The Clockwork Dodo

You're stuck in the house nearly all the time.
You can't get to work.
You rarely see any family members.
You can't visit any of your friends.
You can't go to the pub, church, theatres, concerts, or other social events.
You do all your shopping on the internet.
You struggle to find some of the foods and other products you need.
You can't get a haircut.
You wash your hands after picking up the post.
You're scared of going into the pharmacy.
You don't know what you'll do if you need to see a dentist.
You don't know when you'll next have a holiday.
You wonder whether foreign travel is a thing of the past.

Welcome to my world. If it's been difficult for you over the last couple of months, please spare a moment to consider how it must feel for those of us who have ME: it's been like this for me for about 20 years.

Please don't take this the wrong way. There are people who are really struggling at this time: those who are ill or self-isolating, or those who (like my Mum) are elderly or vulnerable and are having to manage without the carers, cleaners, and other people they normally rely on. I feel for them, and I'm praying for them every day. But I'm finding it difficult to sympathise with people who say they are bored just because they haven't been able to leave the house for 2 months, or who are complaining because their hair is a bit longer than usual.

Thanks to ME, all of the things listed above are true for me all the time. I haven't been able to work since 1998; I think the last time I visited a friend's house was in 2005; I've been struggling to find suitable foods since 1992; I haven't left the UK since 1998; and I can't remember when I last had a haircut (and guess what? - having long hair has had no appreciable adverse effect on my quality of life).

Your lockdown? My normal.



If this post has made you think, please spare a moment to find out more about ME or to donate to ME research. There is currently no cure for ME, and people who have it have to live like this all the time. Some are very seriously ill and may be permanently stuck in bed, but even those who are not severely effected are often very isolated, and all of us are living with the sort of daily challenges which healthy people don't usually experience.

It's International ME Awareness day today. I've decided to take part in #MillionsMissing - a global campaign which has been happening on this day for several years now. In major cities around the world groups of people with ME and those supporting them gather together in public places, while those who are not well enough to be there with them send pairs of shoes with a note attached to explain why they are missing, or to describe what is missing from their lives because of having ME.

People are also asked to post a photo of a pair of shoes on social media, with a note about what these shoes represent now they are ill with ME.

Why?

Because people with a serious neurological disorder, worsened by any exertion, with a sickness impact profile which at its worst is higher than that of any illness but terminal cancer and stroke, are still being told by health professionals that we should do some exercise or receive counselling, and that will make it all go away ... .

This poster from ME Action UK sums it up:



Please take a few minutes today to find out a bit more about the reality of life with ME. Search #MillionsMissing on social media. Have a look at the ME Action Instagram page or the ME Action UK Facebook page. Read some of the stories about what people with ME are missing, about what is missing from our lives. And support proper biomedical research into ME, such as that provided by ME Research UK.


If you can't read the label on my shoes, it says

I'm missing ...
* going to church and dancing in the aisles
* going to the theatre - or performing in plays
* getting on a plane or boat to another country
* getting on a bus or bike to the nearest town
* having visitors, visiting friends, conversation
* having a clear brain to write letters or emails
* eating all my favourite foods
* mornings
* being able to study, work, or volunteer
* being able to access adequate medical care

It's ME Awareness day today, but once again I haven't felt well enough this week to think about a blog post for it. So instead I'll post an ME function ability scale, which allows people with ME to determine how well they are. There are several versions, but I like this type best because some of the others are the other way round, with 0% being well and 100% being totally incapacitated, allowing people to tell how ill they are. I think this one is more positive.

How well am I? Well, like most people I don't fit exactly into the boxes, but overall I'd say that most of the time I'm about 60% well. I have minimal pain levels and my mobility is unusually good for someone with ME, so that's more along the lines of 80%, but my cognitive function is poor, nearer 30%. My noise sensitivity and chemical sensitivities are also severe - I hear sounds/smell scents as 20x louder/stronger than they are, so being bombarded by noise or overwhelmed by chemicals results in my health levels dropping rapidly. This month, for instance, our neighbours have been dismantling their old patio and replacing it with a new one, and the noise and stress meant that for a few days my overall health level dropped to 20% (thankfully it's almost back to normal now).

If you have ME, how well are you? If you don't, perhaps you could read this and pass it on to raise awareness of the illness - a lot of people don't realise how much ME effects the lives of those who have it, and this function ability scale might open their eyes to the reality of it.


100% FULLY RECOVERED
No symptoms, even following physical or mental activity. Able to work or study full time without difficulty and enjoy a social life.

95% VIRTUALLY RECOVERED
No symptoms at rest. Mild symptoms following physical or mental activity, tire rather easily but fully recovered next day. Able to work or study full time without difficulty, but social life is slightly restricted.

