Self-care, it’s Tough!

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I was chatting with my friend Tina who blogs at Avon365blog, (go check her out!) And I had mentioned how hard I find self-care. I grew up with the attitude that self-care was for the weak, and we can sleep when we’re dead.

Beginning at age 12, my parents gave me a meager allowance, considering, I think it was $25 per month for clothing, and then maybe another $20 a week for everything else. They paid for my food and shelter, and I paid for everything else. EVERYTHING. Although I usually snagged my mom’s menstrual supplies. Now this sounds like a lot of money, especially in the 80s, but I lived in Canada. I had to buy winter boots and coats. I had to buy birthday gifts for friends. I had to pay school fees for yearbooks, etc. So….I worked. I also had endometriosis, and would collapse in pain each month. And I had EDS. My aches and pains were just growing pains. But I kept on. I stayed in school and worked two nights a week and weekends. Kept my A grades. I ignored the pain. I never thought about it. I couldn’t.

This isn’t “oh! I had a terrible life!” This is just how it was.

I’m used to being busy. Sitting still is tough. Watching TV? Why not organize a drawer? Tidy up? Fold laundry?

Sometimes  wonder if that’s why the Universe/God/Flying Spaghetti Monster finally made me slow down and listen. I’m learning how to do this. When I saw the physiotherapist a year and a half ago, while he was talking to me, he was drawing letters on my leg. I had no idea. I was really out of touch with my body. I’m slightly better now. Losing weight has helped. I want to be more in touch now, I’m not in self loathing mode.

Today, my back is really sore. I had fun playing makeup yesterday! It’s fun and relaxing. I’m glad I still can do something. The back of my head is quite sore today, and rain is in the forecast. The weather definitely has something to do with this. Cluster migraines?

My mom asked me a strange question the other day. She asked me if (I presume she was talking about EDS) was progressive. I hadn’t thought about that perception. Whether I just have a series of flares or if my health actually deteriorates. I had thought it was obvious, as I was formerly ‘normal’ (average), but upon further reflection, really it isn’t.  I have gone from working my ass off to bedridden, but there is also the consideration of breakdown of collagen and tissue. For example, my knees – particularly the right, has a breakdown of the meniscus so dramatic that it is ‘gone’. When I walk it is bone on bone and the patella is so loose I walk like a cowboy. My left is also on its way. My wrists and fingers are sore and achy, likely insane carpal tunnel. I’m trying to get in with specialists to actually treat this, but the doctors retire, someone screws something up, this is three years of nonsense. My 100 lbs weight loss has not relieved any pain, in fact, overall, my pain has increased. I finally found a gastroenterologist who had a clue what was wrong with me, and he retired.

So, yeah, I feel it is progressive, in that as structures break down in your body – the collagen containing ones… I guess that’s most of them. Your body is going to start to deteriorate. My elbows are going the way of my knees. My fingers ache all the time. My tablet isn’t always my happy place.

Okay, going to try to play! Have a fun day, Zebra friends! 😘

The Daily Grind

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I was looking for baby photos of my daughter to post on Facebook to embarrass her, when I came across this one.  My daughter took this of me taking a Selfie,  because she thought my hands were hilarious. They do look pretty EDS-y. Is that a thing? You can see my index finger clearly showing swan neck deformity. This was taken October of 2015.

I found the makeup palette I was looking for. It was in the drawer beside my bed. I don’t often wear my glasses at home, so I sometimes don’t see things in front of my face. I swear I looked there, though! With my glasses and everything! I also promised my husband I would call and confirm his appointment with a sleep specialist. Promptly forgot. Sigh. He remembered and did it, though.

My son didn’t make it to school all week due to anxiety. I feel for him. Grade 7 is horrible. Aspergers is horrible on the downslope. On the upside, it can be beautiful. I kind of want to blog about this journey, but three is too many. Beauty will have to go. Not ready yet.

I’m scheduled to see my friend tonight and she sent me an email saying she’s ready, but she understands if I can’t make it. Which means she loves me, but she loves her bed, too. 😁 I completely get it! I asked if she would mind coming over and ordering in. She gets to see my family, always a treat. But it’s a quiet night. I hope it’s okay, because I don’t know if I can go out. I’m getting frightened of going out without my husband. Part because of ice, and part because of pain. My back is so sore, still. I can’t even really sit up very well. My abdomen, holy moly! I am having the worst cramps. Everything from under my breasts to my pelvis is just one knot of pain. I don’t even know how I’m typing right now. Distraction.

I wanted a bath last night, but my husband was working from home and just sent me to bed at 1:00. Once again, woke up at 6:30. But this time my stupid cable box wasn’t working. He wasn’t home yet, as he took our son to physio, but he worked on the TV thing when he got home. We need a technician now. It’s just my room, too. Boo.

