Managing chronic illness: I'm curious... - CHADD's Adult ADH...

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Managing chronic illness

Cupressaceae profile image
7 Replies

I'm curious if anyone has experience managing a chronic illness while dealing with add as well. So many of the management suggestions I see are far too overwhelming with recording a ton of information (food, activities, symptoms, etc). I know it's important, but I also know that I can't reliably keep track of things like that. I'll do it for a week or a couple days, but then I wont for months. It's too many things to track all at once.

Any tips for recording this important information without getting overwhelmed? I need to get a handle on these things and so I don't worsen my condition by over extending myself, but just getting started stresses me out.

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Cupressaceae profile image
Cupressaceae
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Fred_2018 profile image
Fred_2018

Yes I have Chronic pain and ADHD. I’m a lot like you. I start for a week or 2 then I stop doing it. The only thing I’ve found helps is using my calendar on my iPhone and taking notes by speaking to Siri. If you have an IPhone use Siri to remind you about doctors appointments or anything in that nature. I do door to door sales and being reminded to do something is essential to my Success. I am lost without it.

Cupressaceae profile image
Cupressaceae in reply to Fred_2018

Thanks for your response. It's helpful knowing I'm not the only one, honestly.

I'm trying out using a phone app for recording symptoms. I don't like the iphone calendar, since I'm a paper calendar person. I always get appointment cards, and I love it when providers will text or call a day or two in advance. I also usually try to schedule appointment on the same day of the week/same time, to reduce my likelihood of forgetting when they are.

Emready profile image
Emready in reply to Cupressaceae

I also use alarms on my phone to help me but for things like meds I also have to have a written system that is quick and easy to track so I can see how well the meds are working or of i haven't been taking them properly. I will try to post something aoon on my med tracking. Its reply just marking the pill bottle and keeping a sharpie in the med cabinet.

Cupressaceae profile image
Cupressaceae in reply to Emready

I already use alarms to remind me when to eat, and I used to have them to remind me when to shower if I wanted to go to bed on time, so using them for meds makes sense. I am interested in seeing your med tracking method.

Emready profile image
Emready in reply to Cupressaceae

I just posted it a little bit ago. Let me know if you can't find it.

Tennesseeman profile image
Tennesseeman

I wish I could offer some good advice but I can't! I have severe arthritis. I can walk and get around with the help if a cane, back brace and two knee braces. I have been taking pain meds for just over 12 years. Without them I couldn't get around at all. Now at 71 years old I rarely leave the house. My diagnosis & testing 3-4 years ago revealed AADDHD that was literally off the charts (the top number of severity was 12 and I scored a 14). A psychiatrist I went to for depression noticed symptoms, A trained psychologist tested me and I was then referred to another psychiatrist whose speciality is ADHD in adults. He's trying to work with me but Adderall doesn't seem to help and just try walking into a pharmacy to fill a prescription for Adderall and Pain Meds. My predicament is simply: Physically I can't Walk and Mentally I can't Sit still!! Life's a Bitch!

Cupressacae! You’ve literally asked the same question I’ve been thinking of the last couple of days.

I’ve got Haemophilia, Hep C from contaminated blood products,

Myocarditis, no spleen, arthritis and the list goes on! (Suddenly had an image of that scene in jaws where they’re comparing scars) : I find it really hard keeping track of all the appointments, meds and all that. In fact I missed one today and got a very terse text message from the local Doctors warning me that if I miss another appointment I will be withdrawn from their registration.

As has been mentioned Siri is brilliant! I put all my appointments in that with an alarm the day before and the morning of the appointment. But even that’s not perfect because it relies on me remembering to charge phone, remembering where I’ve left the phone, remembering to turn the volume up. The list goes on. But it has been a great help.

All my clinical teams have devised an arrange of apps to record symptoms and treatments. But like you I forget to fill them in. When I go for check ups they seem very put out that I’ve failed to use in their words ‘ a simple system designed to help people like you’. Very frustrating.

I don’t know if you know the term ‘belt and braces’ from where ever you are from. My first action is a phone reminder (Siri). Secondly I have a large wall chart for appointments. This for me is the least effective because over time it just ‘melts’ into the general background. Thirdly I explicitly ask the medical staff to text me or call me to remind me of appointments the day before. If all else fails and it’s a really really important appointment, like one I’ve been waiting for or had to battle to get, I order a taxi to turn up on the day and literally bang on my door to take me there.

Medications: I do have certain routines that are now unconscious. For example having a coffee first thing upon waking. The cupboard door has a printed out list of instructions for my meds for the day. I open the cupboard to make coffee and in big letters is my meds reminders. I glance at it, sigh that I need such a thing, and then check Siri alarms for the day.

It’s a total ball ache. A massive complication. But with practice, almost like a child, it becoming second nature. I’m mostly on top

If it all nowadays but sometimes mess up. I actually think I’m probably more engaged and responsible for my health than someone without ADHD. All these things were done before diagnosis.

But I totally understand your difficulties. What works for me might not work for you? I’ll tell you one thing tough. I wish I was rich enough to have a P.A that took care of these things! Good luck my friend. Keep experimenting.

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