Post Thirty Four. Planning For A Future With Severe ME.

It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as a result. I then found that the longer I spent away from my blog, the less motivated I felt to get back into it. However, I have recently been following a discussion in one of my ME support groups, it got me thinking, and it inspired me to write this post.

The discussion was about what information/advice we should share with people who are newly diagnosed with ME, which I have shared this at the end of the post. I was especially interested in what we should tell them about the likelihood of recovery.

Once people with ME reach the five year mark, recovery is unfortunately, statistically unlikely. Should we warn those who are newly diagnosed about this? Or is that too harsh for them to hear at this stage? Should we never tell anyone that recovery is unlikely? Is keeping hope alive more important than facing the truth? Does belief affect neurology? By telling someone newly diagnosed that they may never recover, are we setting them on a course of certain non-recovery? Or, is it possible to face reality, accept that recovery may not happen, but still retain hope that it could?

This is where I stand. I think people need all of the available information, however upsetting. I think living in false hope is exhausting, cruel, and ultimately incredibly damaging. I think acceptance is key. I think we need to tell people who are newly diagnosed the truth, that recovery may never happen, that they may have ME for the  rest of their lives, and they should prepare themselves for that, but, some people do recover, it is possible, so accept your reality, but also don’t lose all hope.

When I was newly diagnosed I was told by many doctors that I would recover. One NHS GP said I would recover within four years, and a private doctor even told me that I would recover within one year.

I didn’t know much about ME back then, I was naive and I believed them. I was quite sure that taking time off work and temporarily moving from Edinburgh back to my hometown Peebles (to be nearer my mum) would help me recover.

When I moved back to Peebles I decided to rent out my flat in Edinburgh. This covered my mortgage and meant that when I was well enough I’d be able to give my tenants their notice and move back and get on with my life. I was so sure that this is what would happen that I was actually really worried about what I’d do if I recovered within six months of moving back home. My tenants lease was fixed for a minimum of six months, meaning that if I wanted to move back into my flat within six months of moving out, I wouldn’t be able to. I was genuinely concerned about this, it was a huge source of worry for me at the time.

Well I needn’t have worried, as time went on I realised that those doctors were wrong. The more I learned about ME, and as my ME progressed, the more I began to understand my reality. Most people with ME who do recover do so within two years, and once you hit the five year mark, recovery becomes statistically less likely. I am now in my sixth year of ME, and so far my ME has been on a path of gradual deterioration. It seems that positive thinking and genuine belief of recovery has little effect on an actual recovery.

I wish I had been told the truth when I was diagnosed. I don’t think the doctors told me an outright lie, I think they just didn’t know, so they made an uneducated guess.

My goal is to reach a state of acceptance. Of course I want to recover, that is my biggest wish, but I cope best by facing reality. How can I reach a state of acceptance if I’m not in possession of all the facts? Knowing what my reality is, however grim, is so much easier for me to bear than living in false hope.

What I am doing now is trying to build a life for myself as I am now. For the first time since having ME I am planning for a future that includes severe ME, and I feel so much calmer now than when I was living only in hope of recovery.

When my focus was solely on hoping and waiting for recovery, my mental health suffered. Because with that hope came the constant fear that I might not recover. With that fear came a near constant feeling of nervous dread and anxiety, and a very strong desire to no longer be alive. Without acceptance, I put more time into planning my death than I did my life.

Now, my focus is on living my life with what I have, severe ME. It won’t be anything like a non-ME life, it’s not what I would have chosen, but it’s the life I have, and I want to make it as good a life as possible. Accepting my reality is the healthiest thing I can do.

To achieve this goal I recently made a huge decision, well, two huge decisions. I had to let go of my pre-ME life. I had to let go of my flat in Edinburgh. In January this year I gave my tenants their notice, and in April I put my flat on the market. It sold within three weeks of being on the market, and the new owner has now taken possession of the flat.

Now, this next thing happened very quickly. There had been a house on the market in Peebles that seemed perfect for me, but I couldn’t do anything about it until I sold my flat. So the day that I accepted the offer on my flat my mum contacted the estate agent responsible for selling the Peebles house and expressed my interest in viewing it. We found out then that a closing date had been set for four days time. In those few days I viewed it, I liked it, I panicked, I doubted, I decided it was perfect and I made an offer. My offer was accepted. Within the space of one week, I both sold a flat and bought a house!

