My Road to Fitness – Finish line August 2014

This will be my final post of my monthly ‘Road to Fitness’. I had hoped to finish next month to mark my one year anniversary since my ME relapse. However, I’m having to pull out before the end of the race due to…incompetence! computer-frustration-mutual-cartoon
Somehow I inadvertently lost my Track and Share app where I’ve been recording ALL my data: how much I drink, sleep, excerise and every manifesting symptom. It’s doubly frustrating to loose my final evidence as it was looking as though I was heading for a record-breaking month. (As of 28th August, my average grading for August was 6.2 matching my previous best month of May.)

My personalised grading chart:

1.0 Unable to get out of bed
2.0 Need additional bed rest during the day
3.0 Up, but cognitively and physically limited and fatigued most of the day
4.0 Up, but either cognitively OR physically very limited
5.0 As above but for shorter periods of the day
6.0 Occasional mild symptoms when at rest (Eg unable to tolerate noise etc)
7.0 Able to complete daily chores without symptoms ( heart & breathing normal)
8.0 Able to do daily chores and gentle exercise (e.g yoga/pilates) without symptoms
9.0 Able to do daily chores and gentle aerobic exercise (e.g walking)     “       “
10.0 Able to do aerobic exercise (e.g Zumba)*

However, the conclusion of this blog needs to be more than numbers. My aim was always to get back to personal fitness and regular exercise and although I have failed in that attempt there is much to be optimistic about which still makes me feel very much a winner!

I’m delighted that I’ve reached another personal best in August of being on average 62% well. Although I’ve made good progress I’m aware it still leaves me 38% short of being back to where I was last September.

I have always loved my fitness and exercise and it was my ambition to get back to these as quickly as possible. I knew from my experience of having ME 18 years ago, that pacing was crucial and allowing my body to heal / rebalance was the only way I could move forward. elephant-balance-300x259
I wasn’t sure what helped me to gain that rebalance after my first diagnosis in 1996. It was a very long, slow process with regular setbacks, but I did, over the course of years, eventually get back to regular exercise on top of work, voluntary commitments and running a family home when my husband regularly worked away. I felt sure I could do it again. Surely the combination of previous experience and determination would be enough to help get me back on track quickly this time?! (wrong!)

I started this blog because I wanted my illness to be an opportunity to help others. I hoped it would illustrate the complexities of the illnesses and dispel the myth that it is primarily a psychological condition.After diagnosis, it can be so confusing to know where to start in order to get yourself better again. I was aware that some options, such as Graded Exercise Therapy, came with real dangers.

Whatever the outcome for me could be a learning opportunity for others which is why I tried to make it as honest and objective as I could.
It’s also been a learning tool for myself. Keeping an objective account of my daily health has helped me see my overall progress when some days, progress felt non existent.

There were no surprising trends from recording my detailed data: exercise, long conversations, sensory overload or cognitive work could all increase fatigue, muscular pain and noise sensitivities. My health fluctuated from month to month, week to week and day to day. Even within a day itself there could be wide variation. Sometimes dips had no obvious explanation at all.

I was also relieved (but not surprised!) that the weather had no impact on my symptoms ( despite what so many of the general public might believe!) .

Happiness levels were also relatively high throughout the year and had no clear bearing on my health dismissing the myth that ME is a form of depression or a psychological state. That’s not to say that I didn’t get down or fed up because of my illness, but I’ve generally felt content and optimistic about the future and my family have helped significantly.

The last year has been incredibly hard work. My GP didn’t know about ME and we have no Specialist in our area. It was therefore up to me to find the strength to research who I could trust with advice and to find suitable and accessible treatment. In the early days an hours reading would be enough to put me back to bed so it was a slow process!

Hopes of recovery have been raised and dashed on more occasions than I can remember; making plans for the future have been put on hold, social contact and commitments have taken a huge hit, physical exercise has ceased altogether and I feel a very different person to the one I was this time last year.

I would have loved to finish my blog by telling you that I had made it back to sport and exercise and ready to hit those Zumba classes again! The reality is that it’s been much harder than I anticipated.

