44 What does it feel like to have MS?

Trying to describe how it feels to have MS is like trying to describe colour to someone who can only see in black and white!  It doesn’t feel like anything else, so there is no way of explaining it to someone who hasn’t experienced it. 

Wobbly legs, weird sensations, balance issues, vertigo, pain, tremors, tingling, spasticity, funny walk, poor grip, weakness, numbness, spasms, general clumsiness …these are just some of the physical symptoms of MS that I’ve experienced. 

Everyone’s experience of MS is different and most MSers find that their symptoms can change over time and can vary day to day, or even hour by hour.  I’m sure it must confuse some people to see me one day appearing to walk around without a care in the world and the next day to be limping and hanging on to the furniture! 

Earlier this year, MS Ireland decided to let people have a small taste of what it’s like to  live with MS. This video has been well received by the MS community as it demonstrates some of the small but multiple struggles MSers face every day …

The MS Ireland website can be found here.

I remember trying to describe my difficulties with walking to my children when my symptoms began.  Then I found this picture online and it helped them to understand 

I don’t mean that I see the floor that way, it’s just that’s how it feels to walk on a flat surface most of the time – slopes, steps, cobbles, uneven ground, all just add to the fun!  So if you see me walking on a flat surface, without a stick, please be aware that this is something that now requires concentration!

You can find out more about the common symptoms of MS on the MS Trust website …

www.mstrust.org.uk

 GoFundMe

43 Lets talk about diet

I’ve been researching MS since before I was diagnosed and something that comes up, time and time again, is diet and lifestyle.

There are numerous reports of people halting their progression and even reversing their symptoms, using diet and lifestyle changes alone.  Other diets are promoted for those with any autoimmune disease (I have two!).  Most of these diets involve eliminating gluten, dairy, eggs and processed food completely.

A few years ago, before my MS diagnosis and when my Hashimoto’s Disease* was particularly aggressive, I saw a private Functional Medicine doctor, in a desperate attempt to find a way to feel better.  After numerous tests and discussions, the doctor identified that I have an over reactive immune system and the root cause of this was likely to be “Leaky Gut Syndrome” (not at all what is sounds to be!).  Basically, my digestive system was reacting to a range of factors, was inflamed and damaged, causing molecules and pathogens that would normally remain in the digestive system, to leak into the blood stream.  My body then realised there were undesirable molecules and pathogens in my blood and tried to fight them off.  

Unfortunately when the body’s immune system is in full attack mode, it can’t always tell the difference between undesirable food molecules and proteins which are part of the body.  

I had a blood test which revealed high levels of antibodies to a large number of everyday foods in my blood.  The doctor advised me to eliminate these for at least 3 months.  The list included gluten, milk, cheese, eggs, cucumber, soya, beans, nuts, tofu, radishes etc etc.  I was vegetarian at the time and found I had to reintroduce chicken and fish, as there wasn’t much left that I could eat!

I worked hard to heal my leaky gut.  I did this by taking digestive enzymes with every meal, taking a high quality probiotic, eliminating all the foods on my list, adding a spoon full of powdered collagen to my food daily and by eating plenty of fruit and vegetables.  I believe being on more appropriate thyroid replacement medication helped too.  I also took supplements to deal with the vitamin and mineral deficiencyies I had developed.  This worked really well, but it was hard to eat such a restrictive diet and although I felt better and my thyroid blood levels improved, I gained weight!

You can read more about leaky gut syndrome here …

Healthline.com

It should be noted that many doctors do not recognise leaky gut syndrome as a diagnosis (although Intestinal Permeability is recognised) and there is no agreement on this being a definitive root cause of autoimmune diseases.

Here’s what the NHS has to say about leaky gut syndrome …

NHS.uk

Over time, I have gradually reintroduced most of my banned foods.  I no longer drink cows milk (I have developed a love of coconut milk!) but can’t live without cheese!  

I’ve experimented with reintroducing gluten and it’s hard to say if it makes a difference.  Gluten is considered, by some, to be the number one potential trigger for autoimmune diseases.  At the moment, I don’t eat gluten containing products at home but don’t worry too much if I consume a little when I’m out.  

I had a go at the “Wahls Protocol” earlier this year but found it impossible! There are different levels to the diet and you need to get to level 1 to really benefit (according to the book, anyway).  This involves eating 9 (yes … 9) cups of green veg per day and also the consumption of “organ meats” ? …it was never going to happen!  The Wahls Protocol was devised by Dr Terry Wahls, who has had considerable personal success in reversing some of her MS symptoms.  There is considerable speculation online that she also had chemotherapy to dampen her immune system, however, this isn’t mentioned in her book!

