My Road to Fitness: April 2014

April was an exciting month for me. After months of posturing and changing lanes and going nowhere it felt as though I was finally off!

After 6 weeks of  my new diet, it is becoming more natural and routine. I’m also remembering to take my supplements ( to help my memory amongst other things!!) and after 7 months, April has blossomed a whole series of firsts:

• Having full nights sleep
• Waking up feeling refreshed
• Being able to eat breakfast within 20 minutes of getting up
• Enjoy meals out with friends
• walk downstairs without ‘shaky legs’
• To join in conversations with groups of people
• Not be exhausted by noise sensitivities
• To sit and talk with friends for more than 1 hour
• Heart rhythm to be more stable
• To have renewed interest in shopping ( much to my husbands concern!)
• Occasional multitasking!
• Walking further distances
• Pottering around the house and garden
• Standing and singing in church
• Leading a Brownie meeting
• Visiting  a museum
• Tolerating some strength/pilates exercises

To an average reader, this might not appear an exciting list, but to anyone who has suffered with ME, they will appreciate that this is a very exciting list!

I don’t want to give a false impression that everyday has just got better and better. My ‘best’ days have still been proceeded by a big dip (Post Exertional Malaise) These can be seen on my weekly record charts. However, I seem to have bounced back much quicker ( Typically 1-2 days rather than weeks) . Other physical symptoms have persisted: in particular my pins and needles, numbness, swollen glands etc. I’ve been following the advice of my Combination Therapist in quitting whilst I’m ahead and taking regular rest. It’s a hard discipline to follow when you feel that you have renewed energy. The temptation is to make up for lost time, but it is good advice and I try hard to follow it.

‘Better’ is a strange word. It can be both relative and absolute. For someone with an invisible illness it can be misleading. It’s great to be able to tell people the positives but I prefer to use the term ‘improving’. I am still a very long way off  ‘better’ but I do feel as though I have reached my first goal of being stable enough to try increasing activity. Some of my friends that know about my grading system will now ask how I am from 1-10. I love seeing onlookers faces when I come back with a confident 6.9! April’s grading ranged from 4.41-6.90 (NB My personal grading criteria can be found at  ‘My Road to fitness’  Blog Feb 2014) I’m now seeing the benefit of recording my daily progress. It spurs me on to see how far I’ve come rather than how far I’ve got to go!

My exercise for April consisted of 10-15 minutes of Pilates at home alongside some strengthening excises from my physio. This time, I’ve had no side effects and hope to extend these next month. My aerobic exercise has just consisted of extra household activity for now but again I’m looking forward to extending this next month.

May will be a huge test for me with some big challenges that I will report on next month. It’s going to be hard to stay within my ‘quitting whilst I’m ahead’ limits. I’m not sure what distance I’m running, I’m not sure I’m fully prepared. Winning the race isn’t important to me, but it’s definitely the old adage that it’s the taking part that counts. For now, it just  feels good to be out of those starting blocks! This race will certainly include hurdles but I’m just hoping and praying that it’s not a false start!

My Road to fitness – March 2014

Road to fitness -March 2014 ( Rating: 3.01-6.20 )

 

Swapping Lanes!

Well, March didn’t go at all as I had planned…!

Last month, I discovered even a stroll through our park was too much so I planned to focus on simple Pilates and strength work. I soon discovered how poor my breathing had become and that I wasn’t able to weight bear on my right shoulder. I sought the help of a physio which was the catalyst for a whole new approach…

 

 

The physio took careful notes and seemed surprised about my condition. (It turns out she had seen me in action at my Zumba class last year!) She was visibly shocked when she assessed me and was very concerned how weak and shaky I was and recommended a neurological referral. She also gave me some simple strength exercises to try ( 3-5 light repetitions max ) but also strongly recommended that I contacted a former colleague of hers, Norah Wickerson, who had suffered from Fibromyalgia for 20 years herself, researched it, and got herself recovered enough to qualify as a nutritionalist to help others with FMS and ME.

