Gwyneth’s ME story part 1 – trapped in my useless body

ME Awareness week:
Gwyneth’s ME story part 1 – trapped in my useless body

 

Gwyneth Hopkins is one of a small percentage of people who has recovered from ME within 5 years. Here is her story, told in 3 parts.

 

I suffered from ME from September 1998 to October 2003.

Getting a diagnosis

In November I was rushed into hospital with what was diagnosed as a mini stroke. I was kept in for nearly a month undergoing endless tests, a lumbar puncture and multiple scans. In the end by a process of elimination they diagnosed ME. It was useful having an early diagnosis but they wanted to keep me in hospital because I was so weak. In the end I had to beg to go home. Hospitals are noisy and being in a stroke ward the lights were on all night and there was noise as the other patients were being attended. The lights hurt my eyes and I was very sensitive to sound.

The trouble was that to do the tests, they were injecting me with different chemical substances and eventually they were injecting me in the stomach twice a day with something to thin the blood because I had become bedridden and they were worried that I’d suffer from blood clots.

I didn’t realise it at the time but now I know I’d been getting weaker as a result of even more overload on my body caused by foreign substances (injections) on my already overloaded immune system.

Year One

The first year was spent suffering from multiple symptoms and pains and on an average day I spent 5 minutes out of every hour out of bed, usually just enough to wash or go to the loo. Sometimes the short walk to the bathroom exhausted me so much I’d collapse and be unable to move for nearly two hours when I was then able to walk or crawl back to bed.

In the first few months I had magnesium injections on the suggestion of my GP and they helped a lot with the muscle pain. I also tried Amitriptyline to help with the lack of sleep. I did sleep a bit longer when I eventually got to sleep but I took myself off it because of the side effects and took Bach Flower Remedies instead.

By the end of the first year I had experienced all the following symptoms:

  • Fatigue sometimes so bad I couldn’t chew food.
  • Falls where I would suffer temporary paralysis for up to 2 hours
  • Sore throat and swollen glands
  • Headaches and sinusitis
  • Muscle pain and tingling in the arms and legs mainly on my right side
  • Feeling freezing cold for months
  • IBS
  • Gritty eyes
  • Sore face and cheek bones
  • Lack of concentration
  • Unable to co-ordinate brain and hand to write properly
  • Short-term memory loss
  • Often sore to touch & sometimes-itchy skin
  • Mood swings
  • Found it hard to get to sleep even though I’d feel exhausted
  • Suffered vivid dreams and nightmares

A visit from my granddaughters, summer 1999. I couldn’t pick up my youngest granddaughter so she was placed on my arm.

Years 2-5

By the end of the second year I could spend about 15 minutes out of bed in an hour. I could occasionally manage a walk in the garden in slow motion or just sit in a chair. I had a reclining wheelchair at first because I couldn’t hold my head up for more than a few minutes, then I progressed to an ordinary wheelchair.

In the third year I hardly ever went in a wheelchair, except on outings. I could occasionally manage to walk 1/2 mile (as others with ME will know, when you manage something like that you never know how long it will be before you can do it again) but I still spent a lot of time in bed. If I overdid it I ended up back in bed unable to do anything, sometimes for days but more likely for weeks. It can seem so cruel because just when I thought I had a bit more energy I seemed to be punished for using it. It was very frustrating learning how to pace myself.

I still found standing still and lifting difficult but I could now lift the kettle. 🙂

During the worst years of my ME not only did I feel trapped in my useless body but I also felt guilty that I was so helpless and my husband had to wait on me as well as hold a full-time job. I had to lie there seeing him getting more and more tired and stressed with it.

I made gradual improvement with a few short relapses until after 5 years I was completely recovered by the autumn of 2003. I believe that my recovery was due to going down the complementary route.

By the end of 2003 I was back riding horses and walking in the hills and even went to college, all unimaginable 2 years before!

Gwyneth Hopkins, West Wales

Part 2 of Gwyneth’s story will describe the complementary therapies she found helpful on her way to recovery.

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Symptoms of ME/CFS

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No Lockdown fun for Melanie, just bedbound with ME

ME Awareness Week:
No Lockdown fun for Melanie, just bedbound with ME

 

My daughter has had ME for the last 27 years, since she was 11 years old when she suffered a bad attack of glandular fever. She was a few weeks into a public school, where she had gained a place on merit. She was extremely bright and enthusiastic, playing cello in a junior orchestra and she excelled at sport.

For years she ranged between moderate to severe symptoms.  She made several attempts to return to the school she loved, but in the end, she had to have home tutors, when she could cope. Her social life was extremely limited, but she joined in family life, when she could. She has been really severe for the last 8-9 years, and has not been outside for 4 years.

