A day in the life of chronic pain and fatigue (Part 1)

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I spent the day yesterday with my family, then came back into the city to get some rest. Unfortunately I woke up this morning with a cold (no idea how that happened since I was sick earlier in the week and felt completely fine the last 2 days). So, that kinda ruined our weekend plans since we were supposed to go to a Toronto Blue Jays game to celebrated a couple friend’s 30th birthdays (Happy Birthday Katie and Tim!) – what a BUMMER! I’m resting on the couch watching some “Say yes to the dress” while the boyfriend is organizing the apartment.

I just looked up and saw the kitchen is spotless now – thank you Bart!


As you can see from my first few posts, I’ve given a bit of background information around my health situation over the last 20 years, and the types of treatments that have and have not worked for me, and what I am doing today to live with these illnesses. Going forward, I plan to discuss topics that affect me as a “disabled” person on a daily or weekly basis. I’m hoping to help others in a similar situation to live a happier, healthier life, as well as raise awareness for the family, friends, and colleagues of the sick.

To start off, I will do a day in the life of Alexis right now during the week, Monday to Friday, (I’m not currently working, so it’s a bit boring!) and in a later post, a day in the life when I am working. You’ll notice I don’t take very many pain meds on these days, and that’s because I’m able to get enough sleep, and pace myself. It’s also summer right now in Toronto, which helps keep my pain levels at manageable levels – the winter is a different story!

Here’s a day in the life:

5 AM – I hear my boyfriend’s FIRST alarm go off (he has about six set), which he quickly turns off so he doesn’t wake me, but he does, every time lol. Because I take the muscle relaxant before bed, I tend to be able to fall right back asleep when I hear his alarm (on the odd day I can’t but it’s not often).

6 AM – His alarm has gone off a few more times, and the same thing happens, and I doze right back to sleep

7AM – He leaves for work, at which point our flatcoat retriever jumps on the bed in his spot to nap with me

8 AM – My alarm goes off, and I hit snooze for another 10-15 minutes.

815 AM – I lay in bed and stretch to try and wake up my body. I never wake up feeling refreshed, so it does take me quite a while to “wake up” my body enough to be able to get out of bed.

830 AM – I’m still in bed checking out the news, my emails, texts, and Facebook. I also check my “Misfit” app to see how many calories I burned the day before, and how much deep sleep I got that night. Since we repair our bodies during deep sleep, normally if I have had at least 4.5 hours of it, my pain levels tend to be manageable without pain medication (depending on what I do during the day, and whether I push myself)

845 AM – I get out of bed rather slowly, and feel very achy, stiff, fatigued, and sleepy. I make my coffee (love Timothy’s Rainforest Espresso) in the Keurig machine (which by the way you shouldn’t have on the Paleo diet but I can’t seem to cut out caffeine due to my severe fatigue, regardless of how long I’ve slept the night before – I’m working on improving this to start cutting out coffee). The key to living with chronic pain and fatigue is NOT TO PUSH yourself beyond what you can handle, you really need to pace yourself so you don’t cause more pain and fatigue, or worse, cause a flare up.

9 AM – I sit on the couch with the pup while having my morning coffee, I put Kelly and Michael on in the background (or other shows I have taped from the night before) and listen to those in the background while I do about 2-3 hours of job searching and have a quick and easy breakfast. This also allows my body a few hours to “wake up”. Unlike my boyfriend, I can’t jump out of bed and be ready for the day, my mind and body take quite a while to recover, and there never is a “refreshed” wake up feeling. If I have the energy I’ll unload and load the dishwasher, but if not, I’ll do it later in the day when I can.

My boyfriend will normally text me around this time to ask how I’m doing / feeling, and if there’s anything I need from him when he gets home. As you can see, he’s incredibly supportive and understanding of this illness, and how it affects me (my mom is as well, however, now that I’m no longer living at home, I rely on my boyfriend a bit more since I see him more).

Since I’m on the computer looking for jobs at this time, I’ll normally message my friend Roxanne who also suffers from similar illnesses, as well as a new friend Bob, who actually went to Queen’s Engineering with my dad in 1975. He has recently been diagnosed with a chronic pain illness, and he and I have been chatting a fair bit, helping each other get through the rough days, and hard procedures. I think we both find hope in each other, despite the 30 year age gap!

I also text with my best friends Natasha and James throughout the day, which tends to keep my spirits high 🙂

11 AM to 1 PM – I grab a shower and throw my hair up with no makeup (too much effort for someone with chronic fatigue). By this point the pup is wired and needs some time out of the apartment (and so do I), so I’ll either bring him to the dog park down the street to throw the ball around (about a 10 min walk away) or take him for a walk around the city. It really depends on how much I energy I think I have. If I’m feeling more fatigued, I’ll take him to the park to throw the ball around for him since the walking will drain my body too much. I’m still trying to train him to see me as a “pack leader” but I’m having a hard time disciplining him because my fatigue and pain runs my patience a little thin, and I get too exhausted trying to do it. Luckily he’s perfectly fine with my boyfriend.

