(This is a post I felt compelled to write. I’m marking it for future editing and maybe extracting from it for other future posts or shortening it and reposting somehow else. For now, it’s ended up over 2200 words. Now I tried to think about editing it and it’s grown to 2800 words! It’s maybe a bit muddling away from the point in places. I’ll have to return to it another time after leaving it some space but I’m publishing it anyway otherwise I’ll forget.
My sincere apologies for not making a better piece of writing while I am writing in memory of Emily – and while doing so then writing so much about my own experience and thoughts on the current M.E. debate. I feel there are some important points about that debate that should be of greater interest to the wider population and so I do wish I could write better articles. If you only want to read some parts, my main reason for posting was to share news of a book written by a lady with severe M.E. and you can find that information and a link in the lower segment of this post).
I’d love to get out in the real world for some window shopping. My last occasional jaunt was probably almost two years ago now! How time flies – and at least blogging can be some kind of fun – and an essential for keeping some form of interaction and human contact! Anyway, I count my blessings every day, nevertheless.
And although that paragraph makes it appear I haven’t got out at all, the nearest local small shops are only 750 steps away. Since last summer I’ve had no choice but to go out more regularly, when my electricity supplier withdrew online pre-payment facilities – unless I change to a smart meter and use an app and that being too difficult for all kinds of reasons and unwanted! – so anyway, I do HAVE to get myself out to a shop however many days or weeks it takes coping with the impacts of that exertion, otherwise I’d be living with candles, battery-power and camping gas (always readily available in the store cupboard for emergency provision alike all homes need although so far managing the challenge adequately enough that they stay in stock!)
So I’m very grateful for shops being that close to home and the opportunity for small jaunts out of the house. I’m even grateful for the fact that I might appear quite ‘well’ and so-called ‘normal’ some days. You might not even know I only threw trousers and coat over night-clothes and tidied my hair so not even ‘dressed’ appropriately. They don’t sell books though (and a lot of magazine and newspaper quality has become dire and so has the price in comparison to books!)
I’m even more grateful for online shopping potentials although even simple supermarket shopping with a pre-ordered items list available can take me longer managing the information technology than if I were to physically travel (even by bus) to my nearest big supermarket a mile and a half or so to pick, pack and return with the load myself. Although that’s not been viable in quite a long time even if I’d used taxis. Never mind.
More than that, I’m even more grateful for a good local mobile shop van selling basic essentials like bread and milk and baked beans and toilet roll, tea, coffee, sugar etc. and we are even fortunate enough to have an ice cream van stocking basic everyday pharmaceuticals like antiseptic cream, paracetemol, indigestion lozenges, cough syrup. These both stop very close to my house so if I can get up and out to them in time these services are essential – so I take buying local seriously and whenever possible even if it’s more expensive for the product – it’s not actually if you factor in taxi or bus fare or delivery costs – or the prolonged impacts of quite short walks.
So I am very fortunate indeed. Not everyone has access to such blessings as I.
It’s staggering though, how much of a difference it made no longer being only 350 steps away from the nearest local shop, and now being 450 steps from a bus stop instead of 150 steps. It doesn’t seem like that much difference when you look at the numbers but it’s one of the many reasons I find myself still in the midst of quite severe relapse that’s been progressively worsening since around 2007-2008, big M.E. crash 2009 (perhaps with a non-M.E. event that was never managed properly due to domestic abuse and misrepresentation of my problems by my now ex-partner) and then of course moving home six years ago was the last thing I needed for the negative health impacts resulting from such effort -but the need for domestic change made it unavoidable while my ex-partner appeared disabled by his benefit status even though he had quite good general physical health and only a back injury but could drive a car, could have stayed locally enough with family etc. etc.
The negative impacts of ‘welfare’ and Work Program interventions were what should have been another avoidable factor to prevent further ill health – from around the time public service employees were being led to believe that changing a patient’s mindset and simple excercise and encouragement following the mass-marketing and promotion of the proven-to-be-seriously-flawed PACE Trials – a research project that turns out to have been funded by the DWP (in collaboration with other funding providers).
