Living with ME- My husbands perspective

Another ME awareness month arrives and I’m still blogging about life with ME! I’m now in my 4th year of recovering from my full ME relapse. 2017 also marks our silver wedding anniversary. When we made our wedding vows ‘in sickness and in health’ 25 years ago neither of us could have imagined how the years have fluctuated between the two. Therefore, this year, I decided to give my wonderful husband a chance to have his say on what it’s like being a husband / partner to someone with ME.

As a bit of background, ME is classified into Mild, Moderate and Severe. At my worst, I was top end of moderate and rarely got out of the house or could tolerate noise or social interaction. Progress has been fluctuating over the 4 years but I’m now in the ‘mild’ category and have managed to take on a 20hr/week work contract for 9 months. To maintain this I’ve had to cut out a lot of social interaction and things that most people would consider to be ‘fun’.

Even with mild ME my old life still seems a long way out of reach. There are good days; there are periods of good days, but the huge fluctuations between and within each day always frustrate attempts to get life back on track.

The NICE guideline for M.E. outlines three levels of severity – mild, moderate and severe – as follows:

• People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
• People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
• People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise. (taken from Action for ME website)

It’s also important to distinguish between tiredness and (debilitating) fatigue which might not be obvious to the viewer. For me, fatigue is generally extreme tiredness (not refreshed by sleep) which exacerbates:

Heavy ‘lead-like’ limbs (sometimes twitch, shake & ‘pop’)

Weakness – especially in legs, arms and voice

Swollen/tender glands and lymph nodes

Noise sensitivity (causing pain and exhaustion)

Increase in orthostatic intollerance* (causing tachycardia, breathlessness and increased heart rate) *Associated with POTS

Brain fog and impaired memory and cognitive functioning

A full list of ME symptoms can be found here

 

So, now I’ll let Andy have his say…! (apologies for the wind noise at the beginning for anyone who is sound sensitive!)

 

For those that prefer a written format, Andy talks about his frustration on a personal level, and guilt and regret on a wider level, in particular about not giving more time to Prof Ian Gibson (former MP) in championing ME when Andy was in parliament. This is largely at my request as I felt a lot of shame in my diagnosis in the 1990’s due to the poor treatment I received by Doctors and general misconceptions by the public. Little did I know then, how many others were feeling the same!

“I share Sarah’s frustration of people not fully understanding the condition and it’s impact, and particularly the medical profession not really knowing what it is. I really wish more people did know”

Andy also asks if there is a forum for partners/wives/husbands of people with ME to share experiences and support one another?

It’s also an appropriate time to record my deep thanks and gratitude to Andy for always believing me and believing in me throughout the fluctuations and frustrations of this illness. I know that I’m hugely blessed that we continue to live, love and laugh together – in sickness and in health…

All of the below have excellent websites for further information on ME (in alphabetical order) I’ve pinpointed a few pages of general interest:

Action for ME symptoms

ME Action net What is ME?

ME Association controversy

Phoenix Rising

 

Prof Ian Gibson’s book (Former MP and Chair of UK Government’s Science & Technology Committee) catalogues the difficulties of campaigning for ME

NB: ME stands for Myalgic Encephalomyelitis. It is also referred to as Chronic Fatigue Syndrome (CFS)- much to the frustration of many sufferers!

Please do consider sharing something about ME this month. We still have a long way in getting this debilitating condition properly understood, funded and researched.

Follow and join the conversation at #MEawareness or #PwME (People with ME) #MillionsMissing #MissingmoreGET

 

 

 

 

 

 

Why I’m protesting for #MillionsMissing

What is the protest for?

May 25th, 2016 will mark a global day of action for ME (Myalgic Encaphalomyelitis)* There are literally millions of people worldwide who want to stand up and be counted in asking for proper understanding and recognition for their condition, funding for research, and better training for medical practitioners. In the UK, protesters will be convening outside the Department for Health, Whitehall for a two hour silent protest. (Click here for details) Similar protests will also be happening worldwide. See below:

For many people with ME, this is far too big an ask. Many have been housebound for years, even decades, so there will also be a worldwide virtual protest so that everyone has the opportunity of being included. This will primarily involve people sending in their shoes to stand in their place or including pictures of their own.

My personal protest

I have been waiting nearly twenty years for an opportunity to stand up and be counted alongside other people with ME. That’s when I first went missing. The trigger that floored me was a virus. It was nasty but nothing that warned me of what was to follow for the years to come. Doctors made their diagnosis in the absence of research and evidence. I was told it was stress or Chronic Fatigue Syndrome and then finally concluded I was just looking for a way out of work! I tried to re-energise myself with healthy food, fresh air and extra trips to gym but my symptoms went from bad to worse and my career, busy social life and my much loved ability to exercise all went missing.

I hated admitting that I had ME and I rarely did. (ME is still sometimes unhelpfully referred to as Chronic Fatigue Syndrome) It was just so misunderstood. Fortunately my health gradually improved over the years and I made a good 95% recovery with a return to work, volunteering, socialising and fitness. I had conquered ME and the whole painful episode was behind me. So I thought…!

My protest on behalf of others

Two things changed in September 2013 which was a tipping point for me:

1.I had a full blown relapse that rendered me housebound again.

