“Healing is an art. It takes time. It takes practice. It takes love.”
Being present, being in the moment can be difficult when in physical pain. To transcend that barrier; to be aware of breath and heartbeat over the noise of pain synapses. When the levels of my physical pain increase, as they have of late, I struggle to own my pain, rather than it owning me.
Helping Wendy with Mindfulness Mondays is therapeutic; choosing a topic; searching out the quotes; formulating the post – all help me focus, to remember to breath.
I hope this week’s Mindfulness Monday quotes help you be mindful of the pain and of the moment.
“Some people think that to be strong is to never feel pain. In reality, the strongest people are the ones who feel it, understand it, accept it.”
“Mindfulness can play a big role in transforming our experience with pain and other difficulties; it allows us to recognize the authenticity of the distress and yet not be overwhelmed by it.”
“Chronic pain or other challenges are invitations; gifts that challenge us to learn how to manage the mind.”
*this is solely my experience, it may be different for others. I live in Arizona, the requirements can be different for different states, and the type of product offered can be very different also. You can read a good article about the whole process on Leafly, here.
As soon as we moved to Tucson I started the process of getting my Medical Marijuana card. I received it on my birthday (July 2nd). Here’s the process I went through:
First I had to get an Arizona Driver’s License, thankfully I kept my license up to date even though I hadn’t driven in years. To get my license I had to prove my identity and prove I live here, I took a copy of our lease and mail that had been forwarded from our previous address. Within an hour after arriving at a DMV I had my temporary license in hand, after 2 weeks I received my official license in the mail. Very shortly after that I went in to apply for my Medical Marijuana Card.
To obtain a Medical Card from the Arizona Department of Health I needed to take my medical records that proved I have been dealing with one of the approved conditions on the list for over a year, in my case severe migraines, to a doctor to see if I qualify. To find a doctor who will do these referrals was pretty easy, I just looked in the local free paper, there are plenty of ads (I actually think this is kind of weird) I saw an ad that looked a bit more professional than some of the others and emailed them (as most of you probably know, I don’t use the phone because of my hearing loss). The doctor I saw is a Naturopathic Doctor, she reviewed my records briefly and checked my vitals. She told me a little about Medical Marijuana, and told me I should receive my card in a couple of weeks. Oh, I also had to pay a fee to the doctor and a fee to the state, the doctor fee can vary, the state fee is set. You can get the recommendation from the doctor and then file your own paperwork online with the health department, but I decided to pay the extra little bit to have the doctor’s office do the filing for me, they even took my photo for my ID. So to break down the cost, the office visit was $100, the processing fee (to have them file all my paperwork) was $20, and the state fee is $150 so the total cost to get my the card was $270. The state fee is $75 for those with a SNAP card (Supplemental Nutrition Assistance Program)
If you are interested in even more details, this link will send you to the center where I saw my prescriber. Actually it isn’t “prescribed”, it is recommended, doctors honestly don’t have enough knowledge about the efficacy of marijuana (the different strains vary in what they do, some are sedating, some are energizing, some help pain, some cause paranoia…..there is no way to actually just prescribe marijuana like you do other medications, you have to know all the different aspects of the different strains and delivery methods, therefore they really have no idea how to dose it. The center that I went to offered a 15-minute Complimentary Consultation to discuss the available types and delivery method for cannabis, and suggested strains to help with my condition. They also suggested a dosing schedule. I felt this visit too short, however, since I had already done a lot of research I didn’t need a lot of guidance (or so I thought), but I welcomed the advice on strains and dosing. The center also offers a couple of workshops, one teaches how to make edibles because it’s much cheaper to make your own, (these are an additional cost).
After receiving my card I visited a Dispensary that is located close to my house. (since then I’ve done some research on the different dispensaries in the area and I will make sure to take advantage of the best deals, it kind of blows my mind that they offer sales, I thought all the dispensaries would have the same prices and the same products, but it can vary greatly. I should note that the dispensaries are non-profit, however, some also sell paraphernalia, I don’t know if they are allowed to make a profit on that, it seems like they should.
