Yesterday was definitely a time for nesting and cocooning. Another beautiful day, but one tinged with sadness and incomprehension. I didn't leave the house all day, except to walk the dog around the block.
I get sick of trying to make sense of this crazy world. Every time there's an attack, I say the same things to myself and to you. They boil down to a succession of whys and hows and, in the end, of course, I have no answers. Because I'm trying to make sense of it with my rational mind, and terrorism is an inherently irrational act.
So, yeah, I stayed home, and I wasn't exactly depressed or anything -- I just worked in the garden and worked on my journal transcribing project and took pictures around the house. Olga didn't seem to want to go out anywhere. I think she was still tired from her walk the day before.
Deep down, I have been feeling a bit frustrated, though. Dave's health has been dodgy and he's tired a lot of the time, which severely curtails the kinds of things we can do together. He's unenthusiastic about travel or going anywhere or even taking a walk. He spent most of yesterday sitting on the couch plugged into his computer. I'm trying to be supportive, but I'm also feeling a bit like we're being too passive in the face of his Crohn's. We need to have a life, you know? We cannot let this illness tie a lead weight to our ankles. And it's taking a long, long time to develop a maintenance plan through his NHS doctors. We certainly appreciate the treatment, but it's hard to pass the low-energy weeks and months between appointments. (His next one is about a month from now.)
Am I being selfish? Probably.
Some of you mentioned my shirt in the last post -- some disparagingly, some enthusiastically. I'll have you know I love that shirt. I bought it in New York City about 12 years ago, from a guy selling them on the sidewalk on the Upper West Side near the Museum of Natural History. He made it using real leaves and some kind of wax-and-dye process, and I think it's awesome.
I'm stealing my post title from Woody Allen. Did you ever see the movie "Interiors"? It's one of Allen's serious films -- I haven't seen it in years, but I used to love it and its dramatic ending. Maybe I'll rent it this week, one of the evenings when Dave is at a student concert.
(Photo: Our front hallway, showing one of my grandmother's Roseville vases.)
ReplyDeleteThe shadows, angles and light are just great in the photo. And I really liked your shirt (especially the colour) in yesterday's post - I just forgot to comment on it.
Alphie
It must be so difficult for Dave - mustering the energy needed for his music teaching. This must really suck the lifeblood out of him. However, I can also appreciate why at times your patience runs thin. You have such a zest for life and you want to get out there and live it.
ReplyDeleteBy the way, may I hereby humbly apologise for my hurtful remarks of yesterday about your shirt. Clearly, I need an eye test or something.
Hey! That's exactly the kind of shirt needed when the world around you is under attack.
ReplyDeleteAnd it is difficult when your partner in life has limitations that affect you, too. Sound to me like you're being pretty patient.
I'm glad you're expressing your frustration because it means an openness. I'd wager that Dave is doing his best. It sucks to be struggling with a physical challenge and if he's not a complainer you may not even realize how hard it is for him. It's hard for you too. You're a traveler and an adventurer and it's summer again. I have no real suggestions, just the assurance that you'll figure out some kind of compromise.
ReplyDeleteWhen we fall in love and we pledge our troth we have no idea what the years will bring, only a vague belief that we will be the ones to never have to grow old or ill. At least, I think that's what we all think.
ReplyDeleteI know my husband never expected to have to put up with a woman who suffers from various illnesses of the head the way I do. Marriage is not easy and I don't exactly know how any of us manage to keep afloat together and yet, it is a great comfort when we do.
I don't have any answers at all. I just send my love to the both of you.
And hey- that photo is delicious.
a sick mate is never easy on either person. he maybe jealous you are well and able to do the things you do? i am praying his health will improve and his quality of life will improve as well. your support at times will be all he needs to make it thru the day.