Zumba-Joy-300x200

Despite my previous experience; best efforts; an incredibly supportive husband; huge willpower; positive attitude; pacing; 6 months of a strict gluten free, sugar free, stimulant free, low GI diet; a whole battery of supplements I’m still shocked at how fragile my health still is. At the start of this relapse, I never dreamt that I would still be having difficulties with fatigue, weakness and cognitive limitations. ME should never be underestimated and needs to be treated with care and respect from the sufferer. In time, and with more research, I hope it will also be treated with care and respect from the wider medical profession.

When I look back at my list of symptoms in my first ‘Road to fitness’ post I realise just how far I’ve come. I’m writing this in early September and I’ve already had a couple of days of being a whopping, record-breaking 80% well!

What does 80% look like? Well based on my initial symptom list in my first blog http://wp.me/p4dXAG-M

Physically

  • Heart rate & breathing are generally far more stable and regular
  • Numbness and pins and needles have gone
  • I can stand for longer periods ( & sing for a good couple of songs!)
  • I can do short walks ( to shops etc )
  • Limbs are generally stronger: Aches, shakes & twitches are very much the exception rather than the rule
  • I’m only aware of very mild noise sensitivities if I’m overly tired or fatigued
  • Balance is greatly improved and dizziness has gone
  • sleep is significantly better – only very occasional insomnia
  • Still prone to regular sore throat & swollen glands (recently discovered antihistamine helps)
  • Fatigue is now my most disabling element, but less severe and often
  • Exercise is still limited to household chores

Cognitively

  • I’m able to multitask!
  • ‘Brain racing’ has stopped and my thoughts are generally clearer
  • Memory and language is much improved although still far from normal
  • I’ve taken on my first trial project since my relapse which is going well

It may be obvious to say that a big positive of my ME journey is that I’ve not become worse! Not all treatments are risk free and many with ME have gone from mild to severe simply by following ill founded advice.

So, I’ve given my best to this recovery. I’m grateful that I can enjoy doing the gardening, shopping and cleaning again. Walking beyond 30 mins on a regular basis still seems too much for now but with another stabilised month in the bag I’m ready to give it another go.

Whilst I won’t continue recording the minutia of my daily health from now on, I will continue to use my own grading system to track my progress over the coming months. It’s something that I’ve found really helpful.

This Road to Fitness turned out to be not just a marathon, but a back to back marathon! However, I’m very grateful to record progress at all. For some people, they are locked in to a gruelling mix of  far worse symptoms for far longer than me and it’s with these people in mind that I want to continue raising awareness into this chronic, disabling and yet often trivialised condition.

 

Before I sign off I would like to say a few thankyous:
Fistly, my husband who has been amazingly patient, loving and understanding throughout this difficult year. I can never thank him enough.
Secondly, my Combination Therapist (Norah Wickerson) who has been incredibly helpful on my ME journey. Whilst her approach offers no cure, I’m quite sure that I wouldn’t be as well as I am today without her help, support, guidance, reassurance and expertise.
Thirdly, you! I’ve been so encouraged by both the ME community who have helped share my journey and friends (virtual and real!) who have cheered me on.

I will still continue to Blog on ME but I feel it’s time to move on. I want to blog on other things relating to faith, health and sport. (It could be a random mix!)

You’ve been a great crowd, but it’s now time for me to retire from this particular race!

falling over finish line

Road to fitness: July 2014

A month of two halves
A month of two halves

July has been a month of two halves. My blip at the end of June continued for 3-4 weeks. Any blip is scary as there is no way of telling if recovery will come quickly or not or even whether it’s the start of another progressive downward spiral. At least this month I finished on a high so it feels like a positive month! On my 1-10 grading scale, I started the month on 3.8 but finished on 5.7 with a mid month peak of 6.9

July grading on my 1-10 scale
July grading on my 1-10 scale

 

 

Looking at my results I’m surprised how low July’s mean monthly scores are. I currently feel much better than my average of 5.27 but it’s a good reminder how fragile the recovery process is and not to get carried away. I’m also aware that it it makes a difference where in the month my peaks and troughs fall.

July Track & share

 

What was new in July?

