chronically resourced

So I found this and sent it to her. Because this is what they want to know: how badly is this pain affecting you? Not on a scale of “nothing” to “how I’d imagine it’d feel if bears were eating my still-living guts while I was on fire”. 

10 - I am in bed and I can’t move due to my pain. I need someone to take me to the emergency room because of my pain.

9 - My pain is all that I can think about. I can barely move or talk because of my pain.

8 - My pain is so severe that it is difficult to think of anything else. Talking and listening are difficult.

7 - I am in pain all the time. It keeps me from doing most activities.

6 - I think about my pain all of the time. I give up many activities because of my pain.

5 - I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.

4 - I am constantly aware of my pain but can continue most activities.

3 - My pain bothers me but I can ignore it most of the time.

2 - I have a low level of pain. I am aware of my pain only when I pay attention to it.

1 - My pain is hardly noticeable.

For example, if someone asked me how much pain I’m in at any given time, I’d say hardly any, and yet I’m apparently at a chronic 2.5, and it only goes up from there depending on the day. 

10: can barely move; can’t talk

9: can barely move; can talk

8: can move, but can’t do much more than watch TV

7: can watch TV and play a game on my phone simultaneously

6: can do work on my computer lying in bed

5: can get around the house, but definitely couldn’t go out

4: can run a light errand

3: can get in my 10,000 steps, making my fitbit happy

2: can do three or more activities in a single day

Hey!

So. Originally this was going to just be a quick little post where I shared four databases I've found that really help me when it comes to updating my resource. However! In doing that, I discovered more??

These are essentially sites that collect a big list of different disability aid suppliers, specialists and support services across different countries and continents and then list them all for easy access.

And now I'm listing them here so you can access them! 😁[grinning face emoji]

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Assistive Technology Australia: Australian Database Personally, I quite like the little pictures they use for their categories. I think it's quite well organised, although it took a little while to get used to. This site is in English.

Canadian Disability Resource Society: Canadian Database I found this site just a little harder to use than some of the others, but after playing around a bit I got the hang of it. I like that you can search by specific keywords and postcodes. I think the contact details are also very clear, and there is an online chat function if you run into any issues. There are extensive language choices for this site.

Disability Info South Africa: South African Database Just going to put a quick warning for potential eye strain and/or flashing lights here as there's a moving graphic on the home page. However, I really like the fact you can change the font size and contrast of the page. I do think the site is a bit wordy but it's so good; there's a lot of information and advice on here once you know where to look. This site is in English.

EASTIN: European Database This might be a bit difficult to use at first, but the search function on this site is so specific it's honestly incredible. It acts as a big data hub for disability aid databases across Europe. Also, there are extensive language options for this site, including mostly European languages, Arabic, Hebrew, Chinese and Thai!

Handicat: French Database Again, I like the little pictures for the categories. It gives a good visual representation of each area before you've even read the category title. There's also a little tool that lets you search by trade name, the type of product and the manufacturer. This page is in French.

Hjælpemiddelbasen: Danish Database Or, AssistData. This site lets you search for disability aids by purpose/classification and target group (i.e. disability). It also offers guides on choosing and maintaining different items. I like that the search function also has the option to include discontinued items. You can change the language of this site to either English or Dansk.

Living Made Easy: UK Database Or, the Disability Living Foundation. This was actually the first one I found. The organisation system isn't as specific as some of the others but I quite like that everything is still separated by category, and it's not too overwhelming. This site is in English.

REHADAT: German Database I really like the organisation of this site, but I'm going to put a warning for potential eye strain here as some of the blue graphics are a bit faded and hard to see despite the dark background. As well as assistive technology, this site also offers information on things like disability law, education, employment and financial advice, and addresses and contacts for additional support services. You can change the language of this site to either English or Deutsch.

SIVA: Italian Database I think this site is a little confusing, but I like the guided search and advanced search functions. You can really get down into the specifics of what you're looking for. You can change the language of this site to either English or Italian.

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Unfortunately, there were a couple of extra databases that I couldn't access, but if I find any others then I will update this post.

They're also a database for disabilities that you can search by need, location or disability. They also list community and disability hubs so if you aren't sure what you need and want to talk to someone you can find them there too.

As I mentioned last week, I'm expanding Chronic Illness Resource Library! I decided to start with adding BlueSky to the mix so if you know someone who doesn't do Tumblr or who is more active on BlueSky, the link is below:

I'm also looking into SubStack for phase 2 so keep an eye out here for future announcements on that.

I've launched a Ko-Fi page for CIRL so if you have a dollar to show your support for my efforts, you can drop it in the tip jar here 🙏. These tips will go towards paying for subscriptions and services that help me do this work.

Adding Substack to the mix is still on the cards but I plan on keeping all my posts there free-to-access — chronically ill people don't need any more pay-walls getting in between them and important information — so this Ko-Fi will likely continue to be the only way for people to support CIRL.

For people new to migraines or who want to make sure they've covered all their bases, this article by the Mayo Clinic runs through a bunch of things you can do to reduce the number of migraines you have and lessen the pain when one does appear:

"Try temperature therapy. Apply hot or cold packs to your head or neck. Ice packs have a numbing effect that may ease pain. Hot packs, heating pads, and warm showers or baths relax tense muscles."

"Sip a caffeinated drink. In small amounts, caffeine may relieve the pain of a migraine as it starts. Caffeine also may boost the effect of acetaminophen (Tylenol, others) or aspirin in easing pain..."

"Aim for regular sleep hours... If you nap during the day, keep it short. Naps longer than 20 to 30 minutes can make it harder to sleep at night."

"Create a peaceful sleep space... Try to avoid watching television or using a computer in bed. If your sleeping area has a door, closing it at night can help. Try using a fan or other soothing sounds to muffle outside noise."

"Don't try to force sleep. The harder you try to sleep, the more awake you'll likely feel. If you can't fall asleep, read or do another quiet activity until you become drowsy."

"Check your medicine. Medicine that contains caffeine or another stimulant, including some medicine to treat migraines, can make it hard to get to sleep."

It's quite common to have comorbidities with fibro. One study estimated approximately 68% of people have at least one comorbidity.