Last week was Easter, and we traveled to Rochester, NY, to visit my family (some of them, anyway). It was a short trip, bookended by two long drives! We had a good weekend, though, and I managed quite well. We stayed at a hotel this time because my father's wife (where we usually stay) is in the middle of selling her house. We managed to squeeze in most of a day with her, dinner with my aunt and uncle (who we missed on the last trip), breakfast with a friend I have known since first grade (!), and a lovely Easter celebration on Sunday featuring our traditional Ukrainian foods and a small group of family. So, that was a short week at home and a very busy few days away!
This week has been spring break for both of my sons, but they have outgrown the week-long trips with mom and dad (unfortunately). Monday was super-busy, getting our college son back to his campus apartment (after refilling all our meds for the week - a 90-minute job!) and getting our younger son and his friends set up with our camper at a local state park for a few days. We booked the campsite for the week, and he and his friends enjoyed the first half. Today, my husband and I will head down there to spend our couple of days at the park. I do miss the days of all of us vacationing together, but I appreciated spending Easter weekend together and am looking forward to a quiet weekend with my husband. I think we need to install a revolving door here at the house!
Whew. Like, I said - busy, busy! Since rain was forecast for today, I'm trying to finish up some work this morning, and we will leave after my nap this afternoon.
Back home on Sunday, and back to a more normal schedule, with everyone at school and work, and five whole QUIET days to myself next week! So, I hope to resume a more normal blogging schedule, too. Enjoy the weekend.
Hello Sue,
ReplyDeleteI enjoy reading your posts, your Easter sounds like it was fun!
Do you ever wonder if your active lifestyle is making your condition any worse? I recently moved house and it was more or less a 12 hour day of lifting and cleaning. A bad idea perhaps considering the moderate CFS/ME I consider myself to have.
Do you mind if I ask you some questions about treatments? I wanted to know if you or your son experienced insomnia when you started beta blockers. My heart rate is a bit on the high side, and while they seem to be helping, sleep is difficult.
I also wanted to ask about the combo of trazodone and nortriptyline you take for sleep. Have you ever been warned about Serotonin Syndrome with these two medications?
Thanks for any thoughts or info, take care
Jason Hockridge
Hi, Jason -
DeleteThanks for taking the time to l;eave a comment. I can't imagine moving with ME/CFS!! My personal nightmare.
My activity level is 100% determined by my limitations & restrictions with ME/CFS, so I rarely crash from doing too much. This is due to 2 factors: after 14 years of this, I know my limits VERY well & stay within them and I increased my activity tolerance/stamina through many effective treatments. Besides the two you mentioned, treating underling infections, inosine, diet, and low-dose naltrexone have also helped. Here's a blog post that summarizes everything that has worked for my son and I:
http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html
No, beta blockers did not cause insomnia for me - usually just the opposite for most people with ME/CFS. When they are taken at bedtime, they prevent random bouts of tachycardia during the night so your sleep should be better (be sure you are taking a very low dose at bedtime).
I have heard of Serotonin Syndrome, but we've had no problems at all with the combo of trazodone and nortriptyline. Both my son and I have been taking those for well over 10 years, and the combo still works great! We both get 8 - 10 hours of deep, natural, normal-feeling sleep every night and wake up feeling refreshed & ready for a new day! We did check our genetic profiles to make sure neither of us has the genetic defect that interferes with metabolism of these drugs (tricyclic antidepressants) - we don't, so they continue to work well for us.
Good luck & let me know if you have any other questions!
Sue
Hi Sue,
ReplyDeleteThanks for your detailed response!
I think I am still living in a ‘boom and bust’ stage with all this. I work full time for starters. I often think maybe I shouldn’t. I’ll have a read of your big post again, it is very helpful.
I’m still struggling to sort my sleep meds to be honest. Also, for the beta blockers (heartrate, anxiety and lots of related symptoms) I have been prescribed 25mg of atenolol, which I moved to morning. Early days, still trying to work out how it affects me. It doesn’t sound like a very low dose does it? Would you start even lower?
On top I have recently developed a cold so it is difficult to know if things are working or not! I’m sure you must find the same!
Hmm, that’s interesting about the tricyclics. I will give that some thought.
Thanks for your clear advice and for writing about your own findings, I’m sure you are aware you are an inspiration to many of us!
Jason
That is common in the early years, Jason - it takes a while to figure out where your limits are and how to stay within them. And you are working full-time? Wow. That alone is a huge accomplishment - not many of us can manage that.
DeleteI wasn't familiar with dosing on atenolol, so I looked it up. Looks like 25 mg is the lowest dose available. However, there are dozens and dozens of other beta blockers, so it the atenolol isn't working for you, try another - always starting with the lowest dose possible. And you might want to consider taking it at bedtime - them it will prevent random bouts of tachycardia at night that can disrupt sleep. And make sure whichever beta blocker you take is a 24-hour, extended-release type. That way, you take it at bedtime, it helps with sleep and you wake up ready to go, with HR at normal rates.
It is also possible that you are just outside of your limits right now, with the full-time work. Any chance you could take a week or two off or reduce your hours temporarily to test out the effects of staying within your limits?
Sue
Hi Sue,
ReplyDeleteThanks for your advice. My boss has offered flexible hours and the opportunity to work from home sometimes. Soemthing I will give a lot of thought to.
Jason