FIBRODOG INTERVIEW #2- JASPER fibromyalgia

FibroDog Interview #2: Jasper the Island Support Dog

jasper-fibrodog-interview fibromyalgia

Jasper the Fibromyalgia Support Dog

Snout greetings Jasper! Welcome to my second interview for kids and pets who support people with fibromyalgia, chronic pain, and other kinds of chronic illness. Jasper’s parents are famous because his mom and dad make nice things for fibro humans at someplace called Etsy. His mom makes these pretty spoons that all the fibro humans seem to like. I don’t get what you would need a spoon for though, silly humans! 

Please tell us what type of animal you are, your age, and where you live. 

Howdy FibroDog!  I’m not sure cause I’m not what the humans call a papered dog or a shop dog as some are called, I guess, but my doctor at the smelly stainless steel place says I am a hybrid Lubrador Retrievers, meaning I get things back for my mom and dad. I turned 5 years old today! It’s my birthday. My mom and dad made a huge fuss about that, which was fun cause I got way more to eat than usual, and this really strange chewy ball that they stick treats in and I get to figure out how to get them out. I live on an Island on the beach. I love the beach! I think they call it Shone island.
 
Tell us about the humans you support: Do you know approximately how old they are? What do you call them? Mom and Dad? Dude and Lady? Or do you call them by their human names? I know different families have different preferences and I want to be “poriticurry currect.” (Mom told me to say that.)
 
Mom and dad are almost 59. Dad’s Birthday is not very long after mine cause we celebrate mine than all of a sudden we celebrate his! Mom’s seems a long time later when its very cold out. I have always called them Mom and Dad but I have heard some other humans call Dad Phred and Mom Sindy.
 
What is their “Diagonal-orosis”. (Mom says that’s “diagnosis” but I can never say it right.) 
 
Mom says Dad has kidabeatees, which has something to do with his blood sugar and he got it when he was a kid. He has things not work right because he has had the kidabeatees for many many years and it has hurt his body. His tummy doesn’t work right anymore so he throws up a lot. Mom has this fibro thing and she hurts a lot and sleeps a lot sometimes or is awake all night too. She also has this thing making her hair fall out which makes her crazy upset. She calls it hypotroid. I know they both have too many things wrong so I try to be very calm.
 
What kinds of things do you do to help your humans when they’re feeling sore or tired or sad?
 
When dad is sick and his tummy hurts really bad I put my head in his lap and lay very still for hours to keep him company so he doesn’t feel alone. On our walks when I take him out if he gets sick I wait quietly while he is sick and then get him moving again when he is done so he does not get too sad. For mom I warm her spot in the bed until 3:30am when she can come lay down in the bed for a few hours at night. If I am not dreaming too deep I move quietly when she comes in to the bottom of the bed and her spot is all nice and warm when she crawls in. During the day I put my head in her lap while she is sitting in her big chair and smile at her to make her laugh. She has a really big laugh. It almost scares me sometimes!
 
jasper-fibrodog-interview Jasper and

I love taking care of Mom!

What kinds of things do you try to avoid doing so your humans don’t feel worse? Like not jumping on your Mom when she’s hurting? Or not chewing up your Dad’s insulin pump?
 
The biggest thing my mom and dad says I do is to not react when I am laying in the middle if the room and they step over me. This keeps them from tripping because I don’t get startled and move. I guess the last dog that lived here moved a lot and they fell down a few times. I also try really hard to not hit mom with my happy tail. I have hit her before when I get really excited and she gets tears in her eyes which makes me really sad. So when I get really happy now and my tail can’t stay still I run to the other side of the room and stay away from her with it till it quits being so excited. When I wrestle with dad I had to learn how to not get my paws tangled up in his plumbing he calls it that is attached to his tummy. I accidentally pulled these wires out a few times making dad have to go through a bunch of work to reattach all these things to himself and stick a huge needle in his belly again! It scared me so bad I ran and hid in the closet. Never again! Very careful with dad now!
 
jasper-fibrodog-interview Fred with camera

Jasper’s Dad “Phred”

Is there anything else you or your humans would like to say to our FibroFans out there about what they can do to be more supportive of fibromyalgia and other chronic illness?
 
