Each month I link up with Sheryl over at A Chronic Voice and these are the chronic illness writing prompts she has set for July.
Writing Prompts for July
- BOTHERING
- DEMANDING
- NOURISHING
- TELECOMMUNICATING
- TOLERATING
Bothering
I was thinking about this only this morning. Since we have been stuck at home because of the Corona Virus I have been bothering less about the little things that used to drive me crazy before. Particularly with my husband not doing stuff. Before I’d be moaning about him not putting up a shelf or painting the bathroom, but now I really can’t be bothered. I can’t really explain it, I thought being at home all the time would be the perfect time to get things done.
But we have sort of developed a more relaxed type of life. I’m not busy getting the kids ready for school or appointments, and we don’t have to worry about visitors. Why not chill out and bother less? In a way, it’s been a lot less stressful for me, I would have done so much of this stuff myself before I became disabled. If I was healthy now, I doubt there would be anything left to do…but I just can’t motivate myself to bother my husband about it. And he certainly doesn’t seem bothered.
Demanding
I’ve found looking after the kids pretty easy, but the school is demanding they do more work. Honestly, I can get my Little Man to sit with me and go through his stuff, but the girls are older, they are responsible for doing their own work. But it seems the more I demand of them, the less they want to do. I’m pretty sure they’d jump up if one of their teachers asked them to work. But they just don’t listen to me. I had a fall out with Boo and demanded that she took her headphones out and listened to me. She wasn’t happy about it.
I try not to be too demanding. Yes, I believe their education is important and I really don’t want them to fall behind. But, on the other hand, I’m pretty sure that they will catch up again once given the chance.
Nourishing
Eldest son is a little overweight, as am I. We don’t get much exercise and since I got sick the weight has piled on through inactivity and medication. Some people say that steroids do not make you put on weight, but I guess that’s because in many circumstances, steroids give a person more energy to do stuff. I have had high doses of steroids on two occasions now, both for six months. Each time I’ve put on the pounds. Then I’ve found it hard to shift them again.
So, I sat down with eldest son and we worked out some healthy meals we’d like to try. If we can’t get out or exercise much (he has an exercise bike) then we can try and lose some weight by changing our diet. In my case it has to be a change because currently I don’t eat very much. It makes sense, if you don’t do much you don’t get so hungry. Not only that but I have some bad digestive issues. So, we are now nourishing ourselves with at least three healthy meals a week and eating a lot more fruit and vegetables.
Telecommuncating
I’m not a telephone person. I don’t like video calls either. I find sitting with the phone against my ear uncomfortable and concentrating on conversations over the phone difficult. I’ve never even tried zoom or face time. It’s just so alien to me. I used to talk to my Mum on the phone until my ears burned, but I really don’t talk to anyone much now.
I’ve found that trying to talk to anyone on the phone these days has become more difficult too. A call to the surgery, or the chemist, or basically anywhere at all for assistance has been a nightmare. I’ve lost track of the hours I’ve spent listening to ‘on hold’ music over the last few months. I’m beginning to hate the phone even more.
I’ve had to give up counselling. I was half way through a six month session with a really good counsellor just before lock down. She wanted to keep in touch by phone, but it just didn’t work for me. I didn’t feel comfortable talking in my own home on the phone. So, I decided to stop and now I’ll have to wait for another chance to continue in the future.
I also have an appointment with my consultant next week on the telephone. It won’t be the first time, so I know what to expect. I will have my ‘script’ in front of me so I don’t forget anything I need to tell him. I’d rather see him in person, but I guess it’s best not to visit the hospital just yet.
Tolerating
I have been tolerating the weather better. Last year I found the hot weather really difficult, but I have managed to get through hot days okay, and slept through hot nights. Colder weather brings me more pain and it keeps changing from hot to cold. Over all, though, it has been fairly tolerable.
One thing I have not tolerated is my pain. Part of me wishes I’d never stopped my infusions. Not that I’d be able to have them right now anyway because of the virus. I always believed that they didn’t help much. But, there are so many differences I’ve noticed since I stopped. I have no chance of getting them back now, but maybe my consultant can help. I don’t know, he’s not really found anything so far that works.
