Post Thirty Five. Scottish Borders Council ‘Disability Tax’.

So technically it’s not a disability tax, but I am being financially penalised by Scottish Borders Council for two things that are completely outside of my control – one of them being my disability.

I shared the news of my new house in my last post, and while I’m delighted about it, it has resulted in an incredibly distressing situation regarding council tax. For non-UK readers – council tax is a tax levied on households by local authorities (of which mine is Scottish Borders Council) in Britain to pay for services in the community, it is based on the estimated value of a property and the number of people living in it.

For any new readers, I’ll start at the beginning…

I have severe Myalgic Encephalomyelitis (ME), a complex neurological disease involving profound dysregulation of the central nervous system, the immune system and dysfunction of cellular energy metabolism.

I first became unwell in February 2014 and in December 2014, at the recommendation of my GP and my employer, I had to stop working. I received my diagnosis of ME in March 2015, and in the summer of 2015 I had to move from my beautiful flat in Edinburgh back to my hometown Peebles. After my sick pay ended I couldn’t afford my mortgage and I was also struggling to live independently. By moving back to Peebles I could rent out my flat, which would cover my mortgage, and I would be closer to my mum, who is also my carer.

I had hoped that I would recover and eventually be able to move back to Edinburgh and continue living my life. Due to the steady deterioration of my ME though, I realised that this wouldn’t be happening, at least not in the near future. ME is currently incurable and there are no safe or evidence based treatments available. It’s a matter of managing my symptoms as best I can and just waiting and hoping that I improve a bit at some point. 

My priority now is to plan a life that takes into account my severe ME, which means making my life as easy and comfortable as possible. So, in April 2019 I put my flat on the market. With the sale of my flat I would be able to purchase a more suitable home in Peebles. My current temporary accommodation in Peebles has been fine for the short term (the last four years), but I need a more suitable (accessible) home in which I can live for as long as I have severe ME, which could be the rest of my life. 

I accepted an offer on my flat in May, and in the same week I found the (almost) perfect house in Peebles, a detached bungalow close to the town centre. I made an offer and it was accepted. I took possession of the new house in July. 

The new house, as lovely as it is/will be, isn’t suitable (for me) in its current state, it needs some building work to make it accessible. Once the work is complete it should allow me to live in as much comfort as is possible with severe ME, which has me almost completely house bound and mainly bed/sofa bound.

I take my duty to pay council tax seriously and I was diligent in keeping Scottish Borders Council (SBC) up to date with my housing situation, in terms of council tax. I first contacted SBC on the same day that my offer on the house was accepted to confirm which reductions I would be eligible for as someone who is both disabled and living on a low income. I then contacted SBC again the day before I took possession of the house, to inform them that as of the following day, I would be the owner.

I thought that because the house would be unoccupied and unfurnished while the building work was going on, I would be exempt (as is usually the case) and would not have to pay any council tax for up to six months, or until I moved in, if that happened sooner. I was wrong…

Email from Customer Advice and Support Services at Scottish Borders Council

“I have looked at the Council Tax account for this property and have to advise that under Council Tax legislation unoccupied and unfurnished dwellings are exempt for a maximum period of six months from the date the dwelling was last occupied. As the property has not been occupied since 24/03/2015 which is more than six months ago, you are not entitled to any exemption. However, as the property has been empty for more than twelve months, it has become liable for a Long Term Empty Levy of 200%. This levy will be applied from the date you purchased the property until the date the property is occupied.”

So, not only was I not eligible for exemption during this period, I was going to have to pay double the council tax. This was because the house had been empty for more than twelve months before I bought it (!!!), something that I was unaware of until after I took possession of the house. Apparently it didn’t matter that I had only just bought the house, because it had been empty since March 2015 (said SBC, more recently they have told me it had only been empty since March 2018), as the new owner, I would be financially penalised. I find it absolutely ludicrous that the occupation history of this house is somehow my responsibility. You would think they would reset the clock, so to speak, when the property changes ownership, but no.

I didn’t know the previous owner, but from what I gather, they went into care and then passed away, which is why the property was left unoccupied. Again, this is something I didn’t know until after I took possession of the house. I was in complete shock. I just could not understand why I was being held financially responsible for the (unintentional) actions of the previous owner.

I have been informed that this legislation exists to prevent people from purchasing property as an investment with the intent to leave the property empty, which isn’t ideal during the current housing crisis. I can understand this, it makes sense, but that is not what I have done. I in fact have taken an unoccupied property and am making it occupied. I am helping SBC to solve the problem that they are using to justify the 200% ‘Long Term Empty Levy’. I was also informed at the time that they have discretionary powers over the legislation, which led me to believe that I would be able to reason with them, have them see sense and not apply to levy to me. Later they denied this, I was told that they didn’t actually have discretionary powers over the legislation and they were simply acting withing the law. I should also note that this is a Scottish legislation, so I can’t even blame the Tories for this utterly ridiculous law.

SBC did inform me however that I could apply for a ‘structural repair discount’. If they deemed the work that I was having done to the house to be “major repair/structural”, I could apply for a 50% discount, taking the 200% back down to the normal rate. I applied for this discount and it was granted, but honestly, even this is unacceptable to me. It is not my fault that the house was unoccupied for so long. I am innocent. I have not left this or any other property unoccupied for over six months. I therefore believe that I should be eligible for total exemption for up to six months, as would be the case if the property had been occupied before I bought it. I have done nothing at all to merit this punishment.