The house is in Peebles, just outside of the town centre, but as close to the town centre as possible while meeting the rest of my requirements. It is fully detached. This has been my ultimate dream. A house with no neighbours on the other side of the wall. It’s also a bungalow, which is so much more suitable for me. I thought a detached bungalow, my dream house, would remain a dream. I never expected to find one, and in such a good location.

It will be a couple of months at least before I move in as it needs some work to make it accessible for me – widening of external door frames to allow wheelchair access, ramps to the front and back doors, knocking down a wall to make the kitchen bigger,  new and accessible bathroom, etc.

This house I hope will allow for an easier, calmer and hopefully a happier life. I won’t have the various obstacles that I do in my current home, and I’m really looking forward to living there. I never thought I’d experience that again, feeling excited for the future. I can’t promise that I’ll never feel stressed again, or have periods of feeling low or anxious, but with everything combined, this house should be as close to what I need to live with ME in as much comfort as is possible.

If I hadn’t recognised and accepted the likelihood that I may never make a full recovery, this wouldn’t be happening. I wouldn’t have been able to let go of my flat, and without the money from the sale of my flat, I wouldn’t have been able to buy this house. I would likely remain living in my current temporary accommodation, and hanging onto a state of mind that left me in constant limbo and anxiety. Nobody can thrive in that mental state.

The best chance I have of regaining some health and some function, if I ever do, is to accept my reality and plan accordingly. If I do make some improvement, then that will be a very happy and welcome surprise. Denial, false hope and superficial positivity though, while they may help some people, they don’t do me any good at all.

 

Advice to share with people who are newly diagnosed with ME.

This was written by a member of the support group who has had ME for 25-ish years. He prompted the conversation and after some discussion and a few changes this is what we came up with. I think it’s good and practical advice. Not too gloomy, but also not steeped in false hope. This is the advice I wish I had received when I was first diagnosed.

The main tip for someone newly diagnosed is that most people who recover do so within the first two years, and if you haven’t recovered in 5 years, then you are unlikely to ever recover*. The moral is: do whatever you need to do in the early years to maximise your chances of recovery. In particular, put money and ambition aside. That can wait, because if it doesn’t, you may never be able to do it again. Most people with long term ME pushed themselves in the early years. There is no way that you can do that AND recover. Take having ME very very seriously. The rest of your life depends on it. Pace yourself. Never over do it. Avoid stress like the plague.

If you haven’t recovered within 5 years, you don’t have to give up hope of recovery (it’s not impossible) but you do have to learn to live with it. That’s a different battle. Avoid stress, but remember that life is for living, so overdo it if you must, but do so with a plan. Take control of the illness by deciding when you are going to be active and when you are going to be inactive. Have a predictable weekly – even monthly – routine. Expect to be better in the summer and worse in the winter (or vice versa) and plan accordingly. Try and keep an emergency reserve for the unexpected. Have a contingency plan for when your bad days – when you can’t do anything – last longer than you expect them to. Have a contingency plan for when your best days – when you can do things with minimal cost – last longer than you expect them to. Do you take the opportunity to do even more? Or do you try to build on your success in the hope of some long term improvement?

Over the long term you will have not just bad days and better days, bad weeks and better weeks, bad months and better months, but bad years and better years. Strive to listen to your body and the rules that you have set for yourself. Contact support groups and share. You aren’t alone.

*The statistics for the low recovery rates in long-term ME were shared by ME Research UK during a presentation at the Scottish Parliament, at which he (the member of the support group who began this discussion) was present.

While searching for confirmation of these statistics we found the following…

*These statistics also appear in this report published in 2002 by the Working Group on CFS/ME, a group established by the Chief Medical Officer in 1998.

Overall, there is wide variation in the duration of illness, with some people recovering in less than two years, while others remain ill after several decades.Those who have been affected for several years seem less likely to recover; full recovery after symptoms persist more than five years is rare.”

*The same statistics were shared by The ME Association in an open letter in 2015 to ITV’s ‘This Morning’, in regards to a segment on ME.

Sadly, the prognosis for many adults with ME/CFS, especially when they have been ill for several years and not made any significant progress even with good management is poor and, as the Chief Medical Officer’s Report on ME/CFS noted in the section on Prognosis: ‘Full recovery after symptoms persist for more than five years is rare’.