Of course, because I slept so long yesterday I missed a dose of medications, and that can’t be good. I’m probably long past it now. I still want to curl up and sleep. I know if I take extra medication, it will knock me out anyway.

I’d better do something, or I’m going to eat all the cookies in the world…Likely check my social media then nap again.

Stay bendy, my zebras!

 

Worn Out

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I posted about my weight journey yesterday. It was a post I had wanted to do for a while, and I needed some time yesterday to process.

I was supposed to go out with my good friend on Sunday, but hadn’t heard from her by noon. She called me at three, she had a family emergency. We had a good talk, and she let me know a therapist we had both been to see had died just last month. The therapist was just a couple of years older than we are. She apparently had an operation, was fine, and then caught a devastating infection. I saw her for about six months. The reason I stopped was because she was on the second floor of a renovated Victorian home. Just a stunning office. However, I was having trouble reaching it on the narrow stairs when my knees started to give me problems. My new therapist I found when I was having pelvic floor therapy. They insist you see a sex therapist. She and I really clicked, and she does other forms of therapy, so we started working together. Another bonus is, she sees me by phone, because she knows I’m actually doing the work, so that’s fantastic. I am still torn up about the loss of this lady, though. I had in my mind, somehow, thought I might go back to her, just because I liked her so much. You don’t expect to lose people so young. Or maybe I’m not young.

Therapy bills are choking us. At $200 per visit, my son is going 2x per week for Autism therapy, my daughter 1x per month, and I’m finally down to 1x per month for traditional therapy.  $1,200 is a lot. Add in my medication, which most of us covered, thank goodness, my injection fees are $225 every 10 weeks, if I want to start-up with regular and pelvic physio again, I’m going to be expensive. And then there are the cabs to and from. I’m not up to public transportation yet, and our Wheel-Trans is great, as long as you’re not in pain. I mean, I’m really lucky, we can afford it. I’m not whining really, I’m kind of scared, actually. I say it’s the money, but last time I started physio, I went into a pain spiral that lasted months. I don’t know if I should leave well enough alone. The physiotherapist said he couldn’t help my pain, but maybe my stamina. He could also help with the disassociation I have with my body. I can’t tell when someone has their hand on my leg, for example.  I guess I did that to deal with pain.

Pelvic therapy really helped me relax. I keep my whole pelvis tense, likely because of endometriosis pain. Trigger point massage was helping, but I got hit with that flare. I just am afraid to try again. Is it worth it? It was nice feeling relaxed, but I really don’t want to be that sick again.

I had the best nap yesterday afternoon. I went to sleep at 4:00, intending to get up at 6:00. Slept deeply until 8:00. But it was delicious.

My abdomen is very crampy. I have a Mirena, so it shouldn’t be menstrual. I wonder what is going on. I feel like curling up in a ball and crying. Maybe I just need a rest.

Have a bendy day! 😘

Microaggressions and Ehlers-Danlos Syndrome

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What are microaggressions? They are those questions, statements and comments, that might not be too annoying if they happened once, maybe twice. Unfortunately, they seem to happen often. These are the ones that seem to happen most to me. I’d love to hear yours!

When I’m well enough to travel on my own,  I often travel by cab. I’ll explain more on this in another post. Nearly every time I step into the cab, the question after,”Where to, Miss?” is nearly always,”Were you in a car accident?”! Of course, I was not in a car accident, I used to explain that I have a chronic pain condition. For a while I told them I had Ehlers-Danlos Syndrome, you can guess how well that went over! No one had heard of it, of course. So now I just say either I have a connective tissue disorder, or should genetic condition. That usually gets me through.

The next thing that comes up is always medical advice. So many cab drivers have pain, I get it. They know. They have great advice. I have learned so much wisdom from these men and women. But so help me, if one more gives me an exercise plan to follow, I just might scream! It always starts with a You know you just have to… However, I will be working with a very qualified physiotherapist when I am well enough to get there on a regular basis, and his assessment last time I saw him was he couldn’t make me stronger, there would be no ‘working out’ but I needed to work on my prioception (sense of self in space) and stamina, and he can help with that. Taking advice from someone unlicensed whom I don’t even know, would not only be dangerous,  it would be irresponsible.