What makes this all the more frustrating is that when I do move in, I will be eligible for various council tax discounts – banding reduction (I am disabled), single occupancy (I live alone) and/or council tax benefit (I am on a low income – ESA and PIP). This means that when I move in, I won’t be required to pay the full rate. But, while I’m in the process of making the house accessible, I am only eligible for the 200% to 100% discount, which hardly feels like a discount. It’s so unbelievably unjust.

Leaving aside the fact that I wouldn’t have needed to buy this house in the first place if I didn’t have severe ME… I am only having this work done so that I can live in the house. The house as it is, is not accessible for me. If for any reason this work could not have been done (I consulted with the builder before making my offer on the house) I would not have bought the house. If I was not disabled I would not need this work done. If I was not disabled I would have been able to move straight in. But, because I am disabled, and because I need an accessible home, the consequence is that for a few months, I have to pay a great deal more council tax that I would have otherwise. To me, this feels like a disability tax, a financial penalty for having access needs, a punishment for being a wheelchair user.

After I was granted the 50% discount, in an effort to challenge SBC in regards to the levy I contacted my local Councillor, my MP and my MSP. Everyone is in agreement that while the legislation has its place, applying this levy to me is unfair and completely lacking in common sense. Someone in my situation, who is renovating a property to make it accessible should not be financially penalised in this way.

Support from my Councillor, MP and MSP. 

“It is supposed to help stop the empty homes crisis but in reality its people like you that are getting unfairly penalised. I get why they are trying to do this but in some cases (like yours) common sense need to be added. Its not your fault that someone else left the property empty for years, therefore you should not be penalised unfairly.”

“You are correct in stating that the point of the council tax levy is stop houses lying empty, but that is not what you are doing.”

“This situation is awful, and I have absolute agreement with you that someone in your situation should not be required to pay council tax on a property that you are renovating to equip it for your needs.”

“You have your MP, your MSP and the Council Leader on side.”

Despite their support though, unfortunately everyone’s hands are tied.

“I am so sorry… legally the councils hands are tied. We have looked at your case and tried to find as many discounts as we can possibly find to apply to you bill. I realise that this is not good news and if we could do more we absolutely would.”

Legally, the Council cannot apply any more discounts or reductions to my council tax (so they say), so I have no choice but to pay, which I have done, grudgingly.

My Councillor however is in complete agreement with me that this legislation must be challenged.  She believes that my case should be highlighted to the Scottish Government and she agrees with me that the law should change. So I have given permission for the details of my case to be forwarded to the Scottish Minister who has responsibility in this area. I’m not sure what will happen next, I’m considering a petition, and I’m not against going to the press. If we are successful, and we get this law amended, I will attempt to be refunded for the amount of council tax that I will have paid during this period.

As well as financially hurting me, this situation has caused me a great deal of emotional stress and anxiety. I have found dealing with SBC to be incredibly unpleasant. The flippant nature of some of their communication has been upsetting, not to mention the amount contradictory and incorrect information they have given me. They have left me with zero confidence that they know what they’re doing, or that they care about the well being of their citizens/constituents (or whatever we are). I am dreading having to deal with them again when it’s time to apply for the Council Tax reductions when I move in.

SBC have also forced me to give up some of the accessible features of my new home. I hadn’t bargained on having to pay Council Tax during this period, but now that I have to, I’ve had to use money that I had saved up and earmarked for other things, such as an accessible walk-in bath.

Local authorities have a responsibility to protect their vulnerable citizens, and as a disabled adult, as much as I dislike this, I am considered to be ‘vulnerable’. The Adult Support and Protection (Scotland) Act 2007 places a duty on the Council to protect vulnerable adults from harm. Harm can include: physical harm, psychological harm, financial harm, sexual harm and neglect. I don’t believe that SBC have protected me from harm. I actually feel that the harm I have been subjected to, both financial and psychological, has been caused by SBC. But also, because stress causes my physical ME symptoms to worsen, and this situation has certainly been extremely stressful, I could argue that I have been subjected to physical harm as well. I’m still trying to figure out exactly how I feel about this, and how I plan to proceed, if I have the energy to make an official complaint, or to take it to the Local Government and Social Care Ombudsman. Or it might be enough for me to know that this blog post is out there for the world to read. 

In regards to my campaign to have the law amended, I will provide updates as and when they happen, if they happen. Rather than publish a new post with each update though, I think I’ll add updates at the end of this post, so keep an eye out if you would like to know what’s going on. I will also mention any updates on this matter in future unrelated posts, with a link that will take you back here.

Wish me luck!

 

UPDATE: 22nd September 2019

Both my MP and Councillor (who is also the Council Leader) wrote to the Scottish Government Housing Minister, Kevin Stewart MSP and brought up the issues I have in regards to this legislation.

These are the changes I want them to make…

  1. I believe that a clause needs to be added to the legislation that allows local authorities to be flexible when implementing the levy on people. They should consider each case on an individual basis, and in some cases, like mine, they should apply common sense and not apply the levy.
  2. I also believe that the ‘empty property’ clock should be reset when the property changes ownership. It astounds me that no one seemed to consider this, or if they did, they saw fit to discount it. I wouldn’t have to take responsibility if the previous owner failed to pay a phone bill, for example, so why am I being held responsible for the previous owner leaving their home unoccupied? It makes no sense whatsoever, and I’m amazed that these issues weren’t flagged up at SBC when they first implemented the legislation.