2.Social media. I reluctantly started to connect with other people with ME. I was quickly amazed how many people were out there with similar stories to my own and far worse. I was shocked how widespread and commonplace mistreatment was. There were also countless stories of livelihoods, partners, homes, careers, aspirations and friendships destroyed by this condition that has been unfairly trivialised for so long. People had been stuck in their illness for longer than my first diagnosis, yet there was still little change a decade on. I also discovered the horror of ‘Severe ME’ and how much worse this illness can become.

Research is woefully lacking in funding and consequently, patients are still being blamed for their own illness.

Biomedical research is on our side but there is still a vocal minority that believe ME is a psychological condition creating dangerous consequences and great harm from their ‘treatment’.

Nothing gets my goat more than injustice and I was discovering a group of people that had been hurt, mistreated, marginalised and forgotten for decades, on a scandalous scale.My only shame now is turning my back on a group of people who are desperate for people to believe them, invest in research and can give them hope for the future.

So, I’m relishing the opportunity to stand up as one in a million on the 25th May. Not just a million, but an estimated 17 million people worldwide who have quietly gone missing from society. 25% of these are estimated to have ‘Severe’ ME. Together, we will be making the invisible, visible and we would love to have your support. Please visit ME Action.net

Remembering my virtual community of people with ME

*To learn more about ME please visit:

Action for ME

ME Association

Phoenix Rising

 

 

 

Isolation and ME

This is the third year I have blogged for ME Awareness day. I have shared my personal journey and talked about Acceptance and Strength in Unity.

Two years ago (2014) Action for ME commissioned a survey to see how the illness impacted people living with ME (Myalgic encephalomyelitis). There were many startling statistics from the 2,000 respondents. Among them was the fact that 92% had stopped or reduced social contact due to their illness. So, this year I want to share something about the social difficulties of living with ME. My health is now improving and is therefore easier to share than those who are still stuck in isolation. I want to share my experience with those in mind.

Many people with ME can pinpoint a trigger for their illness. Typically this will be a physical trauma or virus. The usual rules of illness etiquette apply in that ‘get well soon’ messages are received and there is mutual anticipation that you will soon be back to your usual self. However, when the recovery is replaced with a perpetual impasse or gradual deterioration, normal convention rules become blurred.

There is no diagnostic test for ME and diagnosis only comes with symptoms persisting for over four months and after elimination of other conditions . It can be a frightening time not knowing why your body has chosen to cascade into a downward spiral and not knowing where it will stop. Having someone who believes and can make sense of what you’re going through is foundational to accepting the illness and moving forward. It sounds such a basic ask, yet it is still sadly a rarity. Despite the many advances of biomedical science, some in society (including Doctors) still believe ME is a psychological condition and that it is ‘all in the mind’. (There is another full blog post about trying to get appropriate treatment that helps and not harms which I’m not going to go into here.) People are typically having to adjust to losing their jobs, loved ones, social life, independence and the person they once were. It is completely unacceptable that they are isolated further due to ignorance and misconceptions from people that should be offering them care and support.Their ignorance can be hurtful and isolating

When my ME was at its very worst it would be categorised at the upper end of moderate. (see NICE guidelines on severity definitions) There were very few days where I could make it out of the house and when I did, I would suffer the consequences of Post Exertional Malaise (i.e it would make my symptoms worse).The fluctuating nature of ME makes it difficult for the sufferer, family and friends/colleagues to accept how disabling it can be. Some days I could leave the house and some days I couldn’t leave the sofa.

The physical limitations on the body understandably bring isolation but the social consequences can be easily overlooked. I am a people person. I am sociable and happiest in the company of others. Unfortunately my body doesn’t always concur. Friends would offer to take me out for coffee, but trying to follow conversations against a background chatter and the blur of coffee machines was cognitively excruciating, ultimately exhausting and would always make me worse on the following days. Friends visiting me at home were instructed to keep visits to under an hour. Telephone conversations were particularly strenuous and exhausting and something I avoided as much as possible. Emails were a cognitive challenge and drain on energy and even the television was too much on some days. This wasn’t depression. I was totally frustrated with the situation and I can see how depression can become a secondary problem, especially when this continues for years or even decades without improvement. It takes good friends to stand by you when social interaction is so limited and unpredictable. Some can mistake it for lack of interest or commitment, especially when you can look so ‘well’.

At this point I want to thank my family and friends that stuck by me. Some friends understood my Post Exertional Malaise yet showed no compassion malaise. They continued to bring meals, flowers and cards throughout my ups and downs. (I have goose bumps recounting how touched I was). These grand gestures weren’t necessary but were enormously appreciated. However, the simplest, small gestures like texts messages were also much appreciated.

I’m finding it hard to convey how vulnerable I felt during my worst phase of my illness. I have a strong security in my own identity, a fantastic family and wonderful friends, yet the sense of slipping out of society and being forgotten was tangible. The smallest things that acknowledged that I still existed and mattered in this world were a real boost; a quick text  simply saying ‘thinking of you’ would make my day. Twitter became my social life! Not only did I learn a lot of invaluable information from others, but there was genuine friendship from people who truly understood. Conversations were short but sincere and it didn’t even matter if it took days to reply! It seems strange now, but even someone ‘favouriting’ a tweet would somehow help me feel connected to the rest of the world.

Having people value you for who you are and not what you can do is a humbling experience. When people don’t understand the illness, yet still stand by the new, less spontaneous me who is less able to commit and say yes, demonstrates that they believe and value me. I was blessed with many of these friends. Conversely, the opposite was also true. The handful of people that only made contact when they wanted something doing showed either total disbelief or disregard in what I was going through. Having to continuously repeat why I had to turn things down and could no longer commit to, was a painful reminder of what I had become and only added to a sense of isolation and frustration.