Vitamins and herbs are what comes next, always! I haven’t been bothered by this one too often, but hoo, boy! When it happens! I take some vitamins for overall health. A multivitamin, because EDSers notoriously do not absorb vitamins and minerals very images-2-1. I take Flaxseed and Vitamin E for dry skin, and general benefit, and I take dried cranberry because my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having trouble with for the year prior. They went away, and it’s not expensive, so, okay! Obviously,  I’m not completely opposed. But when someone says it’s going to ‘cure’ me? Or I have to take hundreds of dollars worth? Then I have a problem.  One time I had hailed as cab, it was at night, the driver had given me a sales pitch, I had demurred, but we were about three blocks from my house, it’s all residential now. Remember I can barely walk, it’s cold, it’s going to be tough for me go get another cab if I stop this ride. He shoves the phone at me. He had been talking to someone in another language.  It turns out it’s some guy who is trying to set me up with a monthly recurring supply of vitamins and wants my credit card number! Yikes! I couldn’t say I didn’t have one, as I needed to pay with it. Good thing my husband was waiting up for me and noticed it was taking too long for me to get out of the cab, and came outside to help. They backed off when they saw him. He’s tall at 6’5″ but not hugely imposing. You bet I complained!

The next one I don’t get so often anymore. Pity. That’s: “You’re too young to use a cane!”. I’m sure I look younger than I am because I’ve been cooped up in my bedroom for years and haven’t been in the sun. A stellar argument for sunscreen if I’ve ever heard one! But I’m sure people mean I’m not 80 yet. I sure feel 80, although that’s pretty ageist because how is 80 supposed to feel? Is that old? I know people who have been old sticks in the mud at 20 and people who have the flutter of youth into their senior years. It’s all mindset. I don’t see what a mobility aid has to do with it, I’m just trying not to fall down.

The one I hate the most is,”You’re so lucky your husband hasn’t left you!”! And if I’m extra good they tack on: “yet!”! Isn’t that lovely? I love people. I know they mean this in a sincere manner. There are so many stories of people getting ill and having a spouse not being able to cope. It’s tragic. My husband is exceptional as a human being, whether I was ill or not, and you know, I wasn’t totally healthy when we got together! *GASP* I KNOW! It’s okay! Do you need to sit down? This might be shocking. Ready? He seems to like me for me. Yes. Not for what I can do for him. We’re a partnership, a family. Weird, right? I get it. We’ve actually talked about splitting up. I’ve had some really bad days and encouraged him to run for the hills. He realizes he would have sole custody of the kids. He is not going anywhere. 😃

My favourite, “You should probably lose some weight.”! I’ve heard this from so many doctors. How do they think I got fat in the first place? If I could move, I would be exercising, walking, moving! It’s not like I’ve always been fat, as a teen I had anorexia and was scarily underweight. (I still have anorexia, I am in recovery). It starts with the medication. Every single one puts weight on, it seems. Then motility issues, and then add in I’m pooping every 3 weeks. I finally started with MyFitnessPal to see how much I was actually overeating, and I was averaging 900 kcal a day. Not good. Not one of those doctors offered any solutions beyond the order of ‘lose weight’. I finally asked one doctor why? And she said it might help relieve the pressure on your joints so you will feel better. I asked the next doctor about this theory and he laughed. He asked me if I felt better when I was thinner. I said no, not really. It didn’t seem to make much difference.  He said, “don’t bother, then, you have enough on your plate!”. I sometimes suspect doctors offer this when they don’t have any other solution. That way, the onus is still on you to perform. It sure beats the therapist I had who interrupted a tearful story of mine to ask if I’d ever considered gastric bypass surgery.  I was 275 lbs. I hit 300 lbs in 2015, unfortunately.  I felt awful. I started again with MyFitnessPal, made sure I had enough food at 1600 kcals and my weight started to drop. 40 lbs in 2015. Got sick in 2016 and lost 60 more. Just weighed myself for the first time since Christmas.  I have been eating a lot more because I haven’t been as nauseated, so I suspected a gain of 15 lbs, I was hoping not more than 20! I lost 2! I’m so shocked! I’m now 206. I still want to lose 30 more as I’ve mentioned,  but I’m not desperate to do so, in case I get sick again like I did last year when I lost 40 lbs in 3 weeks. I’m 5’8″. Sorry for the tangent, anorexia takes over sometimes. Give me any point in my history,  basically,  and I can tell you what I weighed.

The woman at the eye doctor who won’t let me sit down. She is a lovely lady, but every time I walk in she stands between me and the seats and wants to chat. She won’t let me sit down no matter how many times the first thing I say to her is, “I need to sit down right now, my back is killing me!”! Sigh.

The most fun I have is with the people who I chat with at doctor’s offices and labs and goings who ask what is wrong with you. I’ve had both very wonderful and very weird conversations with people. The best was the woman who asked what was wrong with me, and I told her I had something called Ehlers-Danlos Danlos Syndrome,  it is a problem with my collagen and connective tissue. “Oh, I have that!” She says. She was older than I am and didn’t seem to be in much pain so I was curious. We chatted for a while, I come to find out the silent she is referring to is high cholesterol! But it’s really similar, in some ways…?

Hope you’re having a great day! If you like it, please give me a like, comment, or help me improve! 😍