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OMS Door to Door Challenge Departure Date minus 15 weeks

Jane's week

For those of you who are regularly keeping up, you will notice that I appear to have missed two weeks of blog, going from DD minus 17 weeks to DD minus 15 weeks. One is definitely due to a miscalculation on my part, but the other has been missed because I have had a good 10 days where my fatigue has really got in the way of completing the things I have wanted to do. I have been gradually peeling back the commitments in my diary, and one of those on the list was last weeks blog. But recognising when I am tired is a good thing right?

There have been some things going on in the background though. Regarding my tiredness, I have spoken to the team at the MS Centre in Exeter, who among a few service provide oxygen therapy. I will be visiting next week so I will tell you how it went in the next blog.

The other thing I have done. is to get agreement for Ian and I to be guest on the Overcoming MS podcast 'Living Well with MS' podcast. We will be recording this week and I believe it will go live in July. Obviously I will post you the link when that happens. I am so pleased that we able to do this and very grateful to the team at Overcoming MS for giving us this opportunity.

Ian's week

“Commuting by bicycle is an absolutely essential part of my day. It’s mind-clearing, invigorating. I get to go outing pedal through countryside in the early morning hours, and see life come back and rejuvenate every day as the sun is coming out." James L. Jones

Since my last blog I have been doing a bit of work for Exeter Aerospace back in the hangars I used to work in for Flybe. I was good to see some of my old colleagues and catch up on news of those that moved on elsewhere. It has given me the opportunity to commute by cycle.

Leaving at around 5.20 AM the route takes me from Holcombe to Tiverton Parkway and onto the cycle path that follows the railway and M5 to Willand. I then go through Cullompton to Broadclyst along the old A38 before crossing to Dog Village, (yes, a real place) passed the Science Park to the airport. The cycle takes me about one hour and twenty minutes and is just over 20 miles. To get home I just follow the same route in reverse. I enjoy the early morning cycle, the roads are very quiet and watching the new day come to life puts me in a good mood for the day. The ride home is a bit busier but good training and with most of the Door to Door days being in the region of forty to sixty miles I feel in about the right place with three months to go before the off.

To see Ian's cycle rides, and fundraising please follow this link:

Thank you for reading our blog this week and for your continued support.

Jane & Ian

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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

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Door to Door Challenge Departure date minus 18 weeks

As promised, we took the brave move to put ourselves on camera, which we thought might be a little more interesting for you than just reading the blog all the time. Our great friend Claire, kindly offered to be our ‘Interviewer’ and she did an amazing job. Thank you, Claire.

However

No matter what I do, the video is too big to upload to tumblr. Tech frustration is the worst.

So I will keep trying over the next few weeks, but if any techie person thinks they can help please get in touch!!

In other news

Ian’s week

“Life is like riding a bicycle. To keep your balance, you must keep moving”. Albert Einstein

A new bike computer.

This week saw a change for me. I’ve never been one for technology. I avoided a mobile phone for years, and when I did get one, it was a “brick”! So, on Thursday I took control of a Hammerhead Karoo 2 cycle computer. Or is it taking control of me? I used it for the first time on Friday for a training ride. I must remember to look where I’m going instead of the map in front of me! It’s interesting to use. If you go wrong the route is highlighted in red, on a climb it's in blue and shows how long the climb is. I may disable this for the last two climbs in the Pyrenees!

I’m sure I’ll get used to doing what I’m told instead of writing down various en-route villages on a piece of paper & hoping I can remember them.

I also did a gym session on Tuesday. The weather was too bad even for me to go out on the bike, so I did 35 minutes in a spinning bike & 35 minutes on resistance weight machines mainly leg exercises. Totally un-connected I also had a session with my Osteopath later that day and she told me I needed to work on my back and neck as well as my legs, so she went through a couple of exercises for me to work on.

One thing I forgot to mention last week, is that towards the end of the trial ride to the Bakers Arms I took a little spill, I misjudged a curb whilst looking for a cycle route sign and ended up with a couple of bruises and a grazed knee. I also slightly twisted the handle bars on Bike No 2, so I put it on the stand that Ewan has kindly lent me and gave it a good clean &and check over before straightening it up.

I had my birthday this weekend, a lovely day planned by Jane which included a lunch at The Lost Kitchen followed by an evening meal with friends before going to “Bonkers Bingo” in the village hall.

One present I received was a book of cycling quotes, some of which I will include in this blog, the first being at the begging of this one.

Jane’s week

A quieter week for me, but along with the usual training I had the delights of having to reapply for my driving licence. This is something I have to do every three years as a result of my MS and the eye issue that is related to it. There were 11 pages to complete in hardcopy, which is not great for someone with an eyesight issue. But going through the forms reminded me of the proper name of my eye condition. I have been incorrectly calling it Opitic Neuritis, which can come and go. Going back over my diagnosis letters reminded me that I actually have something called a right inferior homonymous quandrantanopia. No surprise that I can’t remember what it is called. So, the forms have been sent to the DVLA and I am expecting to be asked to have a particular eye test. I am not allowed to know the result; it has to be sent confidentially to the DVLA. So, then I wait. Technically, if I don’t meet the standard for driving, then my licence will be taken away immediately, forever. Not only is that pretty grim but it would also put a massive spanner in our OMS Door to Door plans. But to be honest, I am fairly confident that my tests will reach the required standard.