I’ve been recommended the “Overcoming MS” approach created by Australian Professor George Jelinek, by someone who has met the man himself!  This is a diet based on plants and fish and very low fat.  I have tried very low fat diets in the past (in my yo-yo dieting days) and don’t feel this is the right approach for me.  I remember experiencing low mood, that my skin and hair really suffered and my nails became thin and weak.

Another interesting approach is that of Canadian MSer, Matt Embry who has devised a diet and lifestyle approach he calls”MS Hope”.  This diet also eliminates gluten, dairy and eggs.  

There is also the Paleo Diet, the Autoimmune Protocol Diet, the Autoimmune Fix and the Anti-Inflamatory Diet, to name just a few.  . 

The approaches mention above also include living a healthy lifestyle as an important part of the protocol to support fighting MS – regular exercise, limited alcohol, sleeping well, managing stress, meditation etc

At the moment, I am trying to look after myself and lose weight by eating a low sugar diet which is  high in fibre, protein and “good fats” (roughly following the Blood Sugar Diet but Michael Moseley).  I’m still avoiding cow’s milk, gluten and soya.  I’m also going to an MS yoga class when I can as well as Aquafit when I have the energy!  My GP has referred me to a supported programme at my local gym where I will be allocated a trainer to help me get back into exercise.  I am listening to a relaxation app on a regular basis, trying to go to bed early (I am a night owl) and generally pacing myself (or conserving spoons).  

This approach does impact on my social life and on things I might want to do, but I’m feeling ok at the moment and determined to be in the best shape I can be so I’m ready for HSCT ??

*Hashimoto’s Disease is autoimmune thyroid disease.  More info can be found here…

Thyroid UK

42 Fundraising events

Well our fundraising page has been up and running for 6 weeks now and this is the grand total you have all helped to raise …

Never in my wildest dreams did I think we would be this successful and it has warmed this old heart so much to see such kindness.  I am grateful for every penny donated and am particularly touched by donations from people who don’t even know me and from friends who I know don’t have a lot.  I am aware that many of us  are living in financially challenging times, so fully understand that not everyone can (or wants) to contribute ?

From the start, we wanted to make sure that we were doing things to earn your contributions, rather than simply crowdfunding.  All of these events need a lot of thought and organisation  – not easy when you have a full time job, a busy life and wobbly legs as well as brain fog and fatigue!  I really appreciate all offers of practical help and couldn’t have got this far without family and friends sacrificing their time ..thank you all ?

Here is an update on events still to come …

Christmas Second Hand Toy Sale

My nieces, Kyra and Fiona, have gathered up everything they can find in their bedrooms and hidden away in the cellar and are preparing to sell it at an organised event this Saturday.  They live near Cologne in Germany, so if you’re near there and want to know where the sale is, get in touch!

Dry November 

My fabulous friend, has volunteered to have an alcohol free November.  As you can see, Julie is the cocktail queen of Stockport, so this is a big sacrifice for her! 

Although it’s not yet November, Julie has already started her ‘go dry’ challenge and has managed a fun night out on soda water alone! 

If you know Julie and would like to sponsor her, please see her in person.  

If anyone else would like to encourage Julie with a small donation, you can do so via our GoFundMe page (link below). 

Disclaimer: Julie is actually very sensible and does not have a drink problem ?

Wilmslow Festive 10K

Niamh, Callum, Jess and Jake will be taking part in this event on Sunday 25th November. Training has begun and thankfully, Niamh’s hip seems to be holding up! 

Head and Chin shave 

Callum will be succumbing to the scissors in early December.

Evening Event

We are still in the planning stages for this but are hoping as many people as possible will come along a support us and have a fun evening of music, food and drink.  We already have visitors travelling from the Isle of Man and from Germany to attend!  Date to follow …

Peak District Mountain Bike Challenge

The five cycling lads have had a couple of set backs and are now running out of daylight!  They have decided to follow advice and delay their cycling challenge until March of next year.  This is because they have worked out that the ride will take 12-14 hours and for safety reasons (and to preserve my nerves) it would be better to not be doing some of it in the dark! 

They plan to spend the next few months getting in as many training miles as possible. 