I started taking antihistamine  & Manuka honey ( at recommendation of my combination therapist)

I focussed purely on strength work and avoided all temptation of any aerobic work. This comprised of prescribed physio exercises and pilates at home. I even ventured to an ESP exercise class. It was fantastic to put on my kit, pick up my mat and walk!

Making that first step into a familiar exercise class was scarier than I expected. My head was full of excitement but tinged with concern. Was I being foolish to try? Was it too much too soon? Would I pay the consequences? One of the troubles with ME is whatever you do or don’t do, the consequences can feel like your own fault!

I was aware how confusing it must look to people that know I have ME. Passers by that saw me in my kit would understandably question if there was really anything wrong with me at all! It’s the nature of the invisible illness but I’ve long since stopped worrying about what others must think of me! None the less, I was aware that I must be sending out confusing images.

 

Running on Empty
Running on Empty

Less than a year ago I would do the ESP class as a mere cool down from an energetic Zumba class. Despite it being only half an hour, a lot of the exercises were beyond me and if I’m honest, it was humiliating not to be able to give it my all! ( I’ve been advised to only work at 30% of my potential) I wore my ME ‘Running on empty T-shirt’ to almost justify why I was so weak and limited in what I could do, but it still felt good to be doing something, to be in good company & sense the improvement. I’m experienced enough in Pilates to take exercises back a level and to be in control of my limitations without needing to sit out.

 

Thankfully I had no ill effects afterwards and I intended to go back. However, with my renewed energy came renewed vigour pottering in the garden. I therefore decided not to overdo things too quickly and so just kept the exercises going at home but I do hope to pick it up more next month and if I still have no ill effects, maybe a walk or two or even a Fit Steps class.

I’ve learnt my lesson from last month and I’ve been forcing myself to rest for longer than I feel I need to and I’m pleased to be reasonably stable for the last couple of weeks. I’ve also managed to keep my Gluten, sugar, stimulant -free, low GI diet going throughout this process. I would love to be able to sign off in September saying that I’ve managed a Zumba class with no ill effects. It’s a big ask but I’m still holding onto the dream…!

 

I’m questioning the benefit of continuing this style of blog so I plan to cross the finish line of ‘My Road to Fitness’ in September. This will mark the year anniversary since the start of my relapse and give me more time to blog on other issues close to my heart.

My Road to Fitness: June 2014

Falling flat on face

I’ve been dreading writing this month’s post. After the euphoria of last month’s progress and the green light to start on gentle exercise again, the warnings about activity and ME are echoing round my head as I stumble down my grading chart and ponder what went wrong. ( I slid from 7.4 To 3.8 on my 1-10 scale)

 

June Grading The first half of the month continued well and it was a joy to stride out on gentle walks and celebrate my birthday (even if it was without the usual obligatory cake, chocolate and champagne/alcohol!)

Friends commented on how much better I seemed and after nine months it was a fabulous feeling to honestly confirm this as true.

The second half of June saw things start to unravel rapidly. (This can be see on my Grading graph but not really reflected in my mean Health Items chart)

Ignore readings for July
Ignore readings for July

To what extent this was due to increasing my activity is unclear. Summer viruses seem to be in abundance and my own feeling is that the flare up was more a result of me picking up another mild virus as my dip was accompanied with intermittent sneezing fits, streaming nose, sore throat and tissues galore! My glands were also more enlarged than normal.

I’ve still maintained my strict diet and supplements so the fact that I’ve reacted so badly to such a small virus is disappointing to say the least. I can’t be sure whether the extra activity was stretching my body to its limits and whether this could have been avoided.

I know it doesn’t take much for me to be knocked off course. I guess I need to remember that it wasn’t just occasional walks that had increased this month. I had already increased the amount of domestic activity: cleaning, shopping, gardening, my social life, and with it expectations of myself, friends and family that I was capable of doing so much more than of late.

Although all of this extra activity is fantastic psychologically, it’s hard to remember that with ME, good and bad stress all takes its toll on the body. It is SO hard when you’re feeling better to rest and change the rhythms of life that you feel comfortable with. It’s amazing how quickly I can slip from resting out of necessity to feeling lazy!

However, it makes sense that if I’m doing more I need to counter balance it with resting MORE whether I feel like it or not. I know diet, supplements and exercise are no cure for ME but it is all I have to try and re-balance the body the best I can to give myself a fighting chance. The problem about trying to keep a balance is that you don’t know how far you can tweak the balance until you tip off the scale!