Staying at home in self isolation is nothing new for her. She has her bedroom blind closed most of the time. Her body clock is reversed and she is asleep during the day, despite several attempts to change this. She has pain in her muscles, is light and sound sensitive, and suffers with brain-fog and extreme unnatural exhaustion. She is only just able to go to the bathroom herself. She is an immensely independent and private person, and sometimes it is a struggle.  Often a conversation is too much for her and she shuns any company most of the time.

Lockdown brings no change to her life, except that she does know about this awful virus and she understands the ultimate threat to her, and our lives.

My partner and I are in the fortunate position of being able to isolate ourselves, while the brave NHS doctors and nurses battle under very difficult conditions.

If only patients with ME could experience that same dedication and true understanding.

Dee Molyneux Parker, South Wales

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WAMES asks Health Minister for combined healthcare strategy for Covid-19 survivors, PVFS & ME

ME Awareness Week:
WAMES asks Health Minister for combined healthcare strategy for Covid-19 survivors, PVFS & ME

 

WAMES has written to the Health Minister and other officials on International ME Awareness day to draw attention to the links between post-Covid, PVFS and ME care.

Minister for Health & Social Care
cc Deputy Minister for Health & Social Care
Chief Executive for NHS
Chair Petitions Committee
Kevin Frances, Directorate for Health Policy

Dear Vaughan Gething,

Today, 12th May 2020 is International ME Awareness day. The WAMES blog and social media this week contains stories of the devastating effect ME has on people’s lives. (1)

On behalf of people with ME and Covid-19 survivors WAMES asks that Wales develops a strategy to recognise and treat illnesses triggered by all viruses.

Today is also Day 51 of the Covid-19 lockdown in Wales. 2 months ago we could not have imagined that we would be drawing your attention to Myalgic Encephalomyelitis (ME) in the middle of a pandemic!

We do so because over the last few weeks media and research reports (2,3,4,5) have made it clear that a number of people who survived the SARS and MERS pandemics a few years ago did not recover, but went on to develop neurological and post-viral symptoms. For some this led to full blown neurological ME.

Concern has been raised by the NHS in Wales that “a national strategy for [Covid-19] rehab would be required. They claim provision is “patchy” and without help people’s lives will be harmed.’ (6)  WAMES agrees, and has been calling for a national strategy for caring for ME and post-viral sufferers for many years.

Fortunately the professional group physios4me (7) have been quick to produce clear guidelines to enable doctors and therapists to identify and support patients with ongoing problems, to avoid the long term chronic condition of ME developing.

Many people with ME wish their doctors in the past had done this for them!

The physiotherapists have been guided by international research evidence on the nature of the dysfunction in ME and particularly the Workwell Institute’s findings on exercise intolerance in ME. They have also drawn on the long clinical experience of Dr Charles Shepherd of the ME Association.

Unfortunately NICE has still to catch up, and due to the Covid-19 crisis the publication of the revised NICE guidelines for ME/CFS has been delayed, possibly well into next year.

It is good that the Welsh Government has ‘announced an extra £10m to help people recovering from coronavirus.’  It would also be good if money could be dedicated to ensuring that other people with post viral symptoms are well supported. It is too late for many who have already been harmed by neglect, disbelief, inappropriate advice and exercise therapy in Wales’ fatigue and pain clinics, but future patients could be spared that. The paucity of testing for Covid-19 means that many in Wales could have had the virus and be unaware they might face a backlash in the future and won’t be recognised as needing specialised advice.

People who already have ME are finding that catching Covid-19 leads to a relapse in symptoms. As people with ME have not been placed on the ‘at risk’ from Covid-19 list, this can cause added difficulties in gaining support as they continue to shield. Is there a way that people with ME who are very ill can be placed on the ‘at risk’ list?

Currently the Welsh Government has placed ME and CFS in an advisory group with pain syndromes, hoping to find ways to improve NHS handling of common issues: ‘the need for patient and professional education, effective diagnosis, self-management techniques.’

WAMES believes this could mislead the health community into believing ME is a pain syndrome, and lead to ME being over looked, or worse, included in pain rehabilitation programmes, which have already caused such setbacks (and distress) for people with ME in the past. This approach fails to address the most pressing issues, that of the unique characteristic of ME – exercise intolerance and the post-exertional response (PEM) – and the lack of medical expertise in post viral conditions in general and specifically neurological ME, in Wales.

WAMES calls on the Welsh Government to lead the way in caring for ALL survivors of viruses, without discrimination.