As you can see in the photo above, they were out on the Peaks on Sunday, with Connor filming part of their route using a helmet camera …I’ll upload some footage from this when I’ve worked out how to! 

Tandem Sky Dive

More information to follow when we have it.

we are still open to ideas and offers of help, so please get in touch if you have any ?

GoFundMe

41 Head and chin shave

Yesterday I received a message to have a look on Facebook.  This is what I found …

Callum (the one with the long hair) is my daughter’s boyfriend and Calum is his friend (you can tell them apart by the number of l’s).

The message above says …

“Right then folks , this guy has agreed to let me shave his head and beard if we can raise £2k to put towards a great cause , have a read here. https://www.gofundme.com/another-ms-warrior If you’d like to donate please comment “ Callum’s head shave “ on this post so we know when we’ve hit the target and can get this guy looking 12 years old again ? Soon as we hit the target I will be posting a video for everyone to watch and laugh!”

Callum has been growing his hair for over 4 years now and has volunteered to, not only have it cut off, but to have his head and chin shaved too.  Thank you Callum (I expect I will feel guilty about this one for 4 more years!).

Callum loves his long hair and has only agreed to give it up for a price … £2,000  Money and pledges are rolling in already …going bald is clearly an attraction! ?

The head shave will take place in early December and of course, we will update with photos/video then.

Callum will be donating his hair to The Little Princess Trust.  You can read more about their work by clicking this link.

In other news, we have launched our Facebook page today …

Please click on the image and like, share, post ?

40 Cakes, cakes cakes! ?

Yesterday, the Herefordshire arm of the family held a coffee morning, cake sale and raffle to raise funds for our campaign.  

Jimmy and Gill have a brewery business and have been selling raffle tickets to brewery visitors for a few weeks now.  They managed to gather some super prizes from the local community, as well as donating some of their own produce.  

 

Gill is renowned in our family, for her amazing culinary skills, which she seems to have passed on to Anna and Zeb!

 

The event took place in their lovely home and it looks as if it was lots of fun.  Anyone who follows Swan Brewery on Facebook will know that Gill never misses an opportunity to dress up and this was no exception.

And just look at those amazing cakes! 

There were a few cakes left at the end of the morning so Anna and Zeb packed them up and sold them to some of the spectators at the village football game in the afternoon. 

Today, they have managed to count all their takings (including a jar of pennies donated by their neighbour!)

The grand total of all their hard work is …

This brings our grand total past the £6,000 mark ..I am so grateful to everyone who has helped us to get this far ?

Thank you for all your efforts Anna, Zeb, Gill and Jimmy and also the people of Wellington and customers of Swan Brewery ?

You can find out more about how Swan Brewery was born, their environmentally friendly ethos and their amazing selection of beers here …

www.swanbrewery.co.uk

They are also on Facebook and Twitter. 

In other news…

The cycling lads are out in the freezing Peak District as I am writing this …I’m just hoping they manage to avoid the snow that has fallen there over the last 48 hours! 

We now have so many local musicians volunteering for our evening event in the new year, that we may need to have two events! 

We are planning to contact local media at some point but things are already starting to happen without us doing anything!  I have been contacted by a company who are making a documentary for Channel 4 about people funding their own medical treatment and Niamh has established a contact at Smooth Radio.

In the meantime, please follow us on Instagram and Twitter and share with your contacts.  Thanks again for your continuing support ?

gofundme

 

39 Well known people with MS

Some of you may be aware that Hollywood actress, Selma Blair, has this week revealed that she was diagnosed with Multiple Sclerosis in August of this year.  Although no one would wish MS on anyone, her open and honest Instagram post on the subject was well received by the MS community. 

It’s a bit depressing to see that one of our trashy news papers is now carrying a grainy video of Selma limping and holding on to her partner when out shopping (MSers are not exhibits in a zoo!)

When I heard the news about Selma, it got me thinking about other people in the public eye who have MS and realised that I really couldn’t think of anyone!  I’m not sure if this means that there are well known people with MS, who are largely successful at keeping their illness hidden; or whether developing MS causes famous people to drop out of the public eye?! 

I decided to do some online research and discovered the following are also diagnosed with MS.

Jack Osborne 

Jack is perhaps the most well known MSer.  He revealed his diagnosis in 2012 and talks about his life with MS via his website youdontknowjackaboutms.com.  There has been a bit of criticism about his approach, as the lifestyle he advocates is only accessible to those with access to funds and who don’t have to work.  Jack also admits to being paid by one of the big pharmaceutical companies making a lot of money providing drug treatments for MS.