I think people that know me may be shocked reading this. It’s not something that is easily shared and discussed. The truth is, I struggled to cling on to the outside world and not get left behind. Even with improving health, this continues to be a challenge.

I do hope that it’s given you some insight into why those stats of isolation were probably so high. If you’re reading this as an ME sufferer I would love to hear how isolation affected you.If you’re reading it because you know someone who has ME then I hope you are encouraged that the small things really can make a huge difference. Why not give them a quick text whilst you make yourself a cup of tea and recover from reading this long blog?!

Further help and information on ME can be found at:

Action for ME

ME Association

Phoenix Rising

#MillionsMissing.

On 25th May I’ll be heading down to London as part of a co-ordinated international protest. As someone who has lost my career and my passion for participating in sport due to ME, I’ll be protesting myself. My health is improving but there are literally millions more who are missing from society worldwide. This chronic illness has been ignored and trivialised for too long and people are living with chronic pain and isolation for years and decades. I’m really excited to be able to be one in a million and bring this to the attention of the Department of Health on behalf of those who would also love to be there. For those who are unable to make the journey there is also a virtual protest and you can send your shoes to make your stand! We will not be overlooked and forgotten! See if your country is participating. Further details can be found here:

Global day of Protest for ME and CFS.

UK day of Protest

The many challenges of recovery.

Sometimes I feel like David facing Goliath. Some onlookers may see David as a weedy, pitiful shepherd boy who may conjure up curiosity, sympathy and concern but not much confidence in becoming victorious over a trained, mighty, giant warrior!

There are many ‘Goliaths’ that I’ve faced since being diagnosed with Myalgic Encephalomyelitis (ME): Disbelieving & disparaging doctors; media that likes to tell me that it’s all in my mind; friends that give simplistic offers of ‘cures’. For many, the benefit system is another huge Goliath to face, constantly having to ‘prove’ their illness to a skeptical audience. If there was was proof, a reliable biomarker, or blood test life would be so much easier for all concerned but funding for science is another Goliath and so the cycle continues…

However, I never cease to be amazed by the courage and resilience of fellow ME sufferers. The ‘David’ I see in them is the defiant David that takes on the challenge against the odds! Just getting through some days takes enormous courage but despite limited energy they gradually chip away at institutions, medicine, governments and are forever creative in fundraising and awareness raising. Sadly, this often comes at a cost to their fragile health.

A typical response I got from one of my friends when I explained that I had ME was “oh yeah, that’s the nice illness where you just sleep a lot!” Ignorance can also be a hurtful Goliath!

Over the last two years I have tried a whole array of things in an attempt to get my life back on track. I’ve done a lot of reading and self educating. ( With hindsight, I wish I had worked alongside my GP who was sympathetic but knew nothing about ME, but I didn’t believe I would be unwell for so long and I have been badly hurt by previous ignorant medics.) I opted for the self help route which included:

1. Endless days of rest, sleep, and more rest

2. Cutting out work, social contact, all physical activity

( The illness dictated these first two – I had no option)

3. Consulting a ‘Combination therapist’ every 3 months

4. Eliminating gluten, sugar, alcohol  (all stimulants) and keeping a low GI ( & high nutrition) diet

5. Taking daily supplements ( Probiotics, L-Glutamine, Vitamin C,D, B12, Iron, magnesium, CoQ10, Vegepa (omega 6 -omega 3)

6. Reflexology and physiotherapy

7. Tai chi

8. Mindfulness

9. Braintraining (!)

10. Strict diary management even for pleasurable social activities

11. Saying no a lot!

12 .Signing up for the ME Biobank – London ( to help research )

13. Enrolling on a discipleship course 1 day a week

14. Prayer

15. Specially tailored 1:1 Pilates classes (only after over 18 months of the above once my body had improved and stabalised & despite several failed attempts to reintroduce exercise)

16. Bowen Technique

 

After two years of hard slog ( yes, it feels as though I work hard every day to get myself better and would be another blog in itself!) I’m generally around 70-80% well but a bad day can still launch me down to 40-50% in a blink of an eye. This is a huge improvement to where I was nearly 2 years ago but what helped this recovery? There is no way of knowing for sure, the science isn’t there. There is no way of knowing if I would have made the same spontaneous recovery if I had done nothing and of course the remitting – relapsing nature of ME means I can not be sure whether this improvement will be sustained or if another relapse is waiting around the corner so I do not boast any claim. I just go with what feels right for me.

Does this sound like the action someone who “just likes to sleep a lot” would take?! Many sufferers are blogging and recording their own ME journeys. You don’t have to wander far into the worldwide web to see how overbearing people’s personal ‘Goliaths’ are and how bravely people step up to them. People are trying all they can to get themselves well against a backdrop of institutionalised distrust and disbelief. I wish the government would take account of these before setting ridiculously cruel criteria for accessing benefits. I confess, I’ve never had to go through the ordeal myself but in the early days I know I couldn’t have worked if my life depended on it. Of course, for many it does. Paying bills and putting food on the table can be the most many can hope to achieve, never mind high cost fancy diets and alternative therapies that may or may not bring some relief. Indeed Scope have estimated that it costs disabled people on average £550 extra a month just to live. It’s little wonder people with invisible illnesses are feeling defensive, vulnerable and scared.

