#overcomingms

[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

[mermaidonthemountain]

Day 30: comfort Last night I set to work making one of my family’s favorite dinners. Chicken curry. It’s the first solid food I fed my babies and my littlest’s favorite dish still. I make it every year as our #celebration dinner of Imbolc. It represents the warmth of the sun returning. The fire of life. The warmth of our love. I’ve obviously adjusted my recipe for me to be meatless. Imbolc is February 1st, but we’ll be celebrating all week, as my family has crazy schedules. But that’s fine by me. 😘 #chronicallyinspiringchallenge #mswarrior #fightMS #fuckMS #OMS #overcomingMS #myyearofgratitude #neverstop #mermaidwarrior #MScansuckit #Imbolc #spring #pagan #vegan #comfortfood #plantbased #curry https://www.instagram.com/p/BtTbpe4Hbe0/?utm_source=ig_tumblr_share&igshid=i42re2pn2arf

[velvetphantom-blog1]

#Infusiontime #autoimmunedisease #functionalmedicine #ms #multiplesclerosis #mood #fatigue #mswarrior #msfighter #mssucks #tired #chronicillness #msfam #womenrunning #finishms #strongerthanms #overcomingms #msrunner #runningwithms #multiplesclerosisawareness #msawareness #curems #fightms #invisibleillness #autoimmune #hashimotos

[veganfodmaper-blog]

This has to be one of my favourite vegan meals so far!! Warm Ginger Green Bean Honey Mustard Salad with Pita Pockets - equally good with rice. Herbs(Basil, Majoram Parsley Oregano Thyme Rosemary) Green Beans, Spinach, Red and Orange Capsicum, Mushrooms, Ginger, Dressing (Olive Oil, Mustard Seeds, Cider Vinegar, Mustard Powder, Celery Salt, Honey)

[nickallennz]

The alpine meadow before Upper Travers Hut is just stunning. There's a snow-fed stream running through the tussock, sitting beneath the ice-laden faces. And what day for it! . #masteringmountains with #macpac #mitoq and #radixnutrition. #whateveryouradventure . Mastering Mountains Charitable Trust is all about helping people with #multiplesclerosis get outdoors. I have #MS and this is my story. #autoimmunedisease #functionalmedicine #mswarrior #msfighter #strongerthanms #overcomingms . #tramping #picoftheday #photooftheday #travelgram #travelphotography #hiking #adventuretime #beautifuldestinations #naturelover #naturelovers #seenz #seenewzealand #newzealandphotography #newzealand #camping #campinglife #outdoors

[madewithlovenz-blog]

We tried these today down at @mysilopark My favourite summer ice block @drfeelgoodicepops #glutenfree #dairyfree #refinesugarfree #norefinedsugar #autism #mswarrior #overcomingms #jelinek #jelinekdiet #oms #nzmade #silopark #auckland #hotsummersday #kidstreat #kidsparty (at Silo Park, Viaduct)

[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.

[debbiehepworthjorde-blog]

Walking in a winter wonder land☃️💖 . . . #winter #sunlitmountains #mountains #nature #lovenature #naturbeauty #exercising #winterexercise #winterwalking #winterwonderland #happy #happiness #overcome #overcomingobstacles #overcomingms #ms #overcomingchallenges #overcomingdepression #positivity #positivevibes #selfdiscipline #strengththroughstruggle #strengththroughadversity https://www.instagram.com/p/B5iXf_PFfNg/?igshid=1v6jhgi2gq8lv

[mermaidonthemountain]

Day 29: the hardest part of MS? In the long run the pessimist may be proved right, but the optimist has a better time on the trip. ~Daniel L. Reardon #chronicallyinspiringchallenge #mswarrior #fightMS #fuckMS #OMS #overcomingMS #myyearofgratitude #neverstop #mermaidwarrior #MScansuckit https://www.instagram.com/p/BtOnVKUHP7d/?utm_source=ig_tumblr_share&igshid=1lfafdgqgsade

[velvetphantom-blog1]

#autoimmunedisease #functionalmedicine #ms #multiplesclerosis #mood #fatigue #mswarrior #msfighter #mssucks #tired #chronicillness #msfam #fighter #ChronicPain #womenrunning #finishms #strongerthanms #overcomingms #msrunner #runningwithms #multiplesclerosisawareness #msawareness #curems #fightms #invisibleillness #autoimmune # #warriors

[nickallennz]

Mark and Nina, caught in the light beneath Travers Falls, Nelson Lake NP. #masteringmountains with #macpac #mitoq and #radixnutrition. #whateveryouradventure . Mastering Mountains Charitable Trust is all about helping people with #multiplesclerosis get outdoors. I have #MS and this is my story. #autoimmunedisease #functionalmedicine #mswarrior #msfighter #strongerthanms #overcomingms . #tramping #picoftheday #photooftheday #travelgram #travelphotography #hiking #adventuretime #beautifuldestinations #naturelover #naturelovers #seenz #seenewzealand #newzealandphotography #newzealand #camping #campinglife #outdoors (at Nelson Lakes National Park)

