A new normal

I wanted to write a bit more regarding living with chronic illness and the challenges involved with that. I’m one of those people who “don’t look sick” and since starting a new job this summer, and dealing with a couple health issues at once, it’s been a tough balancing act to sort out. I hope that by sharing my thoughts and my experiences that maybe someone else out there will feel less alone, and you’ll find what I have to say useful in some way.

If you’ve followed my blog for awhile you’ll know that I was officially diagnosed with relapsing remitting multiple sclerosis this past spring after a couple years of suspicion that I had this disease. I also have recurrent orbital myositis, and ehlers-danlos syndrome. I like to refer to my health as a hat-trick of crap! It’s a real struggle to deal with 3 chronic conditions. Now that my eye condition (orbital myositis) is more-or-less under control from a flare-up this past spring, my attention is back on my joint issues and the MS which for some reason has kicked it up a notch. For the last few months I’ve been experiencing numbness, tingling and heaviness of my feet and legs along with dizziness/lightheadedness, fatigue and cognitive problems. I’d like to spend a few minutes talking about it.

It is starting to dawn on me that this is my new normal and that my new normal sucks! MS is a pain in the ass. I hate feeling disorientated by both the dizziness and the cognitive problems. I’ve started a new job and I’m finding it challenging because of the cognitive stuff. This is something I wasn’t really expecting because the job is very similar to what I’ve done in the past and I thought it would be a smooth transition. It has been in some ways, but it’s frustrating me in some others. I have a hard time with word-finding. For those who don’t have MS what I mean by cog-fog is that my thoughts aren’t clear; I have a difficult time finding the words I need to communicate with people, I forget conversations which leads me to repeating myself over and over, I don’t remember where I put things, I can’t remember what I did a few weeks ago, etc etc if it is memory related it’s a problem! and the word-finding issue makes me sound like an idiot and then I get embarrassed. It’s extremely frustrating. Probably the most frustrating thing I’ve dealt with so far. I used to have an excellent memory, and I’m rather wordy… hence why I like blogging. I like to write and read and think! It’s making me nuts that my lesion-riddled brain is having a hard time connecting the dots between what I want to say and what actually comes out of my mouth… and then that I immediately forget what I’ve already said and start repeating it. Not cool.

The physical symptoms of my legs feeling like they weight 30lbs more each than they actually do, stumbling around a bit, and being dizzy is odd enough, but the cognitive stuff is way more annoying.

With work it’s hard to know whether to tell my manager what’s going on or to keep it to myself. I don’t want to disclose that I have health issues because in my experience that is a slippery slope. I don’t look sick so people think I’m making it up, or being lazy. I look healthy and people expect me to be able to work full-time like other healthy young-ish people can. I’ve already been put in a situation where my employer expects me to work full-time hours (technically my position is as a casual employee but they have lots of shifts to fill. I’m not obligated to work anything I don’t want to which is part of why I took the job as a casual, but they’re also not obligated to give me any shifts so it might be a feast-famine situation) and I’ve had to say several times that I only can work 3-4 days a week but they still keep pushing me for more. I haven’t elaborated as to why I won’t work full-time other than vaguely insinuating that I have farm work to do (partially true!) But my coworkers seem to have the opinion that I’m either a) well-to-do financially and don’t have to work which makes a couple of them jealous or b) lazy or c) they don’t know what to think of a seemingly healthy 30-something who doesn’t want to work full-time and give me puzzled looks whenever it comes up. I’m not sure whether I should speak privately to my manager and tell her what the deal is, or if that’s a bad idea, but the fact is that working full-time isn’t working for me. I have to look after my health first or I won’t be working at all. How to accomplish a 3-day work week is something I’m still sorting out.