If you share my feeling that there needs to be far greater compassion and help for the chronically sick and disabled in the UK then do look up and share the work of Compassionate Britain.  There are times when neither a carrot nor a stick are needed from governments, just a bit more compassion and desire to stand alongside people that are suffering. If society is judged by how it treats its most vulnerable, then we have a long way to go to become the civilised society that the government likes to think we are.

However, if you are reading this and feel too small and insignificant and that facing Goliath seems like a pointless task, it’s worth remembering how the story ends?! Against the odds, and armed with nothing more than a few small pebbles and a sling, the mighty Goliath was slain!

 

 

 

 

 

 

 

 

 

 

ME awareness day 2015: Acceptance

So another year has passed since the last ME awareness day. For those fortunate enough to be uninitiated, ME stands for Myalgic Encephalomyelitis. It’s quite a mouthful but this wasn’t the reason why a name change was proposed earlier this year! The proposed change to SEID (Systemic exertional Intollerance Malaise) has been a hot topic within the ME community which I’m not going to indulge in here except to say that there is a strong, common desire to find a name that gives our illness/disease the recognition that it deserves and helps give clarity to onlookers. There are many unhelpful names that have also been attributed to our condition that I’m not even going to give print space to and the much loathed CFS (Chronic Fatigue Syndrome) only seems to muddy the waters further.

I feel it has been a positive year. It’s 20 months since my big relapse and I have improved from ‘moderate’ to the lower end of ‘mild’. I now get occasional days where I feel totally ME free, I can have many consecutive days where I feel no more than incredibly tired, but it’s not consistent and life is still far from normal. I’m still on a strict diet (gluten, sugar, stimulant free and low GI), and I take an arsenal of supplements. I’ve not returned to full time or voluntary work but I can now manage to study a full day a week; manage occasional chores around the house; finally progress with very basic exercise (1:1 Pilates). I can only achieve this by scheduling a strict activity/rest balance to my diary (including social time). And yet, despite being ultra careful, I still have unexplained periods where I crash and any of my old symptoms return: heart arrhythmia, shortness of breath, crushing brain fog and fatigue, throbbing, restless legs, weakness and shaky limbs, noise sensitivities that cause pain and increased fatigue, unexplained rashes & inflammation, sore throat and swollen glands, and disturbed sleep.

I’m writing this on the eve of the General Election. It’s the first year I’ve not been involved in a grueling  campaign for almost 20 years. As a former MP’s wife, I know about being busy. As a mum, I know about being constantly on the go and being sleep deprived, and as myself I know about working full time, being energised from physical exercise and people, and from giving my time to my church and community. All of these things bring normal and understandable tiredness. I need to be clear that this fatigue is NOT anything like ME! It’s a shame I still feel I have to mention these to counter distorted beliefs that ME is a lifestyle choice and anyone who knows me would laugh at the suggestion that I was lazy!

I am one of the extremely lucky ones in the ME community, I have seen good improvement over a relatively short period of time (20 months!) To most people my illness is well hidden. I’m very happy about that, but it still sucks!

People vary in severity of ME. At it’s worse, it’s incredibly disabling and even life threatening.

I’m extremely positive about my future. I have made a good recovery once before with this illness almost 20 years ago and I am determined to get back to fitness again but this doesn’t speed my recovery in any quicker.  In fact, experience has proved to me time and time again that acceptance is what really aids recovery, not ambition.

Acceptance is a hard word when you desperately want your old life back. No one gets there the easy way. Everyone I know with ME has tried to battle their way through it before finally conceding to acceptance but it’s a hard, arduous road.

Accepting the limitations to what I can do and how I live my life is one thing but accepting how we are treated as a patient group is quite another.

Funding good quality biomedical research is still a huge challenge but it is vitally important to help gain positive media coverage, to pressurise governments and for GP’s to be better informed and equipped to offer help and not harm to patients.

People’s experience of the NHS varies significantly but there is a long way to go in re-building patient-Doctor trust. Many have chosen to ‘go it alone’ due to being disbelieved, or after receiving hurtful, ignorant comments from the medical community. Even well meaning GP’s have given out unintentional harmful advice on the basis of assumption rather than fact which has increased the severity of a patients condition. All too often I come across sufferers who feel they have had no option than to research and fund their own recovery. This comes at great financial, physical and emotional cost that not all can afford. So whether we change our name or not, I hope that the broad medical community will help to grant us acceptance, and support us in finding a cure to this isolating, frustrating, disabling, devastating and in extreme cases, fatal condition.

 

 

 

 

 

 

 

Living in Limbo: My challenge for 2015

Today has been a big day: I’ve survived two hours of shopping in the January sales with my husband and daughter!
You may think this was merit enough for praise but the start of a new year made me reflect back on 2014. The shopping spree may be a signal for cautious optimism. For many, new year is the chance for new starts, new goals and new challenges. None of these are friends of ME. My challenge is to keep listening to my body and be patient with the ups and downs my recovery brings and the limbo it puts me in.