[prathiba-autodidact]

: This post is mainly for children. Face those bullies and tormentor with courage and overcome situations that you think is impossible to handle. You are brave enough to face any problem and challenges. Do not hide yourself from the world, face it and take it over with head held high! : : ©📝:@prathibashivaji Follow: @prathiba_autodidact : #overcomingabuse #overcomingchallenges #overcoming #overcomingpain #overcomingtrauma #overcomingobesity #overcomingbyfaith #overcomingoverthinking #overcominginjury #overcomingstruggles #overcomingeatingdisorders #overcominggrief #overcomingaddiction #overcomingbingeeating #overcomingtheodds #overcomingadversity #overcomingfears #overcomingobstacles #overcominganxiety #overcomingdyslexia #overcominggravity #overcomingshyness #overcomingptsd #overcomingms #overcomingdepression #overcominginfertility #overcomingillness #overcomingfear #overcomingmultiplesclerosis #overcomingperfectionism https://www.instagram.com/p/B7MLHm_F9kQ/?igshid=1e9gox7mxvh3w

[willeke-maya]

Top 10 MS support pages on Facebook

Top 10 MS support pages on Facebook

Multiple Sclerosis Ireland @MultipleSclerosisIreland Provides information, support and advocacy services to people with MS and their families. Learn more at Multiple Sclerosis Ireland website

  Overcoming Multiple Sclerosis @OvercomingMS OMS supports an evidence-based, positive diet and lifestyle program. Learn more at Overcoming MS website

  MS Society UK @MSSociety Our community is here for you…

[crystalbenesfitness-blog]

Today marks 8 years since my MS diagnosis, and 5 years of being on my once a month infusion. To say my life is different than 8 or 5 years ago, would be an understatement. It's no doubt that at the time of dx I was at the lowest point in my life. Depressed, scared, in so much pain and there was nothing I could do about any of it. I literally felt like I'd just been handed a death sentence, the pain was unbearable and at the time I was told I just needed to deal with it, because the pain comes from lesions on the brain, not an actual injury. 8 years later, I know better! Technically that's still all true, but what you CAN do is heal your body! With the help of changing my eating habits, exercise and shakeology, I feel great, 95% better than before! I am now, not only a strong advocate for MS awareness but also for taking care of your body! Becsuse I've been on both sides of this ship, and I don't know where I'd be right now if I hadn't decided to beat the odds and stop being a statistic. Once you stop just "wanting" something and you make the conscience decision to do something about it, you'll be the happiest goal getter there is! #overcameMS #overcomingMS #NotAStatistic #msISbs #fiveYears #eightyears #mIsFIT #strongerEveryDay #exerciseisthebestmedicine #choices #smartchoices #exerciseJunkie #ificanyoucan #understatement #lesions #brain #diagnosis #shakeology #StrongAdvocate #healthiestmealoftheday #betterYou #superFoods #selfLove #delicious #goalGetter #GoalDigger #nevergiveup #multiplesclerosis #curems #lifeGoals #surpassingOdds #beatTheOdds #WhyNotYou

[omsdoortodoor]

OMS Door to Door Challenge - departure date minus 5 weeks

Ian's fortnight

“Riding a bike is everything to a cyclist. The friendship and camaraderie you have with other cyclists…to a cyclist, it was the be-all and end-all of your life” Tommy Goodwin.

The third weekend in July saw a group of thirteen of us descend on New Alresford in the watercress area of Hampshire for a boys cycling weekend. This, apart from the covid year has turned into an annual event visiting a different town each year. It all started with my Stag weekend in Shrewsbury, eight years ago and we have since visited Cirencester, Marlborough, Salisbury, Ludlow  and now Alresford

I say cycling weekend but you could also call it a pub crawl or wine fest and not all of us cycle!  When we arrived six of us went out on the bikes for a ride of about twelve miles, after about three Andrew, Steve and I stopped at the first pub we came to.  We’d had an awful journey up the A303 and were in desperate need!

On the Saturday we headed off to Bishops Waltham where we had a coffee and cake stop before heading up the Meon Valley to the Ye Olde George Inn at East Meon for lunch. We then returned to Alresford cycling through some lovely countryside passing several watercress beds on the way. That evening we visited the local Italian restaurant before a last glass or two of wine at the hotel. A big thank you to all who attended, and I hope to continue the tradition next year. 

As a footnote, I was stood in the bar at The Swan Inn where we were staying when I heard, “That's Ian!”, only to turn round to be greeted by my nephew James and his partner Amy. I shouldn’t have been too surprised as they do live a stone’s throw away, and it was great to see them.