90% MILDLY AFFECTED
No symptoms at rest. Mild symptoms following physical or mental activity. Work or study full time with some difficulty but social life rather restricted. Tire easily with gradual recovery over 2-3 days.

80% MILDY AFFECTED
Mild symptoms at rest, worsened to moderate by physical or mental activity. Full time work or study is difficult, especially if it is a crowded, noisy or busy environment. Home tuition or part-time study is possible. Social life very limited due to using all energy working or studying.

70% MODERATELY AFFECTED
Mild symptoms at rest, worsened to severe by physical or mental activity. Daily activity limited. Part time work or study may be possible for a few hours a day with careful pacing of activities and rest periods, but it will be very tiring, and restrict social life.

60% MODERATELY AFFECTED
Mild to moderate symptoms at rest. Increasing symptoms following physical or mental activity. Daily activity very limited. Work or study outside the home is difficult unless additional support is available, eg quiet room for rest breaks, use of disability equipment. Short (1-2 hours) daily home study/work may be possible on good days. Quiet, non‐active social life.

50% MODERATE TO SEVERELY AFFECTED
Moderate symptoms at rest. Increasing symptoms following physical or mental activity. Rest times needed. Simple, short (1 hr) home study/activity possible when alternated with quiet, non-active social life. Concentration is limited. Not confined to the house, but unable to walk much more than 100-200m without support. May manage a trip to the shops in wheelchair.

40% MODERATE TO SEVERELY AFFECTED
Moderate to severe symptoms following any activity. Care must be taken not to overdo anything at this stage. Not confined to the house but unable to walk much more than 50-100m, usually requiring aids such as walking stick/crutches. May manage a wheelchair trip to the shops on a quiet day. Several regular rest periods during the day are needed. Only one ‘large’ activity possible in a day, eg showering, friend popping round, doctor's visit, or short (half hour) home study. Activities usually require rest day/s between them.

30% SEVERELY AFFECTED
Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but able to get downstairs and may occasionally go out for quiet wheelchair ride. Most of the day spent resting. Small activities possible, eg can watch TV/listen to music for short periods, but mental concentration poor.

20% SEVERELY AFFECTED
Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few short periods. Concentration poor, but some small activities possible, eg can read for about 5-10 minutes at a time.

10% VERY SEVERELY AFFECTED
Severe symptoms following any activity. Weakness and pain in arms and legs. In bed most of the time but able to get to the bathroom with help. No travel outside the house. Concentration very difficult indeed. Only one very small task possible per day for only 5-10 minutes.

5% VERY SEVERELY AFFECTED
Severe symptoms almost continuously, but may be possible to be propped up in bed for very short periods. Weakness and pain in arms or legs can give rise to paralysis, dizziness, and nausea. Small amount of personal care may be possible with help. No TV is possible but a little quiet music or audio book may be listened to for a few minutes, or a friend may be seen for a minute for a quiet word. Any stimulus worsens all the symptoms.

0% VERY SEVERELY AFFECTED
Severe symptoms on a continuous basis. In bed constantly, feeling extremely ill even with permanent rest. Severe pain throughout body, and skin may be very sensitive to touch. Unable to tolerate light, noise or movement - curtains are closed and earplugs are needed. Severe dizziness may be experienced. Unable to sit up in bed and unable to care for self. Nausea and severe fatigue make eating extremely difficult. Liquid based food preferred, and occasionally nasal feeding tubes are required when the energy to chew is completely spent. Any stimulus worsens all the symptoms. Any visitor to the room is almost impossible. Talking, even to carer/family, is often impossible. Severe adrenaline rushes felt with heightened sensitivity. Sleep pattern often completely reversed.


This scale is an amalgamation of the ones found here and here. If you want to look at some others, there is an upside-down one here and a more detailed one here.

Best wishes for Christmas to anyone reading this: I'm sorry I don't feel able to do my usual round of visiting other blogs and wishing people a happy Christmas this year.

I haven't blogged much in 2017 because we had a difficult and upsetting year, eventually losing my Dad in September to a combination of dementia and hospital incompetence. Dad loved this time of year - he loved putting up decorations, listening to Christmas music, pulling crackers, wearing silly hats, and eating lots of cake and pudding. He was also somebody who embodied the spirit of Christmas, generous to a fault and always willing to put himself out for others, a real old-fashioned gentleman. I'm trying to celebrate Christmas thinking of him and of the good times.