September 2013 saw me crash out of normal activities when I was hit for the second time with ME I have blogged regularly about the condition but in a nutshell it means Myalgic Encephalomyelitis:
My = muscle
Algic = pain
Encephalo = brain
Mye = spinal cord

After 15 months I am finding that I am getting more ‘good days’ like today, that enable me to do more normal things with occasional glimpses of my old self starting to return. Others must have noticed a change as people are starting to ask if I’m better now?
The answer is both yes and no! In relative terms it’s a resounding yes, but in absolute terms it’s a definite no. I can only do the small ‘normal things’ after lots of rest before and after events. I still suffer from Post Exertional Malaise although the pay back isn’t as bad as it used to be and recovery seems to come round quicker. Pacing stills robs me of spontaneity and commitments and my life is still a shell of what it used to be and recovery still feels precariously balanced. This is the new limbo that the illness is taking me into. Fatigue is now my biggest problem but weakness, restless shaky limbs, limited concentration and memory and irregular heart rate and breathing still like to give me a good beating.

The early days of my diagnosis were grim. Physically getting out of bed was an achievement and walking downstairs was a huge accomplishment; having the cognitive skills to unload the dishwasher was an achievement and being able to write a full email or read a book was a huge accomplishment. They were grim, dark days that seemed to go on forever without respite but they were at least uncomplicated in the fact that there were very few choices.

As time moved on, getting out of bed became taken for granted and simple, new opportunities like meeting friends for coffee came along. The noise of coffee machines and background chatter made the once simplest of pleasures initially a painful and exhausting experience. Over time, this has become one of my simple pleasures again (particularly now my local has invested in redbush tea!)

My ME fluctuates. I am always very grateful for my good spells when they come. (Better days means that many of my symptoms have subsided but I’m never able to shake off the fatigue) However, my husband normally groans when I enthusiastically greet him with how much better I am feeling as he knows a fall is imminent! He is usually right, despite all my careful pacing and rest even in my better days.

I never did like limbo and uncertainty but as my illness is improving I’m finding this is currently my biggest challenge of all. My faith gives me reassuring certainty and hope but the physical struggles are still the same.

Shopping with my daughter has only just become a possibility again, as has short walks with my husband. I could of course have opted for a wheelchair to make these possible much sooner than this (once I had overcome my noise and light sensitivities) but I chose to sit it out waiting for good days to come. The closest I came to it was for a pre-booked visit to Harry Potter studios last Easter. I certainly didn’t want to ruin the kids day by needing an early exit on this trip. I chose to rest for a week beforehand, use every possible bench on the way round and ended up in bed for 4 days after!

I’ve recently done a 360 survey as part of a course I am doing. Again, I was struck by how hard it was to find the real me. Questions about my reliability, drive and activity out flanked me. My ‘real’ self would have scored well. I also believe my future self will also be ok but my current self told a very different picture and I was in limbo again. Don’t get me wrong, I am very relieved that I’m not permanently disabled or housebound and without wanting to complain, the truth is the fluctuations are difficult to anticipate and negotiate and sometimes the real me gets lost in the confusion. Which is the real me? The able bodied me, or the disabled me? The organised me, or the forgetful me? The exercise junkie me, or the exercise intolerant me? The help-anyone me, or the self-preserving me? The perfectionist me, or the it’ll do me? I can’t let go of the old me for the hope that it will return. I’ve had glimpses already and have every faith that there is more to come.

I like to be positive; I like to show people what I can do; I like people to tell me how well I look (often, the worse I feel the heavier the make-up goes on!!) I like to escape being bound by the chains than ME likes to keep me in but I’ve also learnt never to turn my back on ME. Accepting my limitations is an ongoing and ever changing challenge. The persistent weeds of my illness can still consume any green shoots of recovery and simple tasks such as walking up and down stairs can quickly become a challenge once again.

When my children were babies, people with teenagers used to delight in telling me that ‘children don’t get easier, they just get different’ and I guess that’s where I am at with my ME. I guess it’s just a case of one day at a time, celebrate the good times, and pray for patience with the rest!

So it’s a year to be thankful on many levels. Many with ME have suffered for decades in a far worse state than me. Not everyone improves from the illness, and on rare occasions it is fatal.Currently, diagnosis isn’t usually confirmed until a person has been suffering for 6 months or more with persisting symptoms, so it should be no surprise that it is a long term illness. Everyone suffers differently and everyone recovers at differently but at least there is hope of recovery to some degree. There is still no cure for ME so it remains a long waiting game to see if recovery comes in months, years or decades and so patience to continue living in limbo will be my challenge for 2015.

My visit to the UK ME/CFS Biobank – December 2014

 

Background

Last January (2014)  I read about a research project to try and find a bio marker to identify Me/cfs. I suffered from ME initially in 1996-97. Although it robbed me of my career I did, over several years, make a good recovery. September 2013 saw its unwelcome return and despite all my previous experience and determination, progress has been painstakingly slow.

I therefore wrote to the London School of Hygiene and Tropical Disease volunteer to be part of the project and on December 11 2014 I finally made it through their doors!

 

I knew my appointment wouldn’t be able to offer any answers or advice to my illness but banking in my blood still seemed like a positive step forward to try and help unravel the mystery of ME cfs for future generations.

 

Need for research

ME continues to be an illness shrouded in mystery, ignorance and in some circles is still dismissed as a state of mind and not even viewed as a true illness. Research is therefore vitally important for people to get both a reliable diagnosis and helpful advice in managing the condition. Sadly, many people are given dangerous advice to “press on” through their illness or to build up their physical stamina through graded exercise which almost universally only makes the condition worse.

 

The visit

The most time consuming part of the appointment was the patient questionnaire: almost 20 pages of questions relating to physical, mental and emotional health! Fortunately this was done at my own pace in the comfort of my own home prior to the appointment!