SBC are adamant that they are simply following the law, that they do not have the power to be flexible, they are placing the ‘blame’ entirely on the Scottish Government, but the reply that my MP received from Mr Stewart tells a different story…

“Your letter expresses concern about the application of the empty homes levy Scottish Borders Council and a lack of flexibility afforded by the legislation. The levy was introduced with the intention it would act as an incentive to encourage private sector home owners to bring the property back into use, rather than simply a revenue raising tool. I can advise that The Council Tax (Variation Unoccupied Dwellings) (Scotland) Regulations 2013 provides local authorities with the power to apply a surcharge on long-term empty homes and determine the circumstances in which the increase applies. It allows them, should they choose to do so, to take the individual circumstances of owners into account when applying the increase. We updated and refreshed our guidance to clarify this flexibility and this was circulated to all local authorities in April 2018. These powers are discretionary and rightly lie with councils, however, I have been encouraging those with blanket policies to look at their peers who have chosen to adopt a more flexible approach.”

So, while SBC and the Council Leader are telling me that SBC have no flexibility in applying the levy, the Housing Minister is denying this. He actually states outright in his letter that local authorities do have discretionary powers and they are allowed to take individual circumstances into account. He appears to be placing the ‘blame’ back onto SBC.

Mr Stewart also stated in his letter that normally, the power to make these decisions would lie with a dedicated Empty Homes Officer, which SBC do not have. My MP has raised this issue with the Council Leader to ask if SBC have any plans to hire somebody to fill this role.

I wonder, if SBC had filled this role, maybe that is the person who would have had the power to deal with these cases on a discretionary basis. Maybe that is the person who could have applied common sense to my case, and not financially penalise me (for the previous owner leaving their property unoccupied).

SBC raised £611,881 in 2017 thanks to this legislation, so you’d think they could afford to employ someone to fill this role.

In lieu of an Empty Homes Officer at SBC Mr Stewart recommended that I contact the Scottish Empty Homes Advice Service, he said they could perhaps liaise with SBC to try to come to an agreement about the level of Council Tax due.

Mr Stewart ended his letter with this…

“I note your comments about resetting the clock when empty homes are taken on by new owners. This is something I will consider as part of our review.”

For some reason I’m not feeling particularly hopeful that he will follow through on this.

Unfortunately my MP cannot do anymore to help me because this specific issue is devolved to the Scottish Parliament. However, he has been in contact with Michelle Ballantyne MSP  (my MSP – I thought Christine Grahame was my MSP but apparently I have more than one?!?) and someone from her office will be in contact with me to discuss how she can perhaps move my case forward. She will be able to ask questions within the Scottish Parliament directly to the Housing Minister, which is something that my MP cannot do.

So, that’s where I’m at. My MP and Councillor have hit dead ends, but with the information from the Housing Minister’s letter, I really hope my MSP can move this forward. I’ll be back with another update as and/or when there’s anything new to report.

UPDATE: 4th February 2020

An update to tell you that I have no update. I was in contact with staff from Michelle Ballantyne’s and Christine Grahame’s office for a while, but communication has now dried up. So, that’s that, I guess. None of the people who have the power to intervene and challenge seem to be willing to do so.

 

NEWS

 

ME Science & Research

Health Rising. Dr. Klimas’s Big Win and What it Means for Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2019/09/01/klimas-chronic-fatigue-syndrome-guld-war-bacopa-etanercept/

Health Rising. Cortene to Move Forward on New Drug for Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2019/08/29/cortene-to-move-forward-on-new-drug-for-chronic-fatigue-syndrome-me-cfs/

Simmaron Research. ME/CFS Seahorse Energy Production Study Shows Surprises.

http://simmaronresearch.com/2019/08/me-cfs-seahorse-energy-production-study-shows-surprises/

Simmaron Research. The First ME/CFS Fecal Transplant Study Suggests the Treatment Holds Promise.

http://simmaronresearch.com/2019/08/fecal-transplant-chronic-fatigue-study-promise/

Emerge Australia. Australian ME/CFS biobank awarded to research team which includes Emerge Australia!

https://emerge.org.au/australian-mecfs-biobank-awarded-to-research-team-which-includes-emerge-australia/

Health Rising. Is the Brain Causing the Small Fiber Neuropathy in Fibromyalgia (and ME/CFS?).

https://www.healthrising.org/blog/2019/08/12/brain-small-fiber-neuropathy-fibromyalgia-chronic-fatigue/

 

ME In The News

MEAction. MEAction responds to attacks on ME community in the Guardian and Psychology today.

https://www.meaction.net/2019/08/01/meaction-responds-to-attacks-on-me-community-in-the-guardian-and-psychology-today/

 

General Disability & Chronic Illness

The Guardian. My disabilities are invisible. I shouldn’t have to prove them to strangers.

https://www.theguardian.com/commentisfree/2019/aug/09/disabilities-invisible-prove-stangers-disabled-services-illnesses

Brain Lesion & Me Blog. Chronic Illness and its graveyard of buried hopes.

https://www.brainlesionandme.com/chronic-illness-and-its-graveyard-of-buried-hopes/

The Blast. Netflix Hit With Defamation Lawsuit by the Subjects of the Docuseries ‘Afflicted’.

https://theblast.com/c/netflix-afflicted-lawsuit

 

 

 

Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of.

This is a difficult post for me to publish. I find it hard to assert myself and let people know what I need, and that’s what I’m doing in this post. What I’m sharing here may be hard for non-ME people to understand, and if you’re someone who likes to visit me, it may be a bit of a nuisance to put into practice.