Thank you for reading and listening and thank you once again to Claire. If you would like another interview further down the line, please let us know by messaging one of us.

Jane and Ian

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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.

[omsdoortodoor]

Blog Extra - MS Awareness Week 22nd April to 28th April 2024

This week is UK MS Awareness Week and this year Overcoming MS is running a campaign called #MSUnfiltered.

As part of the campaign, OMS is working with MS Society UK, MS Together, Multiple Sclerosis Trust, MS-UK, Neuro Therapy Network and Shift.ms to survey over 1,400 people in the UK living with MS. The survey results showed us that:

When I was diagnosed the first thing I did was to check out the MS charity websites, as recommended by my neurologist.  When I read the long list of symptoms

I was appalled because I had virtually all of these symptoms to some degree or another. 

Here is the list of symptoms combined from the MS Trust and the MS Society websites:

Fatigue

Strange Skin sensations (numbness tingling, pins and needles, a crawling)

Balance and Co-ordination

Vision Problems

Walking difficulties

Thinking & memory difficulties (brain fog)

Bladder & bowel issues

Temperature sensitivity

Low mood, emotional problems, depression, and anxiety

Pain

Sexual issues

Sleep problems

Speech and swallowing problems

Hearing difficulties

Tremors

So when I read the list not only was I dismayed, I was also rather confused.  Because, some of those symptoms I had been putting down to my age.  So how do I know is it my MS or an age thing?

But I’m really hear to talk about the #MSUnfiltered campaign and what we don’t usually talk about.

While I have been very open about my MS diagnosis, there are some people who chose not to tell their employer for fear of being judged and side-lined at work. And when I chose to give up work, I didn’t tell my clients the full reasons behind my decision.  Which were, that I no longer trusted myself to build an accurate spreadsheet of financial projections or that it took me three times longer that it should to write a simple report due to my brain fog and reduction in manual dexterity at the keyboard.  The reduction in my ability to hold complex ideas in my mind undermined my confidence in my own abilities.  I wanted them to remember me as someone capable of doing everything that I used.

Sometimes I get so overwhelmed by outside stimulus that I struggle to think straight or to express myself properly.  All I can manage is a grunt because I can’t get the words that I want to say out.  I come over as inarticulate and I worry people will think I am rude because I only use a few words and need to go and lie down.

Up to 50% of people with MS have poor mental health – this is something I am comfortable talking about and I am happy to fly the flag here.  However, when I went on an MS retreat in November and started to talk about how MS affects my mental health, not one person had the courage to talk about their own issues. Even though there were 40 people in the room, and we were in a ‘safe space’.  If the stats are right at least 20 people in that room must have experience of poor mental health. For a moment, I felt a bit embarrassed for raising the topic, but only for a moment.  What I really felt was sympathy that no one else had the courage to share.

And finally, my closest friends will know that I use the loo A LOT. I now have a RADAR key but I haven't had to use it YET.

#MSAwarenessWeek #MSAwareness #MS #MSDiagnosis #OvercomingMS #OMS #MSSymptoms

[omsdoortodoor]

Door to Door Challenge Departure date minus 20 weeks

The Pothole Pandemic.

Ian's Week

It’s bad enough in a car, but when you cycle Devon’s lanes, at times it feels like you are in a down market amusement park on rough jolting rides with chicanes chucked in every few yards.

Some of the potholes round here are so deep they register on Strava as descents & climbs!  I once had both front & back wheels punctured by the same pothole, unfortunately for me I only had only one spare tube & no repair kit so had a long walk home in my ‘clip pity clop pity shoes’.

Potholes are dangerous to all vehicles but more so to the intrepid cyclist who has the audacity to go out during wet weather, of which I now think we have had enough of. When the roads are dry you can see and avoid but when wet, what looks like a puddle may well be a quick route to Australia!

It would be interesting to cycle through the centre of our Earth even if it wasn’t the plan when you set out but not ideal as I don’t tend to wear sunscreen during the British winter! 

Bike No2 had a clean and a little maintenance before I took it out for the second of my rides this week. I had a couple of good training rides this week, the Uplowman loop and on Saturday a route that combined the Culm Valley & Uplowman routes. 

Jane's Week

Here are my stats….

The best news here is that I am feeling far less tired in the morning than I used to and far less tired in the evening.  What I am feeling is tired around mid-morning – which I haven’t been recording as yet, and I have been thinking that maybe I need a protein boost at that time.  Following a plant-based diet need not mean that you are short of protein, but you do have to make sure you are eating the right foods to ensure you get enough.  So, a job for this week going forward will be to look at the protein I’m eating and check I am eating enough – particularly as I plan to be doing more strength building.