ReplyDeletewe all deal with issues of one kind or another. No it is never easy to see the ones we love dealing with something either one can control.
love the shirt...!!
ha. I didn't even really notice your shirt. had to go back and look. I like it. sorry to hear Dave's illness is an active thing. I had thought it was better but then I don't really know anything about Crohn's. I think a lot of people's autoimmune illnesses are cause by our adulterated food supply...GMOs and all the chemicals they add. Our bodies did not evolve eating chemicals. I have no idea what kind of diet y'all have but we avoid nearly all packaged foods, sodas, get our meat from a local market and eat fresh and organic as much as possible. I also understand your impatience. I'm also married to a guy that doesn't like to do stuff, go places but not because of illness. he just prefers to sit on the couch and read. I like to do stuff so I've learned that if I want to do something I just go and do it. I loved doing the river guiding while he stayed home.
ReplyDeleteYou're right. It's extremely difficult to comprehend the irrational. It's also difficult to stand by and have this murder happen over and over again.
ReplyDeletehttps://sciencelife.uchospitals.edu/2016/04/26/why-were-winning-the-battle-against-crohns-disease-and-ulcerative-colitis/
ReplyDeleteChicago seems to be more advanced from what I can find on the information hi-way. Maybe a little vacation there with a medical set up might be helpful. Would be better, in my opinion to try to find advances in Norway, as this country is becoming a Nazi's dream! They are out in full force.
I empathize with the ill spouse situation - am going to go on holiday anyway. It is non refundable. If that seems cold - he planned to go with when arrangements were made- there are so many other's here to fill in what little anyone can do for him. So sorry for you two. I understand how challenging it can be and wish you both the best of wishes. XOXO & Hope to see you in autumn!
It is very disheartening when the one you love can't play with you. This is especially hard with an invisible disease like Crohn's. You can go off by yourself and you should but it doesn't make it easy. It seems like the medical profession is not completely helpful if they cannot give you a pill or perform surgery.
ReplyDeleteLoved the shirt, a sunny day in the park is a perfect day for color.
At the risk of being tiresome by repeating what I said at YP's place yesterday, the explanation I feel makes most sense of the terrorist activities is that they represent the most extreme exaggeration of camaraderie and group-think that young people, particularly young men, enter into as a vehicle to find purpose, adventure, fame, even wealth and women, in their lives. I, too, cannot comprehend why one would go that direction, but clearly many have, and others continue to do so.
ReplyDeleteA chronic illness is exceedingly difficult for both partners, the one with it and the one who lives with it by default. This article makes sensible suggestions (it is for partners of people with fibromyalgia but is applicable to any chronic disease):
https://www.verywell.com/tips-for-living-with-someone-who-has-fibromyalgia-715871 .... and you're not being selfish, it's human to feel as you do. Grief for your way of life together is one of the things addressed in that article. You are a good and loving person, Steve. We can support you, albeit from afar, with our listening ears.
I liked finding out the background information on your shirt - no wonder you love it! Don't listen to YP; he secretly has a closet full of cow T-shirts that say "friggin' right I'm a bovine" on them :)
Id kill for that vase.....
ReplyDeleteAs for crohns....a second opinion?
There are a lot of very wise words expressed here and I couldn't even begin to add to them. I do know that you are a very good person with a very big heart. Your feelings are very normal.
ReplyDeleteI think Jenny's theory on the terrorists is about as close as any rational person can get to that kind of irrational behavior. Even though they are reviled by the world, they feel accepted and respected by their kind. Now if only we could make them realize those feelings mean nothing when you are dead.
Perhaps you should do some reading up on Dave's diagnosis if you haven't already and find some support through others that live with or care for someone with Crohn's, such as an online forum or something similar. Perhaps the docs in your extended family can point you to some good resources. I'm sorry Dave is fatigued and I hope you get some answers. Living with chronic conditions often means taking things a day at a time and shifting priorities.
ReplyDeletePS: That shirt yesterday is a winner...loved the colors.
ReplyDeleteEveryone else has already commented more adroitly than I could have regarding Dave's illness and your frustration, so I won't add mine as it would be the same.
ReplyDeleteI love Ms Moon's word for that photo -- "delicious" which it truly is. LOVE LOVE LOVE. Could hang in a gallery IMHO.
Hang in there Steve!
