#MS awareness

[chenria]

16 years ago today I was diagnosed with multiple sclerosis.

I am not going to complain about this, don’t worry. Everything considered I am doing really well and I learned to accept the limitations caused by the disease.

It’s unfortunate that I can’t ride a bike anymore (my sense of balance is “broken” – I can walk fine, but riding a bike is sadly not possible anymore).

I might tire more easily and can’t always stay focused, I can’t deal with heat for too long and sometimes I have no real “connection” to my left arm. There are phases when I have a general feeling of disconnection – like I am sitting in an aquarium and watch the world from inside it. And my meds have depression as a very common side effect.

But I learned to accept all that and live with the disease because the alternative is not an option.

I knew from the beginning that giving up and crying wouldn’t make it better anyway.

There are good days and bad days. And I am lucky that there are more good than bad days.

16 years ago they told me I might not be able to finish my studies. Mind you, I got my economy degree in 2010 and another in 2014. I work a full time job which I enjoy most of the time now and my employer even gave me a north-west-facing office so I don’t have to suffer summer sun and high temperatures in my office too much.

So, this day marks another year that my disease didn’t get me down. This year I also treated me to a new gaming laptop and I regret nothing XD

Here is to another year of not giving up.

And with the current summer heat in my area I am just trying to keep a cool head and hope for autumn to arrive soon.

[mystiswords]

My personal experience on a headache’s take :

[pleasetakethis]

Rick and Morty got me in my feels tonight...

[unave]

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

[terrisha-of-the-abyss]

I’m taking part in The May 50K challenge this May to raise funds for life-changing research into multiple sclerosis!

MS strikes young people in the prime of their lives. The average age of diagnosis is around 30 years old, although myself and many others I know have been much younger. There is no known cure, yet.

With how amazing and fast the medical field and the knowlage we gain evolves I hope in my lifetime to see MS be a thing of the past. As an example of how much this research is truly impacting on our live in th MS community let me share a part of my story:

Five years.

If I had been diagnosed five years earlier(and I could've been since I had been exhibiting symtoms for well over a decade) I would be dead right now.

The kind of MS I have was a death sentence only /Five Years/ prior to my diagnosis but thanks to how fast medical science progressed and the timing of when my symptoms were noticed(thanks to some "awesome" seizures)I am here now, alive and breathing.

At the time of my diagnosis there was no treatment I could take to manage the symptoms, all the doctors could do was prescribe strong anti-epileptic medication to prevent seizures but that medication didn't prevent the damage, the demyelination and subsequent haemorrhaging, that caused the seizures in the first place.

But! Two years after my diagnosis there had come a new medicine that I was abe to take and that managed my symptoms for nearly a decade, now when that one stopped working(as is sadly the usual with autoimmune disorders) I have almost six different medicines to chose from to treat my rare form of MS.

In such a short time so much has changed and it gives me so much hope that we can oneday be free of this illness.

So please donate, participate yourself, spread the word and please support my challenge to leave MS where it belongs, in the past far behind us.

Your donation will support research into the prevention, treatment and finding a cure for multiple sclerosis to change lives.

Thank you!

[adamslilith]

During my first flare up I was struggling a lot with vertigo; a quite common MS symptoms that I've visualised so people who've never experienced it can still relate to what it's like :)

check out my video to learn more

[omsdoortodoor]

OMS Door to Door Challenge – Departure Date minus 1 week

Ian's fortnight

Playlist: Classics

Riding on My Bike - Madness

The Bike Song - Mark Ronson

Bicycle - John Cale

Bicycle Race - Queen

Broken Bicycles - Tom Waits

Bicycle Song - Red Hot Chilli Peppers

Bike - Pink Floyd

Silver Machine - Hawkweed

Nine Million Bicycles - Katie Melua

Riding On My Bike - Sia

From The Little Book of Cycling.

It’s been a few weeks since I’ve contributed to our blog so I thought it was time I wrote something. 

The last few weeks have been my out on several rides of different lengths including a circuit going past Wellington Monument to Culm Head before going passed Smeatharpe airfield to Dunkeswell. I then headed towards Culmstock, through Uffculme to Willand, Sampford Peverell, Uplowman, Huntsham ant the Staple Cross before retuning to Holcombe through Hockworthy. A ride of about forty-six miles which I completed in three and a half hours at an average speed of thirteen and a half miles an hour.

I have also completed several other rides as well as visiting the gym a few times to do some leg and back exercises.

Last week I had both the bikes serviced in Exeter, Bike No1 just needed a check over, but Bike No2 required some attention as it hadn’t had much done to it since I bought it about twelve years ago. It did give me the opportunity to cycle back from Exeter.  Approaching Cullompton I was overtaken by a bunch of about ten keen cyclists, and I managed to tag onto the back go the group & cadge a lift to near Willand. I showed the benefits of slip-streaming, which I won’t have the benefit of during the challenge.

I also saw my Osteopath this week, I tend to go every three months, probably in a vain attempt to keep myself as fit as I can.  She went through a number of exercises and stretches someone of my age should be doing when taking on a long cycle like this one.

With just a week left before we set off, I have several rides planned which will hopefully include a couple of longer routes and going out on consecutive days, I’m happy with my level of fitness so it’s now just about spending time on the bike.

Celeste our motorhome went in for a service and wash this week and I decided to go for a ride while I was waiting. I rode what will be part of the first day, leaving Wellington I climbed on to The Blackdown hills and on to Chard, through Winsham to Drimpton where I turned round and did it all in reverse. It’s fairly hilly but with some lovely countryside and pretty villages. The climb back on to The Blackdowns was tough but in all I rode 51 miles in about four hours which I was pleased with. Unfortunately, my phone went flat halfway through the ride, so I only managed to record part of the ride on Strava through which I monitor my performance.

