#multiple sclerosis month

[omsdoortodoor]

OMS Door to Door Challenge departure date minus 17 weeks

Quote of the week.

“Give a man a fish and feed him for a day. Teach him to fish and feed him for a lifetime. Teach a man to cycle and he will realise fishing is boring and stupid”  Desmond Tutu.

Ian's week

Contrasts.

This last week saw contrast in where I cycled. On the previous Sunday my friend Andrew dropped me off at Black Cat near Bampton so I could cycle home, a fairly short route of 10.5 miles but with a couple of decent climbs.  On the Thursday Jane & I along with the dogs headed off to the Gower Peninsular in Wales for our annual camping weekend with friends. This was after carrying out emergency repairs to Pete & Carol’s trailer tent so that they could join us.

Friday saw me go on a 15 mile ride, passed the Britannia Inn at Llanmadoc to Llanrhidian.

I then turned right towards Reynoldston, along the road through the centre of Gower with its challenging climb to the point where you can see both coasts.

The views are fantastic and remind me a bit of Exmoor, especially with the additional hazard of cattle & sheep wandering across the road without looking. Someone needs to teach them the Green Cross Code!. I then passed the King Arthur hotel before joining the Port Eynon road for a short while before heading back to the campsite through Burry Green.

Later that day we all set off to the beach at Llangenneth. I cycled both ways. A short cycle, but with a climb in each direction.

On the Saturday I rode a similar route but extended it to over 20 miles by going out to Three Crosses and joining the B4271 back across Gower to Reynolston.

Cycling on the Gower was fantastic, I loved it, it was challenging, great training & as Desmond Tutu states, better than fishing.

Jane’s week

So very pleased to be able to bring you the promised interview.  I just needed a quiet few minutes to think through how I was going to up load it.  Thank you once again to our interviewer Claire.  Enjoy.

Purchase of the week for Celeste was ‘Ear Defenders’ for Celeste (wingmirror protectors).

I now feel less likely to face a rather expensive repair if someone catches our wingmirror. Having no rear view mirror (although there is a reversing camera) I also don’t want to loose some of the drivers view.  So with the new equipment we had a great drive down to Gower.  Our new super duper Sat Nav/Dash Cam beeps all the time: video saves, collision warning (when someone pulls in front too close not because I’m dangerous), 70mph, speed camera ahead, sharp bend ahead (on a motorway!).  Good news is I reckon I have cracked driving Celeste, I just need to get used to the length when pulling back in after overtaking.  Ian will be pleased when he can stop having to shout ‘CLEAR’ so I know when I can complete the manoeuvre.

But the big challenge for me was to set up Celeste once we arrived at the Campsite all on my own.  So Ian had the luxury of just standing and watching which I pulled things out of the ‘garage’, cranked up the awning and then hit the windbreak poles into the ground.  We have three windbreaks, which are needed to give our dogs a safe space.  I managed one of three before I had really had enough.  I was really pleased with my effort.  I just need to build up my strength and I am already on a strength improvement programme (thank you Sarah Grey - Pilates South West and Martyn Phillips – Phoenix Endeavour).

We took the dogs to the beach, and it would have been the perfect opportunity to use those dog drying bags we bought. But we left them at home, so here is a photo of the dogs anyway enjoying one of their walks.

And finally, I can't complete this blog without a photo of the Northern Lights. What an experience. My number one bucket list is now ticked.

So we feel that our preparations for the 950 miles cycle challenge are going well. I what we are doing has inspired you, we would be so very grateful for any donations towards Overcoming MS. Our justgiving page link and training route are here.

Thank you Jane & Ian

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

[kikingback]

This Pride month didn't start exactly how I predicted 😅😂

I'm currently (and just provisionally, don't worry!) on my wheelchair again, due to a bad relapse of my multiple sclerosis, BUT it doesn't mean I don't get to show off my flags ✨✨

It's a good time to make people aware of the huge (both material and cultural!) barriers the disabled LGBTQ+ community has to face everyday. There's so much work to make sure we're not forgotten, and we have the right to feel empowered in our true colors ❤️🌈

Happy Pride month to everyone from your friendly neighbourhood Kiki 🏳️‍🌈🏳️‍⚧️❤️🧡💛💚💙💜🤎🖤

[rebirthgarments]

July 1st- Virtual Fundraiser Dance Party and Auction for Palestinian disabled mom Nara!

Put on your swimsuit and Zoom from your bathtub, shower, a body of water, or from the comfort of your bed for Nara’s Virtual “Pool” Party - a 2 hour virtual accessible dance party hosted by Sky from Rebirth Garments on July 1 from 7-9pm CDT ! Get tickets + bid on the auction at givebutter.com/naraparty

Nara is a 33 year old disabled mom who has MS + Pancreatic Cancer due to complications from a white phosphorus attack in 2008. Her and her husband have 7 + 13 year old kids who are obsessed with my dog and make songs and drawings about her. This party/auction is to raise money for ongoing survival funds while the border is closed. They are currently all very sick due to contaminated water, and need to be able to buy clean water and fresh vegetables.