I took this photo for someone on a diabetes forum who is trying to break the stereotypes surrounding diabetes, particularly in response to references to "diabetes on a plate". I couldn't get it all onto a plate, but this is all my diabetes equipment, medical information, and paraphernalia. I don't normally have quite so many sharps bins and old insulin cartridges: they are waiting for me to take them to my surgery for disposal!



Yes, the grape juice, glucose, and sugary mint gels are part of my diabetes treatment - my main problem is having frequent bouts of low blood sugar, or hypos, which need to be treated immediately with something sugary. They are a medical emergency: if they are not treated immediately I could have a fit, go into a hypoglycaemic coma, or die. I even have injectable glucose, just in case I'm too ill to be capable of swallowing.

In fact, if someone whom you know is an insulin-using diabetic becomes ill while you are with them and you can't tell whether their blood sugar is too low or too high, it is safer to give them sugar than to give them insulin. If their blood sugar is too low they could die in a matter of minutes (especially if you lower it further by giving them insulin): if their blood sugar is too high a little extra sugar is unlikely to make things that much worse (so long as it is diagnosed and treated with insulin soon after). Obviously in an ideal world they should be testing their blood sugar so they can be given the appropriate treatment, but if in doubt, always give sugar rather than insulin. Chocolate is not suitable, but a spoonful or two of sugar or honey, or half a glass of fruit juice, coke, or lucozade (so long as not the diet versions), or a couple of Dextrose tablets or jelly babies would be fine.

Information about diabetes on the internet can be alarmist or offensive, and is often just downright wrong. For accurate information and advice about all types of diabetes, head to the Diabetes UK site.

Yesterday? I totally forgot it was ME Awareness day.
Today? I can't think clearly enough to write a blog post about it.

This is the sort of thing which happens when you have severe cognitive dysfunction, one of the symptoms of ME.

Instead, here are some links to some posts on other people's blogs, explaining what it means to live with a chronic illness (not always ME, but a lot of chronic illnesses share similar symptoms) - please have a look at one or more of them:

When I Say Can't

But I thought you said you were getting better?

What do spoons, beans, gorillas, credit cards, and envelopes have in common?

The Spoon Theory

ME Outside In (Drawing)

What ME is Really Like

A Glimpse Into Severe ME/CFS

I had intended to post this follow-up to my previous post several months ago, but I've been so busy concentrating on my my 50 Things To Do While I'm 50 blog that I haven't had time to sort out the photos until now.



After our disappointing trip to Ryton we carried on driving back towards the Cotswolds, while I hastily looked up the closing times of other gardens we might pass en route. We decided to stop at Hidcote - we hadn't planned to do this as it was towards the end of our long journey rather than in the middle of it, but as we hadn't managed to get tea and cake at Ryton we were fairly desperate to find somewhere we could stop and have a drink.



We arrived shortly before 5pm, knowing that they closed at 6 and that the last admission was an hour before closing. We also guessed the cafes would close before the gardens, so we weren't too hopeful about whether either of them would be open or would have any cake left. But we had a flask in the car and thought that if the worst came to the worst we could always have our own tea in the car park.



The smaller cafe, which is beside the exit from the garden sales area, looked nice but was a bit noisy as all the people leaving were passing it on their way out. We asked what time they closed, and explained that the other cafe might be more suitable for me because of my noise sensitivity, but that we might come back. The staff were friendly and understanding.



We went on to the garden entrance, and explained again to the staff member on duty there that I am disabled and we were trying to decide which of the two cafes would be more suitable for me. By this point I was exhausted and struggling to walk. We didn't ask for help, but she very kindly offered to go along with us and unlock the back gate so we could go straight through to the other cafe without having to walk round too many of the gardens to get there.



The second, bigger cafe was quieter as most visitors had left the gardens by that point, and it had a wider variety of cakes as well, so we bought our tea and cake there. Every time I eat out we have to explain to the cafe staff that I have multiple allergies and need to know all the ingredients of the cakes; also that as one of my allergies is to chlorine I can't drink tap water, so have to buy a teabag and use my own water to make tea. Reaction varies, but at Hidcote this was no problem.



Both our cakes were excellent, and we would thoroughly recommend them. After a rest in the cafe I felt recovered enough to have a short walk through the nearest gardens.



We liked them so much we went back a few days later for a proper walk round the rest of the gardens (when I took most of these photos), and some more tea and cake.





The gardens were stunning - as you'd expect of a big tourist attraction at the height of the season - but what really made it special for us was the attitude of the people working there. The difference between our visit to Ryton and our visit to Hidcote could not have been more marked, not just because the gardens at Hidcote had been better cared for and were filled to the brim with a wide range of healthy, colourful plants, but also because the staff at Hidcote went out of their way to be helpful.





We will be visiting Hidcote again.