I’d missed all the good advice from M.E. organisations about claiming welfare (ESA) while I was too unwell to use the internet but just about able enough to attend appointments and going with the welfare literature for my claim – and wanting to be well enough to work and so became a soft target when the mandatory activity phase kicked in due to all the ‘claimant avoidance’ even though I’d not partaken in such ways of managing my welfare rights. I still don’t see how actually meeting the eligibility criteria ended up being the very thing that almost killed me through total deprivation of the means to live. Why did an old age pensioner’s state pension have to prevent me from starving for six months while she was enduring her own battle with cancer? Would she have survived longer or had better outcomes from her own treatments if she wan’t stressed by struggling to prevent my starvation? I couldn’t even do anything to help look after her!
But that’s all another story and a very personal and private one. And many a public story in the mix. I don’t really like writing about these things. But sometimes it’s good to let it out.
I prefer distracting my mind and getting on with anything else I can manage to do unless I’m totally incapacitated. Pain does sometimes hurt less if you can just take your mind off it and that is how I was raised – not with wrapping in cotton wool and not with medicinal pain-killers unless absolutely essential. I didn’t even recognise my own labour pains in pregnancy because I have always learned to cope with unmedicated pain. And that’s not a failure of parental care it was a necessity in the decades of my childhood and youth. It also protects my health from further harm due to the negative effects of chemical medicines upon my fragile or sensitive bio-chemistry and physiology. But not being prescribed medicine appears to evidence less severity or less acute disability and that’s nonsensical because a lot of doctors won’t prescribe any pain relief for M.E. patients other than perhaps something you could buy over the counter with no prescription and at very small expense.
However ill I am, I like to think “I live my life to the full every day” – even though it might not appear be be so from a ‘healthier’ perspective and my ‘big’ achievements might be very small and trivial if I compared myself among ‘healthy comparisons’. But I don’t.
Control. It’s all about control.
But I didn’t start this post to air my woes and it isn’t all about ME – but it is about M.E.
And the loss and sadness I referred to in my post title are not those you might assume I feel about the circumstances of my own life.
As it’s my birthday this month I decided I’ll squeeze my budget and treat myself to a book, or a few new books. A twitter notification in my email caught my eye this afternoon (while I’ve been well enough to check email lately) and there is in it a book I really must buy.
But more than that, that same item delivered me a tremendous feeling of loss and sadness. I didn’t know the author but her name has been familiar to me for very many years while I’ve been patient with M.E. I don’t even know when Emily Collingridge departed from our world or the details of her passing. I didn’t want to pry into the detail so haven’t tried. I have no doubt that information will reach me at some point, it will just appear in view as unexpectedly as this book promotion via twitter in my email did this afternoon.
I don’t stay ‘in touch’ enough with the patient world, nor even my own nearest and dearest a lot of the time. I was shocked – but not perhaps surprised – and upset as if I’d just heard a real world friend or acquaintance had died. People alike Emily Collingridge have been making a difference for people with M.E. for decades. And I wonder, is it that we are losing so many people or is it that news carries differently nowadays in saturating ways that overwhelm us in the online world and…
Why does the rest of the world turn so slowly and refuse to at least accept and try and understand? Is it because it is too easy to choose to believe the ‘nicer’ version of individual realities – that ‘you could get better if you’d just…’?
I worry sometimes what the world will become for people with M.E. without people like Emily Collingridge doing such wonderful things as to use their precious little energy to bring hope, comfort and support to others. Where would we be without people like the Countess of Mar, Jane Colby, Dr Charles Shepherd, Dr Sarah Myhill? Thankfully they are still with us. And plenty a good few more. But should they have to be in a position of forever needing to chip away at what seems an impossible brick wall while they advocate patient rights and fight for better awareness to ensure some humanity in the management of meeting the needs of the patient community. Where would any of us have been without people like Dr John Richardson, Dr Bell, Dr Alan Franklin, Dr Elizabeth Dowsett? How can so much of what is already known and known for decades be so discounted and undermined by healthcare business frameworks.
As our advocates and pioneers fade from this world, what will the world be like for future generations of people – children, young people, adults – people with M.E.? Multiple sclerosis patients were in a similar predicament until the 1960s or thereabouts. How many decades until people with M.E. have their predicament relieved? Mid-2060s or thereabouts when the UK government release research findings from the mid1980s that were classified until 2025 and then re-classified to prevent disclosure, until 2064? (or 2065, I can’t quite remember for sure and can type but killing my eyes with this screen and not wanting to research) But reclassified Why? So we can all pop off and die before we cost too much money? Why might we ‘cost more’ than anyone else? Why is the UK a nation with Equal Opportunities for all when so many are excluded from Equal Opportunities in such ways? (And I have in mind, at all times, all the overlaps with other human conditions and many of those patient populations also have others suffering such neglects and outrageous negligences and detriments).
