still not sleeping. There are good things, but they’re kind of foggy and out of reach at the moment. I tentatively plan to make myself samosa filling for lunch- it’s a new recipe for me. Wish me luck!

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So, it’s been a whirlwind week, and, (unbelievably enough) so far I’ve DONE IT ALL. While I’m exhausted and run ragged, it was so wonderful to:

  • Hear about innovation in my field from someone who is excited about what we do
  • Attend a conference to network and meet new people
  • Eat delicious Indian food and catch up with good friends in person instead of over the ‘net
  • Have an evening to catch up on housework (yes, this is a good thing!)
  • And coming up today: some quality girl-time and relaxing over sushi!

My dentist appointment went well (just a cleaning) and while my new dental insurance is slightly headache-inducing, it’s still nice to not be paying full price any more!

My doctor’s appointment also went fairly well- we finally have my labs from my last rheum so I can finally cut those ties with a sigh of relief. We are tweaking my treatment and I have a new round of x-rays for my hands and wrists coming up. There is a chance that some of my hand pain is actually osteo, which is not thrilling but not entirely unexpected, either. I’m also scheduling an appointment with an allergist to finally get a full screening and figure out what’s causing my food reaction (every time I think I can rule something out it crops up again).

The hardest part of this week has been the fatigue by far- it looks like my thyroid is, indeed, slightly off which explains the sleep/dream issues. Throw in a dose of insomnia and it’s been a very, very rough week. I’m working to get all these things balanced as best I can so that I can be as well as possible. I picture it a bit like walking across the deck of a ship that is pitching and yawing- you know that every step is going to be tricky and yet very, very important.

The biggest step (what feels like stepping over the side of the ship, to me) is dealing with my anxiety and depression. I’ve been blaming a lot on stress and don’t get me wrong, my job and health are each stress-inducing own its own- combined it’s a double-whammy (and work is even more stressful than usual). But when I catch myself almost bursting into tears in the doctor’s office just considering therapy… yeah, there’s stuff going on that I’m not dealing with particularly well. This seems to recur (or be brought back to my conscious attention) every time I have a new doctor or diagnosis (last round was just before the neuro appointment for the numbness in my hands).

So, yeah. There’s that. I’m not suicidal, but I’m struggling daily. I am aware of and grateful for all the good that’s going on in my life, but sometimes it’s hard to get a grip on- everything is a just a bit nebulous and it’s hard to turn off the broken record running in the back of my brain that says “I’m tired, I hurt” over and over again. I feel my limitations keenly, and my annual performance appraisal once again brought to my attention that I am harder on myself, and have higher expectations for myself, than anyone else is or does. I can give others a break- why can’t I cut myself some slack on occasion? This is going to be the next big step for me- I’m inching closer to it all the time.

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