Monthly Archives: December 2013

Christmas – a comparison

Posted on December 12, 2013 | Leave a comment

I’m sorry there hasn’t been much blog activity lately.  The good news is this isn’t because of a relapse, but because life is so busy. I am working on my pages about meditation, but I’m finding my time for writing is seriously eroded by all the Christmas activities and shopping, so they’re not ready yet.

I thought it might be useful to compare where I was last December to where I am this December, particularly for anyone struggling at the moment.

December 2012

After improving over the summer of 2012 I declined as the weather got colder and the days shorter. Last December I caught Bronchitis, and this caused me to relapse to housebound for several weeks and bed bound some of the time.

A particular low point was when my daughter was crying in her room for me to help her and I could not get out of bed to go and comfort her, let alone help her.  I can remember sobbing to my husband that evening that I couldn’t cope and I needed more help.  I can’t quite remember how we muddled through that time. I have a brilliant set of friends who took my children to and from school and various activities and cooked for us every Friday.  As usual my wonderful husband somehow held everything together – I think he must have come home from work early quite a lot.  He did all the Christmas shopping, cooked the Christmas dinner as well as the myriad of household chores he has been responsible for since my illness.

On Christmas day I managed to get out of bed for two short periods to watch my kids open their presents, and then again later for dinner.  The rest of the day was spent in my bed, alone.  I found the noise and energy of the family too much to tolerate for long.

As I recovered from Bronchitis I made a determined effort to increase my activity slowly.  By February half term I was doing some school journeys on my electric bike, and I slowly increased this until I was doing all of them.  Since Easter 2013 I have reasonably consistently managed the school run, and now I can’t remember the last time I’ve had to call a friend and ask them to bring my kids home.

December 2013

This December is a huge contrast to last year.  Here’s a list of some of the activities I’m involved in, but I’ve probably forgotten some:

  • Singing in a choir concert – extra rehearsals and the performance.
  • Taking my children to extra Christmas activities
  • Attending various Christmas events at the school: Christmas Fayre, an assembly and, next week, a carol concert.
  • Arranging household repairs.  We’ve got a leaky roof.  I’ve been dealing with the insurance company and various roofers giving quotes.  Hopefully that one is fixed now.
  • Christmas shopping  – Using the local shop mobility service my Husband and I went shopping for over 2 hours, and I’ve also done plenty of internet shopping.
  • Having relatives visit:  Last weekend my lovely nephews, brother-in-law and sisters-in-law visited.  I managed to socialise with them most of the time they were here.
  • Planning to visit relatives: This year we are spending Christmas with my extended family – there will be 14 of us at my parents house.
  • Planning a trip to London.  I plan to take my daughter to the theatre for her Christmas present.  This will be a huge challenge, but I’m confident I can manage it, otherwise I wouldn’t have booked the trip.

Between all these activities I’m still making sure I eat the right foods, as well as do regular meditation and yoga. Now you can probably see why the blogging has had to take a back seat!

I hope that if you are going through a bad time at the moment, this post boosts your belief that things can improve.

I am so grateful and appreciative of everything I am able to do, even the mundane tasks like arranging roof repairs.   ME/CFS shrinks your life to a very small core.  As I recover and my life expands I truly appreciate every extra thing I can do.

 

 

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Posted in my experience

Glimpses

Posted on December 5, 2013 | 1 comment

Of this our true individual life, our present life is a glimpse, a fragment, a hint, and in its best moments a visible beginning.  

Josiah Royce

 

It’s coming up to the two year anniversary of the start of my illness, and I’ve been reflecting on the pattern of my recovery. I’ve realised that my improvements are usually very gradual and tend to be a step forwards, then a step back for a whle, then a step forwards again. Often I step forwards and back several times, gradually maintaining the step forward for longer each time.

My mum recently reminded me how weak I was in the early days of my illness,  when just walking to the kitchen and eating a meal that was put in front of me used all my energy, and I had to spend nearly all my time resting.   I have come a long way since then.  Every so often on a good day I will manage to do something I’ve not  managed since I’ve been ill.  Here are a few examples of my firsts, but this list could be much longer.

  • take and collect my children from school
  • pedal my electric bike short distances
  • have a shower and not have to rest before I get dressed
  • Do a bit of washing up
  • talk to my mum on the phone without having to hang up after 5 minutes and rest afterwards
  • Go to a supermarket and buy a few items
  • take my son to his swimming training

All these are things I first tried on a good day, and was thrilled that I managed them.  I wasn’t immediately able to repeat them, but it gave me a glimpse of what was possible and something to aim for.   It took time, sometimes months, before they became things I could do most days, and I still have bad days when all of these things are too much.