Try to recognize and support those who have invisible illnesses.  Just because someone does not look sick does not mean they are not suffering. Also be aware that their canine companions that wear jackets are working and make sure you ask permission before you try to pet or offer a treat. Thank you for letting me chat with you today FibroDog! You are wuffingly awesome!
 
Thank you so much for answering my furry interview questions Jasper, you’re wuffingly awesome too! And now you’re officially part of my FibroDog Posse along with Lily the Corgi! That’s three of us so far, and more to come. I’m supposed to interview Ghost the Siamese Cat soon but my mom hasn’t sent my interview questions to Ghost yet. I sure wish I didn’t need her to type for me! I’ll also have to get my mom to hunt down that support hedgehog, I’m REALLY curious about that one!
 
Warm fuzzy snuzzles to you and your humans…..      
……..Snout Out
jasper-fibrodog-interview with Mom and Dad 2 fibromyalgia

I Love Mom and Dad!

GUEST POST: TRAVELLING WITH EHLERS DANLOS SYNDROME

Travelling with Ehlers Danlos Syndrome: A guest post from Helen, a fellow WordPress Blogger over at unlockingwords

TRAVELLING WITH EHLERS DANLOS SYNDROME

By Helen Jones

Ok, as promised, I have written some tips for anyone who wants to travel with EDS or a different kind of chronic pain.  This is obviously not an exhaustive list and some of may not be helpful to you, please feel free to share your own tips and tricks below.

When I told people I was going to Cambodia, I got a lot of quizzical looks and “how the hell are you going to cope?”s.  Some of it is bloody minded stubbornness but a lot of it is planning and preparing.  Also, I know that the heat and adrenaline of the holiday will  help a bit.

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Before

  • If you’re going on a tour, make sure you let them know about your condition, any concerns, health and safety risks and your limitations.  They need to know so they can plan accordingly.  They may also require a health check from your GP
  • Get insurance.  Everyone should travel with health insurance but if you have a chronic pain condition it is essential.  I use a UK company called Fish who are expensive but they are OK with me being broken.  I can also declare all my conditions online without having to ring anyone.  I’ve also used Age UK who are very similar to Fish (you don’t need to be a certain age to use them).
  • Get a super lightweight bag which can be carried in lots of different ways – wheels, rucksac and waist/shoulder strap which you can hack on if needs be using climbing clip things and straps from other bags.  My bag is an Osprey one which has wheels and a proper rucksack back complete with waist strap (this makes all the difference to me).  It also has a day pack which zips onto the main bag and is all incredibly light weight.  It also opens along the length unlike a rucksack where you open at the top so there is less rummaging around in your bag and accidentally dislocating your finger whilst you search for clean underwear.  It was expensive but mine was half price in the sales and is well worth the investment.
  • Make sure you have enough of your medication and pack it in your hand luggage.  You might need a drs letter depending on where you’re going and what meds you’re on.  Don’t change meds last minute – I did and it added to the stress!  Again, depending on the country and your meds, you may need a license to enter.  For Cambodia and Thailand, I needed documentation from the Thai and Cambodia government to take in morphine.  Allow plenty of time for sorting this out before you go.  The appropriate embassy is the best place to start for advice about this.
  • Pack slowly over a few weeks. Don’t try and cram it all in in one day, slowly put yourself a list together and slowly tick things off as you add them.  No point in starting a flare up before you’ve left the house.
  • On a similar note, plan rest before your holiday.  When I went to Cambodia, I set aside the two weekends before for rest and this made a huge difference to my pain and energy levels.
  • Contact the airline to let them know about any food restrictions and ask for wheelchair support.  This is amazing; you will get pushed from check in to plane then onto your next plane or to the taxi rank.  It may feel embarrassing or you may be reluctant to ask for help but why waste your precious energy and walking ability to go round an airport, save it for going round the coliseum etc.  Also having wheelchair assistance means you don’t have to carry your bag.  My shoulders and hands hurt less because I was able to put my bag on my knee (which is heavy because it’s filled with meds). At the airport, once I reached my airline I had help with my bags, I bypassed the queues and they bought the wheelchair to me instead of asking me to walk back to the assistance people.
  • Similarly you should contact the train station if you haven’t got anyone to help you get on and off the train. Having some visible sign of a disability seems to help as well… This year I was travelling with knee splints and a crutch (my other splints are mostly hidden) and I’ve had far more help. There have been idiots as well but the kindness of strangers has been great. I had people helping me to get my bags on and off the train, offering to put things in the overhead racks. The station staff let my friend through to help when I was struggling with my bag.