I have no reason to try and put off anyone from visiting me. I want people to visit me, the isolation I live in is a major factor in the decline of my mental health. But there are certain things that I need from my visitors, not because I’m trying to be awkward, but because it otherwise affects my health, sometimes severely. I worry that I may be thought of as being overly pernickety, and if it means I have even fewer visitors, then so be it. My priority is my health. I never feel well, but I want to feel as well as I possibly can, and nothing is more important to me than trying to keep my ME from becoming any more severe, that’s if I even have any control over it. I tend to think that maybe, if I can do all I can to try and minimise my day-to-day suffering, maybe it will affect the longevity and severity of my illness.

Socialising, interacting and communicating with people uses a tremendous amount of energy. This is something I had no concept of until I had ME, and I’m not sure that I can expect non-ME people to be able to identify with this at all. I can cope with visitors every now and then, but not often. Apart from my mum, on average I maybe have an additional visitor every three or four weeks or so, although it’s not unusual for me to go much longer without seeing anyone who isn’t my mum, or a doctor or my counsellor etc.  When I have a visitor, depending on how I feel on the day, I will start to flag and feel my symptoms worsening within an hour, usually after about fifteen minutes or so. But because I crave human company so badly, and I have so little of it, I do sometimes push myself and exceed my limit, knowing I will suffer for it.

It really takes it out of me when I socialise with one person, socialising with two people is even harder, and socialising with three or more people generally results in a bit of a disaster for me. It took me a while to understand what it is that causes my symptoms to worsen when/after I spend time interacting with one person, but I do now, and of course it stands to reason that it will be so much worse with more people. Just being in the presence of another person is harder on me/my energy levels than being alone, even if all we’re doing is sitting together in silence. ME has made me hypersensitive to stimuli outside of my body, including heat, noise, light, scent and movement. So obviously when there are more people, there will be more noise, more movement, etc. This results in a sensory overload for me. It’s additional stimuli for my already overtaxed body to take in. It’s like an assault on my senses.

There are no guarantees, ME does its own thing and I do not want to create the impression that people with ME can control the progression of their illness. It seems clear to me that there are different subsets within the ME diagnosis, and there does seem to be a progressive/degenerative version, which I suspect I have, given my gradual deterioration since the onset. ME is a neurological illness, and it cannot be cured or treated with lifestyle/behavioural changes. However, there are some things that I can do to manage my symptoms and attempt to mitigate the payback, but it’s not fool proof and it frequently doesn’t work (the payback, or crash, officially known as Post-Exertional Neuroimmune Exhaustion, is the worsening of my symptoms after I have overexerted myself).

So, when I have someone visit me, I will do the following – I will rest and do as little as possible the day before their visit and I will have nothing but rest planned for the following day. I will lie down and rest with my eyes closed, in a dark cool room, with my noise cancelling headphones on, immediately before (at least thirty minutes) and after (as long as it takes) their visit, never with the TV on, but sometimes with relaxing music or in silence. I will control the temperature and the light, as best I can. I will ask them to bring the coffee, so I am spared the effort/exertion of making it myself. I will make sure I have no other visitors or medical outings in the days before and after their visit. My visitors may think that for me, their visit begins when they arrive, and ends when they leave. Wrong. The preparation for, and the effects of a visit, goes far beyond that one day.

When I have someone visit me, I have to put so much thought into it, it pretty much has to be planned like a military operation. Every single thing I do has to be risk assessed. I always have to think about how one activity will affect another. My life takes far more careful planning now than it did pre-ME, and it’s what I have to do in order to manage my illness. I cannot just let life happen. My experience so far has taught me that I need structure and routine. I need to know as much as possible, what is going to happen and when. I need my week(s) ahead to be mapped out. Even pre-ME I found that having order in my life was soothing, but since having ME, it’s also become essential for my well-being. Not everyone will be able to identify with this. There are people who do not need or want to live like this, and that’s fine. It’s also fine that I do need and want to live like this. There is no right or wrong way. Take going on holiday for example. I like to get to the airport with as much time to spare as possible, I take the recommended arrival time seriously and if I’m running late I feel anxious and I don’t enjoy it. Whereas some people don’t mind arriving at the airport with little time to spare, rushing through security and arriving at the gate when the plane is already boarding. Neither of these approaches to life are right or wrong, one isn’t better than the other, they’re just different.

So, I’m finally getting to the point of this post. While I do what I can to feel as well as possible and reduce payback after I have someone visit me, there are also things that my visitors can do. I’ve never written about this before because I don’t like to put people out. I would rather be inconvenienced myself, than cause inconvenience for someone else. But now there’s more at stake, it’s not just inconvenience, it’s my health, my symptoms, it’s how my body feels, it’s the difference between a better or a worse day/week for me, and it’s potentially the longevity and severity of my illness. It seems ridiculous that I feel bad for asking what I’m about to ask. I fear that I’ll be seen as being unnecessarily difficult, or precious, and will alienate people as a result. I also worry that people might feel nervous about visiting me for fear of ‘doing something wrong’. But, these are things that would genuinely help me, and I’d like to think that the people who visit me like me and care about me enough that they will be happy to keep them in mind.

Here we go.

When I have a visitor, I need to know in advance what time they plan to arrive, and if it changes, I need to know as soon as possible.

When my visitor hasn’t committed to a time in advance and I’ve only been given a vague window of time for their arrival, the waiting and the anticipation of their arrival uses a great deal of energy, in the days running up to their visit, and on the day itself. More use of energy of course means more symptoms for me.