It’s been a wake up call (again!) how quickly & easily I can slide down the scale after starting to  feel so well. The scary part is not knowing how long the climb back up will be.

However, there are some positives this month:

1)      My exercises have helped relieve my pins and needles in my arm

2)      Sleep hasn’t been effected too much during this flare up

3)      London School of Hygiene & Tropical Medicine are interested in my case and have been in touch to arrange blood samples for their ME CFS Blood Bank

4)      I had a lovely birthday with family and friends!

 

So next month’s plan is to rest more, stabilise, then resume some gentle exercise and rest more so I can bring some better news for next month! Onwards and upwards!

Relevant links: Prof Julia Newton “Metabolism and the Muscles” Explaining why only some sufferers are exercise intolerant & finding that acid levels that are 20% higher in muscles of people with ME. www.youtube.com/watch?v=0UFTngBp7ek

My road to fitness: May 2014

May was my first big hurdle, it was going to be a big test to see if I could clear it or fall flat on my face again.

May: My First Big Hurdle
May: My First Big Hurdle

Two weeks of May were spent away from my own home and family on a Cruise as a carer for my Mum. She is severely disabled from 34 years of Parkinsons. Mum and Dad need two carers plus specialist equipment whenever they go away. My Sister and I were carers for this trip. It was further complicated by my Dad also being unwell before and during the trip and the fact that all of us were novices on this voyage.

Ironically we set sail on May 12th: International ME Awareness Day.

I’ve spent weeks and months making sure that I do things carefully at my own pace, being meticulous on my diet, and avoiding well known triggers. It was to be a holiday of lifetime for my Mum, who suffers silently without complaint and is a joy to be with. Pacing is so important in managing ME yet I knew for two weeks it would be largely out of my control. I also desperately wanted to make sure Mum’s needs came first and that she had a holiday that she deserved. Clearly, this was going to be a tricky balancing act to pull off and I fuelled it all with a lot of prayer!

New routines took time to be workable and I couldn’t have done it without the help of my Sister who was fabulous in taking the lead in caring for us all and being such good company!

However, I’m pleased to report that I cleared the hurdle! It wasn’t the cleanest and I caught my foot a few times (as can be seen on my daily grading record) but despite all the caring duties there was plenty of opportunity for rest and relaxation overdosing with vitamin D from the sun instead of a bottle! Cruises cater brilliantly for all diets on board and I impressed myself with my will power in turning down free champagne, wine, ice cream and even gluten free cakes! I stayed clear of the pool and spa which often make me unwell and generally avoided anything that I was unsure of. However, I did manage an on board yoga class which posed challenges of its own whilst at sea with stabilisers on! Boy, it felt good just to be in a gym class with my kit on!

May track & share
Ignore all readings for June

 

May Mean Weekly Gradings: 5.4-6.80
May Mean Weekly Gradings: 5.4-6.80

A few weeks ago I wouldn’t have managed the long labyrinth walk from our cabin to breakfast, never-mind being able to push Mum in her wheelchair around most of the boat. I also had two weeks without stairs which was bliss! Mum had a fabulous holiday, we were able to spoil her rotten and I came home continuing to make improvements. I had even reached the dizzy heights of a 7.0 on my Grading scale!

The icing on the cake for May came when I returned to my Combination Therapist, Norah Wickerson http://www.tacklingfibro.co.uk/ Diet and supplements were reviewed and tweaked, breathing exercises were introduced as well as hands on physio which was a voyage of pain, discovery and relief! Gentle, simple exercises were rehearsed accordingly and then came the cherry on the top: discussing how to get back to regular sport and exercise! Apart from the usual caveats of careful pacing, I was given the all clear to start my come back.

I tried to keep composed and dignified but when someone offers you a dream that you had almost given up on, emotions run high. It’s was either a case of me kissing my therapist or bursting into tears! Fortunately for Norah, I went with the latter and came home on cloud nine!