Best wishes,  Jan Russell

Chair/ Cadeirydd,
Welsh Association of ME & CFS Support
Cymdeithas Cefnogi ME a CFS Cymru

Refs:

  1. https://www.wames.org.uk
  2. https://www.newscientist.com/article/mg24632783-400-could-the-coronavirus-trigger-post-viral-fatigue-syndromes/
  3. https://www.telegraph.co.uk/global-health/science-and-disease/coronavirus-could-cause-secondary-illnesses-including-chronic/
  4. https://www.huffingtonpost.co.uk/entry/coronavirus-could-leave-you-with-symptoms-of-post-viral-fatigue_uk_5eb3e88dc5b6526942a29dfc
  5. https://le.ac.uk/news/2020/may/coronavirus-me-risk
  6. Coronavirus: NHS faces ‘massive’ challenge helping patients recover.  https://www.bbc.co.uk/news/uk-wales-52475139
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The origin of International ME Awareness Day

The origin of International ME Awareness Day – May 12th

 

Excerpt from: MAY 12th International Awareness Day

“If a cause and cure are to be found for ME/CFS, FM, MCS and related illnesses in the near future, government and medicine must be made fully aware of their scope and impact. Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding. To this day, many patients run directly into a medical establishment that, in general, knows very little about these serious threats to human health. It is therefore crucial that all those affected by the illnesses make their voices heard, especially on May 12th of each year.” [RESCIND. INC. org]

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases). Mr. Hennessy was based in the US but understood that it needed to be an International event.

He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).

May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross.

Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life.

Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.

 

Mr. Hennessy included ME/CFS (also known as Chronic Fatigue and Immune Dysfunction Syndrome — CFIDS), Fibromyalgia, Multiple Chemical Sensitivity and Gulf War Syndrome under the CIND umbrella. These illnesses, characterized by cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms, afflict people around the world in alarming numbers.

May 12 efforts have largely been grassroots and undertaken by individuals or individual organizations. Due to the mandates of these organizations, the awareness efforts have, for the most part, focussed on only one of the illnesses. From the beginning in 1993, various ME/CFS organizations were behind the idea.

Early support came from a UK group called BRAME (Blue Ribbon Awareness for the awareness of Myalgic Encephalomyelitis). They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995. This was instrumental in the campaign being adopted internationally for ME/CFS.

Ribbons

Rblue ribbon photoibbons are used by many groups as symbols of support or awareness. The ribbon colour used for ME/CFS is blue, for Fibromyalgia it is purple and for MCS it is green. In all cases, the ribbon colour is not unique to the cause but is used for other causes as well.

The use of the blue ribbon for ME goes back to 1995 and BRAME (Blue Ribbon Awareness for the awareness of Myalgic Encephalomyelitis. As previously noted, they highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995 and as a result were instrumental in the ME/CFS Awareness campaign being adopted internationally.

Other groups using May 12

As a bit of trivia, the Awareness Day of May 12th is also shared with Canada Health Day and International Nurses Day (also because of Florence Nightingale’s birthday). It is also shared by Limerick Day to celebrate the birthday of Edward Lear whose Book of Nonsense did much to popularize this form of verse.

 

BBC iPlayer: Florence Nightingale – Drama about the life of Florence Nightingale, based largely on her own words, which tells the true and unexpected story behind the birth-mother of modern nursing. [available until 7 June 2020]

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Poem: A nurse with ME

ME Awareness Week:
  A nurse with ME – a poem by L Mair Jones

 

As we acknowledge the contribution of nurses on International Nurses Day, we remember that nurses too can be confined to home with a virus.

You have always been there
– my nurse
my night nurse, my day nurse
my named nurse,

you have always been with me
as I lay for hours
despondent,
indifferent,
drifting along with the radio waves,

you reached for the remedies,
you decided on plans of intention,
you brought along the nutrients
and the refreshments,

you spent hours wondering
what was this illness
that had no medical feature,
but all the symptoms of serious disability.

Now you stand back a little as walks become longer,
as life turns pleasant again.
Outings take place,
and occasional plans are made.

But you will never leave me,
because you are with me,
because you are me I am you,
I that I am,
I am my own nurse,
My nurse is me.

 What it is to nurse oneself,
my lifetime career.