I have on a few occasions, after waiting for my visitor but not knowing when they’ll arrive, ended up feeling so unwell that by the time they get here, I’ve had to send them away. So we both miss out on seeing each other. It’s maybe an inconvenience for them, but they can at least get on with their day, I however will be paying for the additional (and unnecessary) use of my energy for the rest of the day, and possibly the next day, and the next… The only way I have found to prevent this from happening is to arrange a time as far in advance as possible, preferably at the point of the arrangement being made. It may mean that I see fewer people, and less often, as it’s not necessarily compatible with the lives of the people I know, but I cannot do spontaneity, vagueness or uncertainty.

Here are a couple of scenarios:

  1. A visitor tells me they will be in town on Friday or Saturday the following week, they’d like to visit me and they’ll let me know which day it’ll be on Thursday, and then confirm the time on the day.
  2. A visitor is coming by bus, the bus is due to arrive at 3.30pm and they’ll go to Costa on the way to mine, so they aren’t sure exactly what time they’ll arrive.

Scenario 1 is what I cannot do. On this occasion I will have to tell the visitor that this arrangement doesn’t work for me. If they’re unable to arrange the day and time now, then let’s wait until we find a date that they can.

Scenario 2 is fine. I’m not unreasonable. I know that no one can predict to the minute what time the bus will actually arrive, or how long the queue in Costa will be, or how many people ahead of them in the queue will order those iced blended drinks that take ages to make. In this scenario I can make an educated guess. I know what time their bus was scheduled to arrive, and I know roughly how long it can take when Costa is busy.

It’s probably not surprising to hear that I also cannot do spontaneous visits. I cannot cope with ‘pop-ins’, when people just turn up and knock on my door. I actually don’t answer my door if I’m not expecting anyone. I won’t use precious energy for a Jehovah’s Witness or a courier who’s at the wrong house. There are occasions when I’ve made an exception and accepted a visitor on short notice, like a friend who texts me to say they’re nearby and do I fancy a visit. Of course it very much depends on how I’m feeling at the time, and while it’s rare, it’s not completely out of the question for me to then invite them over for a short visit. So if in doubt, please do still ask, but don’t be surprised if I can’t manage it, and please don’t be offended. When it’s me who reaches out to someone with little notice to ask if they’re free that day/evening , it’s usually when I’m having to prioritise my mental health over my ME, and in the need of company.

While I was thinking about the the whole anticipation/waiting thing, and not quite understanding it, I reached out to one of the ME support groups I’m in and I asked if anyone else experiences this. Of the thirty four replies I got, every single one of them told me that they experience this too. ME is one odd illness.

I need my visitors to be on time, not too early and not too late.

I have to rest immediately before I have a visitor, and if the visitor arrives earlier than planned, my rest will be interrupted and as a result I will manage less time with my visitor and the crash will be more severe. If they are late, well this is similar to the above scenario, the waiting and anticipation will use so much more energy, which will exacerbate my symptoms and I may end up feeling so unwell by the time they arrive that I’ll have to send them away, and I don’t like doing that.

I’m not going to be completely militant about this, it’s not a case of needing my visitor to arrive at 16:00 on the dot or else they’ll be sent away. I appreciate that interruptions do happen. It’s not unheard of to be stuck behind a tractor when driving or on the bus to Peebles. Being in the countryside means cows can escape their field and wander around on the road very slowly and without any urgency to go back to their field. Their phone could ring as they’re leaving the house to come and visit me and they get held up. I know this. I’m really just asking that if anything does happen that could make my visitor late, I’d like them to let me know as soon as they realise, so I can then make an informed decision about whether it would be best to cancel/postpone the visit or not, and I’m not left wondering.

I need my visitors to move carefully and slowly, with no sudden movements.

I’ve mentioned before that I’m hypersensitive to movement, not all the time though, it varies. This sensitivity to movement is why, if a visitor offers to wash my dishes, I might turn down their offer. It’s not out of pride, or not wanting to inconvenience them, it’s because in that moment, I cannot cope with the movement (or noise – see below) within my vicinity.

This also affects my use of the internet. If it’s a worse day, I cannot bear when I’m scrolling down Facebook, or whatever, and a video automatically starts playing. Both the movement, flashing images and/or the noise will trigger vertigo-like symptoms. I recently wanted to watch something on BBC iPlayer, but it had a woman using sign language in the corner of the screen, with no option to watch without it. While it’s very much a good thing that this is available, I couldn’t cope with the movement in the corner of the screen as I tried to concentrate on what I was watching. I thought it was interesting though, that by making something more accessible for one set of people, it can make it inaccessible for others.

Now of course I don’t expect people to stay perfectly still, they don’t have to be statues. I would just like my visitors to be mindful of this and be aware of the effects of wild hand gestures and sudden unexpected movements on my already struggling brain. If it’s the result of a huge sneeze, or anything they have no control over, then of course that’s ok.

I need my visitors to speak at a low volume and not too fast, and to remove their shoes and coats downstairs and leave any noisy plastic bags downstairs.

I am hypersensitive to noise. I have always been sensitive to noise, even pre-ME, my hearing is annoyingly good and unwanted noise (from neighbours for example) makes me very anxious and puts me on edge, it still does, but since having ME, noise actually causes me pain. This is why I wear my noise cancelling headphones all day, apart from when I’m sleeping, when I use ear plugs.