130 PM – We’re back at the apartment, where I now need to rest due to my fatigue. I spend some time on the couch texting family and friends, maybe doing job searching or a phone interview, write a blog post, etc. and have some lunch (quick and easy or leftovers). Mango salad is my fav!


3 PM – Once I have enough energy again, I’ll run out to the store for a few groceries (I walk there, so I have to be careful not to get too much, or too many heavy things as walking back with the items would cause me too much pain), I’ll also tidy and clean up the apartment, throw some laundry in (my boyfriend accumulates more laundry than anyone I have ever met! If I don’t have the energy for anything more in the afternoon, my boyfriend is happy to help out when he gets home from work at the end of the day.

530 PM – The boyfriend is normally home from work at this point. I’ll feed the dog some dinner while the boyfriend makes dinner. Depending on my energy and pain levels, I’ll help out where I can, but he normally doesn’t want me in the kitchen with him! ha.

Depending on the type of day I’ve had, my anxiety and depression may be worse, or better, it really can vary from day to day. I can see the anxiety hit right away because I get moody. If I’m down, I know there’s no particular reason for it, and it’s just a bad day of depression. Yoga tends to help keep my mood up, which is another reason why I need to get back into it.

7 PM – After we eat, I’ll clean up the kitchen, then settle in to relax with the pup and boyfriend. Depending on how my pain levels are, I’ll either ice or put heat on my back and neck, and try to do my stretches.

Depending on the day of the week, I may have a volleyball or softball game at night, or I may see a friend for dinner or a coffee. If I do have a sport, I’ll make a coffee to give myself some energy, and take pain medication beforehand so my body can handle it. The next day after any type of strenuous exercise, my fibromyalgia pain tends to flare, so I have to take it pretty easy (even easier than I did this day!)

On Wednesday I had my weekly Trigger Point Injections done at the Centre for Pain Management, so I walked over there in the morning (takes about 20 min), spent an hour there, then came home.

When the nice weather hit, I stopped going to yoga and began going for walks for exercise instead, but need to get back into the yoga as it makes me feel so much better. I’ll normally drive 10 minutes to the studio, medidate and stretch for 30 minutes while the studio is empty, take the 60 to 75 minute class, then head home.

I try and see my nephew once a week in Hamilton (one hour drive from Toronto in no traffic), so if I’m doing that, I’ll normally leave early in the morning, stop in Oakville to grab my mom, then head to my brother and sister in law’s together. We normally spend a few hours with my nephew and sister in law at their place – Grayson loves to go for walks, play at the park, and play in the backyard (hoping he’ll be a soccer star like auntie used to be!) I find that after an hour with him, my energy levels have completely plummeted and I’m ready for a rest or a nap. Depending on how much I have been bending over with him, or picked him up, my pain levels might start to get bad as well. I love spending time with him, but I definitely need some breaks, so it’s great when my mom and I visit with him together to break it up for me. It’s so sad when the 31 year old needs a break, but the 60 year old grandma does not. I really hope I have energy and stamina for my own kids some day. After we visit with my nephew, we’ll normally go back to my parent’s place where I’ll have dinner with them, relax, and at times spend the night instead of driving back into the city super tired.

When I’m in Oakville I also try and see my best friend who moved back here about a year ago from Ottawa. It’s always nice to catch up with her 🙂

10 PM – I have a bedtime routine just like anyone else’s except I take medication (muscle relaxant) about 30 minutes before bed to help me sleep, and I try to read my book to get the grogginess to set in. My boyfriend laughs at me most nights because I have to sit on the toilet while brushing my teeth for the two minutes – you won’t understand chronic fatigue until you have to sit to brush your teeth! We try to go to bed together, and when we do, he passes out COLD (snoring I might add) about 30 seconds after hitting the pillow, meanwhile, it takes me 30-60 minutes to hit dreamland.

I would LOVE to be able to do much more than this in a day, but unfortunately, if I want to keep my pain meds down, I can’t – it’s one or the other, but not both. A lot of compromise living with a chronic illness 🙂

My weekends vary and my plans really depend on how I’m feeling. If I really want to do something, and don’t feel up to it, I’ll take some pain meds so that I don’t miss out.

I’m lucky to have a boyfriend, family and friends who are understanding of my illness, and don’t hold it against me ever if I’m not able to make an event, or do something around the house, no matter how large or small.

Here are a couple of super cute videos of my nephew from yesterday – he makes me smile and laugh so hard, what a cutie pie. In one he is trying to walk his dog Milton to the park since that’s his normal routine after dinner, but my bro and sister in law are trying to get him into the car to head home for bed.

The other is of him watching Mickey Mouse on TV which was keeping him occupied while my brother got everything organized to head home.

 

What are your thoughts on “The day in the life of Alexis”? Does it seem like I live more like an 80 year old, rather than a 31 year old? lol. Would love to hear your thoughts!

In my next post I’ll discuss a day in the life of Alexis while I’m working, and you’ll notice it is VERY different from the current example.

I now have to get up and stretch as I have been sitting too long and caused a bit too much back pain while hunched over this laptop.

I hope you are all enjoying the weekend, even though it is raining in Toronto!

Thanks for stopping by!

xoxo Lex

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2 thoughts on “A day in the life of chronic pain and fatigue (Part 1)

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