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 Twenty Six. How Having ME Has Affected My Mental Health.

I would like to warn you that this post may be triggering to those who have experienced suicidal thoughts.

I feel like this post is a bit all over the place. I’m currently struggling to put my thoughts in order, and I keep going back for further edits. I have so much to say, and so much I’m scared to say, but I feel that it’s important to be honest about how having ME really affects me. I often feel I’m a failure for succumbing to depression since having ME, but the more I share, the more I hear from others who are in the same situation, and that makes me feel like I’m maybe not quite so crazy after all.

I’ve become used to sharing details about my life with ME, and I want to become used to sharing details about my depression and anxiety too. They all have stigmas attached, they needn’t and they shouldn’t, but they do, and the only way I can see to remove the stigmas attached to these illnesses is to normalise them, and that means talking about them, and how they affect me. I love what Geroge Monbiot said in a recent-ish article in The Guardian about his prostate cancer diagnosis…

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

I love that, “name it, normalise it, socialise it.”. I think that can be applied to ME, depression and anxiety, and any stigmatised illness. The attached stigma, the misunderstanding, the shame, the mystery, will diminish when it becomes a topic of daily conversation. So I plan to do that, here and in person, no matter how uncomfortable people are to hear it.

It’s not at all uncommon for people with ME to develop depression and/or anxiety. I always feel quite amazed when I hear from someone with ME who hasn’t had it impact heavily on their mental health. I would be one of those people if I could. But just as I can’t ‘just stop’ having ME, I also can’t ‘just stop’ having depression or anxiety. This seems to be a difficult concept for some people. They can say they understand, but then their lack of understanding can jump out at me during conversation. When talking to people about how my depression or anxiety is affecting me, I’ve been told “you just need to not let it upset you” or “you just need to stop worrying about that”. But would the same people say, about my ME symptoms, “you just need to not let that migraine hurt your head”? I don’t think so. ME gives me symptoms. Depression and anxiety also give me symptoms. That’s how it is.

Right now, one of my main obstacles (symptoms) is, what I call, the nervous dread. It’s the feeling of fear that I often get, and is the exact same feeling that I had as a child when I woke up terrified after a nightmare, except now, the nightmare is my life, and the feeling can last for days at a time. What comforted me as a child, when I woke up after a nightmare, was to crawl into my mum and dad’s room, make a little nest on the floor with my quilt and go to sleep there. That helped me because I knew I was safe, that I had someone looking out for me and that I wasn’t alone. This feeling of dread is often how my anxiety and depression manifests, and I (and my counsellor) believe that it basically stems from the same place, the fear of being alone, forgotten or abandoned. I don’t just mean the literal isolation that I live in, or the fear of being abandoned and forgotten by the people in my life, although that affects me deeply too. I’m also talking about the general lack of understanding about ME as a whole –  the lack of funding for biomedical research, the lack of support from our healthcare providers, the lack of recognition by our governments and our media that ME is a serious, disabling and life-threatening illness – this too all makes me feel abandoned and forgotten, invisible.

It’s not just ME, depression and anxiety are vastly misunderstood illnesses too. I used to be one of the people who didn’t fully understand depression, but I’ve never disbelieved anyone. When someone told me how their depression affected them, I can’t say I always understood it, but I believed them, because why on earth would someone lie about that? I’ve had people confide in me about suicidal feelings, before I ever felt such things myself. The first time I had no idea what to say, I just had to wing it, I sensed that my friend needed to talk, so I let them talk. I think, I hope, I handled it sensitively. I always think about what my words mean to others, I never want my words to hurt anyone. Importantly, I didn’t tell them how they should be feeling. I never tell people what they should feel, people tell me what I should be feeling, a lot. When I tell people about my fear of never being well again, for example, I’m told I should be more positive and feel hopeful. Why? Why, for a moment, can I not just feel what I feel? Are people with incurable illnesses, who are unable to live the life that they want, who have had everything stolen from them, never allowed to feel despair, or grief, or sadness, or frustration, or anger? Sometimes it seems, apparently not, and when we do, we must keep it to ourselves.