More party info: Dance to beats from DJ @QueerShoulders Featuring selections from past @RebirthGarments fashion performances. We will be hyping up Nara’s fundraiser while talking about all 64 art pieces + services in our auction that you can bid on!

bid at givebutter.com/c/naraparty/auction

Access Info/ Access Doula’s: Audio Description: @moira670 Sound Description: @xxAlexaDexaxx and @TSuhh Zoom Support: @invalid_input404 Auto Captions available! It will be hosted on Zoom, get a ticket to get the details! All ticket money goes towards Nara’s family because our DJ + Access doula’s are all volunteers!

$0+ up sliding scale tickets! Feel free to also send dough-nations to the link too!

[image description: A digital drawing of @DianeDianeChery , @Cqqchifruit , Van and Sky of @RebirthGarments in a bathtub with big bubbles all around them and a giant rubber ducky inflatable! They are all wearing different kinds of Rebirth Garments swimsuits with black and white triangle print and neon trims. The background is of aqua square tiles. A drawing of Nara, a 33 year old mom wearing a purple and black hijab and oxygen device, by @K8deciccio is in the foreground in the right corner. Text reads: “‘Pool’ party Nara’s Virtual Accessible Fund-raizer Bathtub Party and Auction! get tickets & bid! givebutter.com/naraparty July 1 from 7-9 pm CDT” the text is in purple bubbles and there is a QR code that goes to the link in a bubble]

[noisyasalways]

does anybody have a discord server for ppl w physical disabilities thats JUST for ppl w physical disabilities?

i just need to be in a space where the people there understand these things. ive been searching disboard but its been hard to find.

let me bitch about my difficulties moving and living in a world not physically built for me and not be either a bummer or an inspiration

[thebeesbox]

Day 42 of Pride Flags Drawn as Foxes: Multiple Sclerosis (yes it is technically a symbol not a flag but I couldn't find a flag)

[pyxisspeaks]

Uhg getting admitted to the hospital is the worst.

[cray-cray-anime]

One thing I hate hearing when people talk about disabled adults is smth along

"They're actually a child on the inside"

Ignoring that scientifically can't be a "kid" on the inside. Like trying to compare them being disabled to being a child. It's just so patronising to disabled people and such a wrong way to think about children.

Whether it's neurological or physical or both, being disabled adult will never be the same as being a kid.

One needs support because they're still growing, the other needs support because they literally physically/mentally cannot.

Heck, even this infantilising disabled ppl happens where they talk and act like they're a little kid.

Help them unesscarily when they didn't even asked. Or stopping them from doing things they're capable of doing. Or talking slowly and loudly or not even bothering to talk to them and talk abt them like they're not there.

[intentkitten]

The fridge M (she/them/their/theirs) stores bulk frozen foods and prepped meals for their kids went out, ruining $750 worth of food. So their monthly medical budget went to replacing food for their children.

Please donate.

Intentkitten.gay is a quick link to the gofundme account. Or send funds directly to

Venmo SojournerT91

Cashapp $Mo2391

Paypal.me/niconiche and I will send the funds directly to M from my account. She doesn't have PayPal

$40 today would help them get food ordered so she can eat

[omsdoortodoor]

OMS Door to Door Challenge Departure date minus 19 weeks

Ian's week

Training & a trial run.

The first training ride this week was the Culm Valley loop again, it felt hard but when I got back, I had completed it three minutes quicker than the previous time.  This would explain why it seemed harder.

The second ride was a trial run of part of the first day of the ONS Door to Door Challenge.  We had lunch at the Sun Inn near Dorchester and I cycled about 23 miles to the Bakers Arms at Lytchett Minster.  This is a possible first night stopover, being very close to the ferry terminal.

A bit of a pub theme developing, I think!

It was a good ride through interesting countryside and villages, but very flat which meant I kept up a good speed.  But the disadvantage of a flat terrain is that I had to pedal all the time because there was no downhill section to rest on.

Jane's week

Crash and Burn

This has been a week of two halves, great fun but with massive consequences.  Will I ever learn?  At the start of the week, I was away with some friends near Bicester.  Get a few ladies together and there was a fair bit of singing and general larking around.  Such as teaching each other how to Moonwalk (I learnt that), trying out front rolls (I declined trying that) and trying out the Worm dance move. 

I paid for that one the following day and stayed at the house to have a quiet day.  A wise move as I felt much better for it.

Monday was Vitamin D test day.  I test myself twice a year.  I could get an annual test on the NHS, but with UK weather it seems to make sense to me to do one in the spring as the UV is increasing (believe it or not we had UV 4 the other day), and also to do one in the autumn to see how my Vitamin D levels have been through the summer and what the starting point is for the winter.  I can then make a judgement about how much I need to take to try to maintain it at a level in line with the OMS programme. It’s a really simple process, but I am a bleeder and a wimp.  Before I knew it, I was dashing to the sink to stop everywhere becoming covered.