When we arrived at the dispensary someone greeted us at the door and welcomed us in. We walked into what appeared to be a somewhat large lounge, the actual shop was in another room that had to be opened for me to go in. Stuart was not allowed in the shop with me even though I told them I needed him to hear, to compensate they had a pen and paper so we could communicate that way if needed.
A very sweet girl met me at the door and gave me a tour of the shop. She pointed out a cart that contained CBD products only and told me that anyone could come in and buy those, they simply took the cart out to the lobby and had them shop from there. I noticed that she kept pointing out the strains with the highest amount of THC, they are more expensive, so I was wary about taking her advice as to what I needed. (I have since been back to this dispensary and another and found the people I spoke with very knowledgeable and were able to really help me figure out which products to try.)
There are so many different types of delivery methods, smoking, vaping, tinctures, transdermal patches, various edibles (from cookies to hard candies), drinks, and concentrates….so much it is mind blowing. The doctor I saw recommended I use a tincture and vape. A CBD tincture 10 mg, 3 times a day, as a migraine preventative; and a CBD:THC 1:1 tincture to help me sleep. It was also suggested I vape for acute pain, since I have a dry herb vaporizer I was given the name of a few strains that would help, I was also given the strength I’d need if I wanted to use an oil vaporizer. This was a good starting point, but I have a lot more to learn. This article can give you more of an understanding of what CBD and THC are and what they do: “CBD vs THC: What’d the Difference?” (I have found the best information on Leafly.com)
In my next post I will tell all about what I’ve tried so far, and things I wish I knew before I started this journey.
****NOTE**** I admit I’m very nervous about writing this article. Please be kind to me, do not treat me as a drug seeker. I am not looking to get “high”, I simply want the pain to lessen.
I’m so tired. I’ve experienced fatigue before, but nothing like this. I can’t stay awake, except at night, when I can’t sleep. I’m restless, yet I can’t get it together. I started exercising more this past month, but this past week I haven’t been able to do more than what is absolutely necessary. A little while ago I put some dishes in the dishwasher and now I’m ready to take a nap. I am having a very hard time keeping my eyes open. Lifting my limbs is a challenge. This in conjunction with extreme brain fog, yes writing this post is a challenge, it’s also why I haven’t been able to follow through on promises made. I really hate that.
What changed? I honestly don’t know of anything that has changed so much in the past week that would cause this. I don’t think I’m sick. I’m not running fever or anything like that. My headaches haven’t been worse, they aren’t better, but they aren’t worse. I haven’t increased my medication. I am taking CBD oil during the day, but I’ve been doing that for over a month now, so that’s not new. I’ve actually been taking less this week because I keep forgetting. As it has been pointed out to me countless times by numerous people, I have been under a huge amount of stress, but honestly, the stress hasn’t really intensified recently, it’s been pretty steady for months now. I’m dealing with it pretty darn well, if I do say so myself. The only thing that has my mind racing is our house hunting, it’s taking longer than we expected, and it’s just getting to me a bit. I’ve decided to step back from the search for a few days at least, a bit of breathing room, get refocused and start again next week.
I’ve been using marijuana to help me sleep for a long time. (full disclosure, I was using it long before we moved to a legal state) for some reason it’s not working like it used to. I can’t sleep, yet I can’t stay awake, what’s up with that? When I try to go to sleep at night I just toss and turn, often I just give up for a while and get up. It’s hard not to snack in the middle of the night when you’re up all night. OK, I’m exagerating a little, I am sleeping …some…
Okay, my brain is not working. I’m about to fall asleep…probably not really, but I feel like it. It is storming like crazy right now. Monsoon season is almost over, as much as I’m tired of the storms every day, I’m going to really miss them when we go for months with no rain. Plus, they are really cool.
Some reasons I might not be sleeping…hmmm….pain. My wrist is getting better, I’m not having those horrible sharp pains and I have much more range of motion. I can pick up dishes without extreme pain! That’s awesome! But, now it hurts all the time. The pain is not as intense, but it’s always there. I bought some CBD salve yesterday and I’m rubbing it all round my wrist and hand, not the actual surgical site yet, I get my stitches out on Friday. after that I’ll rub it all over. Cross fingers it helps ease the pain a bit. I feel silly complaining, it’s not that bad, it’s just constant. (sometimes I do still have some sharp pains, I was just reminded of that a few moments ago when I tried to help with dinner)
Thank you all for listening to me rant. I do accept that this is the way it is right now, but that doesn’t mean I shouldn’t try to figure out what is going on and take care of myself the best I can.