The clinic was at Great Ormond Street and comprised of taking urine and copious blood samples! Although the nurse said that, as yet, no bio marker to identify ME had been found, the samples will also be banked for future research projects.

Apparently 90% of the blood samples come back ‘normal’ so it already looks like further research is required and funding to keep the project going is vital.

 

Body composition measurements were also done; height, weight, waist circumference, body muscle, basal metabolic rate (BMR) and body mass index (BMI)

 

The tests to measure blood pressure, lung capacity and general fitness were interesting. Several tests were done to record blood pressure: firstly sitting, and then after standing for a minute. It was interesting to see how much my heart rate increased when standing. It shouldn’t have been a surprise, standing still has always been gruelling and can leave me breathless, weak and lightheaded. It’s also typically symptomatic of ME/cfs.

 

The lung capacity test was recorded by blowing into what looked like a breathalyser! Again, no surprises that my scores were low as “air hunger” and breathing difficulties is another common feature of ME.

 

I did think I might score better on my overall fitness test: this was done by squeezing what looked like a vice as hard as I could for 3 seconds, 3 times. It’s over a year since any work out in the gym, but my official result was “pathetic!” I took some consolation that despite my scores ranging from 16-27, people with severe ME probably only score 3 on this test!

I did get some good cheer from my results: apparently my metabolic age came out 28 year old & I’m minus 17% obese! Not bad for a forty something!

Despite having to travel to London, I felt the day was really worthwhile. It’s one of the most positive things I’ve done to help towards finding answers to this mystery illness and I guess it is why so many other sufferers are similarly keen to help.

Volunteers needed

They are still accepting other people with ME /cfs onto the biobank but they are particularly interested to hear from healthy individuals who would be willing to take the same tests as part of the control group. There is less incentive for such people to volunteer, so if you are a sufferer that will find it difficult to attend a clinic, do spread the word to friends and family.

For those that feel frustrated that there is nothing they can do to help, this is a great opportunity.

As a participant on the project I will be reviewed again in 6 months time. I’ll be hoping for more impressive results by then…!

 

Further info

To read more about the bio bank please click here. If you wish to volunteer yourself the address is at the bottom of the linked page.

 

 

The blessing of weakness

Living with a fluctuating, invisible illness for the last year, I’ve always found the question ” how are you?” difficult to answer.

The truth would be repetitive, tedious and demoralising! I moved from my stock response of “more up than down” to a more objective approach by giving people a percentage of how well I was functioning but it still wasn’t a fulfilling answer.

I’ve discovered there’s so much more to me than just how well I can physically get through my days. I’ve also discovered that there is a real strength in weakness and a spiritual side that I’ve not acknowledged to others before.

I’m aware that this post will sound very strange to many of my regular readers. I completely baffled a friend when I replied ” Well, I’m physically pretty rubbish; but in myself, I’ve never been better!”  It will probably sounds weird because it is weird! It’s inexplicable yet real.

Living with ME has taught me that for some people (including some Doctors) unless they can see or have an explanation for my illness they don’t believe there is anything wrong at all – or that’s it psychological! Having an invisible illness doesn’t mean that it doesn’t exist, it just means that you have to look harder to find it!

Similarly with my faith, if people can’t see it or fully understand it, they can dismiss it as me being delusional. Putting both together, I have no doubt that some may even wonder if I’m sane!

(I should point out that I am of sound mind and remind people that ME is purely a physical illness!)

ME has physically robbed me of many of my physical and social joys that I took for granted. There were days when I felt like an empty shell and barely human at all. I’ve blogged many times about how it has affected me and my struggles. As awful as it was/is I’m grateful for being stripped to my core. My own strength and efforts could no longer be relied upon and my future and possible recovery was unknown. Over the summer I had a real sense of peace that God wanted me ‘to be’ and not ‘to do’ which prompted my Blog ‘What are you worth?’I believe this was my starting point…

My husband and I felt called to start attending a new church last summer. After 20 years of friendship at our old church it was a huge decision. My first big encounter came despite my reluctance. I knew our new church was talking about the issue of healing and my heart sank. I thought I knew what to expect and what would be said and that I would only leave feeling disappointed & frustrated on top of being physically broken. One of the stories was of the woman who reached out to touch Jesus’ cloak to be healed particularly (Mark 5:25-34) She had been ill for many years and had also visited many doctors who had only made her worse and she was shunned by a society that didn’t understand. I empathised with her hopelessly resigned situation of prolonged suffering. Everything was on course for the service to go as I feared. However, her desire to reach out and touch Jesus wasn’t just for healing, it was a signal of her faith and of needing Jesus more than anything else in her life regardless of whether she was healed or not. Boom! Now that DID resonate with me.

To make sense of what happened next I need to take you back to when I was teenager. I have been a Christian since the age of 14 after an encounter with God that left me in no doubt that God was real. I could relate to Jesus as a person and believed he existed and even that he did many miraculous things but I just didn’t get how God was somehow in control of the whole universe, never mind me, and I didn’t understand why people referred to ‘God’ and ‘Jesus’ interchangeably. I was ready to walk away from the whole God nonsense and prayed a prayer to the effect of ” show me you’re real or I’m turning my back on you forever”

With tear stained eyes, alone in my bedroom, my bible fell open at Colossians 1:15 ‘Christ is the visible likeness of the invisible God…”

In that moment, everything made sense. There are no words to adequately describe the feeling that I encountered that night. All I can say is that it was so real I have never doubted the existence of God since. I’ve had many questions and life regularly baffles and confuses me but ultimately that personal encounter has been enough to sustain me through the ups and downs of the following 30 years. 

