I meant to do this post last week for May 12 International Awareness Day but brain fog made me forget the date and I didn’t have the energy last week to write it anyway so here it is today… A week in my life
A little background for those of you who haven’t been following me for very long. For over 3 years now I’ve been living with chronic pain and fatigue as my daily companion. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Pelvic Congestion Syndrome.
I’ve already done a day in my life post, since then I have improved to the point that I try not to nap during the day any more.
What I do in a week
The following is what I did in the week starting Monday 9 May… It gives a good idea of what I do most weeks. The types of appointments and work I do varies week to week and the number of crash days also varies.
I wake up slowly at around 8:30 am noticing the heavy and aching feeling that’s always there. After stretching in bed and slowly getting up I measure the 0.5mL of testosterone cream and rub it into my leg and then slowly get dressed.
After getting dressed, I sit back on the bed and spend some time checking my emails and my to-do-list, and waiting for the heaviness and shakiness to settle enough to get up and make breakfast.
I’m feeling rather out of it today so I take my time doing my weekly budget review and spend some time online reading blogs. The fact that the weather is very wet and cold today doesn’t help my pain levels. I decide to hop in the bath and read until lunch time.
Being a Monday, it’s my day to do a bike ride. Before having lunch I decide to do a 10 minute easy ride on the stationary bike in the shed because it’s too wet to go out. I reheat leftovers and put the tv on while I eat lunch.
I’ve got some work I have to do today so I spend most the afternoon doing that. Again, tasks that would normally take half an hour to an hour to do are taking me over 3 hours.
Before long, it’s 5:00 pm and my brain is like mush, I put the TV back on and only get up to make a simple dinner and to do some stretches because my pelvic pain is flaring tonight.
At around 9:00 pm I get up, take my pills, have a shower and head to bed. In bed, I take some time to review my daily to-do-list and write a short list for tomorrow. Lights out by 10:00 pm.
I don’t wake up until 9:00 am today. Before even getting out of bed I decide to check my emails and my to-do-list because my body doesn’t want to cooperate.
Today I’m heading to my mum’s to help her with her assignment so after getting dressed and having breakfast I drive down there. Most of the day is spent helping mum. When we finish going through mum’s assignment in the afternoon, we go for a short walk and then I sit down and do my weekly blog posts before attending an online meeting for the conference I’m helping to organise.
By the time the meeting ends my sister has got home from her school placement and we head into town for dinner with E and a few friends from his office. Because E was drinking, I drive us home at the end of the night (that doesn’t happen very often).
It’s a late night out for me but I’m in bed by 10:30pm
Ok, so I did a bit too much Tuesday and that time of the month is starting so pain and fatigue are very high today.
It’s definitely a crash day which means I spend most the day in front of the tv not doing much. I do make myself do my 10 minute ride on the stationary bike because some movement helps with pain levels and I order a few things I need online (cat food and my calcium and magnesium supplements). I also prepare the dough for baking bread the next day.
I shower both in the morning and the night to help with pain. In bed by 9:00 pm.
I’m awake at 9:00 am. Fatigue is slightly lower today and I do have a doctors appointment I need to go to. The day starts with a shower and breakfast. I also throw the bread in the oven to bake.
Before heading to my doctors appointment I throw on a load of washing. I drive to town and visit my doctor to get a script I forgot to ask for in my check up the week before. After that I buy lunch and eat with E in his office before I drive home and hang out the washing.
The rest of the day is spent resting in front of the tv, until I shower and head to bed again at around 10:00 pm.
Up at 8:30 am today and I do feel slightly better today. Dad’s over for lunch today so that takes up most my day.
I do manage to send an email out inviting people to a meeting next week for the conference organising stuff and to do a short ride on the stationary bike and a short walk with my sister who is over for dinner.
In bed by 10:15 pm.
After getting up at 9:00 am I head down to mum’s and spend most the day out with my sister op-shopping. I know that I’m doing too much today but I’m enjoying a day out with T while I can.
In the evening, E makes dinner because I don’t have any energy left and I’m in bed by 9:30 pm.
Up at 9:00 am today and throw on a load of washing straight after breakfast. I then sit down and rest for a while before baking a cake. The whole morning is broken down between baking, washing, and doing low energy activities like reading blogs.
I reheat left overs for lunch and then read some of the children’s books I bought yesterday until E’s family comes over for afternoon tea.
I also spend some time prepping for baking bread on Monday and putting together some lego.
I have a bath in the evening after dinner as I’m feeling very achey and end up in bed late at 11:00 pm mainly because I relax too long in the bath.
That was my week last week.
As you can see, my days vary a lot. This was a fairly busy week for me as there were a few days in there where I wasn’t able to have any rest breaks throughout the day at all. That isn’t typical but the rest of it is. I try to find a way to balance work, social, exercise and rest each week.
What does your week look like?
Omg! I have Pelvic Congestion too! Seriously.
In 2013 I was diagnosed with Retroperitoneal Fibrosis (RPF). Long story short: it’s caused the blood vessels going to my kidneys to close, my IVC (inferior vena cava-lower part of my main blood vessel) to completely close shut, and a whole bunch of extra veins/vessels to form in my pelvic area.
I’ve had a total of 19 surgeries starting at age 12. One of which being the removal of an ovary and Fallopian Tube. Ever since, I have the hugest varicose veins all over the right side of my abdomen and below my rib cage, along with pelvic area. (perfect for swimsuit season lolol)
That was Just a short summary- but I’ve never come across anyone who has the pelvic congestion, that I know of anyway 🙂 craziness!
So sorry to hear you suffer from this as well. So far I’ve been lucky not to get any external varicose veins but the ones in my pelvic region cause me to bloat daily to the point that I look 4-5 months pregnant by the end of the day.
I wrote about what Australia was doing ME and CFS Awareness Week: (ok, maybe I wrote it the week before!) https://meaustralia.net/2016/04/14/me-and-cfs-awareness-day-what-are-you-doing-on-may-12/
Thanks for sharing Sasha.
Hi Megan, thanks for sharing your week, it helps somehow to get perspective on my life with ME. I guess we arent doing so bad. Keep pacing yourself. I have a hard time reading, need to figure out how to make the font bigger on my Ipad, that would help! Take care! 😉
You’re welcome. I struggle with reading some days as well. My mum has installed a program on her computer that reads things to her. I’m thinking of looking into that as an option.
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