Last week I was so excited to being going to the Motorhome Show at Westpoint.  We had lots of accessories that we wanted to buy and a list of things to research (like storage ideas, security and so on).  I anticipated spending a lot of money – even though I had promised not to.  But disappointingly there was only one or two accessory stalls.  We bought a couple of bits and bobs but nothing to write home about – hence they do not get a mention in this blog.  We did however stop at the stall selling reconstituted dog food.  It wasn’t planned stop, it wasn’t on our list.  I had popped to the loo and Ian waited outside for me and the dog food stall was right next to the door.  By the time I came out I think the deal was nearly done.  So, we spent virtually nothing on the van Celeste and a rather a lot on the space saving dog food.  The verdict from Belle and Tarka is waggy tails and lots of drooling.

There were a LOT of second-hand motor homes for sale and so we did a fair bit of browsing.  Our verdict is, that even Celeste is quite old, she still has a pretty good layout, we couldn’t find a design we preferred.  We decided that we wouldn’t be upgrading her, even IF that had been part of the plan – which is definitely wasn’t.

The rest of the week was filled with swimming - this week in the sun. It was fabulous.

I also worked hard at Pilates, so let's talk about another Overcoming Multiple Sclerosis programme pillar.

Exercise

I think we all know that physical activity improves mental and physical wellbeing, but it can also have a significant long-term positive impact on MS symptoms and improve mood.  Back in the day (actually, not all that long ago) when a person was diagnosed with MS they were told not to exercise because it made their MS worse.  (WRONG) In fact, they were told to do no exercise and pretty much wither away.  People were told there was nothing that could be done to help.

It’s almost incredible to believe isn’t it.  In fact, within the last 12 months, when I had to tell a surgeon (in fairness, NOT a specialist in neurological conditions) that I had MS, they replied “I’m so sorry”, in that tone as if I had been given a death sentence.  It really shook me up and I can still hear that tone in their voice.

But what is really clever about exercise it that it actually builds and strengthens neural pathways.  (WHAT?).  Exercise improves Neuroplasticity and that means that, just because part of my brain and body were no longer talking to each other due to myelin sheath damage, the brain can find another pathway.  It can find a way to talk to different parts of our body.  Our brains are so smart.

One of the first things I did when I was diagnosed was to set up 1-1 Pilates sessions with Sarah Grey (Pilates South West).

Sarah, who always wants to increase her learning and help her clients more, started doing courses in Neuro Pilates.  You may think that Neuro Pilates is only for people with neurological conditions, but as she says, if you have a brain and a body then Neuro Pilates can help to improve movement.

My biggest issues back then were balance and falling over.  My balance was complete rubbish.  I couldn’t put on a pair of wellies without holding on to something or sitting down.  And I used to fall over, A LOT.  Especially in the garden.  I used to get so upset and cry and I am sure the neighbours must have heard me swearing in frustration at myself.  (I apologise now).

If you’re well and you lose your balance, your body and brain adjusts to stop you falling over.  If you have MS and you lose your balance, you go to stop yourself by taking a corrective step for example.  But with MS, it just doesn’t happen.  The foot just does not move.  The connection between the brain and the hip has gone on holiday and down you go like a pile of bricks.  When that used to happen, to prevent myself hurting myself more than needed, it adopted a sort of flop and roll technique.  I mean, once I knew I was going, I wouldn’t try to stop myself, I would just relax.  That technique was helpful but not very graceful.

But what was totally amazing were the exercises that Sarah gave me.  Very quickly, I realised that I could lift my leg high enough to put my wellies on. I can still remember how chuffed I was the first time I achieved that.  And I haven’t fallen over for a good 18 months now.  Every time I stop myself from falling, I say, “Thank you, Sarah”.  Her ears must be burning because I say that often.  It has changed my life.  Literally.  I have gone from feeling pretty much incapable of doing very simple movements, to feeling like anything is achievable.  So, every day, pretty much without fail, I run through a quick exercise sequence that keeps me on my feet.

Now we’re working on getting me ‘challenge ready’.  Building my strength etc. 

I have a number of people who I consider part of my MS team and Sarah is very high on that list.

This week marks MS Awareness Week.  Overcoming MS is joining forces with MS Society, MS Together, MS Trust, MS-UK, Neuro Therapy Network and Shift.ms to launch MS Unfiltered. It’s a sensitive and intimate campaign encouraging people to speak out and share some unfiltered stories.  So later this week, I will create a special blog to focus solely on that.

Thank you for reading Jane and Ian

Would you like to find out about the route or join the very generous donors who are helping to support Overcoming MS? If so here is a like that has both Ian's training updates and how to donate. Thank you.

[omsdoortodoor]

Door to Door Challenge Departure Date minus 21 weeks

Spring Cleaning

Ian's week

I’ve upped the training this week, a couple of cycles and a trip to the gym.