The other issue I have asides from my symptoms is that I need time for doctors appointments. I see a lot of doctors as I’m sure you can imagine. I have a GP, rheumatologist, neurologist, ophthalmologist etc. and I need to see them on a pretty regular basis not to mention all the other tests that I get sent for here-and-there. Getting time off work is a problem so working 3-4 days a week leaves me with some weekdays that I can schedule appointments. I recently met an older lady who hadn’t seen a doctor in 30 years and it hit me that my life is very medically-involved. I can’t imagine waking up every day feeling alright, going to work full-time, having energy for family/friends/hobbies, and just living without disease. That’s so totally foreign to me. I will admit that I get a ping of jealousy when I think about how most people are just going about their lives feeling good. If you’re one of those people, enjoy that!!! Appreciate it! I wake up every day and take an inventory of what hurts, what’s numb, how dizzy I feel, how tired I am, what I have to do that day and how to pace myself to get it all done, and that’s all before I get out of bed. Then the rest of the day is spent trying to live as normally as possible battling weird symptoms, pain, and juggling doctors appointments.

I try to keep a positive attitude and stay friendly to everyone I meet. I like to make jokes and try to get people to crack a smile while I’m at work. I work in healthcare and I know how frustrating and stressful it is for patients, so I make it a point to chat with them as I work and put people at ease and I think it helps. Sometimes I share a bit about my own experiences and people seem to respond to that. Some folks seem to feel better knowing that the person behind the desk can relate to them personally and their situation, and some don’t but that’s alright too. I’ve learned over time and practice to judge the type of person I’m interacting with and behave appropriately. I find dealing with the patients rewarding and probably the best part of my job.

Right now I’m facing a difficult decision to which there really isn’t any right answer. I don’t hate my job… I don’t love it, but I don’t hate it. If I can get the hours sorted out a bit better then it works for what I need right now. However, I’m supposed to be starting university again and I’m struggling over whether I should continue to pursue more education or not. This has been weighing on me for months. I’ve been going around in circles trying to decide. The cost of getting my degree versus not getting a degree and continuing to work while I can is what’s got me confused. I finally found a program that I’m interested in (Therapeutic Recreation) and that would be a good fit for me as a career. I like university, and I’d get to meet other students and make friends (this is a big thing since I’m pretty isolated after moving across the country and not knowing anyone here besides K.) I’m pretty confident I would find work after completing my degree, and that I’d enjoy the work. The problem is that my MS has been kicking my butt this summer and making me really question whether the stress of classes/exams etc would be too much, whether the cost of getting the degree is worth it (this is huge!), or maybe I should give it up and just keep working while I can. No one knows what course my MS might take. I may be functional, working, and feeling good for years and years, or I might wake up tomorrow and be disabled by it. Oh to have a crystal ball! (I wonder if they sell those on Amazon…) and trying to make major life decisions with so many unknowns has me all tied up, completely unable to decide. On paper (many pros-and-cons sheets later…) I would expect to break even on my degree about 10-12 years down the road (after paying off student loans, and making up for the lost wages/savings etc that it will take for me to get my education) versus if I keep working my so-so job and don’t go to school. It would all work out to be about the same financially until that 10 year point. Then if I have a degree and am still working I would start seeing a profit. But that’s a big “IF” because statistically, relapsing-remitting MS will change into secondary progressive MS (a more seriously disabling form) in about 50% of cases within 10 years. So I have a 50% shot of either being more-or-less the way I am now, or facing disability within 10 years that would likely prevent me from working. I’m sure by now you can see the problem of whether or not I continue my education. I’m going to be on disease-modifying medication to hopefully slow the progression, but there’s no guarantee that it’ll work, or for how long I’ll be employable.

Then there’s the issue of stress. Stress makes MS worse. It causes more relapses and flareups of symptoms. University is stressful. I won’t have time or energy to do anything except focus on my studies which is challenging. If I don’t go back to school I can work my 3 day week (I hope!), then spend down time doing my farm stuff, riding a bit, pursuing other interests and my bucket list! But I won’t get to have that rewarding career or the experience of going to university which I’ve wanted for awhile.

So around-and-around I go… I’d like to get off this ride now! There is no “right” answer and it may just come down to tossing a coin.