So, after 8 long months I’m poised at the start of a long, gradual fitness regime. I’m happy with 20 minutes of walking and limited Pilates for now. It wasn’t long ago that this was still way beyond me so I’m already beyond the start. This next phase now feels like it’s a realistic, safe start. I will keep you posted with how I get on!

I know my road to recovery still has a long way to go, but with May successfully conquered I’m starting to dream that I could win this race!

 

My Road to Fitness: April 2014

Starting race

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!April selected Track & share

April Grading

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!

starting 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!

 

+++++++++++++++++++++++++++++++++++++++

 

 

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’ )

Grading screenshot

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

 

 

ME and my road to fitness?

 

 starting blocks

 

Background

I managed to recover well from my first ME diagnosis back in 1996. It took time, years to get back on track but I managed to exercise regularly ( run 3-5 miles twice a week, Pilates, & Zumba on top of a very ‘active lifestyle’)

Last September I realised that I had more than a normal blip after running whilst starting a seemingly harmless cold. What followed was a continuous downward spiral/ relapse that was devastating and scary. I never saw it coming and never knew it was possible.

Purpose of this Blog

Sport, fitness and healthy lifestyle are part of who I am. Ironically, promoting it is even part of our family business! One of the diagnostic traits of ME (as opposed to Chronic Fatigue Syndrome) is that sufferers are exercise intolerant and almost all sound advice is that exercise should be avoided. Frustratingly, this has been true for me. There is much evidence to suggest that exercise can make people far worse and indeed going from ‘mild’ ME to becoming wheelchair bound as a consequence.

However, the fact that I somehow made a good recovery from ME once before, gives me confidence that I could do it again.

I can’t help but feel there are either cycles within the ME illness itself or the illness is on a continuum / has different subgroups. This might explain peoples differences in being able to tolerate exercise either short or long term and their chances of recovery. Researching ME/ CFS is like trying to find the right numbers on a combination lock; some bits make sense and could be part of the solution but it’s frustrating trying to find the right full combination to regain health!

If it was a case of determination getting me back to fitness I would be pretty confident I could do it, but ME is determinations big enemy. I realize that my attempts at returning to fitness could be risky, but having taken wise counsel, it’s a risk I need to take. Some have told me I need to grieve and accept the change in my new lifestyle but whilst there is still a glimmer of hope to get back to fitness, I’m not ready to go there yet. I’ve discussed it with my husband who, as ever, is fully supportive.

I’ve tried to find someone that could help me on my journey but without fully knowing other people’s credentials on ME I’ve decided that I’m probably the best expert on my own body. So, if it goes wrong I’ve only myself to blame!

As someone used to regular exercise I’m tuned into when the aches in my body felt ‘good’. I used to get quite a buzz from these muscle aches as it meant I had worked hard. I loved those aches! However, these are very different to the aches I’ve experienced during my relapse. These always result in the fatigue and symptoms of my condition being exacerbated further.

I must stress that I’m not advocating Gradual Exercise Therapy. Based on my past experience, this would be a recipe for disaster! My only expertise in this field is my own body and previous experiences. I will not attempt any increased activity until my condition has stabalised so this will be my starting point. I’m using ‘activity’ in it’s broadest sense. Even lifting a finger is ‘activity’! I’m not going to follow any programme other than knowing and listening to my own body.

I’m currently 6 months into this relapse and I’m starting to have a few consecutive ‘better’ days. I’m waiting to make sure this stablises before I even think of going any further. I’m using a heart rate monitor and a Nike Fuelband* to make sure I keep within safe limits and I hope to blog my progress. The purpose is to try to help me discover my body even better, encourage me to restrain myself to stay within controlled limits (I often overestimate how much I can actually do!) try to give me a feeling of ‘empowerment’ over my illness and (hopefully!) to see progress over the coming months. I don’t know whether it will be a long, winding road, a dead end or a road to no-where! I’m just hoping it won’t be a long, slippery road back to the carpark! Whatever the outcome, I’m also hoping others will benefit from my experience. I do promise to be honest!