 

NEWS

Stanford Medicine. Biomarker for chronic fatigue syndrome identified. Stanford scientists devised a blood-based test that accurately identified people with chronic fatigue syndrome, a new study reports.

http://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html?linkId=66719226

CNN. He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son.

https://edition.cnn.com/2019/05/12/health/stanford-geneticist-chronic-fatigue-syndrome-trnd/index.html

Health Rising. Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal.

https://www.healthrising.org/blog/2019/07/11/jama-chronic-fatigue-syndrome-article-tony-komaroff-unifying-model/

MDPI. Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases.

https://www.mdpi.com/2075-4418/9/3/70

Health Rising. “Just Be Positive!” Toxic Positivity, ME/CFS and Fibromyalgia.

https://www.healthrising.org/blog/2019/05/01/toxic-positivity-me-cfs-fibromyalgia/

The Herald Scotland. Belle & Sebastian frontman Stuart Murdoch on ME battle.

https://www.heraldscotland.com/news/17584375.belle-sebastian-frontman-stuart-murdoch-on-me-battle/

Not The Science Bit. If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*.

https://notthesciencebit.net/2019/03/21/if-you-spend-20-years-gaslighting-your-patients-perhaps-you-should-think-twice-before-accusing-them-of-trolling-you/

The Guardian. Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be. Whether it’s ME patients or another target, huge swathes of the media have normalised hatred of minorities for years.

https://www.theguardian.com/commentisfree/2019/mar/19/rod-liddle-disabled-people-hate-media-me

Disability News Service. UN’s torture committee probes UK on ‘grim and unacceptable truths’.

https://www.disabilitynewsservice.com/uns-torture-committee-probes-uk-on-grim-and-unacceptable-truths/

Post Thirty Three. This Is How We Become The #MillionsMissing – A New Project For 2019.

I have decided to undertake a project this year. I wanted to see just how isolated I have become since having ME, so, for the whole of 2019 I will be keeping a record of the time I spend in the company or vicinity of other people.

Why?

As well as satisfying my own curiosity, my aim with this project is to help others understand the extent of the isolation I live in. I want to help people understand just how severely ME limits my ability to interact, communicate with and be around people. I’ve explained before that ME is defined by a pathological inability to produce energy on demand at a cellular level. Unlike the common misconception, ME is not an illness that causes me to feel tired, it’s an illness that limits my energy production. I think most of the people I know can understand how this affects my ability to undertake various physical and cognitive activities, but I’m not sure they know just how severely it affects my ability to simply be around people. I have gone into this before, especially with my last post, Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of., in which I explained how carefully I have to plan and manage the time that I spend around people. I think this post and this project as a whole tie in well with Post Thirty Two, but with this project, I’ll actually be able to show them just how drastically my reality has changed due to having ME.

What this project is not about.

Importantly, I want to be sure that people understand that the isolation I live in is not a choice I have made, it’s not because I lack ‘motivation’, nor is it caused by neglect. This project is not a reflection on any of the people in my life, it is not about lost or fading friendships or a lack of offers. I have lost friends, it’s true, but that is irrelevant to this project. I’m not lacking people, I don’t need to join a befriending scheme, what I am lacking is energy, I am simply too unwell to be around people.

This project is not about loneliness. I wouldn’t have the faintest idea how I could calculate the amount of time I feel lonely. It’s too subjective. How would I accurately log a feeling, especially one that comes and goes in waves? Of course I do feel lonely at times, sometimes excruciatingly so, but this project is about isolation, not loneliness. The results of this project will say nothing about how often I did or did not feel lonely in 2019. It is not a project about my emotions, I have no interest in doing that.

It’s not a scientific experiment, it’s a personal project. My counsellor likened it to more of an evolving art installation, which I like the sound of.

How is this going to work?

To figure out how my current level of isolation compares with the time I spent in the company of people before I had ME, I came to a figure that I think represents an average month for me, pre-ME. I based this on the couple of years immediately before I became unwell, from 2012 – 2014.