I was over at my friend Faith’s blog, Little Lord Oscar Dandelion, if you haven’t been over there, check her out, she has some amazing short stores and she’s just really cool too! She shared a post from Ten Things of Thankful and posted her own list of things to be thankful for, you can check her list out here. I think this is a wonderful idea, I have not been paying enough attention to the things in my life that I’m very grateful for, I think this will help me bring that front and center. I think it’d be super cook if you joined us on the challenge.
Ten Things of Thankful (I do want to point out that the rules say “Although the number ten is in the title, that is more of a suggestion than a hard and fast rule. Had a rough week and can only come up with one thing? That’s OK! “I’m thankful that situation X wasn’t worse” is a perfectly acceptable post.”
I’m thankful my surgery has been scheduled. (I’ll be having surgery on my wrist on the 9th of August, I’ll post more information on that soon)
Our house closes tomorrow….unless something unforeseen happens our house in NC will no longer be ours soon.
We started looking at houses here in Tucson this week and we already have a couple we are interested in…cross fingers we pick the perfect house, this will be our forever home.
My father-in-law has a car he’s letting me drive…and it’s a really cool car too.
I’m learning to decorate cookies, it’s an edible art form…cool.
I’ve been able to admit I might possibly have an eating disorder. I know I’ve written about this before, but it’s worse/different and I’m scared/desperate. Admitting this is the first step, I think, to getting better.
I was met by my niece and nephew today with the tightest hugs ever! I feel so loved.
I was able to play a game with my husband, his sister and her husband and I didn’t get competitive, I just found it so much fun, I laughed so hard…mostly at myself!
I went to the medical cannabis dispensary for the first time and it was very interesting, I learned a lot, and found out I need to learn much more.
I had a few hours yesterday with a great reduction in migraine pain. (I took a heck of a lot of medication to get to that point, but it sure was nice to have that break)
I think I could actually add a few more, like I’m very grateful we have A/C in this 112F+ days, I have a big bathtub, I have been able to cook often, I found a few new cooking shows….yes I can find all kinds of things to be grateful for….Oh I have one! Stuart took me to this little park today and it was gorgeous! A little oasis in the middle of the desert, it was amazing!
Don’t forget to share your list Thankful list, I’d love to hear all about it.
I know you can normally find Mindfulness Monday here each week, I tried, but I haven’t been able to write much and I thought I’d explain why. (it has taken me many days to write this post, so bare with me…mmmkay?)
You may recall that I had De Quervain’s tenosynovitisin my left wrist/thumb earlier this year (you can read about it here), but you may have missed that I now have it in my right wrist. The left wrist was treated with a cortisone shot and since then I’ve had no problem. I’ve had 2 cortisone injections in my right wrist and I’m still in pain. (you can see pictures from the first injection here) I had the second shot on my birthday (July 2nd) my wrist felt better the first day after the injection, but by the second day I was back to the original symptoms and by the 3rd day it was actually worse. When I went in for the second injection he gave me the option of having surgery or trying the injection again, he told me that if it didn’t work to just call and schedule the surgery I didn’t even need to come in again. So I chose to try the injection again, to say those injections are not pleasant is a huge understatement, but I was really hoping to avoid surgery. After a week, when it was evident that the shot didn’t work, we called to set up the surgery and were told that it was too soon after the injection, I have to wait 4-6 weeks. I was not a happy person. I have a lot of limitations because of this issues; I can’t write or draw, I have extreme difficulty brushing my hair, typing, cooking, picking things up with my right hand, swimming…I’ve wearing a brace that holds my wrist and thumb stable, if I don’t wear the brace, I can’t do much at all…unfortunately the brace has started to cause issues on it’s own,
so I have to stop wearing it. The good news is that the surgery is almost always successful, and it’s very minimally invasive, in fact they often do it with local anesthesia. (I will admit I’m a bit intimidated by that, I don’t want to see them cut on my arm…ewww, but I also hate going under general anesthesia, so we’ll see) I was having a hard time accepting that fact that they were making me wait for the surgery, honestly I was pretty pissed; then I remembered that the way to happiness is acceptance. I decided to look at the whole situation differently. It’s only a few weeks difference, they aren’t saying I have to be stuck like this forever. I stated taking extra supplements that are supposed to help with joint and inflammation issues, hopefully this will reduce the swelling and some pain. (if you’re interested I’m taking extra turmeric, collagen, glucosamine..I think that’s all) Even though I’ll still need surgery, if the swelling is down, it should help with recovery. Accepting this situation made life a bit happier.
