49 She’s a waterfall …

I’ve been feeling a bit sorry for myself over the last few days.  Lots of reasons – worrying about the future, wondering how long I can manage working full time, resenting how much time I spend planning how to preserve spoons (see previous post on “spoon theory”), noticing worsening symptoms and also dealing with feeling cold most of the time.

According to the MS Trust, between 60 and 80% of those with MS struggle with heat sensitivity …I don’t think I fall into this group.  This is what they say about cold sensitivity…

“Cold sensitivity is less common with MS than heat sensitivity, and it tends to affect different symptoms. The symptoms most likely to be affected are nerve pain, mobility and spasms. Depression and fatigue may also be triggered by the cold, particularly if it coincides with poor weather and less sunlight.” 

I think that sums it up nicely!  I always struggle mentally with winter and this year is no exception.  In addition to this, my thyroid levels are all wrong at the moment, so feeling cold is something I’m stuck with for now.   As well as MS, I have Hashimoto’s Disease (autoimmune thyroid disease) and am currently working with my GP to get my meds at the right level – unfortunately we’re not there yet! 

Yesterday, whilst scrolling through Facebook, this photo of me from exactly a year ago popped up …

A year ago I could go to a gig and dance all night, I didn’t need a walking stick or a Blue Badge and although I was experiencing episodes of fatigue, I didn’t have to give too much thought to how many spoons I had left to get through the day.   I am haunted by the feeling that I’m slowly fading away. 

Today I met with my lovely friend, Beth for a coffee and a chinwag (therapy really!) and when I got in the car to travel there, one of my favourite songs came on the radio …

This song has a lot of meaning for me – it tells me I can get through things if I just keep going.   So, I can get through this bit of a blip too.   Thank you Stone Roses and XS Manchester. 

Later, I had a visit from my son and his dog and we went for a walk in my local park …lovely. 

So, today has reminded me that the best things in life are all around us …we just need to make sure we value and appreciate them.  Here’s my list from today:

  • Music 🎼
  • Friends 👭
  • Coffee ☕️
  • Cake 🍰
  • Family 👩‍👧‍👦
  • Pets 🐶😺
  • Fresh air 🥾
  • Sunshine ☀️
  • Trees 🌳
  • Water 💦

❤️

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