Richard Pryor (comedian and actor) 

I had no idea he had MS.  Apparently his declining mobility affected the roles he was able to choose as his disease progressed. 

 

Walter Williams (singer with the O’Jays)

Alan and David Osmond (Father and son in the famous singing family) 

“I may have MS, but MS does not have me,” is Alan’s MS motto.  I’m sure he was devastated when his son was diagnosed 20 years after his own diagnosis.  Both now regularly speak on behalf of the National MS Society (USA). 

Jamie-Lynn Sigler (Actress best known for her role in the Sopranos)

Jamie-Lynn announced her MS diagnosis in 2016 and has talked about how it affects her daily life … “When I walk I have to think about every single step, which is annoying and frustrating.”  (I can relate to this!)

Clive Burr (drummer with Iron Maiden) 

Ronnie Lane (the Small Faces, the Faces)

Don Van Vliet (known as Captain Beefheart)

Sadly I also found listed, numerous athletes, football players, hockey and baseball players whose careers were cut short by a diagnosis of MS. 

On another sad note I found that, in the past MSers often died much earlier than they should have (many of them in their 50s).  Thankfully, more is known about the disease and how best to manage it and life expectancy is now just a little below that of the general population.

Despite a lot of digging around online, I found very few well known people in the UK with MS.  I find it very hard to believe there aren’t more – please let me know if you are aware of anyone

There are a few noteable names who are active in the MS world due to having a loved one with the disease.  

JK Rowling 

Joanne’s mother had MS and in fact, died from complications linked to MS at the age of 45.  She has spoken openly about how difficult it was to see her mother’s decline and death at such a young age.  JK has donated a significant amount of money to MS related causes, including giving £10 million to found a clinic, which is named after her mother. 

Scott Mills (BBC Radio DJ and Broadcaster) 

Scott has often spoken in interviews about his mother’s diagnosis and is proactive is seeking to help people understand what living with MS means. He has also been an active spokesperson for the MS Society. 

Felix and Hugo White (The Maccabees)

Both have often spoken about their mother’s diagnosis and how this affected their family.  The Maccabees have also raised funds for MS charities at their gigs and have taken time to meet with young fans living with MS.  

I found a few other names listed but didn’t know of many of them.  I’m sure there are others.

38 Half Marathon sponsorship update

On Sunday 14th October, 5 amazing people took part in the Manchester Half Marathon.  For everyone except Nick, this as the first time they had run this distance, so it was a huge challenge.  They all worked so hard to prepare and achieved amazing times when they crossed the line. 

I have finally counted up all the promised sponsorship money for the event and we are delighted to let you know the total raised is …

Thank you so much Heather, Nick, Gleaves, Connor and Niamh …you are amazing! 

Thank you to everyone who sponsored them …every penny is very much appreciated.  I want to give an extra mention to everyone at Stephenson’s Catering Equipment for their kindness and generosity.  

We have a couple of sponsored events coming up in the next few weeks …

Peak District 58 mile mountain bike challenge 

Adam, Connor, Gleaves, Carl and Johnny are in training for this gruelling challenge and we have started to receive sponsorship funds already!  They have had to postpone their original plan to do this on Saturday and we will have a new date very soon.

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Wilmslow Festive 10K

Jess, Jake, Callum and Niamh will be taking part in this event on Sunday 25th November.  Training has begun and I hope to be there to cheer them on, on the day.

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Dry November

My wonderful work friend Julie is planning a dry November and will be collecting sponsorship money for doing so.  Julie’s preparation involves spending the half term holidays drinking a month’s worth of Prosecco! 

? ? ?

If you would like to sponsor any of the superstars mentioned above, you can do so at the Go Fund Me page linked below or by speaking to them in person.  

Thank you to everyone for your continued support, whether by taking part, by donating or by sharing my story ?

GoFundMe

37 Some ramblings about weight gain

 

I saw my GP today to talk about various things – MS, treatment options, hypothyroidism (I have that as well) etc. She decided to check my weight and blood pressure while I was there. 

Obviously, I’m very aware that I have gained weight over the last few years.  Lots of things have contributed to this …my age is one (honestly once you hit 50, anything more than the odd nibble of celery causes weight gain). 

Anyway, my weigh in revealed that I am now the heaviest I have ever been (including when 9 months pregnant!).