 L Mair Jones, 1997, Mid Wales

Mair was a nurse for 15 years before ME forced her to leave the NHS. Gradually her health improved until she was able to enjoy walking again. She is now a yoga teacher (on Zoom at the moment) teaching Gentle Years Yoga and Hatha Yoga with classes in Welsh and in English. jonesmair3@gmail.com

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35 year-old living in aged care reveals what life is like inside during this pandemic (Aus)

ME Awareness week:

Thirty-five-year-old living in aged care reveals what life is like inside during this pandemic

 

From SBS News Insight (Australia) by Ketra Wooding, 9 May 2020:

Ketra has been forced to live in an aged care facility due to her severe chronic fatigue syndrome. Unable to find suitable accommodation elsewhere, Ketra has had no choice but to stay, and now she’s trapped inside as the coronavirus pandemic continues.

The severe lock down of the aged care facility where I live was early and brutal. The door codes were all changed, and I couldn’t get out of the facility and no visitors could come in. This was in early March, I had just had my 35th birthday.

I don’t want to be here, I want to leave.

Unfortunately I haven’t been able to leave aged care because I have myalgic encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS). I was hit hard with this disease and, within a year of getting it I’d deteriorated so much that I needed 24/7 care. After a three month stint in hospital, I was sent to live in aged care. I have intense sensory sensitivities that worsen over time, when exposed to triggers. My home needs to be a low chemical, low noise, high physical support environment – something impossible to find at present.

So I’m 35, living in aged care and now I’m locked into the facility.

Mum came back to visit after the initial lock down, shouting up to my window from the street, to have a weird, loud volume, extremely non-private conversation.

We feel like sitting ducks, just waiting to see if COVID-19 will strike our nursing home. If COVID-19 does hit us – how many of us will die? Surely our nurses and carers won’t abandon us, or will they?…

In contrast for me, life has opened up a bit, my healthy friends are more available and more willing to video call. I even attended a bestie’s online 40th birthday party, my first birthday party in nine years. If COVID-19 hadn’t happened she would’ve had a real life birthday party and I would have missed out.

I also video call my physiotherapist, psychologist and phone my GP, using Telehealth like most people in Australia.

Read the full story

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‘Paused together’ or ‘left behind’ – Frances’ thoughts on Covid-19 & ME

ME Awareness week:
‘Paused together’ in Lockdown or Housebound with ME & ‘left behind’ – Frances’ thoughts on Covid-19 and ME

 

On having ME – Myalgic Encephalomyelitis

Going from being active, well, independent and having a future with good prospects.
Then suddenly not being able to get out of bed when hit with glandular fever.

Left with numerous health issues dependant upon others to look after you.
Not knowing what has happened to you.

Stuck inside when the world outside carries on.
A new type of future where you are left behind.

Your future path that was in front of you is gone, fading further into the distance as time goes by.

Now a new path, different and limited.

With a new appreciation for little things.

Lockdown with covid-19

where everyone is paused together feels very different.

As time has passed since I was first isolated due to ill health, online socialising has vastly improved.

People are able to stay connected easily. When you are thousands of miles apart or a street apart,

being at home doesn’t mean feeling alone anymore.

Frances Lewis, West Wales

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Video: I got a virus, I didn’t die, but I never recovered

ME Awareness Week:
      I got a virus, I didn’t die, but I never recovered

 

 

#MEAction network video, May 2020

A short film by people with ME and experts, warning of the long term consequences that viruses can have.

Professor Chris Ponting and Dr Nina Muirhead give their expert testimony, and many people with ME  submitted videos. After the COVID-19 pandemic, the number of people living with ME (Myalgic Encephalomyelitis) and other chronic illnesses will grow.

Debilitating symptoms won’t resolve, and physical isolation won’t end. We are the #MillionsMissing, and we call for an urgent response to mitigate this coming crisis. The time to educate healthcare workers, invest in biomedical research and treatments, and expand accessibility is now.

For many years the treatment recommended to people with ME in the UK has harmed a majority who undergo it. We need change now.

Learn more: www.meaction.net

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Covid-19 or ME crash? – Kay’s story

ME Awareness Week:          
Covid-19 or ME crash? – Kay’s story

 

ME and me, before C-19

I was first diagnosed with ME/CFS when I was in my teens, so I have lived with it for 25 years plus, with varying success. My health improved a lot from around the age of 18 until my mid 20s, which allowed me to go through university and hold down a part time job at the same time.

Over the last 15 years or so, I have had several relapses, also called crashes, some more serious than others. That’s when my symptoms get worse – dizziness, nausea, headache, flu like symptoms (fever, shivers, sore throat), brain fog, fatigue – and I find it harder and harder to function, often ending up in bed. I briefly worked full time, but that caused a major crash and I haven’t considered working full time since. Pacing is part of everyday life for me, and building in rest periods and rest days has allowed me to maintain part time employment for some years.