On another note, I’m having increased migraines, often with migraine associated vertigo, and cluster headaches. When we first got here my head actually felt better, but that didn’t last long. Bright lights are a big trigger for me and it’s really bright here, more than that, now it’s monsoon season so the barometric pressure has been all over the place with crazy storms almost every day, my head is definitely feeling it.
I’m also having a lot more cluster headaches and I don’t have anything to help them. I saw a new headache specialist about 3 weeks ago, I wrote about it here. I felt optimistic after that visit, but I haven’t received the gammaCore that he prescribed, it was supposed to arrive in about 5 days. We called to find out the status and no one called back, so we called again, and still no call back. I know that the office was moving but that doesn’t excuse them from paying attention to their patients. **Update** They called late yesterday and it seems that the doctor didn’t have us fill out a form that he should have, so it delayed everything. The nurse who called said she’s fill it all out and we could sign it the next time we are there, so the gammaCore is now on it’s way! I should receive it by the end of the week! Thank goodness. (the gammaCore treats both cluster headaches and migraines! again, Thank Goodness!!
So that’s what’s been keeping me away….along with other stress, but that’s for a different day when I can actually type without being in intense pain. Hunting and pecking with my left hand is not fun. 🙂
“Accept – then act.
Whatever the present moment contains,
Accept it as if you had chosen it.
Always work with it,
Not against it….
This will miraculously transform your whole life.”
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.
For the past year I have been much less symptomatic than I have in years (not counting my trials with my medication side effects). I was certain that I was prepared if this came to an end. I’m not. Right now, I’m scared. I don’t want to end up like I was a couple of years ago, or what I was like from 2008 – 2016. I’m trying hard to be okay with my life no matter what. I got to the point that I was okay when I was sicker, but it’s so much easier when I’m not.
Before you think that all of this is because of the stress of us possibly moving to Tucson and worrying about our family, my increased symptoms started before my mother-in-law’s accident; I’m not saying stress doesn’t make my symptoms worse, but it didn’t cause it. Although, it may be contributing now.
About 3 or 4 months ago I started having some new gastrointestinal symptoms. I’m having excessive and extreme belching, the feeling that there is something stuck in my chest, and alternating constipation and diarrhea. Oh, and we can’t forget the excessive smelly flatulence, I really wish we could forget that, and I’m very sure Stuart wishes he wasn’t subjected to it. I’ve been put on acid reflux medication, something I was finally able to get off of early last year. I tried 3 different kinds of reflux medication and I’m still having symptoms, they are reduced, but they aren’t gone by a long shot. I had an endoscopy on Tuesday, and it showed…..nothing. A little redness, but that’s it. She did take some biopsies but it’s not expected to show anything. I’m kinda hoping it does. Nothing serious, but something that can be treated and I can get off this medicine, that isn’t taking care of things anyway. A few years ago, I was very sick with gastrointestinal issues and after over a year of testing it was found that I have fructose malabsorption. (I already knew that I was allergic to wheat and I won’t even get into my experience with gluten) All I could think yesterday when I heard they found nothing, was oh no, another year of testing, and possibly finding nothing. Since I’m not throwing up, losing weight unexpectedly, or passing blood; this really isn’t a high priority to doctors. I’m already on a low FODMAP diet and I don’t really want to make another major change to my diet, but I’m guessing that may be what’s going to happen. Damnit!