I have a huge amount of fear about never being well again. I do not want to live the rest of my life as I am now. Most of the time I keep it to myself, but sometimes I want to talk about it, and cry about it, I want to be able to talk about what scares me. But more often than not I’m met with ‘but there will be a breakthrough one day’ or ‘they will find a cure’. Really? You know that for sure? You’re 100% certain about this? The fact is, not all illnesses have cures. Not everyone who gets ill, gets better. People die from illness all the time, sometimes quickly after an aggressive illness, sometimes slowly, after decades of a malingering chronic illness. To reach some sort of acceptance about my life with ME, I need to accept all the possibilities, and one of them is never getting better. To be shut down when I try to talk about this only adds to my isolation, and loneliness, and as a result, my depression worsens.

When people insist that I will get better, it can be really hard to hear, it makes me feel so much pressure, because if I don’t get better, then somehow it must be my fault. I would love it if people, when saying this, would also acknowledge, in the same conversation, that I might not get better. Being hopeful is fine and good, but also be realistic, acknowledge my life, don’t erase me, my suffering or my fears. No one knows if I will recover or not, no one. It’s entirely possible that I will not, and when I talk about that, it’s my attempt to try to normalise it, to accept this, it doesn’t help to then be shot down. Once I’ve accepted it, then I can work on making my life, as it is, as meaningful and fulfilling as possible. I cannot spend my life clinging on to a potentially false certainty that a cure will be found, because if that doesn’t happen, I won’t be able to handle the devastation. I’d much rather learn to live my life, as it is, as well as possible, and one day, hopefully, maybe I’ll be surprised with the news that there is a cure, or a treatment that works, but I cannot pin all my hopes on that, it’s simply too much pressure for me to cope with.

How I feel (mentally) is often, unfortunately, and unhealthily (I think), at the mercy of other people. My illness has caused a lot of the people in my life to drift away. I’ve been left with very few people I feel close to, and I’m constantly worried about losing them too. Because of my anxiety, and due to living in this bubble, with too much time to think, any perceived (by me) slight from one of these people is magnified by a million, I obsess over it, to a scary degree. If I extend an invitation to someone to visit me, for example, and it’s ignored, the reasons why will consume me. My paranoia will take hold and it will eventually lead me to a very dark place. But it is important to state that no one is responsible for me feeling like this, it’s not even me, it’s the illness. I don’t want anyone to feel they have to distance themselves from me, for fear of triggering my mental health problems. My depression and anxiety will find a way, when they want to, and they often do pop up with no obvious trigger whatsoever.

People are also what I need, when I’m at my lowest, in order to survive. I can’t speak for everyone, but, there’s this myth that you can’t speak about suicide to someone who has suicidal feelings. Like, if you mention it, it will suddenly give them ‘ideas’, but the thing is, those ideas are already there. The word ‘suicide’ itself, does not make me suicidal. I only feel that way when my depression is at its worst, at the moment, it’s happening roughly twice a month (I think severe PMS may play a part). The rest of the time, I can feel low, without feeling actively suicidal, but I do spend a lot of time thinking about my own death, and hoping for a natural death, my escape from ME. When I am thinking about doing it myself, and wishing I had ‘the guts’ to do it, it becomes overwhelming, and what helps me get through it, is talking about it, in that moment, that’s what generally diffuses it. Sharing how I’m feeling, however ugly, scary, upsetting or uncomfortable, with someone who cares about me, whom I trust, who can make me feel less alone, is what helps me through it. I think people worry that they won’t know how to respond, that they won’t have a solution, that they won’t know how to ‘fix me’. But they don’t need a solution, I’m not asking for a solution, or to be ‘fixed’. Just be there, just listen, just let me talk about how I feel, tell me you’re here for me and that I’m not alone, let me cry, let me feel I’ve been heard, tell me that what I’m feeling is ok and that you understand. I need people who will willingly give me their time, who will accept me and all the elements of my personality that make me ‘me’, people who can be patient with me, especially if I need to go over and over the same conversation, people who can be kind to me when my depression and anxiety are making me be unkind to myself.

Ultimately I try to remember that when I feel this way, I must not make a permanent decision based on what is likely a temporary feeling. With that and the fear of it going wrong and ending up worse off, and the thought of someone having to find me afterwards, is what has stopped me so far. But it’s an incredibly painful battle each time, it’s the worst thing I’ve ever experienced in my life.