I feel that MS is a major cause of my weight gain.  A few years ago I was several stone lighter, at the gym two or three times a week and generally pretty energetic.  My favourite class was Body Pump – a high energy full body work out using weights.

Ok, I didn’t quite look like this, but you get the picture!

I felt great, strong, confident …I’d love to be able to do it again.  

As my MS has affected me more and more, I have become less and less active.  I wish now, that I’d pushed myself to do more – perhaps not body pump – but not to have given in to it so much.  The symptoms of MS make exercising so difficult and of course, once you lose fitness, you become weaker and weaker, energy levels drop and it’s so hard to get motivated again. 

I have been reading a lot about the benefits of exercise to those with MS, in terms of relieving symptoms and to maintain strength in order to cope with those symptoms.  Somehow I need to find a way to get back into exercise.  

Recently, Niamh, Sophie and I have been going to an Aquafit class at my local pool – great fun and more of a work out than you might think!  For me, being in water feels amazing.  I have always loved swimming and been confident in the water and have now found it is the only place where I don’t have the constant feeling that I’m about to fall over! 

I am working on some exercises at home to improve my balance and have been referred to a scheme at my local gym where I will be allocated a trainer for 3 months.  They will help me to plan an exercise programme, help me to access appropriate classes and hopefully gently get me back into moving a bit more.  

My weight gain is not just due to lack of activity – know I’ve been comfort eating for a while now – I need to find a way to get on top of that too.  

As you all know, I am hoping to have HSCT next year.  The treatment is challenging to the body, so I want to get myself in the best shape I can, as I feel this will improve my chances of coping with treatment and having a smooth recovery. 

On a positive note, my blood pressure is “perfect”!

36 Mountain bike challenge postponed

The cycling boys have made a decision today, that they are going to postpone  the sponsored bike ride due to take place this weekend.  A few factors have contributed to this …

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  • A fifth team member has put himself forward today and as the others have been training for a while now, he needs time to catch up …welcome to the team Jonny!
  • One of the team picks up a new bike this Thursday and it would be madness to take it on a 100km ride on its first outing.
  • The weather forecast for this weekend is for freezing temperatures and snow on high ground.  Since the challenge includes several steep climbs in the Peak District, we are concerned about safety of the team in these conditions (well, the boys weren’t concerned about this, but I was!).

So, the team of five will be out on a low level training ride at the weekend and putting plans together for a new date.  We’ll share this with you very soon and hope you understand the reasons for this change of plan. 

??‍♂️ ??‍♂️ ??‍♂️ ??‍♂️ ??‍♂️

Here are some photos from their most recent training ride and spectacular views of the beautiful Peak District.

35 Fundraising news

Well, a couple of days ago, this happened …

100 donations in one month!!  Thank you so much each and every one of you xxx

The sponsorship money from the Manchester Half Marathon is still coming in so I don’t have a total for that just yet. 

Connor, Alex and Gleaves have been out training on their mountain bikes today.

Having said that she’d never run again, Niamh, along with Callum, Jess and Jake, has signed up for the Wilmslow Festive 10K run on 25th November.  She is still resting up to allow her hip injury to heal, then all 4 will be training in earnest!  

We also have some other fundraisers coming together …

My Prosecco loving friend, Julie, is giving up booze for a whole month! 

My niece Fiona has signed up for a 10K and my sister Glenda, for a sponsored Nordic walk event.

My sister in law, Gill is hosting a coffee morning next weekend, including yummy cakes (she is an excellent baker) and a raffle.  

I’d like to hold some sort of cake related event too …I seem to have so many cake making friends!  Maybe some sort of Bake Off or something along those lines?  Or a good old fashioned cake sale? Or something Christmas related?  If anyone has any ideas, please give me a shout.

We are still working on a possible sky dive and a long haired person is considering a drastic hair cut, in exchange for donations …watch this space for more information on that soon!

We are planning an evening event to take place in January.  We have a fabulous venue and plans coming together for music, food, drink, a raffle and a silent auction.  

So, this is my next request for help …

  • Do you have anything you could donate as a raffle prize or silent auction item?
  • Do you own a business and would be able to donate services, a beauty treatment, a meal or anything else we could raffle or auction?
  • Do you have any contacts at venues who could donate event tickets?
  • Do you have a connection to anyone famous who could donate items?
  • Do you have connections with anyone who could help with any of the above? 

If you can help with any of the above, or you have any other ideas for fundraising, please give one of us a shout.