 

 

A weekend away

K and I had a wonderful, well-earned weekend away from the farm. Leaving our zoo in the capable hands of our good friend, we headed off to explore more of Nova Scotia! Our destination was Brier Island but we took our time to enjoy the drive, stopping in at Annapolis Royal for lunch and some sightseeing at Fort Anne where we checked out a really old cemetary (the oldest grave we saw was from the early 1800s) and just generally enjoying the scenic route all the way down the coast. 2 ferries later we arrived on Brier Island and spent the night at a wonderful B&B; Brier Wood Farm aka Hooking By The Sea. As we were enjoying our delicious breakfast, our host (Victoria) came running to tell us that her mama alpaca had just given birth so of course I grabbed the camera and took some brand-new-baby photos. Such a neat experience! I really like alpacas and it was so sweet to see her first steps and first nursing! We also got to make friends with the rabbits, chickens, sheep and a miniature horse who call the farm home. (K says I’m not allowed to plan vacations anymore because I booked us in at another farm… I still don’t see the problem! I had a lovely time and came home with more yarn! haha… We both also got to experience what chickens are like vs crazy Guineas and have agreed that chickens really seem quite mild and friendly after owning the hooligan trouble-makers that chase our vehicles and worship the tractor God!)

Then we were off to do some whale watching which was the highlight of the trip! We saw probably about 10 or so humpback whales. Mostly they were “logging” (sleeping!) but when they did wake up, we got a bit of a show. One of them got curious enough to lift it’s head right up in front of me. I’ve been whale watching several times before but I never get tired of seeing them!

The funniest part of the weekend is when I almost came home with a rabbit. I still feel kinda bad about not scooping him up, but was assured that he is doing just fine where he is! Obviously he had been someone’s pet and been dumped out on the side of the road. I made K stop so I could see if it was alright, and when the bunny didn’t run off, but rather came to see if I had treats I didn’t know what to do! I phoned the owner of the B&B and she got quite a giggle out of me! Vicky: “Is it a two-toned rabbit?” me: “yes, yes it is…”  hehe… It was probably for the best that I didn’t just scoop him up because our drive home on Sunday night was way too long to have had a stowaway. Traffic was closed on the highway due to an accident at one point and our total drive time turned into about 9 hours. It’s not officially a roadtrip until you’re fighting over a map and running out of fuel with nothing but skittles and chips left for sustenance! :)

We were both pretty exhausted when we finally reached home but it was a wonderful weekend to remember!

Goofy birds

I never thought I’d be a bird person! But these two characters are sure the talk of the farm! :) Their antics and adventures are turning me into that person who talks non-stop about her birds. I should’ve taken this video more to heart! I spend so much time watching them, shooing them away from the garden, and taking photos of them, it’s getting kind of ridiculous. K is just as bad! (although he’ll deny it!!)

They’ve been surprisingly good about coming home to their coop at nights which was a relief because when we released them that first day to free range, I wasn’t sure if we’d ever see them again. I had nothing to worry about! If you leave the shop door open for a few minutes they come a runnin’ to sit up on K’s truck or hang out in the rafters. I sure got a good giggle out of them sitting on the truck and refusing to leave… it’s not my vehicle that they’re pooping on after all! ;) They spend most of their days wandering the yard, chattering away, and getting into mischief. The dogs and cats tolerate them but we have had a few close calls with the dogs/cats trying to herd or hunt them. That’s slowly getting better as everyone gets used to each other.

They are goofy creatures! They seem to think that the tractor is their Great Leader and the lawn mower is a close second! They’re constantly planning raids on my garden so I’m also the crazy bird lady who has to shoo her birds away from her vegetables! The folks working on our arena project have been highly amused by it all and grateful for the tick-eating-habits of Things 1 and 2! The poor dogs have each had a few ticks, and I pulled one off of me too which is totally gross, and Al (the fellow running the excavator) said that he had a few ticks on him as well so everyone is totally in favor of increasing the guinea flock! (except for maybe K… what with the bird poop on the truck to explain to his buddies and all…) No matter how noisy or pesky they are, they eat ticks and I like ‘em! We’ll soon be building a new coop and bringing home some more.

It’s funny how a couple of ugly birds can be so entertaining!

 

Dig, Dig, Dig

Summer isn’t going to be the best blogging season because we’re rarely in the house, but it’s raining today so I feel a blog post coming on!