I wouldn’t currently describe myself as an ‘M.E. patient’ because there is dreadfully little (or no) healthcare for people with M.E. You wouldn’t believe it looking at the M.E. Association’s survey of local authority’s specialist healthcare services because apparently my local authority claims to provide specialist services for M.E. Yet as a lifelong ‘sufferer’ I am excluded from that provision because of the Chronic Fatigue Strategy developments (aka CFS funded developments).
It’s all become so complex that not many enough can see the wood for the trees. I cannot access Chronic Fatigue Syndrome Services because I have a pre-existing diagnosis of M.E. (Myalgic Encephalomyelitis) from my early teens, confirmed again and again during adulthood. I can not be diagnosed with Chronic Fatigue Syndrome because I already had and have illness with M.E. Some medical professionals and others might still choose to call my M.E. Chronic Fatigue Syndrome even though I cannot and have not been diagnosed with CFS under the Chronic Fatigue Strategy protocols that led to things like the NICE Guidelines 2007 that inform and instruct NHS medical practice. I find it hard to believe anyone might think that developments over recent years are an improvement on what might be referred to as times of less awareness!
I should have been hospitalised with my first big M.E. crash as a teenager (following years of M.E. type ill health throughout childhood but regular enough school attendance and good enough grades) but my mum trained as a nurse until I was born and could provide nursing care for me at home while unconscious and semi-conscious and our family doctor called to the house. My mum could even change my bed while I lay in it even though she had a degenerative spinal condition and severe pain. Obviously as soon as I could stand I refused to lay in bed while she changed it!
Because I wasn’t hospitalised my condition is easily ‘evidenced’ as not as severe as those who were hospitalised during major onset because ‘confidential patient records’ can be withheld even from the patient.
While the NHS tells the world that C.F.S. and M.E. are the same, the NHS also tells us they’re clearly not the same. We are excluded from provisions due to the known harm to our health that is likely to occur were we to access specialist CFS provision. Local authorities often do not have specialist services for people with M.E. even while they appear to say they do. Since specialist CFS services entered the public domain other medical specialists can use the existence of CFS specialisms as a means to re-route the patient PWME (person with M.E.) and deny all kinds of specialist service access that should be available and appropriate. Back to spaghetti junction. Going nowhere fast. If I am developing heart disease, Parkinson’s disease, cancer and basically any other illness at all, I am denied appropriate investigation toward correct diagnoses and access to potential treatment protocols that would maybe even return some better health outcomes. And via this methodology so might many other people who don’t have M.E. because they might get referred to the CFS clinic and they might be accepting of a CFS diagnosis. They might even have their confidential patient information withheld from them. Call it healthcare? I call it crazy!
Anyway, from what little I know of Emily Collingridge I am definitely buying her book. For everything it might be helpful to consider now and ready in case my progressive degenerative illness becomes more severe – and for while I’m aging, as very aging people face these dilemmas too. And as people with longterm M.E. might meet similar ‘aging effects’ much sooner. (I’m not even 50 yet and can hope for better days.)
At some point after I’ve purchased I’ll get around to rejoining A4ME and the MEA, (patient organisations) eventually- I’ve not been a member since the mid-1990s. These charitable organisations now include and represent the CFS patient community. Because they needed the CFS funding to survive. There are important reasons to do so whilst the CFS patient community might be denied routes to accurate diagnoses of other conditions while CFS specialist services help them adjust and manage what might be various pain and fatigue-related conditions and that perhaps being supportive for those patients enabling positive health outcomes enough.
There is a discount on Emily’s book available for A4E members, but I’ll take my copy at full purchase price. In memory of Emily and ever grateful for knowing her name, for her guidance, her strengths and wisdoms and very saddened she is now with us only in the words she has gifted for us but ever thankful that by way of her book she will continue to make a difference.
I’m sharing the book’s link at Action for M.E.
It might be a good guide for both people with M.E. and people concerned to learn about coping with care needs either for M.E. specifically or generally, for people with other conditions and aging issues etc. There’s very good information on this link to the book to help you decide if it’s appropriate for you or not. It appears one we all might need eventually if we hope to preserve any little independence.
Thank you Emily. Thank you A4ME & all others making a difference, or at least trying. Thank you too, for reading and thank you to those who understand and to those who try to understand.