My first ride this week is the regular Uplowman loop, a ride I always enjoy, With Mondays weather being wet & windy (surprise surprise) I headed for the gym, thirty minutes doing interval training on a spinning bike followed by 40 minutes of mainly leg exercises on the resistance machines, 50 reps of 7 different exercises which added up to a good workout.

For my second ride of the week I cycled what I will call the Culm Valley loop. Holcombe, Sampford Moor, (The Blue Ball was closed), Culmstock & through Uffculme to Willand, I then took the cycle path to Tiverton Parkway returning to Holcombe via Westleigh. Although tempted I managed to cycle past The Culm Valley Inn without stopping!

Bike No 3 also got a well-deserved clean & check over.

We’re off to a Motorhome show at Westpoint Exeter Sunday where we hope to pick up some information & maybe the odd bargain.

Jane’s Week

Swimming in the Rain

Here’s my weekly stats – back again as promised

Although I feel completely shattered as I type this, the numbers suggest that, overall I am achieving more and feeling less time.  I’m really pleased about that because, right now, typing this, it does not feel like that at all.

That could be because I met a good friend in Bristol for a (very) long lunch at Mud Dock Café followed by a tour on the Balmoral, docked there and on display for a little while. 

Now, I didn’t know this when I picked the Mud Dock café (my choice was based on it’s menu) but some of you may know that it is built above a bike shop.  Ian wasn’t with us. If he had he may have got lost in their shop.  But in the café they have these amazing posters.  I am planning to try to replicate something like this for Ian’s finish (not how that’s going to work right now).

I also might be tired because last weekend we celebrated friends triple birthday party.  There was music and dancing and I danced until I nearly dropped.  Boy did I pay for that over the next few days, which is partly why I am so pleased with the numbers in the table.

Also big news this week.  I have upped my swimming.  I went, with a couple of friends to Wivy Pool, which is a Lido.  It was a chilly day, but we braved the weather and plunged in.  A bit overcast to start with, it then started raining.  At which point, I could not help myself – I had to sing, Gene Kelly style, Swimming In The Rain. (while trying not to swallow water). 

On another swimming related note, out of the 3 of us, on one could decide the best way to get to Wiveliscombe from Holcombe Rogus.  One of us had only been there once, and the other two would have gone completely different ways.  It’s just one of those routes – there does not seem to be a consensus on the best route to Wiveliscombe.  On no, I feel another song coming on:  ‘Is this the way to Amerillo Wiveliscombe?

So the bottom line is, I am going more – bit by bit – step by step.

As Ian mentioned, we go to a Motorhome show.  We’re just going to look, we won't spend any money…….promise

Thanks for reading and keeping up with our news

Jane and Ian

Please catch our links here:

Strava and Just Giving (not sure why that is now randomly showing runners!!!)

Videos

Training Begins

[omsdoortodoor]

Door to Door Challenge Departure Date minus 22 weeks

Ian’s week

Gravel

It’s been a busy week but not much cycling.

I managed to get out and cycle the Uplowman loop in dry but windy conditions. Each training cycle ride is show on the just giving page

Bike No 3 is very dirty and needs a clean plus the gears need a bit of adjustment, I’ll have to look at my bike maintenance books or maybe just have a play with them.

I could do with a bike stand which makes life easier really but will manage without.

This week coming I hope to get out for two or three rides but will have to look for an alternative route.  They are resurfacing some of the lanes round here with gravel.  It will be great in a month’s time, when all the loose bits have gone but never fun to ride on when first laid.

Maybe a route round Culmstock & Uffculme which means crossing the ‘Great Divide’, the A38! 

We thought this might be a good week to introduce our two other crew members, Tarka (on the left) and Belle.

Belle is our six year-old Welsh Spaniel and Tarka is our 12 year-old Cocker, although we have only had him for 18 months.

They will be accompanying us on the whole challenge.  They are pretty good at travelling but I am wondering how squashed we will be in the campervan – particularly as Tarka likes to creep on to the bed, followed shortly by Belle.

So, this week started in Burnham on Sea.  Fabulous to be parked up, for free, in a road that was right next to the beach.  And first thing we had an amazing walk along the sand which resulted in very sandy dogs.  Still getting used to Celeste, but there are two things to add to the packing list:

The cordless handheld hoover (note to self - I need to check about charging en-route too)

A dog drying bag - courtesy of Pawdaw of London

Obviously not our dogs in the photo (watch this space). It would be great to just zip them up in one of these for 30 mins and hey presto! dry dogs and all sand contained in the bag ready to be shaken out later. Our two are going to look so cute in them.

Jane’s week

Food

We had lunch with friends who went to great length to make sure that all the food we ate complied with the OMS programme.  The OMS programme comprises of a number of pillars; Diet, Vitamin D, Physical Activity, Stress Management and Meditation, Medication (when recommended), Family Health and the final pillar is Change Your Life For Life.

The diet pillar does not fit any of the popular names you hear, such as keto, pescetarian or even vegan.  It was created from on research focused on people with MS.  It’s a bit like a modified Mediterranean diet, and some of you will have heard me say, for simplicity, “I am vegan + fish”.  It is more complicated than that.  It is plant based with fish and low saturated fat, but there are certain cooking methods that we avoid.