We have had some big projects underway and nearing completion now. The most exciting of all is that we have a proper sand ring! It’s a thing of beauty!! Pictures say it best so here’s a gallery of the conversion from grass to sand ring:

The dogs really love the new sandbox! Cinder (the yellow lab) thinks it’s just the best place for playing frisbee!

Unfortunately we haven’t been able to ride on it yet because the horses have all gotten sick with some sort of cold/flu. They’ve had snotty noses and a cough for about a week now. The vet was out and they were given antibiotics which seems to have helped. They’re on the mend but not ready to ride yet. Hopefully they’ll be back to normal next week and we can have our first rides! :)

The arena project gained momentum and before we knew it, we had the fellow with the excavator clearing out brush behind our barn, taking down old trees, digging ditches and a pond! The pond and ditches are technically part of the arena project because we needed to get the drainage right to keep the ring dry and useable. The pond gives the water a place to go so it’s not making our yard soggy. (Plus Cinder is really pleased with her new swimming hole!) and we had planned to clear space out behind the barn to make a horse path connecting the front of the property to the back paddock. Al and his excavator have made quick work of a job that would’ve taken us years and years to complete. It’s been an amazing transition! The space behind the barn is useful now instead of being overgrown and swampy. He has cleared off the top soil, taken the pathway down to clay and sloped it to get the water running off into the creek that borders the property, removed stumps/debris so that we can burn and be rid of it, and he’s also collected the useful trees into piles to be used either for firewood, or the ones we wanted to save are being moved and replanted in different areas of our property. The horses will have a lovely, reasonably dry, shady trail under the trees. I’m so excited to get working on fencing and it will be a very big day when they get turned out there for the first time!

With the new pond, it feels like a park. The birds and trees are so serene. I can just see us putting in a gazebo and enjoying BBQs with our family and friends. I can’t say enough about how great this whole process has been and how much closer we are to what we’ve been envisioning since we moved in. The new park under the trees will be so much fun for training our young horses with natural obstacles. Before long we’ll be getting into competitive trail riding!

It’s all coming together and looking like a real horse farm now!

Nervous ticks!

The insect control division at Silver Horse Ranch has been established! Introducing Thing 1 and Thing 2! They might not be much to look at but their resume is impressive when it comes to eliminating all things creepy and crawly! Bugs of all types be warned! (I hope the ticks are nervous! K certainly is! :) ) Team Guinea Fowl are on the scene!

 

I have zero bird experience (and I don’t even like birds! but I like ticks even less!) so the fact that they found the perches last night and are still alive and in the coop this morning is a pretty great success!

We may need to extend it and give them more run space which is gonna be tough considering they’re trying to escape if I open the door! We need to keep them contained for at least a month or so until they learn that this is home and where the food is. K already had quite a chuckle at me trying to encourage them to use the perches last night. They’d been in there a few hours and were still on the ground and the only thing I know about them is that they need to get up higher to roost for the night so in all my brilliance decided I would try to encourage them to go up… almost had one escape on me.  I should’ve maybe taken the hint when I went to pick them up and the folks had to scoop them out of a cage in a fishing net, and asked me how secure the door of my pet carrier was that these are basically wild birds that we hope will stick around and be useful. It’ll be interesting!

I will now be investing in a large fishing net! That’s something I never thought I’d need to say!

Sleep!? What’s that!?

Wowsers! It’s been a month since I posted here! How on earth did that happen!? The sun came out, everything is greening up, and that means we’re fully into the farm-projects-kicked-up-a-notch-or-ten mode!