The dystonia on my left side is a regular occurrence now, I get it at least once a day. I’m beginning to think that it’s so regular it’s going to become permanent. That scares me. Losing half of my body is something I would not be able to tolerate. I only manage to get through it now because I know it will pass. It’s scary when you lose control over your body, even temporarily.
I’m also having regular spasms that are becoming worse, they affect my throat, shoulder and chest. Sometimes I find it difficult to breathe and I need help to move me into a position to help me breathe better.
The headaches come and go but they are becoming more frequent. I wake up with a headache and it gets worse as the day goes on, to the point where I can’t wait to go to bed. Then I wake up in the night because the pain is still there. I wake up in the morning and it still hurts. It can go on for days. In the morning it’s tolerable and I can do things, but by evening I’m fit for nothing.
I don’t want to end on a bad note though. My health problems may be getting worse, but one thing I have noticed is that we are tolerating each other better as a family. We have spent more time together while being stuck at home all the time and I thought it would cause more arguments. However, apart from the occasional falling out, they have got on so well. We’ve had fun together as a whole family on a few occasions which is very rare, as usually everyone is off in their own space.
I don’t have to be demanding with my bf he gets antsy when he cannot do things so he has been quite the busy bee around here fixing things and doing things. lol
I get the tell calls with a councillor would not be comfortable over the phone I wouldn’t like that either. I do like calling my doc though… that is easy and quick and I do not have the risk factors of going there. But not with my psychologist. No way.
I am trying an exercise program myself… such as it is with pain and vertigo. Starting with walks in the morning. I have worked up from 10 minutes to just made it to 20 min for the first time yesterday! That takes a lot of time. Eventually I will work up to the exercise bike which is way, way harder and slowly up to half an hour which is my main goal. I can only do it in the early morning when the vertigo symptoms are lower though
Nikki Albert recently posted…A Chronic Voice: July Prompts
I used to get antsy with my husband because he can be so lazy. But I feel more relaxed now.
Anne Sweet recently posted…Word of the Week 27, Family Time
Really enjoyed your post. It’s nice that lockdown has brought you closer as a family and made you less bothered about the less important things. I think that’s a positive to come out of all this, a sense of perspective and appreciation of the little things. Good luck with your healthy eating and exercise too – sounds like you have made a positive start 🙂
Thanks, and although I’m surprised at our getting closer, it really has helped. (well apart from certain times of the month with three daughters if you know what I mean!) I’ve just ordered some more healthy stuff, I’m determined to improve my health by food and exercise now that I can’t seem to find a medication that works.
Anne Sweet recently posted…Word of the Week 27, Family Time
What an honest post – and one that so many of us can relate to. My son is doing his A-level equivalent of exams and I find myself arguing with him all the time about revision 🙁 My father in law and brother in law suffer from dystonia. This is the first time I have seen someone else mention it. Be well. #MMBC
Lisa | Handmade in Israel recently posted…Nir and Jonny
I was diagnosed with dystonia last year, although I know I’ve had it longer. It wasn’t until I went into the consultants room with my left side completely paralysed that he believed me. I’ve almost given up on arguing with kids about school work now, just two weeks until they break up for summer.
Anne Sweet recently posted…Word of the Week 27, Family Time
honest post and can totally understand how you feel X #mmbc
That sounds familiar! My husband is a key worker and since lockdown began we have barely seen him as he chooses to work 100+ hours per week. Work is more important than family for him, leaving me to work through a lot of emotions and find a balance with our children. It has been hard, but I’m in a better place now emotionally. I’m glad you are being gentle with yourself and enjoying the quiet time while you can.
Catherine Green recently posted…Why Self Care is Important when your Spouse is Depressed
Well I’ve genuinely only heard about steroids putting weight *on* for people so don’t be too hard on yourself! But getting more veg in your diet has got to be good thing so i hope it helps you feel better even if nothing changes weight wise- good luck!
I related to your comment that you are not a telephone person – I so am not either! I hate when having to phone someone, especially things like the DWP or anything official! I have tried using Zoom during the lockdown., though, and although I do often find self-conscious and worried how I look, it was nice speaking to other people and helped ease the loneliness and isolation I have struggled with for ages. A lovely post, thanks for sharing!