First, let’s give you an idea of what my life was like in those pre-ME years, in terms of the time I spent around other humans. I worked full-time for a homelessness charity called Cyrenians. My job was based in a small depot in Leith, Edinburgh, with a small team of staff and many volunteers. I also lived in Leith and had a ten minute walk to and from work everyday. I owned a beautiful flat in the Shore area, a top/fifth floor tenement flat with ninety eight stairs to my front door, in which I lived alone. I attended classes at the gym pretty regularly, both Spin and Body Pump. My gym was also in Leith, just round the corner from my work. I also attended an evening class, wood carving, which was again, in Leith. I volunteered with another couple of homeless charities. I socialised with friends on a weekly basis, whether in the pub, a restaurant, a coffee shop, or at the cinema, a concert or the theatre. I also enjoyed spending time alone (but surrounded by people) – reading a book in a coffee shop, exploring museums and art galleries, and I liked to make use of Edinburgh’s many green spaces, Holyrood Park, Arthur’s Seat, Princes Street Gardens, etc. I spent time with my family – my two sisters, my mum and my niece and nephew, who I babysat for fairly regularly. To get around Leith I mainly walked, but to go to the city centre, or anywhere else, I would use the bus. I travelled as much as I could. In those couple of years before ME I especially enjoyed travelling around the UK to see my favourite bands – my favourite bands rarely came to me, so I had go where they went. By turning a concert into a short holiday I got to see parts of the UK I’d never been to before, including Manchester, Cornwall, Halifax and Brighton. I also spent time in London and Kent roughly once a year. I went to Iceland for the first time and I completely fell in love with Reykjavík, and have returned a few times since then. This was my life pre-ME, in terms of the activities I did that involved being with or around other people. It was fun and I was enjoying myself, and despite being an introvert, it was full of people, but perhaps more importantly, it was only full of people as and when I chose to be around people. I was afforded that luxury before I had ME, now my illness dictates when I can be around people.

So, I calculated that, pre-ME, I spent at least 253.4 hours per month in the company of other people. I broke it down as follows…

  • An 8 hour work day Monday to Friday, and 4 hours every fourth Saturday. I haven’t included any overtime.
  • I estimated 18 hours per week for the other activities in which I was in the company of, interacting with, or in the vicinity of other people, as described above.
  • I lived alone pre-ME and I still do, so my time spent around other people will automatically be lower than anyone who doesn’t live alone.

I plan to write a blog post with the results of this project early-2020, or I might coincide it with International ME Awareness Month in May 2020, but I thought I would give you a sneak peek at January’s data.

img_1101
The total time I spent with or around other people in January 2019 was 22 hours. Of this time, 7 hours and 5 minutes were outside of my home.

So, as you can see, I have created categories for each person/set of people – my mum, who is also my carer, other family members, friends, medical, counselling, acupuncture, my cleaner, The Super Store (a shop between my house and my counsellor’s office) and the Sainsbury’s delivery man (for non UK readers, Sainsbury’s is a supermarket).

Each of January’s categories in more detail. 

My mum/carer – 16 hours

It’s important to note that when my mum visits me, it’s not always a social visit, these 16 hours include the time she spends doing various jobs for me around my home – washing my dishes, unpacking groceries, changing my bedding, filling my pill boxes, emptying my bins, etc. So when she’s here for an hour, possibly only half of that time will be spent in conversation. When I’m not feeling well enough for a proper visit she will leave after having done whatever jobs I need doing. So sometimes her visits will be as short as 5 minutes, if she’s only dropping off some shopping, for example.

Other family – 15 minutes

The 15 minutes of ‘other family’ time were when each of my sisters (one with her boyfriend and the other with my niece and nephew) attempted to visit me but I was too unwell each time, so could only have a quick hug/chat by the front door.

Friends – 0

I wasn’t well enough in January to see any friends or do anything beyond the essential (medical, counselling, my mum’s visits etc).

Medical – 1 hour

I had an appointment at Borders General Hospital in January. I have included the time spent in the waiting room. This entire outing took 3 hours, with around 1 hour, maybe a bit longer, being for the actual hospital bit, the rest being the time it took to get there and back. My mum drove me, so I included the travel time in the ‘mum’ category.

Counselling – 3 hours

My counselling appointments are 50 minutes long, but I’ve rounded it up to 1 hour, to include the time I spend walking there and back. This may seem insignificant, but my walk to and from counselling, even though I’m not interacting with any of the people I pass on the way, is the time of the week I feel the least isolated. It’s not just because I can see the other people, they can see me. I’m present, I’m not invisible, I’m out there, existing, not only in my life, but in the lives of the strangers who walk past me on the street. I would compare this to the time I spent walking to and from work, or the gym, or my evening class, or on the bus to and from the city centre in my pre-ME life. This is time spent in the vicinity of other people, but not interacting with them.

Acupuncture – 1 hour 20 minutes

My acupuncture appointments are in my home, roughly every two or three weeks. The actual acupuncture session is 30 minutes, but of course it takes a few minutes to update the acupuncture man with my symptoms since last seeing him and for him to put the needles in, so I log each acupuncture appointment as 40 minutes.