Jane's fortnight

For those who read my last blog, the answer to the question is:  Yes, I have done my foot exercises every day since my conversation with Sarah.

I now feel like the start of the Door to Door Cycle Challenge is within reach, I can feel it, I can almost touch it.  And with that comes the need to step up the final organisation.  On that front, there are lots of bits and bobs that need to be done.  And to be honest it was beginning to stress me, because I knew there were lots of little bits, but no list, no responsibility and worst of all no SPREADSHEET!

I kind of felt like this:

So last Wednesday, Ian and I reverted to our original Door To Door planning meeting.  And I feel much better organised for doing that, and for having a fresh spreadsheet.  All tasks are on a list, with whose responsibility it is and which week it will be completed in.  So, this week I have:

Had the iPad screen fixed that I (read Tarka) broke when we were away.  I will be using that a lot for uploading video on the challenge.

I have also checked to make sure I know all the details of my personal google account (rather that my old business one), so that I can upload to YouTube and other similar things without any hitch when we are one the road.  Boring by necessary.

Typed out a list with the kilometres per hour converted to miles per hour. (Because you just can’t read the km’s on the dashboard of the motorhome).  Also boring but safe and also probably necessary.

Next week I need to finalise the first aid kit and write an article for our Parish Magazine about the challenge.  I also need to give some thought to creating some themes for blogs and posts when we are on the Door to Door Challenge, as well as finalise the start and finish arrangements for the challenge.

The other “biggy” of course is my physical preparation.  Pilates and strength training continue to go well, and I am comfortable that I am on track (Thank you Sarah Grey).  But since the last post, I have started what I think is the final thing that I can do to prepare myself…Oxygen Therapy.  I know I mentioned it earlier, but the idea is that I get 20 sessions as close together as possible to get my body to the best level it can be.  Then it gets maintained by weekly/fortnightly/monthly sessions depending on what works best for me.  The initial part is a huge commitment of my time, because I am saying goodbye to 3 hours including the travel to Exeter on a near daily basis and sit in a chamber looking like a fighter pilot, but sounding like this, for an hour. 

So, as of today I have had 12 of my 20 sessions.  Am I feeling a difference?  YES.  It hit me yesterday that I felt WELL.  And I realised that I could not remember the last time I had felt like that.  Not for, literally years.  Now, as my friend Carol advised, I will ensure that I don’t get carried away and undo all the good I have done.  So, the focus for the last few weeks is PACE, PACE, PACE.

Respect

I can’t complete this blog without mentioning the truly inspirational Laviai Nielsen, who won a bronze medal as part of the British Quartet in the mixed 4x400 meters.  Apparently, she was diagnosed with MS just two days before she flew to the last Olympics in Tokyo.  Although physically we are totally different, I can imagine what might have been going on for her mentally and emotionally and I completely understand why she refused to accept her diagnosis as she competed at Tokyo.  But on returning from Tokyo, she was forced to adapt her lifestyle and tailor her training to avoid future MS-related flare-ups.  And she has mastered her lifestyle adaptations so well that she has gone on to win a bronze medal.  Total respect to her and to her sister, also an Olympian with MS.

But here is the lesson for me.  Obviously, I am not going to go out and start running – it’s just not my thing.  But whatever physical adversity I face, I think living a good live depends on finding and implementing the right lifestyle adaptations for me.

And right now, I think I am doing well on that score - getting balance – being as well as I can but also having some fun times too.

Announcement

And the final note about fun, is that we are delighted to say that our final fundraiser is definitely going ahead as planned.  For a time we were a bit unsure. So, for anyone who lives close to us, we will be holding a ‘Pop-Inn’ on the 6th September with The Big Chipper in attendance.  If you’re local and need more details, just DM me.

As always, Ian and I are truly humbled by the amount of support we have received both in terms of encouragement and the money we have raised for Overcoming MS.  If you would like to see Ian’s training route or help people with MS to lead a fulfilling life, our links to Strava and Just Giving are here.

Thank you so much

Jane and Ian

[debbiehepworthjorde-blog]

As I began my journey to healing my body’s MS, 10 years ago, I heard Anita Moorjani’s near death experience and her message, “Remember Your Magnificence” Her insights gained, her messages, and her story began my healing process as I applied and live what she taught me . I feel better today than I’ve felt in years! I took this photo of Victoria Falls in Zimbabwe, Africa. An incredible place to “Remember My Magnificence!” . . . #healing #healingquotes #rememberyourmagnificence #selflove #selflovequotes #nature #naturelovers #inspiring #inspirational #inspirationalquotes #victoriafalls #victoriafallszimbabwe #ms #overcomingms #overcomingchallenges #overcomingobstacles #overcoming #healed #selfhealing #selfhealingpower #positiveaffirmations #positivethoughts #positivethinking #positivity https://www.instagram.com/p/B0oYxzal-nk/?igshid=6eksrfcz8lbk