I don't know if I mentioned it, but I know of some people who are using cannabis medicine for Crohn's disease and for IBS, and it can be enormously helpful. Is there any way you can try to get some for Dave and give it a try? Two websites: Realm of Caring and Leafly could help you to figure out a strain or a product. Or you could private message or email me and I'll help.
ReplyDeleteI thought of you immediately when the latest terrorist attack happened and am relieved that you're safe. I think it's probably the best one can do in the circumstances -- sort of disassociate and keep busy. It's so hard to stay focused and productive and creative these days, not sink toward apathy and depression.
Alphie: Thanks for the reaffirmation re. my shirt! :)
ReplyDeleteYP: I'm sure it IS draining, especially at this busy time of year. I think I would feel better if our summer included just ONE outing that we could do together. We'll come up with something. Don't worry -- I didn't take your shirt remarks THAT seriously. :)
Marty: Exactly! More color!
37P: Dave is definitely not a complainer. In fact, I struggle to know what he's thinking sometimes!
Ms Moon: For better or for worse, as they say! I take that seriously, as I'm sure we all do.
Vivian: He may well be jealous of my health, that's true. Then again, Dave was never a huge fan of taking a walk. :)
Ellen: Dave is very good about cooking from raw ingredients, as opposed to using prepackaged food. The thing with Crohn's is that it waxes and wanes. Sometimes it's mild and sometimes it "flares" and becomes more problematic.
Red: It sounds like the government may try to get more aggressive about prevention, which could be good but could also have its own drawbacks!
Linda Sue: Thanks for the link! It's not the quality of care that's frustrating here in the UK, so much as the pace. It takes a long time to get anything done, at least anything that's not an acute emergency.
Marianne: Yeah, I do things by myself, and to Dave's credit he never begrudges me that opportunity. He's always been a homebody. But it's hard to build memories together when you're experiencing things apart from one another, you know?
Jenny: I think your comments re. terrorism are spot-on and very well described. Young, directionless men are always a problem! It's like gang culture, in a way.
John: I have two of those vases, both Roseville but of different kinds, and I love them! Both from my grandmother. Dave has seen several doctors but that's part of the process we're undergoing now -- evaluation and development of a treatment plan.
Sharon: Yeah, the death factor is what I just can't understand. I mean, I get having religious faith and belief in an afterlife -- although I don't share it -- but wanting to die for your cause is just not something I can appreciate. It's what makes fighting terrorism so hard. You can't work with people who believe they have nothing to lose.
E: Yeah, there's definitely a one-day-at-a-time aspect to this. We've both done lots of reading and we have some coworkers who have experienced similar issues, so we have some support. We're lucky in that sense.
Lynne: Thanks for the comments on the photo! That wall always gets dramatic sunlight -- at least on our rare sunny days!
E: Now I hadn't even thought of cannabis meds. Interesting! I wonder what Dave's doctors would say to that?! I have no idea whether cannabinoids are taken more seriously as a medical option in the UK. We'll read up on it! Thanks for the idea!
Autoimmune diseases suck. There is no other word for it. I try daily to accommodate that shit into my life and I dare not look back and compare what our life was like a few years ago.
ReplyDeleteIt's not easy for a partner and we have gone through some challenges despite all the love and empathy and dedication of 30+ years together.
An autoimmune disease is not something you can fight and get over. Autoimmune diseases are systemic, they sit like a smoldering volcano inside your body waiting to erupt - or not. And all autoimmune diseases carry that burden of fatigue which can hit you out of the blue for a long weekend or just run like a current through your body all the fucking time.
So yes, you can get a bit lost in your own mind and feel sorry about your own expectations and hopes and plans.
And that affects us even if we think we are fine. Because that's what is expected from us, to be fine, to get well, to handle it, to fit in, to make an effort and so on. We expect this from ourselves and from each other and society does the rest. And handling that expectation, comparing yourself to healthy others, consciously or not, adds an extra burden.
What can I tell you? Be honest with each other, accept that Dave's health will always be compromised and unpredictably so. It's a daily challenge, for both of you. But life is in no way less wonderful and exciting and fulfilling. Take a break if you need to, look after yourself as much as after Dave.