[NB:* Before my relapse I wore a Nike Fuelband to set myself targets for daily activity & exercise. It was surprising how much ‘fuel’ ie energy was spent just pottering around the house compared to an hours full-on exercise. I now intend to use the Fuelband to make sure that I DON’T exceed a daily maximum]

My story summary so far:

I’ve previously blogged the background to my first ME diagnosis “I’m coming out, believe ME” but as a starting point it‘s probably helpful to set on record a summary of how the recent relapse has effected me:

Since September I tried to maintain my work & voluntary commitments for as long as I could and resting much more in between, but it soon became clear these couldn’t be maintained.

I’m fortunate in that I work from home with my husband who is incredibly understanding and supportive. He took on our domestic duties as well as running our business.

Shopping was all switched to ‘online’ and we employed a weekly cleaner.

I completely pulled out of all my voluntary commitments at church and

put all other commitments on long term hold (except for Brownies where backup allowed me to attend as and when I felt able, even at short notice)

My precious days out with my Mum (severely disabled due to 34 years of Parkinsons & Dystonia) were reduced to short visits or frequently cancelled

My rigorous exercise regime was gone and I struggled to even get up stairs.

There are different degrees of ME. Even though it turned my world upside down again I would describe mine as moderate in that I could care for my own personal needs but needed help with almost all other daily domestic tasks. (See summery of NICE guidelines for severity classification) Getting out has been severely limited and whilst not bed bound, I’ve required lots of periods of total bed rest and sleep. (People rarely see anyone with severe ME as they are fully housebound and sometimes bed bound.)

How it affected me – symptoms

 

‘ME’ can mean different things to different people so, to be clear, I’ve listed my main symptoms. Fortunately I didn’t have all these symptoms all of the time and they would all vary in severity:

Physical

  • Strange breathing patterns – Constantly having to take forced deep breaths. Standing or talking for long would make me yawn, feel drained & exhausted.
  • Heart – race & stop (24hr ECG showed ectopic heart beat)
  • Numbness/ pins and needles – hands and feet especially first thing in morning
  • Difficulty standing – Standing and talking was particularly difficult and standing and singing left me feeling particularly weak and unable to breathe fully resulting in more exhaustion.
  • Heavy, weak, achy limbs ( but not overly painful)
  • Arms, legs, hands – twitchy, shaky. (felt like having popping corn in them!)
  • Neck ache (and occasional headaches)
  • Noise intolerance – Couldn’t filter out background noises e.g two people talking at once / talking over background noise. Soft noises such as bags rustling or small, jangly bracelets seemed excruciatingly painful, loud and exhausting
  • Dizziness- loss of balance, ( felt like labarynthitis )
  • Swollen glands
  • Fatigue – Often needed to go to bed in day due to physical, sensory or cognitive overload ( typically sleeping 2 hours a day)
  • Sleep – Difficulty getting to sleep and/or waking up wide awake for 2-3 hours a night (surprisingly, it was my better days that resulted in poor sleep at night.)
  • Rashes – Intermittent rash on body/abdomen and peculiar internal lumps and bumps!

 

Cognitive:

 

  • Poor memory – Short term memory was particularly bad ( including visual where I have always been very strong)
  • Language – Would have ‘blanks’ on written and spoken words. I would hear words and forget what they meant. If people asked me a question, I might need to rehearse the words over in my head to work out what they were asking me before I could think of  my answer. This was also true for reading: I would read and re-read information but not take it in. When I did take it in, it was then hard to recall what I had read! I would often forget how to spell common words and how to form letters (I could even loose the flow for writing my own name) Frequent word finding difficulties and thinking one thing and saying another. ( sometimes I was aware and sometimes only made aware after my family laughed or looked quizzical!!) I tried to write blogs. I knew I had ideas but couldn’t retrieve them and string thoughts together. It sometimes hurt to think and again caused exhaustion.
  • Brain racing! Felt as though my mind was on overload thinking, but I didn’t really know what about! This often happened at night.
  • Poor organizational skills – Very uncharacteristic of me! Could take me all day to do the simplest tasks to keep my brain focused and sequence what I needed to do to complete tasks such as emptying the dishwasher, tidying my desk etc!
  • Definitely lost the ability to multitask!

Although I was able to laugh at a lot of these difficulties when they occurred, I found the cognitive problems really knocked my confidence as there was no reason for people to have confidence in what I said anymore. It made me feel like a very different person.

Stuck on the starting block.