Quick health update: My eye is slowly healing, no thanks to my surgeon who has been nothing but an insensitive ass during my followup visits! The short version is that the day post-surgery when I began getting sharp pain in my eye and went back to see him, he opted to removed the contact lens that was protecting my eye from the sutures (I have never worn contacts and thought maybe it was aggravating things and told him so… which made him decide to take it out) not telling me that this would make things 100 times worse! Within 45 minutes I was in agony! It felt like a million paper cuts on my eye! Then he pompously came back in the room, said he knew it would happen and only took the lens out to prove it to me. A big “I told ya so”… except that he hadn’t actually told me it would be that miserable! Or I wouldn’t have let him take the lens out in the first place! The pain was so bad that I couldn’t open either of my eyes by that point and the surgeon plus another doc couldn’t pry my eyelids open enough to put the lens back in, so he just sent me home with ointment and painkillers. It was a rough couple days after that before things started to improve. There have been a few other issues with him all kind of similar to that which I won’t bore you with, but needless to say I’m not impressed. Happily my eye seems to be healing fine in spite of the lack of post surgery care. It’s still red and somewhat scratchy (one suture refuses to fall out!) and if I can get one of my docs to put me on prednisone to shrink the mass that is still behind my eye, things will get a good deal better!

I also saw my neurologist and have had my diagnosis of MS confirmed based on my most recent MRI showing a new and active brain lesion. So they’re planning to start me on medication this summer. I’ve been weighing the pros and cons of meds, and trying not to freak out about the cost! Fingers crossed that most of it will be covered by insurance somehow!

On the farm front, we’ve been working non-stop on projects! It’s really paying off! Our place is looking fantastic :) Sometimes I have to just remind myself to look up! look around! and soak it all in! We are so fortunate and enjoy such a great lifestyle even if it is a ton of work. We love our home and all the chaos that goes with it :)

Things that have been accomplished in the last few weeks:

- Dug up, and planted a veggie garden. Put in the posts to fence it off and are getting started with the planks/wire for it now. I love it! Can’t wait to see what grows! There’s something about putting in a few seeds and growing food that I’m always excited about!

- Built a fence along our driveway so we can graze the ponies out there. We have a ton of grass that we’d rather not mow, and 5 always-hungry ponies so it makes sense! K built a gate for the end of the driveway, and used Sherman (tractor…. yes it has a name… I should do a post about the naming of our vehicles one day!) to drill post holes so I could put up the line between us and the neighbor. It’s very nearly ready to use so that’s great progress!

- my Mom was here for a visit (not much of a vacation for her I’m afraid!) and it was whirlwind of house projects. We did a bunch of gardening, tackled the insane mess that was the basement (I’m not exaggerating! We literally were using the whole basement as a pit to store the million boxes we had from moving in plus all sorts of other misc stuff we hadn’t figured out what to do with yet. It was hard to navigate through it all) and managed to not only clear out the clutter, but set up some space for storing tack/horse supplies, and found the only developed room down there to start setting up the home gym. We even got a good start on putting together the horrible machine (my weight machine has a nickname…:) ), and if that wasn’t enough we also finally finished painting the kitchen! Bye bye red and hello yellow! It looks so much bigger and brighter now!

- We did get the seed out on the pastures and I’ve been keeping an eye on the results. It’s alive!!! but still very short. We may need to get a soil sample tested and see about fertilizer, but I’m not unhappy with how it’s growing. The new grass/alfalfa is still too tender to let the horses out there yet so they’re still mostly eating hay with some short turnout on sacrificed grass areas like the riding ring (we’re gonna dig that up soon anyway), plus they get to eat the stuff growing in the other paddocks they’re not usually in, and like I said, the grass along the driveway will be ready to use too!

- We’ve had a few different people out to talk about the arena project and I’m feeling optimistic that we have someone lined up who will do a good job at a reasonable price. Just waiting to hammer out the details now. I did get a chance to ride the other day since things have dried up and will keep making use of the grass ring until then. It’s not horrible as long as I only walk/trot on it. I can get a lot of groundwork and light training done which considering the herd hasn’t done much for a year, is all they really need right now anyway.

- We converted the old rabbit cage that was left here by the previous owners into a bird coop… it’s not fancy but I think it’ll work! Watch this space to see what I end up bringing home to put in it :)

Oh, and did I mention I also got a job?! I’m officially employed again! I’ll be working as a clerk in the health region. Much like my old job. I’m very much looking forward to it! I start in a couple weeks and will just be working casually so it’ll fit well with my schoolwork. I’m also starting my summer university course next week. I’m sure glad I had a month off school to get all this other stuff under control! It’s just flown by!

Pictures from around our pretty little farm for your viewing enjoyment!