We refer to the NOVA groups for food processing scale, which has four categories:

Group 1 - Unprocessed or minimally processed foods

Group 2 - Processed culinary ingredients

Group 3 - Processed foods

Group 4 - Ultra-processed food and drink products

We avoid group 4 – Ultra-processed food and drink products, with occasional exceptions.  At home, Ian follows this eating programme with me, which makes it so much easier.  And so day to day, we can comply 100% with this programme.  This means that when we are eating with friends, or travelling, there is some room for the occasional exception.  A really good example of this is when we are travelling.  If we need to pick up lunch on the go, even a vegan ready-made sandwich or wrap would be out of bounds.  Luckily none of the foods cause an allergic reaction or ‘cause’ my MS. But there is evidence to show that following all the pillars of the programme reduces deterioration in mobility by 50%.  So while no one can be 100% all of the time, that is a massive incentive to follow it as much as possible.

If anyone is interested in knowing more about the eating programme, here’s a link to the website:

The HOLISM study has generated over 15 research papers published in top peer-reviewed medical journals, such as Frontiers in Neurology, PLOS ONE<, BMC Neurology and BMC Psychiatry.  If anyone is interested in the research the link is here:

 

Following this OMS programme has made me explore different food options and a few weeks ago I went on a Vegan Cheese Making course, run by the owner of Kinda Co.  I can now made vegan Ricotta, soft cream cheese, Mozzarella, fondu and cheddar.

One of my side effects of MS is neurological pain, pain that your usual paracetamol does not touch.  So having gone to bed pain free, on Monday night, I woke on Tuesday at 4.30am in excruciating pain in my right thigh.  Firstly, I just tried to zone out of it – but no joy.  So, after two hours I decided to use a mindfulness meditation session.  I chose a 20-minute body scan technique, which also incorporated an element of breathing exercises.  Thankfully it helped, but sometimes it can be so difficult to pinpoint why I should just wake up in pain.

I have a little confession to make.  On the same ferry we bought the Velo En France book mentioned in an earlier episode, I also bought this.

There are a few places listed in the book which are directly on our route.  I thought it might be fun, the water should be warmish in September and the dogs will love it. And of course I will have these super-duper drying bags.  Now, truth be told, I am not a strong swimmer so I do not know if my swimming will be up to this.  Since January I have trying to find someone, somewhere who gives 1-1 lessons to adult swimmers.  Four months later, I have finally found someone.  So, this week, I have booked 1-1 lessons and a group crash course to improve swimming stroke all happening in May.  The final part of that jigsaw will be building up my strength.  But, more on that another week.

I am not putting my weekly table up this week, because for a variety of reasons there are 2 days when I have just had such a different routine and two days when I have really not been great, that the figures would be meaningless.  However, my little table will be back next week. 

But what I forgot to say in last weeks blog, was that in preparation for our Easter weekend away, I had to collect the leisure battery for Celeste.  It is double the size of your normal car battery and we reckon it weighed 25 lbs.  I picked it up from the ground, carried it and put it in the back of the car.  (I then left it in the boot of the car for Ian to take our once he got home, deciding that I had done my strength training for the day). So I was very proud of myself for doing that.  And that’s the funny thing about my MS.  On some days I am completely amazing.

[omsdoortodoor]

OMS Door to Door Challenge: departure date - 23 weeks

Biarritz to Burnham & Sat Navs Research

Ian's week

I didn’t get the chance to cycle this week because I was travelling back to the UK from France via Santander in Spain with my close friend Paul. 

The route took us west past the beautiful town of St Girons. 

This is close to where my route heading south will go. We spent the evening, before catching the ferry, in Biarritz. 

The English influence was clear to see, it had the feel an upmarket English seaside resort with its Victorian style of architecture. Drinking a rosé wine on the hotel terrace watching the sun go down was really tough!

The following weekend on the way home from a visit Jane & I stayed in Burnham-on-Sea, a pint or two of Butcombe & fish & chips on the seafront was just as good.

Jane & I spent some time in the last week researching Sat Navs, comparing TomToms with Garmins with a few other makes.  We need one that you could enter the vehicles dimensions into.  We settled for a Garmin Camper with a built in dash cam & the option of adding reversing cameras at a later date.

Hopefully I will get out on the bike a couple of times in the coming week.

Home Alone, Swimming Plans and Burnham Burnout

Jane's week

This week has all been out building my stamina ready for the Challenge, but this has been a very mixed MS week for me.  Last Saturday, I had a particularly bad MS day, which meant I missed out village littler pick, which was an opportunity to do something physical. But come Monday, I did manage a lovely dog walk with a friend, a swim on Wednesday, a tough Pilates session on Tuesday, which really focussed on strength building. I have also planned to swim with a couple of friends at a local outdoor pool, which I am really excited about.

