As you've probably noticed, I haven't posted for a while.
After Christmas at home, which was very relaxing (I recovered from a 6 day stomach flu just in time), at the end of December into early January I made the journey to Southern Ontario to visit family.
It was a very difficult visit. While my family knows I'm sick, they are not always understanding of how sick I am. I often have to endure ignorant and insensitive comments and I'm encouraged usually to "do more" and "push through". (The exception is my mother who seems to understand that push=crash). I usually visit my brother and his family (they have a 6 and 7 year old) and my parents, who are getting on in years and struggling with their own health issues lately.
At my brother's I pushed myself considerably to play with my niece and nephew and visit. There were several times where I just collapsed in the basement guest room in private tears wishing I was home. I had trouble sleeping and got sicker the 4 days I was there. On top of it, they were priming and painting the basement rooms adjacent to mine - can you believe it? I don't think they have a clue how ill I am and that while I don't exactly have multiple chemical sensitivity, fumes can exacerbate my symptoms. After more than 9 years of being ill I no longer attempt to have them understand, but I was a little surprised to say the least.
By the time I left my brothers I thought I had an awful cold. My throat was so sore I could barely swallow and my body so achy and fluy. However, it turns out it was just the M.E. (I think) because no congestion or cough developed and some rest eased the symptoms although I endured a few days with a low grade fever (around 100).
My stay with my parents was more restful, but still stressful as there are some real issues there. Also, one of my parents smokes continually and that is difficult - I react badly to the smokey air.
On the positive, I was happy to have spent some time with my niece and nephew. That was very fun and they are such sweet kids. I love spending time with them - we always have such a good time. My brother and I got a little visit in and I did get some small pockets of quality time with my parents.
However, it was at the edge (or more honestly over the edge) of my capabilities health wise and not having adequate rest and continually trying to ignore how sick I felt in order to attend to all the other needs was tricky and doesn't make me want to visit again for a long time.
It seems that my parent's needs will only grow in the next few years and I wonder how much a chronically ill daughter can do for them? Another area of my life where I feel that I'm useless and/or inadequate to the task.
I'm very very much looking forward to these hours in bed recovering over the next week or so.
And over the next couple weeks I want to set some realistic goals for the year ahead.
Oh, boy, upnorth. I cannot imagine having to deal with the normal problems that traveling and not being in your own home brings besides ADDING things like second hand smoke and pain an primer fumes. Yikes! So sorry your family does not understand or accept your limitations. What is is about family?!? My daughter told Joel a few years ago that before I got my diagnosis for Lyme she never thought I was really sick..that I was just depressed and anxious. I am not so sure she believes me now either. It seems easier for those who are not connected to us to accept it. I am so glad your mom understands. What a gift for you to have her getting it more!
ReplyDeleteHow fun to play with your neice and nephews. Fun memories there!
Wishing you days of rest and quiet and swift healing from your trip.
I wonder if the glands, sore throat, etc. are from the exposures to chemicals? That is one thing I get from exposures as my body fights what it sees as dangerous.
Sweet dreams and restful days to you....
Renee, the glands/throat issue is always with me and is worse the worse the M.E. is....infact, my NP thinks I've prob. had swollen glands for 5 years straight!!! However, the severe throat (that I almost thought was strept) could very well have been triggered by the fumes...it would be a newish thing for me but not surprising. I do think it all goes back to the M.E for me which is very viral. I am also very sensitive to any prescription drugs...which makes my specialist think I have MCS....but I don't get the severe reactions you and others with MCS get.
ReplyDeleteOh, so sorry for your difficult holiday visits. of course, I understand and have been through similar times myself. It is so hard to be away from home for us, away from our own beds and our normal routines.
ReplyDeleteI know just what you mean about being with your niece and nephew - it's the same with mine (they are now 9 and 5) - ever since they were babies, seeing them has lifted my spirits, no matter how sick I am! Kids are great.
So now, you have the right idea - rest, rest, rest. Just take care of yourself and pamper yourself with as much rest as you need - no stress, no worries. When you are feeling better, you can consider the year to come. And you are right - hope is a very powerful thing, so hang on to that!
Here's to a happy and healthier 2012 for you!
Sue
Hi Upnorth -- I can so relate to what you have written here. Some of my family have this exact attitude but more so close friends. It's so frustrating for sure. I never know whether to push ahead as you have done or to let them see me as I truly am. When we push ourselves and take part in all these things, they don't realize how sick we are *after* all the socializing and what price we pay for being so active. If they could only see.
ReplyDeleteI hope you're able to get some rest and have a healthier year ahead!
Hi UpNorth,
ReplyDeleteWhat a grueling visit, but with some wonderful aspects to make it worthwhile, well, for once in a long time. I really can't figure out how to manage travelling. Did you fly ? I've maintained several friendships with people who live far away, since we rely on email. Closeby friends have drifted away. OH, I wanted to thank you for that great booklist.
"Push through," to what !!! Just more of the same but worse. Oh my. Well, I"m glad you are back home safe and sound, comparatively speaking. Happy New Year (we all need a better year), Leah
Thanks Sue, I'm hoping to set some realistic and positive goals. I'm on medical leave now until summer, maybe fall so I want to use my time wisely, even if it just means a more concious rest schedule.
ReplyDeleteAt Home on the Rock, they have seen from time to time (family) how I crash...well at least my parents have. I have some empathy in that it's a hard thing to get from the outside....but I do feel very unsupported sometimes. It's hard enough to begin with not being able to do all the things I want to and then being treated as if it's partly by choice just twists the knife in further. Sigh...I'm grateful for the supportive people I do have in my life all the more.
Leah, travelling his super super hard. I ALWAYS crash after driving any distance so I fly or have someone drive me. In this case it was a flight and even that was hard. Esp. as my OI is much worse these days I had a few close calls with the dizzy spells. I wish I could let go of my pride and take "assistance" at the airport. I hope you have a better year too in 2012....I agree about the long distance friends. Sometimes it's easier. I've found that the unsupportive friends have weeded themselves out however, I've been surprised by some really compassionate and fierce friends too who have stuck by me.
upnorth,
ReplyDeletethis is hard one. my own experience is also very helpless - my mother passed away over a year ago and i didn't not go back (china). i simply could not do it. mission impossible. as matter of fact in 2007, my almost full recovery from the years chronic problem was destroyed in vain by my trip back to china. so this time i finally put myself (my health) above obligation. of course all my relatives did not understand this. for a chinese, "filial piety" is the number one morality. so i am a sinner. well, i still had to take care of my body, so i still sleep well.
guess i finally learned to be selfish - well deserve what i had been accused for.
It's nice that you "get it" Yun Yi. I feel mixed about it - travelling etc. I want to see family, and yet it's hard esp. when they don't understand how ill I am or the toll it takes. So sorry to hear about your mom, that must have been really hard. And I don't have to travel 1/2 way across the world my goodness!! No doubt that set you back.
Delete