 

Back at church, the call went forward for people to respond. Well, I don’t do that; it was a bit undignified. Yet before I knew it I was knelling down visualising reaching out to Jesus again just like the woman we had heard about. Literally, as soon as I visualised touching Jesus’ cloak another voice read out ” Christ is the visible likeness of the invisible God” Boom! I was transported back to that first encounter as a messed up teenager. It felt like I had just been resuscitated by an electric shock!

I didn’t know what had happened, I didn’t know if it was healing, all I knew was that God was present again and I felt truly alive!

You may be disappointed to know that it wasn’t a healing. In fact all the extra emotion from it made me worse for a weeks after! Yet I still felt excited and full of life! It wasn’t about healing, it was about recognising that whatever the future holds, I needed Jesus first in my life.

 

A couple of months later, came my second encounter. At the end of the service a student came up to tell me she had a clear message from God for me (I told you this was weird!) The girl seemed awkward telling me, almost apologetic, yet she was so sure the message was for me she went through with it. Not knowing if this girl was of sane mind, I braced myself and asked what it was.

She said that that God had told me that I shouldn’t look back and wish for how things used to be because God was going to strengthen me. She told me that this wasn’t going to be a sudden thing but gradual over time and that eventually things will be even better than how they used to be but I needed to be close to God always.

I hope you’re getting a sense of how incredible this feeling was for me?!

I was not only blown away with the message but also who God chose as the messenger. The student was a fresher from the other end of the country. She was visiting our church for the first time and didn’t know anyone at our church and couldn’t have known about my illness and desire to get back to fitness. Had it been someone local from our church, I could have allowed doubt and cynicism to creep in and I guess God knew it!

In many ways, the message was nothing new. I’ve always felt that I would recover from my illness. It’s also true to say that I’ve already made good progress but this was the confirmation I needed. I don’t know whether ‘strengthened’ means I will recover or improve but it almost doesn’t matter any more. The more I’ve opened myself up to God, the more He has flooded his love in. It’s been the start of a renewed journey and there have been more incredible encounters which I’ve not even touched on here. Like trying to explain my illness, it’s impossible unless you’ve experienced it yourself. I know it sounds crazy. I can not properly explain it, only share it.

I’ve been sharing my experiences with friends, family and now you! This is very untypical behaviour for me but the excitement is just bubbling out of me!  I can only equate it to a big thrill ride: When you know you are about to go on a trip where you can experience a great, new big thrill ride you look forward to it. You may well be excited enough to tell others about it, but it’s not until you’ve actually stepped off the ride that the excitement is so real that you just can’t stop yourself from telling everyone about it!

So, I’m putting on hold my determination to get back to fitness. The desire is still strongly there but I’m going to make sure my energies are focussed on God first and to continue to let his strength strengthen me.

I will keep you posted with my progress but I hope my answer of why “Well, I’m physically pretty rubbish; but in myself, I’ve never been better!” now makes some sense!

 

 

 

 

 

 

 

Introducing exercise after ME

So, here we go again! I’ve been at this point many times before over the last year. I’ve rested, paced myself, and I’ve now had 7 months of a strict diet and supplements to enable me to try and re-introduce exercise into my life.

Background

For those that are new to my blogs, I was first diagnosed with ME in 1996. It stripped me of my career and of most other things that brought joy to my life. I did however, gradually regain my health and fitness and over many years returned to an active – filled life including my much loved regular fitness and exercise.

Last September I had another relapse which sent me crashing back to square one. I thought previous experience would aid me to a speedier recovery and a return to exercise. I blogged my monthly journey: ‘My Road to Fitness’ and despite my previous experience, optimism and determination, ME is not for being rushed. Despite improvements in my health, exercise couldn’t be maintained and tolerated beyond gently pottering around the home and garden, with occasional shopping trips on good days! So, after another period of relatively stable health I decided to give it another try.

Important warning.

It’s important to note that my ME is now at a mild stage and I am under the watchful eye of a very experienced Combination Therapist. I must reiterate what I’ve included in many previous posts as it’s so important: UNDER NO CIRCUMSTANCES should anyone with ME attempt any exercise unless they are confident that their body has been stable for long enough to introduce any extra demands on it. In fact, this is true for both physical or cognitive demands. From my experience, less is always more. Always err on the side of caution.

Having been bed bound for so long, being able to walk round the house or to the shops can quickly make you feel invincible! The chances are that at best, disappointments will follow, and at worse, you could set yourself even further back than where you were before. I would also be very wary of accepting help from anyone offering an exercise ‘programme’ even if it has been set by your GP. In my experience, the only way to improve is to listen to your own body and balance whatever you put in with double the amount of rest. Pacing is crucial.

Starting again.

After 7 months under the watchful eye of my Combination Therapist, Norah Wickerson, I was given the all clear to start re-introducing exercise with short spells of Nordic walking. It’s gentle on the joints and the benefits to effort ratio is high.

At our children’s request , and against my better judgement, we had booked a stay at Center Parcs for half term. For the uninitiated, Center Parcs is a haven for sport and recreation set in a forest where the only method of transport was either on foot or bike.