 

I must admit I didn’t really see how a nutritionalist could help, but intrigue got the better of me and had to take a peek: www.tacklingfibro.co.uk ( I found the ‘News’ section particularly helpful)

Intrigue gave way to excitement as I read about the ‘Combination Therapy’ approach. My eyes were opened to all the different interactions of proteins and enzymes in the body and how gluten plays such a key role in many neurological and autoimmune conditions.

 

The first time I fell ill with ME (18 years ago) I was put on a similar diet by a kinesiologist. I didn’t have much faith in it and tried virtually everything else at the same time: herbal remedies, acupuncture, supplements, Chinese medicines etc etc. I never knew what actually aided my first recovery but when my test for coeliac disease came back negative I discounted the diet as a treatment plan.

Coeliac disease (gluten intolerance) is rampant in my family and I’ve since discovered that many people can be sensitive without showing intolerance. I hadn’t appreciated how devasting the effects could be.

A quick email and long phone call to Norah only heightened my excitement that this was the right path for me. It made good sense and there seemed nothing to lose apart from my love affair with good red wine!

 

My appointment was booked for 2 weeks later in Derby and I started my diet straight away. This meant eliminating all gluten, stimulants (including my much loved coffee and wine!!) starchy foods such as white rice and potatoes and sugars. (God blessed my husband through the first week by keeping away from home on business…!!)

 

People that know me will vouch that I have never chosen to diet before ( I’ve always had what is generally considered a healthy diet and preferred the exercise option!) They will also vouch for the fact that I have never even managed to give up wine for lent never mind long term!! (shameful confession!) One would imagine that giving up all my favourite things in one go would be impossible – devastating even. However, I was strangely excited. I really felt this would be the way to help my body stabalise properly.

I spent most of my limited energy preparing food. It’s not how I would normally choose to spend my time but I actually relished it! It was my way of fighting the illness and it was good to be in control of it for once, rather than at it’s mercy. As a non-creative cook, I was very relieved for the recipe book that Norah provided me with!

 

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So, March began with me doing the simplest of strength exercises and a radical change in diet. ( I never seem to learn never to try two new things at once!) It was agony! I was on constant pain killers day and night. Although my muscles ached, shook, twitched and felt heavy, they had never been painful before – until now! My Lymph nodes in my groin and underarms were also tender and painful and my head thumped for 3-4 days. Norah advised me to stop the exercises and focus on rebalancing the body first. She encouraged me that the pain was a positive sign – probably the Candida dying off. Sure enough, after a worrying 4-5 days the pain had gone again.

 

Week two was much better and I was even able to make a glutenous birthday cake for my daughter (that I didn’t eat!) and host a party for 15 twelve year olds!! However, another 2 day crash followed and I was bed bound again. This was probably the lowest parts of my recent illness. I felt doubly disappointed that despite all my efforts I was still crashing so badly after so little exertion.

 

My (3 hour!) face to face appointment with Norah the following week left me both exhausted and elated. It was the first time that I had spoken to any medic who properly understood the physical effect ME has on the body. I soon pepped up again! She explained that the process can be peppered with peaks and plateaus so I’m more determined than ever to see the process through. She prescribed an arsenal of extra supplements for me including gentle iron ‘to help my stamina for when I’m running again’. I could have kissed her! Not IF but WHEN!!! Even with my lead-like legs I’m sure I floated out of her consultation room!

 

After six months I should be ready for my next stage of my ‘Combination Therapy’…

 

I have started to feel improvements in my physical and cognitive abilities and many friends have commented that I look ‘brighter’. The test will be whether this can be maintained and built on.

So, this is not the report I was expecting to write this month. I’ve nothing to report on my exercise front except that I failed. However, this time failure hasn’t brought disappointment, but for the first time, real hope and optimism. Watch this space…!

 

March Summary ( Grading criteria taken from previous ‘My Road to Fitness Blog’ )

My detailed weekly progress charts can be viewed: https://pbs.twimg.com/media/BkFQf5QIgAAHkar.jpg:large