Unknown virus

In early March 2020 I spent two weeks with a virus, which may or may not have been C-19. The route of infection was probably via my brother, who appears to have been infected by a friend returning from a skiing trip to Northern Italy at the end of February. I had all the symptoms but couldn’t be tested, as no-one in the chain of contacts had been formally diagnosed with C-19.

Did I have coronavirus?  Who knows! I certainly wasn’t as poorly as some, but definitely most unwell for that period, although the symptoms are so close to those of a crash that I couldn’t be sure until I started to recover. My crashes are measured in months. 2 weeks was definitely not long enough, and a prime symptom of my crashes – nausea – was missing, so I suspect I had some kind of virus.

Slow recovery

Since then, I have been very up and down, and I am definitely not yet back to full fitness. My stamina is much lower and the fatigue is more extreme than it was before. I also find the other ME symptoms are coming and going more than usual, which suggests I am still run down. My crashes are usually triggered by a virus so it is hard to know if I am just taking longer to recover or am experiencing a mild crash as a consequence of the virus. But I count myself lucky compared to others who have had C-19, and those with more severe ME which keeps them permanently bedbound. I am stuck between two tribes – I am not as sick as many, but not as well as the majority!

Working from home

My workspace

My company has been working from home since the week before lockdown, which has helped immeasurably. I can work flexibly, doing more when I feel ok, and less when not, and I don’t have the commute or the extra stimulation of being in an office, which I often found tiring. Meetings have reduced considerably (now done via audio not video, which removes more pressure) and there are no work trips until further notice.

My work station is in my living room opposite the sofa and next to the telly. This is far from ideal but needs must! I am very lucky to have a good set-up, thanks to the disability support unit at uni, who provided the desk, chair and footrest, back when I was a student. Absolute godsend! The location does make switching off at the end of the day difficult, so I actually clear my desk as much as possible at the end of the day.

Coping with Lockdown

I have used pacing for many years to try to limit the boom/bust cycle, and that has been helpful as I recover, and I am used to changing/cancelling plans at the last minute due to how I’m feeling, so I haven’t struggled with the lockdown really. Sleep has been something of an issue (not getting to sleep and then waking early), but I have been disciplined in sticking to my regular getting up and going to bed times to try to keep that in check, with limited success.

I only have one close friend, and normally we are in regular touch by text with a meet-up every couple of months, so the lockdown hasn’t had a significant impact on that. When you have limited health resources, you choose your friends carefully and limit their number, which I suspect is helping me now I’m in Lockdown.  I have never been a party animal, and I don’t even go out in the evening with any regularity, so I am not missing the social aspect.  I would like to be able to go out for a coffee though, just to get a break from the flat! I am also trying to be kind to myself and reduce some of the expectations I have – just surviving feels like success at the moment!

Betty’s cousins

We haven’t struggled for food as we have 3 small shops within easy walk. I have a shopping trolley (a bag on wheels), bright blue with white spots. I’ve named her Betty (don’t ask) and she makes life so much easier when shopping locally. Couldn’t manage without her!

We have found the local shops to be better stocked in the essentials than the larger supermarkets. My mother is a different story. Mum is recovering from a major illness and was told she had to shield, which she has not been at all happy about, but fortunately did accept. I have only seen her once since lockdown, to deliver shopping, which has been hard for both of us.

I have struggled massively to get home delivery slots for her (she has had online shopping for many years) and have been organising a mixture of big online deliveries, when we can get them, and food boxes from Morrisons (which she has spoken highly of). I have found them easy to order, with quick delivery, and they do a gluten free box!). I managed to get a click and collect slot to plug a gap between deliveries, and there are a few more in the pipeline which will hopefully get us through to mid-June, when I suspect Mum will emerge whether the government like it or not!!

The future

I trust the senior managers to assess the risks and make an appropriate decision about returning to work, so I am not worried about going back when the time comes. I am expecting social distancing to be here for a while yet, and it will become the new norm even in an office environment. I commute by public transport though, so I’m more concerned about travel to and from work, rather than being in the office itself.

Personally, working from home has been very helpful for me in managing my symptoms, but I know this won’t last forever. Before C-19, we had the opportunity to work from home regularly, so there was already some flexibility in how I worked.

I am reading with growing concern that some people who had C-19 appear to be moving towards ME/CFS, which makes sense, but is not a good result for anyone.  And I am not convinced that I would have the vaccine, even if it were offered. I would want to see a bit more data about the contra-indications first. But I think it will be a long time before I have to make that decision!

Kay, South Wales

 

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