What I just said about needing people to accept me and all of the elements that make me, ‘me’. This would include not telling me, when I’m in a pit of depression or an anxiety spiral, that I’m ‘too sensitive’, for example. I am a sensitive person, but I’ve come to learn that that’s not a bad thing. I’ve grown up with people telling me that I’m ‘too sensitive’, and it’s always come across as accusatory, or derogatory, so I used to think it was something to feel ashamed about, that it made me weak. But this is actually a really important part of who I am, and I wouldn’t change it. I’m able to tune into and understand my feelings, and it helps me tune into the feelings of other people too, it’s what gives me empathy. I would like it if this sensitivity didn’t impact as heavily on my anxiety and depression as it does, and this is something I am working on with my counsellor. For example, I’m very sensitive to how my actions affect others, when I find out that I’ve hurt someone, it hurts me, deeply. My anxiety will then take hold of me, I’ll agonise over it for days, weeks, months or years (I can still feel anguish over things that have happened decades ago), and it won’t let me move on until I have resolved it. It’s exhausting, it prolongs the upset, it keeps my body in a constant state of fight or flight, and that impacts heavily on my ME symptoms.

I asked my counsellor recently, in desperation, how I could stop letting things that upset me, upset me. This led to a conversation that actually resulted in me feeling a lot better about who I am. I can’t just change the things that make up the elements of who I am, and I certainly wouldn’t want to erase my sensitivity completely, not if it meant losing my empathy. I like empathy. I think it’s a highly admirable quality, and it’s the quality I value the most in others. I’m not suggesting that I’m better than anyone else, or anything. But I have always considered what my actions, or my words might mean to another person. One of my faults is that I tend to expect the same from others, and I judge them for not living up to my high standards, and the only person who gets hurt by that, is me.

Anyway, It’s not surprising how frequently people with ME develop depression and/or anxiety. We’re grieving for everything that we’ve lost, and the grieving process works the same way whether it’s due to the loss of a loved one or the loss of your health. I’ve grieved for people, I know what that’s like, I still feel pangs of grief when I think about my dad. When it’s unexpected, like when I come across an old photo, or I have a dream about him, I get a jolt of emotion that rushes through me, often picking up other memories and feelings on the way. I can think I’ve been doing ok, in terms of my dad grief, but I can very quickly turn into a panicked sobbing wreck when triggered unexpectedly. And he died ten years ago (it was ten years on 4th June). I’m still a newbie in the ME world, four years in, and I’m still very much dealing with the loss of my old life, and the loss of everything that I thought my life could become. I can be having an ok day, where, despite the sheer shittiness of my illness, I can be feeling fairly calm and content with what little I have. But then, BAM, something comes along that triggers the grief and throws me off course. I’m talking panic attacks, hyperventilating, the nervous dread and when it becomes too overwhelming, and when I feel that I’m dealing with it alone, suicidal thoughts. Sometimes the grief makes me curl up into a ball and just cry and cry, sometimes I just want to tear the room apart with pure rage and anger, sometimes it just renders me numb, flat, completely emotionless, and sometimes it makes me want to die.

For a while I really thought I was doing so much better, in terms of accepting my illness. But I’m not doing well, not at all. It’s kind of been compounded recently due to the payback I’ve been suffering since Iceland and also with my current PIP (Personal Independence Payment – a UK disability benefit) application. At the moment I’m trying to cope with the knowledge that this particularly bad relapse is probably due to my own decisions. The trip to Iceland to see Sigur Rós, going to my mum’s house for three hours to spend time with my family for a belated Christmas celebration only four days after returning from Iceland, then the screening of Unrest just thirteen days after that. The trip was at the end of December, and I still haven’t returned to my pre-Iceland levels of ME, and I don’t know when or if I ever will. Some ME relapses are permanent, and right now, I’m trying to deal with the fact that I may have done this to myself. This has caused what I can only describe as a shitstorm of emotions and symptoms; grief, anger, guilt, hopelessness, anxiety spirals, panic attacks, and suicidal thoughts. All of this emotional over-exertion of course impacts on my ME, and causes those symptoms to worsen. When this happens I wish I could talk my way out of it, but I just can’t. It’s actually entirely rational, to grieve over the loss of ones own life, whilst still being alive. I do believe that feeling these feelings will help me on my way to acceptance, more so than repressing them anyway.