This is one of the trickier ones for me to navigate, because noise is everywhere. My brain cannot cope with noise coming from more than once source at a time. When I’m alone, my headphones help with this, as I can listen to music or watch TV through them, while blocking out (most of) the other sounds around me. But I have to take my headphones off when I have visitors, so I can hear them properly, but it also means I can hear all the other noises – my fridge humming, the radiator, people on the close outside my house, traffic in the distance, birds singing, dogs barking, etc. It’s really difficult to explain how a noise/sesnory overload like this makes me feel, but it’s excruciating. I can feel my body and my mind deteriorating, it’s like – Harry Potter spoiler ahead – you know how when Voldemort dies in the film and he kind of disintegrates, I feel like that is what’s happening inside my body and my mind. It affects my ability to absorb and understand what the other person is saying to me, almost as though they’re speaking in a foreign language that I don’t understand, but they use English for every fourth word. I struggle to process their words and apply any meaning to them. I lose my ability to think and formulate a response. This is basically what brain fog is. Eventually it will also cause me to get a headache, I’ll feel faint (in that room spinning way when drunk), then my muscles and my limbs (especially my upper arms) will begin to ache, and quite randomly my shoulders will begin to ache too.

This is how my visitors can help me with this. If my visitor has a noisy coat (like a raincoat that rustles), I’d like them to remove it downstairs by the front door or in my bedroom, before coming upstairs to the living room. If they have brought us a Costa coffee and a snack for themselves, I’d like them to remove their snack from the paper bag or plastic wrapping, and use a plate, rather than eat it directly out of the bag/wrapper, which will rustle noisily with every movement (these rustley noises are the most painful for me). If they want to show me a video of something online, I’d like them to send me a link, so I can watch it in own time, with my headphones on, rather than play it then and there. I would like visitors to speak as softly as possible and to not speak too quickly, and to please not be offended if I ask them to speak at a lower volume or to slow down.

Again, I don’t expect visitors to be mute. I would just hope they could be mindful of this, and how it affects me, especially when there are more than two of us there.

When I have more than once visitor at a time, I need them to speak one at a time.

This is pretty much covered above. It’s difficult and draining enough for me to concentrate on what one person is saying, it’s so much more difficult when there’s a group of people, and more than one person talking at the same time. When this happens, as well as the symptoms described above, I simply zone out of the conversation altogether, and I may as well not be there.

Because it is a lot harder for me to socialise in groups, I don’t do it often, but sometimes it’s unavoidable, and sometimes I just want to, because it’s fun, and I still want to do fun things, but fun things of course use energy too.

I need my visitors to avoid using their phones in front of me.

As you’ll have gathered by now, I need to keep any stimuli in my vicinity to a minimum. This includes electronic gadgets, mine too. I try to remember to turn my phone over when I have company so I won’t be distracted at the arrival of a reminder or a text message. This goes for my visitors phones too. Any noise, light or moving images that suddenly appear is more for my brain to take in, which uses more energy, and therefore I fade faster. I also find that it divides my concentration, which makes it harder for me to absorb and process information. I find it harder to keep my concentration on the person, when their concentration is on their phone. I’d rather be able to focus my attention entirely on them, when my attention is split, the brain fog and dizziness set in sooner.

I need my visitors to be scent/fragrance free.

This is a newer one for me, and it’s extremely difficult to put into practice. I am now unfortunately very sensitive to scents/fragrances. It’s incredibly annoying for me and for my visitors.

The person I see the most of is my mum. She has had to replace all her soap with fragrance free versions and she can no longer wear perfume. She can’t even wear it when she’s not with me, as it will transfer onto her clothes, and if she re-wears something, forgetting that it’s been in contact with perfume, I will then suffer for it. It makes me feel lightheaded and causes pain between my eyes, my head and the back of my throat in a ‘if this gets worse I’m going to struggle to breath’ kind of way.

I have also replaced my soaps and my washing up liquid with fragrance free varieties. I’m still looking for household cleaning products, I’m sorted with the laundry though as I already use an Ecoegg. I’m keeping hold of my perfumes in the hope I will be able to use them again one day.

This is a really hard one, because it feels completely unreasonable for me to ask people to ensure they are fragrance free when they visit me. I don’t feel I can ask people to change their shampoo, conditioner, soap, laundry detergent etc. I think all I can ask is that my visitors try to keep it to keep it to a minimum, like, not wear perfume if they are seeing me that day, and not wash their hair the morning they are visiting me, etc. They should also be prepared that if they are scenty, I will have to open the window, however cold it is, and I might also have to ask them to leave, if/when it becomes too much for me.

I can’t have visitors who are feeling unwell themselves and are potentially contagious.

ME, as well as involving dysregulation of the central nervous system, also involves dysregulation of the immune system. This means that my immune system is compromised, and I am therefore more susceptible to catching colds, flus, infections etc.

So far I’ve been pretty lucky, I haven’t had that many illnesses on top of my ME, unless I have but I haven’t noticed, which is actually fairly likely. I could have a worse few days or weeks, and not realise it’s because I have the flu or a cold. This happened in 2016, and it turned out I had Tonsillitis, but I hadn’t realised, and I ended up needing my tonsils removed. However, even though I have been fairly lucky up until now, that doesn’t mean I am prepared to take risks.

When I catch a bug it will take me longer to recover, it can cause complications involving my ME, it could also trigger a relapse and it has the potential to push my already severe ME into very severe ME. It is therefore very important that my visitors are feeling well themselves. I cannot have someone visit me if they have some kind of bug, or even if they have that feeling that a cold, or whatever, is on the way.

It’s also important that my visitors practice good personal hygiene, especially if they’ve travelled by public transport or have been handling money, or anything that’s particularly germy. I’m not going to police this, I think I can trust my visitors to know when washing their hands will be necessary, and my bathroom is handily right by my front door, for those who want to wash their hands upon arrival. Also, and this is basic common sense and good manners, I would hope that any visitor I have will always cover their mouth when they sneeze, cough or yawn.