 

My GP is approachable and has tried to be thorough but admits she doesn’t know much about ME (This has been far more helpful than GP’s pretending they know about it and giving hurtful and sometimes harmful advice)

I was shocked how few specialists there are for ME ( there are none in my own Health Authority) and even more shocked how few of these were actually recommended!

After much searching, it looked as though private specialists would be the best way forward (Much against my principles!) I did find one that came highly recommended with an excellent self help website. I intend to pursue this further.

The last 4 months or so have consisted of resting and reading. There is a wealth of information online but, as with everything, it needs a lot of sifting through. I wish I had paid more attention in my Neurology and physiology lectures when I was doing my speech and language therapy training now!

ME forums, blogs and twitter friends have also been a wealth of information from their own experiences and research.

I soon got a picture of what might work for me. I discounted psychological approaches:

1) The initial onset of illness hit as a result of a virus which also caused 3 of my other therapists to give up their profession (one of which with Lupus). Another speech therapist also showed signs of the ME but I’m unsure whether she was able to continue with work. I fail to see how a small outbreak cluster can be passed off as ‘psychological’!

2) Because this relapse hit me at one of the happiest, fittest, least stressful times of my life

Supplements:

I’ve tried pure Aloe Vera, Bee Pollen with no noticeable effects

D-Ribose – no significant change although later combined it with Q10 (100mg) and my head did feel clearer. It was around this time that I did feel I was starting to stabalise.

Since finishing the Aloe Vera I’ve continued taking Slow release Vit c and Pro-biotic (Yakult) as I always did before my relapse.

February Activity: (Score: 2.0-5.5)

 

I feel pacing/ resting has been most helpful so far.

I have just started doing 10 mins of basic core strength pilates per day (if not fatigued)

Last week I felt well enough for a gentle stroll twice our park. My friend commented how well I walked and attributed it to me talking whilst walking (implying it was mind over matter!) However she wouldn’t have been quite so impressed if she saw me the following day! My big error was probably choosing a day when I also had three lots of separate visitors/meetings. The fatigue started that evening and got progressively worse. I was back to bed rest again the next day. My body clearly isn’t quite ready for any additional activity yet!

 

 

Grading my symptoms

 

This started as a joke! I hated answering the question ‘How are you?’ so I said to my husband, I wish I could answer with a number!

I then tried to list my symptoms in severity on a scale from 1.0 -10.0 ( I’m not entirely happy with the descriptions in this scale but it should give some bench mark of where I am each day.)

1.0 Unable to get out of bed
2.0 Need additional bed rest during the day
3.0 Up, but cognitively and physically limited and fatigued most of the day
4.0 Up, but either cognitively OR physically very limited
5.0 As above but for shorter periods of the day
6.0 Occasional mild symptoms when at rest (Eg unable to tolerate noise etc)
7.0 Able to complete daily chores without symptoms ( heart & breathing normal)
8.0 Able to do daily chores and gentle exercise (e.g yoga/pilates) without symptoms
9.0 Able to do daily chores and gentle aerobic exercise (e.g walking)     “       “
10.0 Able to do aerobic exercise (e.g Zumba)*

*This is my ultimate dream although Prof VanNess’** research would argue that aerobic exercise damages the ME patient as their systems are working at an anaerobic rate for everyday tasks and therefore can’t be maintained long term.

I’ve read many other articles suggesting that exercise must be of short duration and non aerobic so I’m not ‘in training’ for Zumba but hoping and praying that I can allow my body to recover enough to allow gradual increases in activity ( NB:Again – not the same as Graded Exercise Therapy as I’m following my own body and not a programme)

I’ve also discovered an app ‘Tracknshare’ to help log activity, symptoms, diet etc so I will see which method of recording is the most reliable.

This has been a long introductory blog. Well done if you’ve got this far and if you’ve got ME I hope I’ve not exhausted you already?! It’s taken me a month to write it so I can guarantee my updates will be much shorter!

I would love to hear from any other sport loving ME sufferers or anyone with an interest in sport, exercise and ME.

** Prof Mark VanNess ‘Exercise and ME/CFS’ Voices From The Shadow event,  Bristol, 5th Feb 2014 ( video)