A few months ago, my MS nurse asked me how I felt I was coping with coming to terms with my MS diagnosis. Hmmm, let me see.  I have an illness that can not be cured, it is degenerative, but we don’t know how far that degeneration will go and in spite of doing everything that the more forward-thinking neurologists are recommending, nothing is certain.  She explained that they have a counsellor on their team and would I like to meet them.  Well, I am always looking for ways to improve my situation, so they answer was yes.  I had my third session this week and it was hard.  I’d prepared a letter to my MS, which was quite emotionally exhausting to write and then equally so, to discuss with the counsellor.

But on better news, the Easter weekend was our first overnight in our Motorhome, Celeste, this year.  I did most of the preparation for our trip on Thursday and on Friday I drove the motor home to Swansea.  After all that, I was completely shattered on Saturday and Ian had to drive to Burnham, but I did drive Celeste home the following day.

Beautiful Celeste, beautifully parked by yours truly.

I also reviewed my progress over the month and it is quite clear that I have a very good routine first thing in the morning and last thing in the evening that fit with my OMS programme.  What I need to focus on are; more time out with the dogs, more swimming and strength building exercises, driving celeste more and breathing exercises in the evening to de-stress.

On paper, there’s actually been quite an improvement, but to be honest it doesn't feel quite like that in person.  Still I am just looking for small steps not massive leaps and I’m happy with that.

Thanks for reading

Jane & Ian

P.S.

You can view their route here:

Just Giving Link:

[omsdoortodoor]

Episode 4: Departure date minus 24 weeks

Ian’s Bikes

The Stable

Bike No 1: 2023 Cannondale Carbon Synapse

My reward to myself for working all of last winter, not that I needed much in the way of an excuse to buy it!

Although this one is the same model of my other Synapse it is a completely different bike both to ride & in its equipment. Still very responsive it is so much more comfortable to ride. Kitted out with electronic (no cables!) Shimano 105s the gear changes are quick & crisp & I love it! This is the one I will use for the challenge but will take the other Cannondale as a back up.

I had a few days in France this week & managed to get out for a couple of training rides in great weather, cycling in sunshine on quiet roads without having to dodge pot holes is so enjoyable especially when I could ride Bike No1!

The first of three rides was to the village of Sigeur & back, a total climb of 875 ft in 13 miles. The next ride was down the valley to Tarascon & back, 10 miles downhill to Tarascon & then a steady climb back up the valley to Auzat.

Jane's week - Angry Drivers

Having spent the last few weeks talking about my MS and fundraising, my thoughts now focus on coping with the challenge of supporting Ian using our Motorhome, Celeste.  Here she is, what a beauty. 

Named after Queen Celeste from Barbar the elephant.  (Apparently, she was not only Barbar’s cousin, but also his wife – who knew).

Celeste’s vital statistics are:

Height: 2.84m (9ft 3in)

Width 2.34m (7ft 8 in)

Length 7.18m (23 ft 7 in)

Weight: under 3500kg.

So, she is a pretty big beast – longer than a typical 17-seater minibus, but being under 3500kg is important because it means I can drive her without having to get a special category reinstated on my driving licence.  That category was revoked, as standard, when my licence was changed from a normal one to a 3-year medical license.

The reason why I mention that she is longer than a 17-seater minibus is because I did drive one of those as a support vehicle on a 3 peaks challenge many years ago.

So, this week, we took Celeste out so that I could get some reversing practice.   I drove to the Tesco car park in Cullompton to get used to how the reversing camera works.  I also found that the turning circle, when reversing is less than I had thought. Ooops. I was definitely closer to one parked car than I thought.  We have no parking sensors.  I am thinking that it might be sensible to alter that.

I also found where the horn was.  Very conveniently right in the centre of the steering wheel, if you are interested.  She is Italian built, so this may be why the horn is so accessible.  I was furious because as we left Cullompton, Ian said, oh one of the cupboard doors has opened.  So, I waited for a long straight section (not on the motorway for those who know where Cullompton is) where I could pull over safely.  I signalled with plenty of time and pulled over gently.  Bear in mind that nothing can happen fast in a motorhome of this size.  (I might change my mind on that later on).  And this bloomin’ driver beeped their horn, just because the had to pull out and  overtake.  I was so furious because a. I had manoeuvred safely and b. if I had done that in a car, they would not have beeped.  So, I beeped back – loud, long and clear.  Well, it made me feel better.

The other major prep I need to do involves building up my stamina so I can get to the end of the day without being exhausted and still be able to incorporate all pillars of the Overcoming MS programme that I follow.  Bear in mind that it will be rinse and repeat for every day of the challenge.

But how on earth to do that when you live with MS?  If you read my blog special to mark MS Awareness Month, (see above) you may have a little idea of what I will need to (at best) overcome and at worst (continue in spite of).