Cleaner – 15 minutes

My cleaner comes round when I have my counselling appointments, and I include the 5 minutes I spend chatting with her before I leave for counselling. Because I can only manage one ‘outside’ appointment per week, if I have a medical appointment, I will cancel that weeks counselling appointment. On those days, when I don’t have counselling, but I still have my cleaner round, I’ll retire to my garden shed to get out of her way, which is nicer than it sounds, my shed is quite lovely.

The Super Store – 5 minutes

The Super Store is a small health food shop just round the corner from my house. I don’t go in often, only occasionally when I’m passing on the way home from counselling, and when I do, I always feel noticeably worse the following day, so I really shouldn’t. I usually have my mum buy what I need from this shop, but sometimes it’s nice to go in and browse and do my own shopping, as though I’m an independent adult.

Sainsbury’s delivery man – 5 minutes

Finally, I included the short time I spent in the company of the Sainsbury’s delivery driver. It might not seem worthy of including, but if I haven’t seen anyone for a few days, those few minutes of interaction can make all the difference.

Outside

Of the total 22 hours I spent in the company of other people in January, 7 hours and 5 minutes of that time were outside of my home – this includes my one medical appointment at Borders General Hospital and the time it took for my mum to drive me there and back, my counselling appointments, and one 1 hour drive with my mum for a change of scenery. This 7 hours and 5 minutes isn’t just the only time I spent outside of my home around other people, but the only time I spent outside of my home in January full stop. This is why I describe myself as ‘mainly housebound’, as opposed to simply ‘housebound’, many people whose ME is more severe than mine are unable to leave their homes, or even their beds, at all. I don’t include the time I spend in my garden as being ‘outside’, I count that as being at home.

Some percentages. 

If the online percentage calculator I found was right (with my ME foggy brain I am not even going to attempt to work out the percentages myself), this means that I spent 91.31% less time in the company of other people in January than I did per month before I had ME.

The pre-ME figure of 253.4 hours was spent mainly outside of my home, so this means that the time I spent outside of my home in January was reduced by 97.11%, when compared to my pre-ME life.

On average there are 730 hours in a month, so based on January’s data, in which I spent 7 hours and 5 minutes of it outside of my home, I am 99% housebound.

I look forward to seeing how these percentages differ as each month passes.

What’s next.

I plan to write a blog post in 2020 with the results of this project. I don’t know yet how I will present the information, what observations I’ll make or what conclusions I will draw. It will be an evolving project, what seems important to me now may not seem so important when it’s time to bring all the information together, and I will add new categories as and when I need to. Hopefully the end result will be of some value, but even if it’s not, it’s a good excuse to play with spreadsheets and percentages, which despite being cognitively draining, I really enjoy!

About the title – This Is How We Become The #MillionsMissing.

I was given the idea for the title of this project by @JBKid7 on Twitter. When I shared my idea for the project with my January stats, @JBKid7 shared it with the caption “This is how ME affects us. This is how we become the #MillionsMissing.”.

If you don’t already know, #MillionsMissing is a global campaign for ME health equality. Lead by #MEAction, the first global protest/demonstration took place in May 2016 and has since grown each year to an astounding 100+ cities and virtual protests in 2018. We protest around the world for increased government funding for research, clinical trials, medical education and public awareness. Most people with ME are too ill to attend the demonstration so they send in shoes with a label summarising their story to symbolise their support. The empty pairs of shoes are displayed at the protest as a striking visual image of the #MillionsMissing.

The name #MillionsMissing symbolises the millions of people with ME who miss out on everyday life, and the millions of pounds missing from biomedical research into this devastating illness. In terms of missing out on everyday life, I thought this would be the perfect title for my project. There are approximately 17 million people with ME worldwide, 250,000 of them here in the UK. That’s a lot of people missing out on everyday life. We are the #MillionsMissing.

 

NEWS

Health Rising. Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

https://www.healthrising.org/blog/2019/02/08/metabolomics-chronic-fatigue-syndrome-oxidative-stress-low-oxygen/

Frontiers. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

PLOS Blogs. Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/

Bustle. How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging

https://www.bustle.com/p/how-to-find-a-doctor-when-you-have-mecfs-because-the-process-can-be-challenging-15536013

Virology Blog. Trial By Error: HRA Report Does Not Vindicate PACE

http://www.virology.ws/2019/02/06/trial-by-error-hra-report-does-not-vindicate-pace/

White House Chronicle. The Deadly Hurt of Loneliness — It Kills

http://whchronicle.com/the-deadly-hurt-of-loneliness-it-kills/

Springer Link. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

https://link.springer.com/article/10.1007/s11011-019-0388-6