If you’re wondering, I am eligible for the free flu vaccination (the flu vaccine is offered free on the NHS to people in certain at-risk groups, mainly people who are at greater risk of developing serious complications if they catch flu) but I have decided against it. I am by no means an anti-vaxxer, I don’t get the flu vaccine because it’s quite common for people with ME to suffer a relapse after having the vaccination. According to the ME Association… “This could be because research into immune system dysfunction in ME/CFS has found evidence of what is called immune system activation – which equates to a persisting and overactive immune response to a triggering infection. Vaccines are designed to mimic the infection they are supposed to protect against and so they also trigger an immune system response.”. It has been advised that an adverse reaction to the flu vaccine is more likely to occur in people with ME who have on going flu-like/infection symptoms, such as swollen glands, sore throats and problems with temperature control etc, which I do, these are perfectly normal everyday symptoms for me. So I personally have chosen not to be vaccinated.

Shoes off please.

This doesn’t directly affect my symptoms, but it seems a good time to mention it. I prefer people to remove their shoes by the front door before coming upstairs to my living room, or my bedroom etc. This is because, any dirt that gets trailed in, after their visit, I won’t be able to clean it up. Vacuuming is out of the question for me as it uses so much energy, I don’t have the strength to hold the vacuum cleaner and I can’t stand for long enough. But if anyone has a genuine need to keep their shoes on, they won’t be banished, I’ll just ask them to give their feet an extra good scrub on the doormat.

The Science!

Since I’ve been writing this post I’ve been doing some research to try and find some articles to share that may help explain these particular symptoms. I found two, one is about the dysfunctional autonomic nervous system in people with ME, and the other one is about a neurological process called sensory gating, which I had never heard of before. I have shared some excerpts from each article below, to read them in full, just click on the title of the article.

This document created by The ME Association explains why stimuli outside the body, such as noise, heat or emotional stress, causes the reaction that it does.

The Dysfunctional Autonomic Nervous System in ME/CFS – The ME Association

Altered autonomic nervous system (ANS) functioning has been frequently reported in patients with ME.

The nervous system spans the whole body, connecting all our organs and tissues with each other and the brain, sending messages between them. It is split into two systems: The central nervous system and the peripheral nervous system. The autonomic nervous system (ANS) is the involuntary branch of the peripheral nervous system. Involuntary means that it controls most of our unconscious actions, that, most of the time, we aren’t aware are happening; such as breathing, digestion and the beating of our heart, so it’s like an auto-pilot system.

The ANS has influence over muscles and glands throughout the body and controls a whole range of things, including heart rate, breathing, salivation, digestion, perspiration (sweating) and urination. The ANS is further subdivided into two opposing sections; the sympathetic and the parasympathetic nervous systems. These two divisions have a sort of yin-yang relationship; they both act on the same parts of the body but produce completely opposite effects.

The sympathetic nervous system (SNS) likes to speed everything up (get you ‘hyped’) and is best known for stimulating the ‘flight or fight’ response, having effects such as increased heart rate, increased breathing, dilated pupils, slowed digestion, and increasing blood-flow to the muscles in preparation for movement. On the other hand, the parasympathetic nervous system (PNS) likes to calm you down (relax you)
and is known for the ‘rest and digest’ response, having opposite effects to the SNS, such as slowing your breathing, reducing your heart rate, constricting pupils, and encouraging digestion.

When in balance, these two systems work together well in the body. However, they are selfish systems as when one is working, the other one cannot; one must be  switched off’ in order for the other to work – they cannot both work at the same time. Understandably, the sympathetic nervous system is very energy demanding, whilst the parasympathetic nervous system, is energy conserving.

ME/CFS patients tend to have reduced parasympathetic activity, and increased sympathetic activity, known as “sympathetic nervous system predominance”. This same ANS dysfunction is seen in healthy people after engaging in acutely fatiguing tasks, and the lack of parasympathetic activity appears to correlate to feelings of fatigue. The difference is that in CFS, the ANS dysfunction happens after much lower levels of stress or activity.

In simple terms, people with ME/CFS are hyper-sensitive to anything from infections and pain within the body to stimuli outside the body, such as noise, heat or emotional stress. The body is stuck in a high-alert – ‘we need to defend ourselves from all threats’ – mode (otherwise known as the ‘fight or flight response’, stemming from the sympathetic nervous system).

Naturally, being on a constant state of high alert, quickly drains the body of energy and can result in other problems, such as gastrological symptoms, as digestion is not a priority in this state. The sympathetic system puts many organs and processes into overdrive and deprives other areas of blood and oxygen, so this is not an ideal state to spend most of your time in!

This is a guest post from the Health Rising website in which the author sets out a hypothesis for a single neuroinflammatory process as the core pathophysiology underpinning ME.

‘Sensory Gating’ – A Key to Chronic Fatigue Syndrome (ME/CFS)? – Health Rising

First a short questionnaire….. Would you agree or disagree with below statements?

  • My hearing is so sensitive that ordinary sounds become uncomfortable
  • There have been times when it seems that sounds and sights are coming in too fast
  • It’s not bad when just one person is speaking but if others join in, then I can’t pick it up at all. I just can’t get into tune with that conversation
  • There are days when indoor lights seem so bright that they bother my eyes.
  • I have more trouble concentrating than others seem to have
  • I seem to hear the smallest details of sound
  • When I’m tired sounds seem amplified

These statements are taken from a questionnaire developed to assess problems with something called ‘sensory gating’. If you answered yes to several of these or other similar questions you could have problems with sensory gating.