Thankfully now the bad days are much less, the good days are more frequent and I am able to do much more on the good days.

I look forward to more glimpses into the future.  Recent glimpses that I’m hoping I’ll be able to repeat soon include:

  • walking to the end of my road
  • attending a yoga class without having to sleep afterwards
  • coping with my children having friends to tea.

What glimpses of improvements have you seen?

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Posted in my experience

Should you go gluten free?

Posted on December 2, 2013 | 1 comment
              • Bone or joint pain,
              • muscle cramps,
              • leg numbness,
              • chronic fatigue,
              • abdominal pain,
              • headaches,
              • foggy mind,
              • diahorrea,
              • weight loss,
              • eczma and rashes,
              • depression,
              • anemia,
              • behavioural changes.

This is a list of symptoms for Non-Coeliac Gluten Sensitivity (NCGS) source.  There is a lot of overlap with CFS/ME symptoms, so If, like me, you read this list and identify with several symptoms then perhaps it’s time to try cutting out gluten for a few weeks and see if things improve.

What is gluten

Gluten is a protein found in Wheat, Barley and Rye.  It is made up of two main groups of protein glutenins and gliadins.

Wheat Allergy, Coeliac Disease, Non-Coeliac Gluten Sensitivity

There are three different types of reaction to wheat proteins; Wheat Allergy, Coeliac Disease and Non-Coeliac Gluten Sensitivity (NCGS).

  • Wheat Allergy is a classic food allergy and is an adverse immunologic reaction to wheat proteins.  I won’t be discussing this further in this article.
  • Coeliac Disease is an auto-immune condition where the reaction to gluten causes damage to the small intestine.  There is a good explanation of how gluten contributes to Coeliac Disease and damages the gut at SCD lifestyle.
  • In Non-Coeliac Gluten Sensitivity consuming gluten does not cause damage to the small intestine, but there is an immune response.  People with NCGS are more likely to have non-GI symptoms such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers.  The symptoms can occur hours or days after gluten has been eaten source.  There seems to be some confusion in the literature as to whether people with NCGS have a damaged gut.  my understanding is that damage can be present, but it’s not caused by gluten (because that would change the diagnosis to Coeliac Disease).   This post lists the other causes damage to our gut.

More detail on the differences between these three types of reaction to wheat/gluten can be found in this paper if you’re interested. In all three conditions the immune system is activated, but in different ways.

There are tests available for Wheat Allergy and Coeliac Disease, although it’s possible to get false negatives in Coeliac Disease diagnosis.  There is currently no test that can diagnose NCGS. Therefore it will not have been excluded as part of your diagnosis of CFS/ME.

What happens to gluten in a healthy gut

Digestion of Wheat Proteins happens in two stages in healthy individuals:

1. Stomach – Digestive juices produced by the stomach wall split the proteins  into peptides.  These peptides move to the small intestine for the second stage of the process.

2. Small Intestine –In the small intestine they are subjected to pancreatic juices and then reach the intestinal wall where they are broken down by enzymes in the gut lining.  Even in a healthy gut these peptides are resistant to digestion.

What happens to Gluten in a Damaged Gut

With damaged gut flora the second stage of the digestion process does not happen, as a result the peptides get absorbed into the body and cause problems: in particular, problems with brain function and the immune system.  A damaged gut is one of the characteristics of Coeliac Disease, and can also be present, but usually to a lesser extent in NCGS.

Can I have Gluten Sensitivity if I have a healthy gut.

The simple answer is Yes.  The sources I have read here and here agree that NCGS can occur when there is no increase in intestinal permeability.  It is an immune reaction.

Conclusion

It is possible to have Coeliac Disease or NCGS and be unaware, because the reaction to eating gluten is sometimes delayed by several hours or days.  Given that most people eat gluten containing foods several times a day the best way to see if you react to gluten is to remove it from your diet completely for 2 weeks and see if you notice a difference.

I know first hand how daunting it is to make a major change in your diet when you are suffering from CFS/ME.  I explain in this post how our family coped with changing to a gluten free diet for first my daughter and then me.

There is plenty of clear evidence that NCGS does exist, but this does not seem to be widely known by many doctors.  If you want advice from your doctor about whether you should try a gluten free diet I suggest you first question them on their knowledge of NCGS.  If they are not aware that the condition exists and that there is medical evidence to support this, they are not in a position to give you advice about going gluten free.

Please note that I have no medical training and my recommendation in this post is based on the reading I have done and my own experience of following a gluten free diet.

 

 

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Posted in science, unhelpful foods