I have to keep Jane and my cousin Heather musically happy during our time away so I have been buying CDs and downloading songs by the likes of ABBA, Lionel Richie, Whitney Houston and Coldplay to name a few. There may be times when I’m glad to be on my bike!

Heading into the final week before departure I have a couple of jobs to finish off on Celeste before packing her up ready for the off and of course we have our Fundraiser on Friday the 6th, The final Holcombe Rogus Pop Up Pub in the village hall so hopefully we will see you there.

Once we are on the challenge, there will be far fewer text blogs and more videos, pictures and interviews.

Thank you for your support and readership over the last few months.  Your comments and support has really helped us to prepare for our journey.

As you know we are raising funds for Overcoming MS. If you would like to support this amazing charity which helps to improve the life of people with MS you can follow this link.

[omsdoortodoor1]

Episode 2:

Departure Day minus 26 weeks

This weeks theme: It’s only a cold.

Jane's week

Actually, when you have MS the words 'only a cold' are a massive understatement. That's because a common cold is caused by a virus.

According to google there are more than 200 different viruses that cause the common cold, Rhinovirus being the most common.

But because a cold is a virus, not only does is bring out the sneezes, it also increases the symptoms that are associated with my MS. Everyones experience and symptoms of MS are completely different. (You're going to hear me say that many times over the next few weeks - Sorry). So this time, for me, not only has it increased my tiredness and sent me to bed on Thursday it was accompanied by a sore throat on Friday morning.

Unfortunately, it has also brought out my tinnitus. This is something I live with and I am lucky that it does not stop me sleeping or concentrating. But this time, well, you know when you have a blasted bluebottle that keeps dive bombing you? You know it right? It is so annoying isn't it, drives you mad.

Well that's what my tinnitus has been like this week. Every couple of minutes the volume of the constant buzzing in my ear, suddenly increases and sounds like I am being attacked by a blue bottle.

Another side-effect that become worse is my find motor skills. Having to change our Curry In A Hurry poster quickly, was definitely not done 'in a hurry'. The good news is that our curry slot has completely sold out, so I'm keeping my fingers crossed that the 7.30 pm and 8.30 pm slots will also sell out. Everyone is putting so much work into this.

Friday morning in particular did not go well for me. It started okay. I did my morning meditation, which is one of the pillars of the Overcoming MS program. Then Radio 2 played American Pie. I was word perfect. Pretty good I thought, considering that the last time I sung it was 11 years ago, along with my whole family during a holiday in France. I would just like to state at this point that we are not the Airey-Von-Trapp Family. In spite of the new sore throat, Friday was starting well I thought. Then I picked up an Earol spray and spayed it into my ear. As it gushed back out of my ear and down my neck, I realised that what I had actually sprayed right inside my ear was my Antiseptic Throat Spray.

So last week I was panicking about the sheer volume of things to plan and organise before we leave. but this week, I have spent some time giving some thought to my energy levels. I have created what I think a typical day looks like for me when we do the Door To Door and I will try to emulate that as much as possible. I'm a bit of a geek so I'm also going to mark myself, firstly a mark out of ten based on how much of the activity I get some and then a second mark out of 10 rating my energy levels at the end of the day.

Ian's week

The Stable:

Bike No 1: 2023 Cannondale Carbon Synapse.

Bike No 2: 2012 Cannondale Carbon Synapse

Bike No 3 2009: Kinesis GF Racelight

I had the Kensis built to my own requirements, an aluminium frame kitted out with Shimano Ultegra gears & brakes. It was designed as a tourer and is still very comfortable to ride, its the one I used when I cycled the 168 miles from London to Holcombe Rogus in a day with Dan, Roddi and Nigel a few years ago. It is also the bike I will be doing most of my early training on.

More about Bike no 2 next week.

This week I have been busy looking at my dietary requirements for the challenge and looking into where the best patisseries are for each day. You may or may not have noticed that wherever there is a cake shop there is usually a number of bikes parked out side!

Read our first blog here

http://tiny.cc/xjbjxz

and you can donate to Overcoming MS here

http://tiny.cc/ms14xz

Thank you for reading

Jane & Ian

[caregiversherry]

Josh (my husband) started using a walker recently. Before that he was using a cane. Our 10 year anniversary was this past weekend and we had pictures taken in NYC in front of a horse and carriage. Josh posted a picture with his walker in it for the first time on Facebook and an acquaintance of his commented something that needs to be discussed. He said that Josh needs to stop selling himself short by using assistance to walk and that he’s stronger than that. This is not only ignorant but hurtful. No one knows what someone else is going through and not everyone with MS has the same level of symptoms. It is not safe for him personally to walk without assistance, such as a cane or walker at this point due to falls and extremely poor balance. I could definitely go on forever about MS awareness but in a nutshell, no two people are alike. Don’t tell someone who is trying to better their quality of life to stop selling themself short. In fact, maybe ask why they’re using it instead if you (clearly) don’t know.

[wipeoutms]

Thank you Freedom High School for bringing awareness to Multiple Sclerosis and donating $2000 to the National MS Society.

[guinevereslancelot]

it's a beautiful day at the roman senate and you are a horrible goose

[veryluckyclovers]

<3 you got this

[wszczebrzyszynie]

drew my sona in paint

[mspaint-flower]

toothache