With the crazy weather we’ve had this winter my migraines have gone out of control! They were a bit better, but recently I’m having migraines every day. It’s driving me crazy. The pain goes from a 5 to a 9, sometimes all in the same day. I’m only supposed to take medication 10 days a month, as of the 12th I’d already taken medication 8 days this month. Crap, crap, crap! They say to take migraine meds at the first sign of a migraine, if I did that, I’d be out of meds in 10 days, instead I wait until it either gets to a 7, or it’s been non-stop for a few days. That really sucks. I will be taking meds a few more days this month. I’m going to start a DHE regimen to see if I can break this cycle. That’s means getting a shot 3 times a day for 3 days. My butt is going to be so sore, and these shots hurt, but hopefully I’ll feel better next week. DHE is not a preventative, but it does a good job at stopping a migraine, and it often works on cluster headaches too. Doing the 3 day regimen is to break the cycle, not to prevent new attacks.
I do start Botox next month. I tried it a few years ago and it helped for a while, but it stopped working. We are hoping I have a better response to it now. My doctor is willing to prescribe the new GammaCore, but insurance won’t cover it and it’s really, really expensive! Hopefully they’ll cover it in the future. It’s shown to help with both cluster headaches and acute migraines. It doesn’t prevent migraines, but it can stop them, and since it’s not a medication I wouldn’t be limited to the 10 – 15 uses a month. There is also 2 new medications coming out later this year for migraine prevention. I hope insurance companies will cover them as soon as they come out, a new migraine prevention medication is desperately needed.
I’ve also been much more dizzy. My balance is worse recently, and the world often spins when I move my head too fast. Last night I kept having vertigo every time I looked up. Just moving my eyes to look up made me spin. That was new, and I hope it never happens again. I think this increased vertigo is migraine related, but I can’t be sure.
Today I had a confrontation with someone and I didn’t handle it as well as I’d have liked. It left me shaky and full of anxiety. When I tried to explain it all to Stuart I got so upset I started to seize. I haven’t had a seizure in a very long time, luckily this was very minor, but it scared me. I am happy to say that I calmed myself during this by deep breathing and chanting with Stuart. Sometimes this mindfulness thing really works. 🙂
Now if I can just take each day as it comes and not worry so much. My worrying isn’t going to make it better. I think it’s time to get serious about my meditation practice.
Anyone out there go from feeling better to feeling worse again? How did you handle it?
How do you deal with it when you know something is wrong, but the tests come back normal?
Anyone trying or planning on trying the GammaCore?
How are you guys doing? Any news? I haven’t been able to read many blogs lately, or be on social media at all, so many things going on. But I want to keep up with all of you, so please, how are you?
Tuesday was my husband’s 50th birthday, and as I write this he is sitting on the floor putting together a Lego helicopter, he is so cool.
Early last week I realized that this was his 50th birthday! Oh my goodness! I hadn’t planned anything really. Yes, I got him the Legos, and I planned to make him dinner, but that wasn’t enough for this milestone. I was determined to do something special. I was on a mission.
This mission was impeded by the fact that I can’t talk on the phone or drive. Hmm, so what could I do? What did I do?
First I decided I wanted to take him away, not far, just away from our house. I wanted to spoil him, so I started looking for a hotel that also provided massages. First I did a lot of looking on line and I even did a live chat with one representative, but the chat suddenly stopped, the hotel had to be called. What to do? At this point I was afraid I wouldn’t be able to follow through on my desire to spoil my husband. Ah, but I have a friend who I chat with via Messenger almost every day, I asked if by chance she had the time to call the hotel for me, and she did! She called and stayed on Messenger with me so she could ask me questions. It worked out great! It was obvious from the start that the staff at this hotel were incredible, not only was the girl at the front desk helpful, she actually went out of her way and went to the restaurant kitchen to see if they could accommodate my food requirements. She was not asked to do this, my friend only asked if there was a gluten free menu available, she took it upon herself to try to make sure we would enjoy our stay. She helped us book a Spa Indulgence weekend. The girl at the spa was also amazing. She helped us set up massages for both me and Stuart at the same time. I wanted a special type of massage, Lomi Lomi, and she made sure I could get it. (there is only one massage therapist who does this type of massage) Again, my friend was amazed by how helpful these women were. It was a very good experience.