“Sensory gating describes neurological processes of filtering out redundant or unnecessary stimuli in the brain from all possible environmental stimuli. Also referred to as filtering, or sensorimotor gating, sensory gating prevents an overload of irrelevant information in the higher cortical centres of the brain” Wikipedia

Three common phenomena that may be disturbed if there is a problem with sensory gating are ‘the Cocktail Party Syndrome’, the ‘Seat of the Pants’ phenomenon and the ‘Startle Reflex.’

In the ‘cocktail party syndrome’ it’s difficult to carry on a conversation with in a room because we have difficulty filtering out the noise of others. In the ‘seat of the pants’ phenomenon we have difficulty attending to the outside world because nerve impulses signalling the body is in contact with a surface don’t get filtered out as they should.

If we hear a loud bang we jump but if the noise is repeated several times and nothing untoward happens then eventually we learn to ignore it through a process of habituation and it becomes just so much more background noise. However, if our brains keep attending to the jackhammer or the door shutting or banging or whatever, again we don’t have much room left to attend to what’s in from of us.

It’s easy to imagine the ‘information overload’ if all these signals and others, reached the conscious mind on an on-going basis.

An important point to note though is that these mechanisms operate at the pre-conscious level. For example a sudden loud noise will elicit a startle response regardless of whether or not we had previously identified the noise as dangerous or harmless. It also appears that the strength of the startle response varies between individuals.

It may be hypothesised that ME/CFS patients, if tested, would show a deficit in neurological sensory gating and that this gating deficit may give an insight into many of our common and not so common symptoms.

So, if I’m right, when I am overstimulated due to my hypersensitivity, my body gets stuck in this state of ‘high alert’ or ‘fight or flight’. Being in this state drains my body of energy and puts my organs and processes into overdrive while depriving other areas of blood and oxygen. I feel worse as a result. It doesn’t explain why I feel worse when I’m waiting for someone, but it’s maybe something to do with the feeling of anticipation, which could maybe create this state of high alert. But I’m no scientist, I could be wrong.

Almost Finished

I hope that what I have shared in this post will prove helpful for those who visit me. It’s basically just me asking my visitors to be mindful of the things I need to remain as well as possible. Of course ‘well’ is a relative term here, I’m never well, but you know what I mean.

I’m so grateful for the people who do visit me. I enjoy their visits, I’m unable to go to them, so when they come to me, they provide me with little pockets of real life. When I’m with non-ME people I like to hear about their lives. I know some people with ME find it really difficult to hear about what their healthy friends and family are doing, and I get it, I feel that too, but more often than not, I find these visits make me feel more connected to the outside world.

I also want to it to be known that it’s not always easy being a friend or family member to someone with severe ME. It’s especially hard on the immediate carer(s), but it’s also hard on everyone else in their life. My hope is that, by explaining why I have to do things a certain way, it will help my visitors to understand that if I ever have to cancel a visit, or turn down an offer of a visit that was made on short notice, or cut a visit short, it’s never personal. ME dictates everything I do, there’s no ‘fighting’ this illness. My best hope of feeling better is to give in to my illness. This doesn’t mean giving up, it means listening to my body. It means resting when my body needs to rest, to have silence when my body needs silence, etc etc. I hope that by aiding my visitors in their understanding, when I do have to cancel a visit, or whatever, they will be able to deal with it graciously, because they’ll know that I’m not saying “I don’t want to see you”. I’m simply doing what my body needs me to do, to allow it to feel as well as possible and hopefully one day regain some function and improve my quality of life.

 

NEWS

Springer. Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

https://link.springer.com/article/10.1007/s11682-018-0029-4

Stat News. The NIH is thwarting research on a poorly understood yet serious condition

https://www.statnews.com/2019/01/10/nih-obstacles-thwart-myalgic-encephalomyelitis-research/

Sage Journals. Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome

https://journals.sagepub.com/doi/abs/10.1177/2058738418820402

Health Rising. Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/

Health Rising. Not Fatigue After All? New Model Suggests Other Symptoms Better Explain Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2013/01/17/not-fatigue-after-all-new-model-suggests-other-symptoms-explain-chronic-fatigue-syndrome-mecfs-better/

Simmaron Research. Could the Gut Cure Neuroinflammation? An MS and ME/CFS/FM Inquiry

http://simmaronresearch.com/2019/01/gut-cure-neuroinflammation-m-s-mecfs-inquiry/

The ME Association. US study of onset patterns and course of illness in ME/CFS 

https://www.meassociation.org.uk/2019/01/mea-summary-review-us-study-of-onset-patterns-and-course-of-illness-in-me-cfs-29-january-2019/?fbclid=IwAR0d0-az2FwWdoRm31B19IuNcXhss6-i24oDz6nGBhndMONCzLMVu6wmOKc

Health Rising. The Hummingbird: Could a Blood Flow Enhancer Help With Fibromyalgia, POTS and ME/CFS?

https://www.healthrising.org/blog/2019/01/29/hummingbird-fibromyalgia-pots-chronic-fatigue-syndrome/

Health Rising. Hypocapnia Cerebral Hypoperfusion: New Kind of Orthostatic Intolerance Points to Key Factor in ME/CFS and Others

https://www.healthrising.org/blog/2019/02/01/hypocapnic-cerebral-hypoperfusion-orthostatic-intolerance-chronic-fatigue-syndrome/