My plan has been to create a list of what a typical day on the challenge may look like and try to replicate that as much as possible.  The idea being that by the time we go on the challenge, a lot of the things will become daily habits and not a daunting To Do list.  I need to build up my strength (because I will be driving a big vehicle and because I will be putting up an awning and 3 wind breaks every day) and my stamina because I will need still be on the ball enough to cope with completing the social media in the evening.  I think resilience also needs to go in there too because I will need to cope with the unknown and speak French, which believe me is a BIG challenge.

So, I have created my list and every day I work out what % of those daily tasks I have achieved.  I also rate my fatigue when I wake in the morning and my level of tiredness last thing at night.  10 being high.

My aim is that I feel 0 fatigue first think in the morning.  (i.e. full recovery from whatever the day before throws at me).  That I regularly achieve 100% of the daily tasks (because they will all need to be done).  I am less worried about the end of day tiredness if I achieve full recovery by the following morning.  Hopefully that all makes sense.  I have 25 weeks to do this in.

Each week I will give you my headline figures.

Since I started to use this method (10 days ago):

I have experienced the lowest fatigue (2 out of 10) on just one day. 🙌

On the same day I achieved the highest % of daily tasks (70%). 👏

I have felt least tired in the evening (4 out of 10) on two days.🥳

I have experienced my worst fatigue (10 out of 10) first thing in the morning on two days.😩

I have achieved the lowest % of daily tasks (37%) on one day.😫

I have experienced my highest level of tiredness at the end of the day (7 out of 10) on four days.🥱

Thank you for reading this

Jane & Ian

[omsdoortodoor]

Episode 3: Departure Day minus 25 weeks

Serious Training

The Stable: Bike No 2: 2012 Carbon Cannondale Synapse.

This is the first carbon bike I’ve owned; it has the same Shimano Ultegra kit but is a very different bike to ride from the Kinesis. With its shorter wheelbase it is more responsive & twitchier, designed for endurance it is still great to ride on good quality roads & I have used it mostly in France including some of the great Tour de France climbs including the Col de Port, Port de Lers & the Mur de Peguere. I’ll be using it for training once the weather improves & for longer rides.

This week I have cycled a couple of times, on both occasions I did what I call the Uplowman loop, about 14 miles, Holcombe Rogus - Sampford Peverell - Uplowman - Huntsham - Staple Cross - Hockworthy & back to Holcombe. In nice weather a great ride, steady uphill to Huntsham makes you work, level to Staple Cross & a steep downhill back to Holcombe so a good work out.

The 1st time the weather was wet & rubbish, the second dry & sunny, the second run was 5 minutes quicker so either I suddenly got extra fit or the sunshine helped. On both occasions the Staple Cross Inn wasn’t open otherwise my times may have been significantly different!

Here's a link to the route

Cheers Ian

Fundraising

Wow, what a week this has been.  For me its all been about fundraising. We have set ourselves a target of £2,000 for Overcoming MS.

Our friends in our village have been amazing and have taken the lead in organising Curry In A Hurry.  This was a fundraising event we put on in our village a couple of years ago when trying to raise money to buy our pub.

Our village has a very small population and our pub and shop have closed.  So, eating out means driving of getting a taxi (a very expensive option in the country) and getting a takeaway usually means that the food is only warm by the time it gets home.

Enter….Curry In A Hurry.

Some of our fabulous Curry Crew

For £10 you could choose from three curries with rice and get a poppadom, bhaji, chutney and raita thrown in.   At such great value, we included the option to give an additional donation to Overcoming MS.   This fabulous fundraiser only happened thanks to the amazing help of the Curry Crew volunteers:

Jane L & Miriam on planning, menu creation, food shopping and curry prep

Gordon on logistics and driving

Sally, Dorothy and Carol on curry cooking and order assembly,  ready for deliveries

Rupert, John, Marcus and Andrew: Curry Crew drivers

Ian and myself on marketing and deliveries.

Some of the delivery crew. Curries despatched and enjoying a well earned drink

We can not say thank you enough, because with their help we raised

£651.00

which included curry orders and donations.

Many volunteers stayed on to enjoy some curry together.  A very tiring but rewarding few days for Ian, myself and the volunteers.

Thank you for reading, Jane & Ian

If you would like to donate to help us on our way, please visit our Just Giving page.

[omsdoortodoor]

MS Awareness Month - A Special Post

March is MS Awareness month. I think this this is particularly marked in the USA, which is why you will see so much on social media.

In the UK we also have MS Awareness week which is 22nd - 28th April . Finally, there is World MS Day, marked on 30th May.

Wow, that's a lot of public awareness, but with Official estimates suggest that there are two and a half million people with MS globally, and the rate of MS is increasing by two percent annually there needs to be a high level of awareness. So I will be shouting load and clear at all three of those special times.

I'm not going to do much typing, pictures can speak louder that words and I certainly could not get over in words what these images can. I take no credit for these images - they are all sourced from a number of sites and Facebook groups.

So here goes:

A BIG symptom missing here is FATIGUE.

But when you tell someone you have MS, they immediately wonder why your not in a wheelchair, that's because most people think......

So, what is MS like for me? Well I definitely live with these cute guys:

And this my brain feels just like this when I get information overload.