I also wanted to take us a little picnic, that way if we had the munchies during the night, we didn’t have to go forage for food (or spend outrageous amounts on room-service). Really, I just thought it would be romantic. Again, an obstacle was in the way, I can’t drive. How would I get the food for the picnic without Stuart’s help? I didn’t feel comfortable asking my neighbor to take me to the grocery store, so I decided to look into having some groceries delivered. I had a little difficulty because the first place I tried to order from had to call to get payment information. I couldn’t give them my credit card information over the phone, since I can’t talk on the phone. Bummer. Of course, I didn’t find this out until AFTER I had done all my shopping. pfft. So I found another store that offered delivery and was able to place my order and have it delivered while Stuart was at work. I did have to tell him we were going away for the weekend, but the picnic was a surprise.
I also got our pet sitter set up. That was another issue I had to sort out. Our normal pet sitter was going out of town, but she offered to take Kiki with her. I know that my dog hates to ride in the car, she gets car sick…poor puppy. So I called Kiki’s trainer (he helped her feel better about people coming in our house, it still bothers her, but she is much better about it) He said he could take her for the weekend and I thought that would be the answer, until I found out how far it is to his place. Kiki’s normal sitter’s trip would mean an hour or so in the car, if she stayed at her trainer’s it would have been a 45 min ride. Hmmm. Kiki went on a little trip with her normal sitter. It all worked out, but it was an ordeal. And I handled it all through texts, without help from Stuart.
Getting ready for this getaway took a lot out of me, but I’m proud that I was able to do all of these things without Stuart’s help. He does so much for me, doing this for him meant the world to me. He was pretty happy with it too. I’m not even sure if he was happier about the trip, or the fact that I spread my wings and found ways to be a little more independent.
While planning this trip I was so worried that we’d get there and I’d start to feel bad and would ruin everything. Of course, Stuart wouldn’t have thought it was ruined, but I would have. It would have broken my heart. As it turned out, I didn’t sleep well on Friday night and Saturday was a bit of a challenge for me. I was very dizzy all day and simply felt, bad. Truthfully, I wanted to stay in bed and sleep all day, instead I got up, had a good breakfast with my husband, and went to the fitness center and did all of my PT exercises. I was hoping exercising would make me feel better, it didn’t. We had talked about doing something on Saturday, either before or after our massages, which were scheduled for 2pm, that didn’t happen. We just vegged and spent time together. Then we had our Spa Experience. oh my goodness….
When we arrived at the spa we were taken to the dressing rooms and were given plush robes and slippers to wear. We were given fruit scented water to drink as we waited. It was so relaxing, I’m relaxing right now just thinking about it. We were then taken to a darkened room and were given most delectable massages. It was a dream. Afterward, we were again given water in wine glasses and settled in to rest a bit before leaving. There were also snacks and tea available if we desired. There were these fabulous lotions there and I actually found one that I like. Most things have way too much of a scent for me, almost everything I have is either unscented or has a lemon scent, this lotion smells like Fresh Melon. Stuart loves it, and it doesn’t make me wheeze or give me a migraine…score!
On both nights we had dinner at the restaurant in the hotel. The first night we had steaks, they were delicious. I felt that the vegetables had too much oil on them, but they were still tasty. The second night we both had fish, it wasn’t as good as the steaks, and again I felt like the vegetables had too much oil. They were both good meals, they just didn’t seem to be on the same caliber as the rest of the hotel. Except for desert, I had chocolate crème brûlée, it was divine. I saved some and had it on both nights. Stuart had a salted caramel cheese cake, it was go good. A bit too sweet for me, but very good. Really the crème brûlée was a bit too sweet for me too, but it was oh so good.
There’s more to tell about this trip….but I might keep that to myself. 😉
This week I’ve paid the price for my excursion, but it was worth the pain and the dizzies. Stuart is worth it. It was nice to take care of my caregiver.
Sometimes, it’s just worth it.
Have you accomplished something that you didn’t think you could?
Do you sometimes think “it’s worth it”, when you know you are doing something that may deplete all your reserves and have you flaring for days?
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.