During

  • Take a blanket and a pillow, it will vastly improve your flight.  Yes long haul flights provide blankets, but they aren’t warm and they won’t help in the airports.  A blanket can be used to make airport seats more comfy, less cold etc.. A blanket also helps hotel beds become a bit more comfortable – lay it under the sheet or use it as a pillow.  If you’re travelling between places, use your blanket or bag as a footrest if you’re short, keeping feet and knees supported will help comfort and pain.
  • Wear comfortable clothing to fly in, including shoes you can slip off easily so when you’re on a cramped plane, you can kick them off and push them under the seat.
  • Take heatpacks, tubigrip, spare splints, whatever it is that helps a bit, it all adds up. Safety pins are very useful – things happen unexpectedly, splints break, clothes break and safety pins fix.
  • Take a bear, some things will be tough and you’ll need a hand to get yourself up and going again.
  • My tablet was really helpful.  I loaded it up with tv programmes, audio books, kindle books (as well as taking my actual kindle), I wrote my holiday diary on, took the odd photo on it.  If you need emergency info about something most places have WiFi somewhere.
  • And on that note, take a kindle, do not, I repeat do not, waste precious spoons (not heard of the spoon theory? Check it out) on carrying books around.
  • Readjust your expectations, you will not be able to go everywhere and do everything in your destination.  Pick and choose carefully.  One of my favourite days when I went to Bali was slowly walking to the art museum, slowly pottering around the beautiful gardens it was in, then coffee.  Followed by lunch in a local cafe with a seat by the street so I could soak up the sense of the place and people watch.  Then I headed back to the hotel via the market and had a nap whilst it rained outside.  It was a lovely relaxed day and I did what I wanted to do on my schedule and made use of the weather so I didn’t feel like I was missing out.  When I met up with the rest of my tour group, they had all got drenched in the downpour leaving them a bit miserable so I definitely got the best out of the day!
  • You know your pace but I find it helps to go with realistic expectations.  I know I can’t join in evening activities and daytime things so I choose day time because that’s more important to me.  This does mean I had more room service food and less time with the rest of my tour group but at the end of the day, my limits are different to a lot of peoples and I can’t keep up.  I have to choose what’s important to me.
  • Don’t rush round doing everything as soon as you get there – you will crash.  Instead, head to your hotel and relax, sleep, whatever for a while.
  • The issue of toilets…. The time in Cambodia where I was wearing a long skirt, had my crutch, had awful leg pain and had the toilet was a hole in the ground… Ah that was a challenge! Depending where you go toilets may include squatting toilets or literally a hole in the ground, think about how you can cope.
  • Postcards – if this is stressful or painful, don’t send them, or only send a few. You could email a photo instead.  Don’t feel obliged to ruin your holiday to keep friends and relatives happy.
  • I wore UV arm covers to put over my splints, bought from eBay.  When I’m in the UK I wear cotton or wool arm warmers, partly to hide the splints and partly because the velcro sticks to everything and irritates me.
  • If massages help. treat yourself, you’re on holiday after all!

After

  • Plan time to rest after your holiday.  If you work, book a few extra days off, you will benefit hugely from it.  Again, I book out a couple of rest weekends after I’ve been on a long trip, or, if it’s a short trip, just the one weekend.
  • If you’ve taken photos blow them up and put them near your bed or sofa so when pain gets you down  you can look at them or frame a piece of art you picked up.  Make sure there are reminders of the trip.

Final words of advice… enjoy yourself!

This entry was posted in Ehlers Danlos Syndrome and tagged , , , , , , , , , ,, on April 11, 2015.