This was just one of the big reasons I had to give up work. I no longer felt that I had much credibility when a lot of what I said came out scrambled.

This one too....

I'd just like to reassure you all though, that my driving licence only valid for 3 years. To keep my driving licence, I have to get my eyesight. So I'm OK for the Door to Door Challenge.

And I love this picture and shows a trick I use to cope with dizziness.

At it's most hideous, it sometimes (luckily not too often for me) feels like this....

All of the above is TRUE. But the next few pictures are far more important to me.

Coming soon, our weekly update, including first training rides and first big fundraiser.

Thank you for reading this blog.

Jane x

P.S. if any of this makes you feel like you'd like to help people to live as good a life as possible, our Door to Door Challenge will be raising money for Overcoming MS and our Just Giving page is here:

[omsdoortodoor]

Episode 2: Departure Day minus 26 weeks

[omsdoortodoor]

Episode 1:

Departure Day minus 27 weeks

Hello, and welcome to the Door to Door Challenge blog.

I’m Jane and he’s Ian and in 27 weeks time Ian will be cycling from Devon, UK, to the Pyrenees in the south of France.

Each week I will post a blog about our preparation activities over the previous week. I will cover Ian’s training prep as well as my prep to be his Door to Door support.

You will see our preparations and the challenge evolve before your very eyes.

We are taking on this challenge because, well, apart from us both being a bit crazy and coming up with bonkers ideas after too much wine.

I have MS, so we will be raising money for the charity Overcoming MS. So I am going to share things about my MS, the challenges and the hilarious. It will be poignant at times but I will also keep it light, promise.

This weeks theme in 3 words: panic, panicking , peaked.

Jane’s week

"Twenty seven weeks is ages, right? Wrong.

We’ve been talking about this challenge for months, years even. We've bought a book about cycling through France, Velo En France. Ian has worked out how long it will take and a provisional route. "

"We’ve talked to our friends about it, we’ve talked to people at Overcoming MS about it, Ian’s got the t-shirt, (or cycling shirt), we’ve even agreed our Departure date - 8th September 2024. And then….nothing, nada, nic, zilch. Up until now there has been no fundraising, no training, no logistical plan. All the future activities needed to make this challenge happen have been engulfed in a fog. In my case brain fog, I’m not sure what Ian’s excuse is!

What changed? Well one of our friends, another Jane, from the village reminded me that she had offered to help us put on a fundraising event that we have previously run which we named Curry In A Hurry.

So having been given a gentle nudge/sharp prod, we realised we seriously needed to crack on with our plans."

PANIC

A quick planning meeting with Jane & Gordon followed. A quick To Do spreadsheet sheet, (or three) followed shortly after. My guilty pleasure: a well constructed spreadsheet - shush. At the moment it has four tabs, each one full of To Do’s:

Prep for Route

Fundraising

Curry In A Hurry

Marketing Plan (which is currently empty)

Having compiled three To Do lists we swiftly moved on to

PANICKING

OMG.

In the last week we have:

Borrowed various props for a launch photo

Spent an afternoon taking phots

Creating Curry In A Hurry poster and order form

Laminated said poster and distributed around our village

Left order forms in strategic places, including our local garage - thank you

Created social medial posts and posted in local village groups

Enlisted help of the Curry Crew (thank you again)

Wasted lots of time trying to set up a Facebook fundraising. (A failure)

Bought French Road Map (it might come in useful)

Read up how to write a blog

Panicked about how I am going to cope with the physical effort of providing support on the Door to Door Challenge or 17 days.

Panicked more

Then panicked some more

Found a website about Motorhome Living for people with a chronic illness.

Stopped Panicking

Peaked

I have taken to my bed for a bit while Ian steps in (yet again) and prepares supper.

And of course I created a Just Giving Fundraising Page. Please support us and help people like me. Thank you."

Jane

Ian’s week

"Last year I picked up a book detailing a route from Northern France to the Mediterranean Sea which inspired me to put the wheels in motion.

The route is planned, ferry booked so no turning back.

I will be riding a Cannondale Synapse endurance bike & will be supported by my wife Jane, our two dogs Belle and Tarka, following in our camper van, Celeste."

  Let’s talk Lycra!

"Never had a problem wearing it or with the image! MAMIL that's me!

On a more serious note, the cycle will be a major challenge.

I chose Poole as the crossing point to France. Let’s face it, much nicer than Portsmouth or Plymouth and far more enjoyable to cycle to. High on the list of reasons, there is a good pub that accepts camper vans in their carpark, five miles from the ferry.

Training has started. I’m currently checking out the wines from each of the regions we will pass through, cheeses are next & maybe then I’ll get on a bike!

I have a good level of basic fitness and have done some major rides over the years including 178 miles in a day from Trafalgar Square to Holcombe Rogus. Worth it for a Champagne welcome in the porch of Holcombe Court, courtesy of Nigel, who cycled with me.

I’ll keep you up to date with my training progress and thanks for reading this."

Ian