I do believe I will continue to be strengthened (another blog for another day!) yet I admit to being nervous. Having gained so much in my recovery I really didn’t want to throw that all away. It was over a year since I had been on a bike and there was every possibility that just cycling to the activities would be more than what I could (or should!) be doing. I was seriously in two minds whether I should in fact be hiring out a mobility scooter rather than a bike upon our arrival!

Our chalet was only a couple of minutes from the main centre with flat paths to navigate. I was very grateful for the generous gearing on my bike and the effort involved for cycling seemed comparably less than walking.

Once I had relaxed about my minimal effort I was transported back to a world of wonderful normality. I was transported back to my world pre-ME. The wind blowing through my hair and the sun shining through the golden Autumnal forest canopy is a feeling that will stay with me for a long time. I felt like a caged bird that had finally been released!

I was careful what activities I chose and timings between them. I also made sure that I put in plenty of extra rest each day for my body to recover whilst the rest of the family were clocking up extra activities! ( I wouldn’t normally recommend doing activities on consecutive days)

I was wary about swimming. I often react to the chemicals in the water. It was more a short session of splashing & going down flumes than swimming and whilst I did come out of the pool complete with an attractive rash it didn’t progress into swollen glands or throat infections as was typical for me.

Table tennis seemed an obvious, low impact activity. However, it was interesting that as soon as I began a competitive game, I felt my adrenalin kick in! Despite loving sport, I’m not a naturally competitive person and it was ridiculous: my body felt like I was serving match point at Wimbledon, not a friendly game with my teenage Son! I soon resorted back to friendly knock arounds for the rest of our stay!

I flirted with a few minutes of badminton and the rest of the family even accommodated picking up the shuttlecocks for me! ( I still find standing up from a crouching position hard for my body to cope with – especially if this is repetitious

Ten pin bowling was also another winner for me (literally!) – once I had discovered the lighter bowling balls! ( still had adrenalin isues!)

The biggest surprised was with Squash. I expected to be spectating for most of this, but I found it the biggest success of all! We rotated players so I only did short intervals and we made up our own rules to ensure; A)it wasn’t competitive (!) and B) that I wasn’t running around the court. I could also scoop up the balls easily with my foot/racket so I didn’t have to bend down or rely on others to do it for me. It was pretty much like practising tennis against the wall when I was a child but with the benefit of a small, enclosed court and not loosing the ball!

To people with experience with ME, it sounds like I did a crazy amount in one week. It was certainly a lot more than I was intending to do and you can see how hard it is for me to even stick to my own advice! I did at least manage to rest plenty in-between.The observant among you will also notice that I didn’t mention Nordic Walking in my activities. The one activity I was prescribed and planned to do! Unfortunately, other activites just excited me far more!

For readers without experience of ME, I’m aware my efforts must seem pitiful!

I was amazed how well I felt at the end of the week. I seemed to have escaped the dreaded Post Extertional Malaise (PEM) which often kicks in 24-48 hours after exercise and be the start of another flare up. ( Very typical in ME )

It wasn’t long ago that even being in the same room as sports courts, swimming pool or bowling alley would be too much. I was barely aware that I had successfully filtered out the fluorescent lighting, echo y rooms, and background noises as I began to play. None of them caused pain or fatigue. I internally celebrated and thanked God for the blessings that most people take for granted.

I felt healthier just putting my kit and trainers on again! It was also fabulous to be able to do things as a family again and for someone who has always loved exercise, being active and among nature, the whole experience made me feel truly alive!

People with ME constantly have to decide how they use their energy on a daily basis and planning recovery and rest times is a crucial part of everyday life. This is sometimes referred to as ‘spoons of energy’ and why we are sometimes referred to as “Spoonies”

It can feel selfish and self indulgent to use the little energy I have on exercise, particularly when there is the danger that it could make me worse. Exercise is no longer a way to keep fit, it’s purely a way to have fun and feel liberated!

My week went better than I could have dreamed of, and I even woke up with that fabulous feeling of achy legs – not the heavy, burning, twitchy aches of ME, but the satisfying feeling that always used to signal new strength. Although I ended each day very tired, sleep seemed to restore me again (another big step forward). However, I came home very aware that my body was craving rest. Despite my best efforts, rest hasn’t been possible every day since our return and a simple walk yesterday triggered my legs to burn and become heavy with a headache that pain killers couldn’t shift. I’m praying that further good nights sleep will be enough to restore me again and it’s not the start of the slippery slope.

It’s confusing why I’ve got delayed symptoms returning now. It could be that the walk yesterday was up a steep hill  (not through choice!), it could a cumulative effect of last weeks activities catching up with me, or both. Either way, the reminders are there that ME is a precarious balancing act and a step too far could still send me crashing down.

I don’t attempt to give any answers on my blogs, all I can do is to share my experiences in the hope we can learn from each other.

There was something liberating about doing what I love with the people I love, though.It’s a shame my passion is exercise, but even if it was singing, sewing, playing in a band, the same challenges would be there. What I have learnt is that if you have lost something that you once loved, you can still get enormous pleasure from giving it a go by making adaptations suitable to your limitations and needs – but always quit whilst you’re ahead!

I’ll be having another long rest period before I attempt any further activities but one thing is guaranteed, there will be a next time!

With the caveat of great caution, there are times when a small dose of what you dream of must be worth the chance!

I love this song; “Move” by K-Love. It sums up what I’m trying to say brilliantly: https://www.youtube.com/watch?v=-EuV5goIkb0

 

This short video explains how “Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects”  http://t.co/5Kj0iY75BV