My PIP application. I’ve put this off since 2015, my first attempt was just so traumatic, but I need the money, and I am eligible, it’s just a matter of convincing the people at the DWP. I haven’t received the ‘How your disability affects you’ form yet (I requested it two weeks ago) but in the meantime I have been preparing for it. This means I’ve spent a lot of time thinking, in depth, about how my illness affects me, which is the exact opposite of how I usually try to cope with this. I’ve lost my independence and my freedom, I do not live my life as I want to, I don’t even live where I want to. My entire life is now entirely about compromise and adaptations, based around my ME. I’ve made so many adjustments to my life in order to manage my illness. I’m used to the fact that I now only wash once per week, rather than once per day, as I did pre-ME. I’m used to the fact that I only eat twice per day, rather than three times per day, as I did pre-ME. I’m used to the fact that I can’t leave my house every day, as I could pre-ME. My day-to-day life is now built around my limitations, and sometimes, I feel quite proud of the way I’ve adapted. My life now, while completely unrecognisable when compared to my pre-ME life, is simply, my life. It is what it is. But now, as forced by my PIP application, I have to really think about how my illness affects me, and not in a ‘I’m proud that I’ve adapted’ kind of way, but in a ‘bloody hell this is thoroughly depressing, my life is total shit, I can hardly do anything anymore’ kind of way. I used to manage sixteen hours of non-stop activity during a day, now I struggle after fifteen minutes of activity. My capacity for doing stuff is now around 10% of what it was before I was ill. When writing it down for my PIP form, and explaining why I can only wash once a week, and how it affects me, it’s nothing to feel proud of, it’s depressing. When I write about why I can only prepare two meals per day, it’s depressing. When I explain why I can’t leave the house every day, it’s depressing. I expect this has a lot to do with the current state of my depression.

I mentioned the isolation. This is a huge factor in the state of my mental health too. I’m an introvert, I enjoy my own company and before ME came along, solitude was a choice for me, a luxury, even. But my depression and anxiety have turned me into someone who fears to be alone. When I get this nervous dread, I panic at the thought of having a day without human company. But I also have severe ME, so I don’t have energy to interact with humans every day, when I do, my ME symptoms worsen. So it’s a constant unwinnable battle between my ME and my mental health. Even with my introverted tendencies, I/humans need interaction with other humans, real life interaction. Social media is great, but it doesn’t compensate for the lack of real people in my day-to-day life. Add in the fact that I spend my days in the dark, because I’m sensitive to light. I also spend my days in an artificial silence, always wearing either noise cancelling headphones or ear plugs, because I’m hypersensitive to noise (and I currently have some rather loud neighbours, human and canine). I’m either huddled alone in bed, or alone on the sofa. Maybe I could cope with it a bit better if I could get lost in a book, but I have brain fog, I can no longer follow a story line, I can’t retain or process new information. I tried audio books but I can’t cope with them either, I simply don’t possess the required levels of concentration, my wreck of a body cannot produce the energy needed. Who knew, before I had ME, that reading, something I did every day, getting through roughly one novel per week, could one day be an impossibility. I have loads of TV shows and films in my Netflix and Amazon Prime watch lists, but at the moment I can only watch what I’ve seen before, because I can’t keep up and follow new story lines. I have a few TV shows that I keep on reserve for easy watching –  Grey’s Anatomy, The Big Bang Theory, 24, Parks and Recreation, Gilmore Girls, Little House On The Prairie, Gossip Girl, Friends… Re-watching these shows, as well as helping me to pass the time, I find it comforting, the familiarity of the characters. It’s the closest thing I have to going to work with the same people every day.

I’ve mentioned before that I’m a member of Dignitas (a Swiss non-profit members society providing assisted/accompanied suicide to members of the organisation who suffer from terminal illness and/or severe physical and/or mental illnesses). Dignitas, for me, is a separate topic, it’s not about depression, I actually became a member before I had depression. It is not based on fleeting suicidal feelings or fluctuating depressive episodes, it isn’t a knee jerk reaction, it’s not something I can’t understand, it is not something that scares me. Even when I’m feeling at my best, both in terms of ME and my mental health, Dignitas is still an option, and a rational option at that. If I decide to go this way, it will be based on rational and careful thought and discussion with my GP and counsellor. I won’t even get the provisional green light from Dignitas if they don’t trust my decision and believe me to be of clear and rational mind. Knowing that that Dignitas is there gives me comfort. The application process is daunting though, in terms of the paperwork, and it’s expensive. Just to make the initial request, that may be turned down, costs over £2000. Some people make that request and pay the money, get the provisional green light, but not follow through. Apparently, gaining that initial green light, can provide an additional layer of comfort, that allows people to keep going, knowing they do now have that option. That might be an option for me too at some point. I do think, when/if the time comes that I simply do not want to carry on with my life as it is, Dignitas is a much better option that suicide by my own hand, and so much easier on those who are left behind. Ideally, assisted/accompanied suicide will one day be legal in the UK, or Scotland, but I can’t see it happening anytime soon, the UK are rather behind, when comes to some things.