I had a great swimming session this week with friends, great Pilates on Thursday and Friday and in the afternoon Ian and I were interviewed for our blog.  That will be coming in next week’s blog.  But then I started to feel fatigue and decided not to go out as planned.

I was a little concerned because we had our Day One test run over the weekend.  In some ways it went well but in others I was disappointed.  I did some of the driving but not as much as I would have liked but we tested out the new Sat Nav, which I am very pleased with.  However, during Ian’s drive (not he did not cycle all the way to Poole as was our original plan), the Sat Nav started to come unstuck (crash number 1), so by the time I drove (and Ian cycled) it had to sit on the seat next to me and I had to try to follow directions like that.  So, Ian cycled some of the way but what he hasn’t mentioned is that he too had a little crash on his bike. (Crash number two). He’s fine with only a scraped knee and handlebars that needed to be straightened.  (I am talking about the bike’s, not Ian of course.)

We had our meal at the Sun Inn but by that time I was really tired.  I was a little bit anxious about the massive dog at the next table in the bar and how Belle might be (Actually she was brilliant).  It was very noisy, and it was hot.  Heat and noise do not go well with my MS and the following day I had a lot of my MS symptoms hit me all at once.  We were seeing some of Ian’s family in Dorset on the Sunday and I had to go to bed and then we came home a day early.  (My crash and burn).   I pretty much spent the day in bed on Monday.  I was disappointed and felt as flat as a flat tyre.  The worst I have felt for some time.

I’m back in the ‘saddle’ now though but taking things slowly and concentrating on my OMS programme.

Looking forward to a better week coming up and don’t forget that in the next blog we have our interview.

Thank you for reading Jane and Ian

Thank you for your amazing support. Ian's strava routes and just giving links are here.

[unave]

March is Multiple Sclerosis Awareness month, you all have to be nice to me

[its-tea-time-darling]

infusion started, feel free to send me asks over the next 5 hours to entertain me 🔖🖌📖📕📚📝💌

[a-crimson-impressionism]

Trying my hardest to not worry about the pain I have that has spread from one knee to the hip above, to below my hip and below my knee and above my knee and to my toes, and to my other hip and other knee qnd down my other leg. Like, I'm trying SO HARD to not panic. Kinda failing sometimes, but I'm trying!!

[cerealxperimentslain]

Hey! Hey you! Look at the original post!

Please Help Hala Daoud get to Egypt for treatment of her debilitating illness (MS)

If you laughed at the haha funny gollum clip, please give me another moment of your time.

Hala (@/halakamak) was diagnosed with multiple sclerosis in 2021. Multiple sclerosis is an autoimmune disease that targets the central nervous system, and if left to progress can be permanently disabling. There is no cure, but there is treatment that can mitigate the damage it does to the central nervous system. Hala needs this treatment, so she can avoid becoming permanently disabled by the disease, but after the collapse of their healthcare system it is not available in Gaza anymore. The medication is also extremely expensive, $12,000 for just one dose that lasts only 6 months, and she must now pay this all on her own. Please help her get to Egypt to purchase this medication!

in four months she has only raised €1,566 of the target €17,000

VETTED row 954 on The ButterflyEffect Project

VETTED number 307 on @/el-shab-hussein & @/nabulsi's Vetted Gaza Fundraiser List

[only-when-i-write]

Happy Disability Pride Month

brought to you from a hospital bed because life’s got a sick sense of humor

[comicbastars]

Please Help Hala Daoud get to Egypt for treatment of her debilitating illness (MS)

Please listen to me, I want to talk about Hala Daoud, a mother of 3 who is stuck in Gaza and who needs our help! her tumblr is @halakamak

Hala was diagnosed with multiple sclerosis in 2021. Multiple sclerosis is an autoimmune disease that targets the central nervous system, and if left to progress can be permanently disabling. There is no cure, but there is treatment that can mitigate the damage it does to the central nervous system. Hala needs this treatment, so she can avoid becoming permanently disabled by the disease, but after the collapse of their healthcare system it is not available in Gaza anymore. The medication is also extremely expensive, $12,000 for just one dose that lasts only 6 months, and she must now pay this all on her own. Please help her get to Egypt to purchase this medication!

Only €1,523 has been raised of €17,000, she has not had any new donations in 21 hours!

VETTED row 954 on The ButterflyEffect Project

VETTED number 307 on @/el-shab-hussein & @/nabulsi's Vetted Gaza Fundraiser List

🇵🇸🕊️

@paper-mario-wiki @prisonhannibal @trans-girl-nausicaa @sealsdaily @heritageposts

(the slight difference in spelling of her last name is because of how names in the arabic alphabet can be spelled different ways in the latin alphabet)