At the moment, in terms of ME, there is a feeling of potential change in the air. The film Unrest and the charity #MEAction have done so much for the awareness of ME worldwide. My mum attended the Invest In ME Research annual conference last week and heard some of the most prominent scientists in the field of ME research speak, she said there was a feeling of hope in regards to the current biomedical research. The NICE (The National Institute for Health and Care Excellence – the UK Department of Health organisation who provide guidance on the appropriate treatment and care of people with specific diseases and conditions) review of the ME guidelines is on the horizon, and will be completed by 2020. My fellow #MEAction Scotland volunteers met with the Scottish Parliament Petitions Committee today to discuss our recent petition (online and on paper we ended up with around 7000 signatures!) in which we are calling on the Scottish Government to review the level of support for people with ME in Scotland, in terms of biomedical research, education for healthcare professionals and specialist care for patients (the link to watch this is at the top of the NEWS section below). Some MP’s, including Carol Monaghan, recently put forward a request to the House of Commons Backbench Business Committee for a full debate about ME in the Main Chamber at Westminster. This has now (kind of) been granted, not for the Main Chamber, but for a three hour debate about ME treatment and research in Westminster Hall. Hopefully this will lead to a debate in the Main Chamber of the House of Commons in the Autumn.

So there are people doing things, and I want to feel hopeful, but so have the people who have been living with ME for decades, and seen no change. It is possible that biomedical research will find the cause of ME, to then find there is no cure. It is possible that the NICE review won’t in fact change everything, or they may change the guidelines for the worse. It is possible that the Scottish Government and Westminster will continue to neglect people with ME. We still have a long way to go and I want to be able to hang on, but I don’t know how long I’ll be able to. I don’t want it to, but I’m currently living knowing that my depression may one day ‘get me’. At the moment I’ve told myself I can’t go anywhere before the NICE review in 2020. I like to give myself a date, something firm in the diary to cling on to. The NICE review might just change things for the better for people with ME in the UK, and I at least need to live to see what happens there. Hopefully by then, I’ll have found something else to live for, I’ll have managed to find meaning in my life, I’ll have found somewhere to live that makes me happy, comfortable and settled (and with less need for noise cancelling headphones), and hopefully I can keep that going, and keep pushing back that date in my diary, at least until I’m an old lady with lots of cats.

When I do die I want my body to be utilised for ME research. If you live in the UK, this is how you can help progress ME research after you die. The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and their aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research. Learn more here:

http://www.meassociation.org.uk/research/current-research/post-mortem-tissue-bank/

Follow these links to mind.org.uk to learn about depression and anxiety.

Depression

Anxiety

 

NEWS

The Scottish Parliament Public Petitions Committee hear evidence from Emma Shorter and Janet Sylvester of MEAction Scotland and Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and Deputy Chair of the UK CFS/ME Research Collaborative.

https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10%3A10%3A46&clip_end=10%3A55%3A21

Futurism. Scientists are now calling the link between depression and inflammation caused by a faulty immune system definitive. Whether it’s causal or not, the connection opens up new avenues for treatment, and new hope for sufferers. 

https://futurism.com/researchers-depression-may-be-a-physical-illness-linked-to-inflammation/

ME/CFS Research Review. A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University, where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS.

https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/amp/?__twitter_impression=true

The ME Association. Inquest Ruling: Young drama student Merryn Crofts killed by ME.

http://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/

The Times. ME sufferer who was dismissed as hysterical vindicated in death.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w

Health Rising. The Migraine Drug Explosion Begins: Could Fibromyalgia and ME/CFS Benefit?

https://www.healthrising.org/blog/2018/05/19/migraine-drug-explosion-fibromyalgia-chronic-fatigue/